Inspired by Lizzie's trip to the Royal Marsden and many of your blogs I thought it would be interesting and insightful to start a blog train. Would anyone be willing to list their NHS Trust, the Treatment they've received and any Comments? I'll start by responding to my own Blog!
Which NHS Trust - What Treatment?: Inspired by... - My Ovacome
Which NHS Trust - What Treatment?
Written by
Whippit
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129 Replies
•
Cardiff and the Vale NHS Trust (Wales)
Stage 3C
6 Treatments Carboplatin
Admin error meant I didn't get Paclitaxol
Mine is Southend Hospital, in Essex Cancer Network (Not sure which trust!)
I'm probably out of date now! I still attend the support group as a COPES supporter and my ECN survivorship and NSSG meetings on behalf of patients (ROCC) so I get to hear a bit about current treatment options. My treatment was nearly 10 years ago, but was radical hysterectomy and omentum removal, with follow-up internal and external examinations monthly at first then 3 monthly, then 6, then yearly, and CA125 for the first 5 years. They now do chemo first I think, to shrink the tumour and then surgery afterwards in some cases. Mine was borderline, so I didn't need chemo. Hope that helps!
Love Wendy xx
Hi Wendy, I am new here, and I have a question: my tumor was said to be borderline, with isolated bad cells, it was large, but they didn't do chemo first. Still after hysterectomy, they did suggest some chemo. I didn't think they did that for borderline, so I'll go for a second opinion. Any ideas? I was encouraged by what you said, that you didn't need chemo. Very reluctant of doing that. Thank you so much, and the best of health to you!!
Hi, I'm sorry you have had this diagnosis. It's always a shock isn't it? However I'm glad that yours was said to be borderline. My op was nearly 14 years ago now and I'm told the guidelines have changed since then. They're much more likely to suggest a short chemo course to make sure they've removed any trace of cancer. My surgeon was fairly sure he'd 'got it all out' but I was still worried it would come back. However, so far so good. There's a good fact sheet on the resources section of ovacome.org.uk. Maybe it would be worth your while giving the nurse on the helpline there a ring to ask if it's standard procedure to give a short chemo course after a borderline diagnosis nowadays. They're much more up to date with info than I am. However, it seems the outlook is good for you. May you continue to do well.
Love Wendy xx
Thank you so much for your reply and encouragement, Wendydee. So glad you have been well. 
I will try the helpline by all means. Best of health to you.
Essex and Suffolk, out- patients Colchester General, Chemo Essex County (6 carboplatin) Two operations Ipswich Hospital, will be having more chemo starting Wednesday, Have had wonderful care from all. Love Sue x (dont know if you would like more details ?)
Dear All Thanks for the posts so far. The idea is just to have 1 massive blog list of what's available so everyone can use the information to argue the case in their own area in the knowledge of what is offered elsewhere. It's very clear that there are wide discrepancies across the UK.
Belfast Health and Social Care Trust. Referred on to them from local Trust after CA125 results.
Total hysterectomy, omentum and appendix removed Sep 2012
Stage 1a clear cell
6 rounds of Carboplatin. Taxol discussed but not recommended.
Currently on 3 monthly check up regime starting next month. I think they will do CA125 routinely but only do CT scan if results are elevated or if I have other symptoms.
Linda
Whippit• in reply to
Dear Linda, thanks for posting on my blog-train. The Paclitaxol debate is interesting. Apparently it only does 1/10 of the work but has disastrous side-effects - not only hair-loss but also numbness in the feet which can be quite bad and makes it difficult to walk. After 2 sessions of Carbo-platin only my oncologist shrugged her shoulders at the admin mistake and said that I seemed to be doing OK on carbo-platin alone.
Marsden in London
carbo/taxol before and after op to remove one ovary and tube.
3 months later, hysterectomy, omentectomy, and the lymph nodes removed.
currently having 6 cycles of chemo
xx
Wow, you had lymph nodes removed. My Gynae Oncologist mentioned this but said her supervisor said it would be dangerous. Perhaps you had nice big clusters they could get hold of! Still makes me think it's worth referring myself to the RM for a second opinion. Thanks for the post. Good to get an overall picture. x Annie
Hi
I'm at the Marsden too.......was diagnosed March 2010...like u I had 3 chemo, surgery.....total hysterectomy, appendix removed, omentum etc, I was stage 3c, then 3 more chemo, carbo/taxol. I had 14 months in remission then last November started 2nd line treatment....again carbo/taxol, but had 7 chemo this time. Am on 3 month check ups...next one 12th June!!!
Royal Preston NHS Trust Lancashire
Total Hysterectomy and omentum removal.
6 cycles carboplatin.
Was on 3monthly check ups now on 6 monthly.
Sue x
Thanks Sue, I hope this might provide a set of data by which we can compare notes, consult one another and then argue our case, if need be, for the treatment we need. My GP said recently that it's sad but those who shout the loudest get the best treatment. So if we're going to shout it's good to be well-informed. Xxx love Annie
Dear Suse, do you know why they decided to give Carbo-platin only? I was told because I had only one chemotherapy that they could give a stronger dose of carbo-platin, but now I know more I wonder whether that will cause me to become resistant sooner. Mine was Stage 3c. Non-differential tumours which respond quickly to Carboplatin and then have a tendancy to return quickly. Just waiting for my 6 month check up and feel fine so far. Fingers crossed. You sound as though you're doing well. Best wishes. Annie
Mine is complicated (just like me) 
In Worcestershire we access 2 trusts.
My oncologist is based at a Royal Wolverhampton Hospitals NHS Trust, but the chemo is adminstered here in Worcestershire at the Worcestershire Acute Hospital Trust and he runs a clinic here once a month.
1) Debaulking at a Royal Wolverhampton Hospitals NHS Trust Hospital
2) 6 cycles of carboplatin/taxol - no action after CA125 rose after cycle 3 only treated again once symptomatic and scan showed clear progression.
3) 6-8 cycle of caeylx (abandoned after cycle 3)
5) Hoping for 3rd line Rotterdam Regimen on advice of London Professor - waiting to see when and where I can get it adminstered.
I was offered a phase 1 trial at Wolverhampton if my cancer was the correct type - but I did not qualify.
Love Lizzie
X
Dear Lizzie, thanks for adding your comments to my blog. I realise that most people have posted but not in one place where we can access all the information and then perhaps contact one another for support. I'm really looking forward to hearing the good news that your regime is starting and to hearing how you get on. Good too you have a contact on the site who's on the same regime as it'll be a support for you both. xx
Bath Royal United Hospital Trust
Diagnosed 2007 Fallopian tube cancer 2b.Full hysterectomy, no removal of omentum (think there was a bit of a cock up at time of surgery did try to question situation but I think wa sfobbed off now. Who knows I might have done better if they had taken my omentum as well)
Surgery followed by carboplatin 6 cycles and remission
2008 Relapse 2nd line chemo taxol and carboplatin 6 cycles and remission
2009 relapse 3rd line chemo caelyx 6 cycles short remission
2010 oral treosulphan no remission advised to have palliative care!
2011 New consultant from Marsden weekly taxol for maintenance 18 weeks. Good result with Ca 125 reduced from 4000 to 380.
Now awaiting 3monthly chech up
Check ups routinely given 3monthly for 1st year followeds by 6 monthly
No internals since pre surgery
Ca 125 prior to oncology appts both followup and during chemo
ct scans during chemo, post chemo and following rises in ca125. at followup
Own gp happy for me to have ca 125 done if I am concerned at anytime
Bar the time over surgery and the locum oncologist giving up on me I have had excellent treatment.
Sue
Whippit• in reply to
Dear Sue, this is really helpful but shocking that you were told to look for palliative care in 2010 and now you're doing well on Taxol. It seems the weekly regime is doing the trick for you. Re CA125 there are different approaches to that too. Good you can get the test via your GP. It's good we're all painting a picture of what's available out there. When I was going through my consultation last year they kept involving me in the decision-making process but I felt I didn't have any knowledge on which to base my opinion. Hopefully others will also find the treatment catalogue helpful.
Wishing you luck with your treatment. xx Annie
St Richards Hospital (West Sussex area) use Portsmouth Hospital Trust for more complicated cases. I was referred from SRH to Portsmouth for op, and 1st line chemo, 2nd line chemo, at SRH (had reaction) so back to portsmouth for different drug, 3rd, and 4th at Portsmouth, but 5th at SRH.
Check up during treatment have been at the relative hopsital, and between at SRH. No examination since recurrence (jan 2009), but always CA125, and Ct scan after every 3 treatments, and if I have a raised CA125 during remission (every 3 months!!).
My onc seems to be improving with each visit..... (after 5 years!)
Hope this helps.
Viv
BusyLizzie• in reply to
"My onc seems to be improving with each visit..... (after 5 years!)"
That's because success breeds success
Whippit• in reply to
Dear Viv, Thanks for posting up your experiences. I was wondering whether you had Carboplatin and Taxol for each of your lines or whether you progressed on to new cocktails. Interesting you had CT scan mid-treatments. I've only had 1 scan prior to starting chemotherapy and was told on my last appointment that they don't do scans routinely to avoid exposure to radiation. I wasn't entirely convinced as to that argument so I'm just going on 'how I'm feeling' and CA125 tests every 3 months.
Do oncologists really improve? The Oncology Specilist was on Maternity Leave for my treatment so I saw about 5 different people, including a pharmacist, during the pre-chemotherapy visits and the 6 week feedback visit. I saw the oncology nurse for my 3 month check up and will see a consultant for the 6 month check up. Perhaps I'll get to know the oncologist a little better now and as Lizzie says, success will breed success!
love and best wishes Annie
• in reply toWhippit
I've always een the same onc (unless he is on holiday). I started with carb/taxol (stopped taxol after 2 as my feet were so bad). 2nd was Caelyx, 3 was Cisplatin 4 was topetecan (daily for 5 days - 2 weeks off at Portsmouth!) and latest was gemcitabine/treosulphate.
Don't know what there is left he can try next time round. If you don't stay clear for 12 months they say it didn't work. As I was only having 3 months clear he keeps changing it!
Mum
Sorry
Mum's treatment is complicated as she was diagnosed with stage 3c serous high grade over 3 years ago and has had no remission. She has been to various trusts as outlined below which started because I was unhappy with her original oncologist and treatment at her first hospital (oncologist was part-time, couldn't even remember what type of cancer mum had and allowed many delays - up to 7 weeks between treatments with the last one being cancelled). That's just a snapshot as I don't want this post to be about the failings of her oncologist.
FIRST LINE
Tayside (Ninewells Hospital, Dundee)
Carbo/Taxol. 6 cycles.
Only 5 cycles completed due to low blood counts and failure of oncologist to provide GSF. Delays of up to 7 weeks between chemos.
Mum's CA125 in the normal range at end of treatment and treatment was stopped although scan showed cancer was still there. Tamoxifen was prescribed as mums is oestragen driven.
We had to fight to get a blood test 4 weeks later to prove that her CA125 was on the rise and then had to fight to get a scan.
After the poor treatment above at Ninewells, I had mum referred to The Royal Marsden. I can't speak highly enough of them both in terms of their willingness to see us and their help. They then referred us to The Beatson Hospital in Glasgow for a trial which meant mum could stay in Scotland.
SECOND TREATMENT
Beaston HospitaL Glasgow.
Cayelex and Trial Drug 3g3 (circa 1 year)
Worked well and brought the cancer under control - CA125 down to 70 but when continued with the trial drug only as maintenance it didn't work and her CA125 was back on the rise.
Fantastic hospital with fantastic staff. Oncologist amazing.
THIRD AND FOURTH LINE
Back to Tayside (Ninewells)
Mum wanted to go to her local hospital due to the treatment being weekly although we have changed our oncologist..
THIRD: Weekly Carbo/Taxol - 2 months (CA125 dropped from 900 to 300 but then it stopped working)
FOURTH: Trial NKTR-102 (2 months didn't work, cancer got 30% worse)
FIFTH
Mum was put on a hormone drug called Letrozole and we were about to start Oral Cytoxan when mum had to have emergency surgery and ended up with an ileostomy.
I hit a complete block at her current hospital when trying to obtain avastin or trying gemcitabine, not that it matters for now as she is not strong enough for either drug at present. Second surgery, Radiofrequency Ablation, HIPEC and many other suggestions have also been met with a flat refusal.
As with many of you, I am a member of other forums which have members both in the UK and abroad and with the exception of first line treatment, it seems treatment can differ greatly depending on how forward thinking and involved your oncologist is, the trust where you are being treated and how much you push.
I wish I had known what I know now in the beginning as I believe the issues with her first line treatment impacted any remission me might have got and her outcome after that. Not only would I have questioned what was going on but I would have changed her oncologist/hospital way before things got to where they did.
Forums like this have been an amazing help to us so thank you to everyone who takes the time to post and best wishes in your continued battle.
Jen
Dear Jen
Thank you so much for taking the time to post and for sharing your experiences. I feel as though we should ask Ovacome if they could create a platform where we could post and maintain this information in order that we continue to get a picture of what's available and current practices. I know we're all got different types and grades/stages, but it does seem to me it's a bit of a lottery. When I asked how my oncologist assessed the dosage of chemotherapy she said it's the maximum the kidneys will process. I was worried I was overdosing on chemotherapy and steroids. I wasn't in control of the chemotherapy but halved the dosage of steroids with no ill-effects and didn't ever take the anti-nausea tablets.
The Royal Marsden does seem to be a good port of call. I was told that if patients go outside Wales for advice and are given a prescription for drugs that are not routinely administered here that the local NHS can get hold of them.
I wholeheartedly agree with your sentiments - you wish you knew more at the beginning. I feel exactly the same way as you and am really grateful to everyone who's taking the time to post.
Best wishes and good luck to your Mum. This is a very hard time for you.
xx Annie
Sorry, meant to say mum had surgery before her first chemo - hysterectomy, omentum, everything they could removed was removed. Unfortunately they were unable to get it all and left a lesion on her liver.
Jen
Hi, I'm being treated at Colchester Hospital, Essex - my op will take place in Ipswich, Suffolk. I am having chemo first, carbo/Paclitaxel and also Avastin. May have operation after three sessions, if not will have operation at the end. Don't know what grade, but tumour is large and has spread to the lining of my abdomen.
Linda
Hi Linda
From what I know of my meetings with the network, they have a good reputation there and you'll be in safe hands. Your treatment fits in with what they currently say is the best option. Good luck! xx
Dear Wendydee, is there a directory of Oncology Specialist Units and some sort of OFSTED inspection?
What do you hear from your network about Avastin being given. There have been 2 schools of thought - some oncologists say it's only for the first line, others - such as Spanishannah has been receiving it for subsequent lines of chemotherapy and it sems with much success.
Your advice would be most welcome. All the best. xx Annie
They have an inspection set-up called peer review, which seems to mirror OFSTEd type inspections. They have adjudicators and patient reps (I did one for breast cancer at my local hospital) I don't know where the results are published though. Maybe your local cancer network would have the info? I don't know about the oncology special units. Have you tried googling Specialist Oncology gynae units? Worth a try! or try ringing the helpline or messaging one of the nurses on here. They have so much info.
All the best
Wendy xx
Oh my word Solange, I'd love to get hold of your oncologist's reference material telling him Paclitaxol made no difference. I was shocked when my NHS Trust told me it was just 10%, and then after 1 treatment of Carboplatin my oncologist said that was doing the trick. I just can't understand why they don't start us off with Carboplatin alone if we're fit for it, and add Taxol at the 3rd session if the single dose doesn't work. I'm in remission at the moment but I'm stocking up loads of questions to ask when the time comes for me to go back. By the way I too had a locum oncologist so never saw an Ovarian Specialist Oncologist until my treatment was over which isn't recommended by NICE. I got on with her OK but it didn't do much for my confidence when she said she didn't usually make a relationship with her cancer patients. She was an Abdominal Specialist. It seems as though you're doing well. Long may that continue. xx Annie
Hi, I am being treated at the Christie Hospital Manchester. Hysterectomy and omentum removal last June. Six sessions of Carbo/Taxol ,scan tumour found above my bowel, second operation to remove. Cancer spots found on my abdomen and bowel awaiting date to start on the Rotterdam Regime which is Cisplatin/Epotoside. I have nothing but praise for the treatment I have received at the Christie.
Rotterdam Regime: you and me both kiddo.
Love Lizzie
X
It is nice to know someone else will be having this treatment! I shall watch for your blogs with interest . I'm also having my oestrogen and progesterone receptors checked. Xx
University College London Hospital
Surgery Sept. 2011 (3c, high grade serous carcinoma, CA125 before op 720).
Weekly Carbo/Taxol 6 cycles (ICON 8 trial).
Due to low blood counts C-GSF, but with 5 weeks delay altogether;
CA125 dropped to 34 after the second cycle. Little side-effects of chemo.
Staff and particularly the chemo nurses who I saw every week were outstanding in their support.
After treatment (CT scan and CA125): reduced but still small residual disease on right hemidiaphragm and lateral liver; CA 125 stable at 19 to 23 since third cycle. No further treatment planned.
I am curious as to whether there is anything I could do other than trying to enjoy life as much as possible until my six-week check-up in May 2012.
Hi Hope! If you type in staying healthy, eating well or exercise into the search box at the top of the page, there's loads of stuff on there about keeping ourselves healthy. Also, it's a good idea to plan little treats for yourself while you're waiting ....good distraction technique!
All the best, Wendy xx
Dear Hope50, thanks for posting your experience on this blog. Did you actually have chemotherapy every week? That must be exhausting but on the positive side I guess it gets it over with quickly.
I think you're spot-on to enjoy yourself to the full and do whatever makes you happy. I did a lot of visiting and took myself off to France which always lifts my spirits.
Hope the 6-week check up goes well.
Wow, what a list!
although am in suffolk, am treated at addenbrookes, cambridge- and am curious to know why some people are at colchester/ ipswich, and I got cambridge.
diagnosed stage 3a after op at the west suffolk, bury st edmunds (jan 09) (apparantly they had to do it there as I had presented myself at a&e due to accompanying pain).
treatment moved to addenbrookes for chemo (6 cycles of carbo/ taxol) and ICON 7 trial (avastin).
clear for nearly 3 years, then this jan told it had come back on my liver (picked up via ct for the trial- thank god for that!) so liver resection done at addenbrookes, and no chemo this time- continuing with ct scans 3 monthly as check ups as CA125 kept at 7- so not helpful for me.
sue
Dear Sue, it's good you were accepted on a trial and had Avastin which has had some very good results. Interesting how you had a CT scan which picked up recent problems. I might ask again for a scan at some point as last time I didn't have any symptoms until things had gone too far. xxx Annie
• in reply toWhippit
My onc always says he won't do treatment until the quality of life is affected- 'makes no difference when it starts'. I've always needed it when I see him after my 3 months off!
The Christie, Manchester. Diagnosed 3c in December. TAH in January, started chemo in February. Taxol, Carboplatin and Avastin. Still got 2 more chemo sessions to go before scan.
Wow Liz, let us know how you get on with that cocktail. I was Stage 3c but there are several different types of tumour. Have they explained which you have? Mine are non-differential ones and a wide spread throughout deep in the abdominal cavity The worst for recurrence apparently - but that's just a statistic. The carbo-platin alone knocked them on the head - no sign of the little beasts at the end of 6 treatments of chemotherapy. I'm just about to have my 6 month check up and feel fine .... so far!!! love and best wishes. Annie
Southend and Basildon Hospital in Essex
Just finished treatment for Ia clear cell oc - had tah and omentum removed then six treatments of taxol/carbol
had ct scan at finish and am currently clear - will have first three monthly check in June. My oncologist does not now do CA125 tests at check ups - apart from that dont yet know what check up will entail . He did explain about the taxol only giving 10% benefit but said because i am clear cell he wanted me to have it. I have had great treatment throughout . I understand they wait for you to have symptoms before they treat for any recurrence.
• in reply toelainefrank
Hi Elaine.
I was 1a clear cell as well. Finished chemo in Feb but didn't have the taxol. The different approaches are interesting to say the least! Waiting for appointment for 1st 3 month review due in May. All the best.
Linda
elainefrank• in reply to
Hi Linda it seems there is no standard approach for everyone. I have seen the same oncologist throughout treatment he is very good at answering questions but it does seem they all have differing opinions so very confusing for patients. Hope you are recovering well - best wishes Elaine
Hi Whippet, Think I had carboplatin on its own because i was staged at 1c forgot to mention that earlier. Next check up is May and i have been cancer free for nearly 18 months .
Sue x
Hi All
i have just been diagnosed after a fluke checkup at the GP 2 months ago. since then i have had full hysterectomy 5 weeks ago and starting chemo next week with combination of carboplatin and paclitaxel (is this taxol?)
I am in Kettering but seen by onc from Northampton.
She has been honest and said she has not treated anyone with the cancer I have, but had prepared well for the session and seemed to have researched all options.
I have read about Avistin and have just emailed my consult to ask if this can be included when we start next week as it can be given to women newly diagnosed. not sure if it is in their gift or they have to apply for funding. if so does anyone know how long that takes?
I feel shellshocked by it all and have found trying to understand it all very bewildering so reading these have been very helpful.
Does anyone have IV vitamin C as part of the treatment?
best wishes
Dear Newlife
I hope your treatment goes well. It's probably a bit frightening and confusing to read how many different theories there are in different parts of the country. I was hoping to give everyone a broad picture of the menus on offer which might help when asking your oncologist why they've chosen a particular treatment. I think it's worth asking about Avastin. Sue (Ladygooner) was prescribed this as part of a trial at Addenbrooks. It seems it is available if you ask. For my part I'm questioning Paclitaxol (Taxol) as it has so many unpleasant and depressing side effects. Do use the message facility to ask additional questions of anyone who's posted here. They may well be able to give you some helpful advice.
All the best with it. xx Annie
Hi
I had surgery in May 2009 to removed a 13cm cycst on my right ovary at Princess Alexandra, Harlow. Cyst perforated on removal. The histology showed stage 2 squamous cell carcinoma in a dermoid cyst - rare I am told for this type of cancer to be found on the ovary. Only other person I have heard of with this is sadly no longer with us so I have yet to be in touch with anyone else who has has it.
I was referred to UCH London and scan showed remains of original cyst (this is refuted by PAH who say it was a new tumour which grew in two weeks!!). Had a radical hysterectomy June 09 but retaining left ovary to try to delay menopause due to my age. Then decided to give me 6 sessions of cisplatin weekly, 25 pelvic radiotherapy and 3 bracheatherapy. So in hindsight would have been better to remove left ovary at time, especially as had recurrence in the left ovary in June 2010 - surgery to remove. Further recurrence in omentum in December 2010 - surgery to remove plus 6 further sessions of cisplatin weekly.
Have had 3 month follow up appointments. CT/PET scans every 6 months or when I have felt a niggle. Blood tests every 3 months to check scc antigen level though this isn't always a definitive indicator apparently.
Staff at UCHL have generally been amazing. My oncologist is inspiring and at my lowest has raised my spirits.
Regards
Southampton General Hospital
Diagnosis stage 4 April 2010 after surgery for hysterectomy, part of bowel removed (no colostomy), mass removed from liver, 1/3rd of vagina removed and abdomen scrape. Followed by 6 lots of Pacliataxol and Carboplatin. I knew the side effects of the Pacliataxol but wanted to give myself every chance. My lovely oncologist was on maternity leave so I saw her stand in who was very matter of fact and scared the hell out of me. Not very positive. However, apart from him I cannot fault my treatment and aftercare. No sign of oc at end of chemo scan and so far so good............fingers crossed.
Chris x
Whippit• in reply to
Wow Chris you've given me hope and I'm sure many others. It must've been frightening having so much surgery but the combination does seem to have done the trick for you. I also had a locum as the Ovarian specialist at my hospital was on Maternity Leave. The locum was nice but a bit scarey as she was so downbeat and the maternity cover also meant I saw quite a number of doctors during the treatment which was confusing. I think I'd question this another time. I met my specialist after the treatment was over and she was much more encouraging.
I'm certainly keeping my fingers crossed for you .... For all of us. Love Annie xxxx
• in reply toWhippit
Hi Annie
How weird that your experience was the same as mine with the oncologists we could almost have been at the same hospital. I saw so many different doctors I couldn't remember their names when asked. Still that's water under the bridge now. Onward and upward.
Love and hugs to everyone on this site.
Chris x x
Hi all.
I was diagnosed with stage 3c in August 2008, had hysterectomy, and removal of omentum and appendix at Norfolk and Norwich hospital.
Then I had platinum and taxol , 6 cycles at James Paget hospital, Great Yarmouth. Finished Dec 08.
In June 2009 my ca 125 began to rise slowly.
Got a 2nd opinion at the royal Marsden and waited til I had symptoms before having more chemo.
May 2010 had platinum and caelyx, 6 cycles, again at James Paget.
May 2011 had platinum and taxol again at JPH.
March 2012 started chemo again, this time platinum only.(its working, feel better and ca125 coming down but have become allergic to platinum this time).
James Paget is a really good place to have chemo.They have looked after me very well. I will certainly go back to the Marsden again, when necessary.
The 2nd opinion was very helpful.... it was right for me to wait before my 2nd chemo, but obviously this would not be true for everyone.Also I wanted to try platinum and caelyx before having taxol again. Didn't like the idea of a build up of neuropathy...
This thread is a really good idea!.Have not posted before ,didn't know what to say.
Julie
Dear Julie
Your post was really helpful and informative. I'm really grateful to you as I've been thinking about a referral to the Royal Marsden and wasn't quite sure at what point to do this. It was helpful to hear why you opted for Caelyx rather than Paclitaxol, and I'll add that question to my growing list for my oncologist.
What do you like about the James Paget Chemotherapy Day Ward? It would be good to hear about best practice. I found it rather lonely at The Velindre In Cardiff.
It's good to get to know you through the blog. Love Annie
Hi Annie.
The main thing I like about the Day Unit is that the nurses are very professional , before I had my first ever chemo i was given a lengthy explanation about side effects , what to expect, how to manage constipation etc.I was also given written info, but the long chat was really important.
Have had some quite bad allergic reactions, and they always sort me out so quickly that i don't have time to feel scared.
They phone me the day before chemo to find out if I'm ok and discuss blood results, its good to have this info in advance.
Also , its the little things, eg if we were there all day and one of my daughters was with me ,they would offer her lunch if they had any spare ones!
The unit would maybe described as overcrowded, 6 or 8 of us in a small room having chemo.However this means it can be quite sociable, I always end up chatting to someone and have made some new friends.
After my 1st round of chemo my gynae oncology nurse introduced me to another lady in similar circumstances and this has grown into a support group.We meet up for lunch regularly and have done a bit of fundraising for Target Ovarian.
The medical care has been good, but I am very aware that we who are out in the sticks need to go a larger centre to get anything which is not yet on the nice guidelines.And of course it takes years for something to be accepted by nice.
I will stay here as i am still, fortunately, platinum sensitive(although very allergic)I plan to go back to the Marsden if or when I become platinum resistant.
Its good to meet you.Have just read your blog about returning to work.Well done ! After going through cancer you then had to fight for your job.Unbelievable.
I recently took ill health retirement from a job I loved, at the age of 50.I was 46 when I was diagnosed. I am so far really enjoying my retirement.
Better go now before this turns into a book.
Julie.
Dear Julie Your reply was really very interesting as we seem to be taking the same route. I will definitely get a second opinion at The Royal Marsden. I have my 6 month check up later this month.
I had a similar good experience at my first chemotherapy appointment. The oncology nurse spent a long time explaining everything and drew a little diagram of how the blood would be affected. She couldn't have been more reassuring.
I had to go in 2 days before each chemotherapy session. Luckilly the hospital is 10 minutes from my home. They would take blood samples for haemoglobin and platelets and the CA125. There would be quite a wait in a very noisy and crowded area while the blood levels were analysed and then I'd be called in for a chat with an oncologist about how I felt. The results of the CA125 were never available and I only found out the count had plummeted when I noticed a number written on my referral sheet after the 2nd session. The aim seemed always to manage my expectations. It's not that I'm unrealistic about the cancer it's just that I'm an optimistic type and mostly I felt discouraged after the oncology appointments. It was much easier to talk to my GP.
Your day unit sounds very good. There are 2 at my local hospital. One has about 20 chairs and 2 beds, the other had 10 chairs placed too far away to chat and no attempt to match anyone up. Both were very busy and noisy with a local radio programme playing non-stop. If I have Taxol next time which takes 6 hours I'll take in some headphones and watch a movie or listen to some music of my choice.
I'll ask next time if there's a chance of getting people together to make an informal support group. My experience of the day unit was that it was very isolating.
You mentioned having allergic reactions. was that a red itchy rash up the arm? That developed on the 3rd session and I was given an injection of Piriton immediately and every session afterwards. It made me feel woozy and irritable. Is this linked to becoming Platinum resistant? I got the feeling from what you say above that these are unrelated.
Yes the job situation was shocking - particulaly as my job relates to disability and equality and I find myself unable to invoke the laws which should be protecting me. The management are very pleasant but it was clear they had assumed that having an incurable cancer at the age of 59 I would opt for early retirement and would become 'natural wastage'. This is Perceptual Discrimination under the Equality Act and to some extent Age Discrimination. During my period of sick leave my salary was cut from my own budget and my post was replaced by a junior member of the team which was obviously intended to effect some cost reductions. That's Constructive Dismissal. There's also the serious breach of The disability legislation that covers 'hurt' inflicted as a result of having a disability. The problem now is what they will do with me. By law I should return to my old job. I was put under enormous pressure to sign a new contract which isn't legal. Unfortunately for me the junior member of staff is my boss's wife and they both like the new arrangement so we're at stalemate.
It's all a mess. I've now got accustomed to the situation and am observing my own case with some detachment and amusement. I've promised my GP that I'll quit if it gets tough but for the moment I'm not ready to retire and I wish to continue to work even though I'm disabled. I'd miss the stimulation and the company of so many good colleagues. It's also good to have a salary as my State Pension doesn't but in for a couple of years.
I'm not really like Reg Varney in 'On the Busses' and had never considered joining a Union. I'd recommend it now and in fact I'm training as a Caseworker. It's really interesting and another reason I'm not ready to retire yet.
One day I'll complete my blog on returning to work. It might be helpful to others - and there are a number on this site who've been treated badly when they hoped to return to work.
Enough! It's me now who's written the essay. I was frighted to put the tale on my blog.
Thanks for listening. Xxx Annie
Dear Annie,
Thanks for the very interesting reply.
Heres hoping that your appointment goes well later in the month. One of my friends from the support group was treated 6 years ago , she was stage 3c and very ill, .... she has been fine since then, it never came back. I hope you are like her.
It seems there is no way of predicting what happens , so i understand your approach, of being ready for trouble if necessary.
Wow thats interesting that you saw your oncologist before each dose of chemo.My oncologist is actually based in another hospital 25 miles away and only comes to JPH once a week for outpatients appointments. When I'm on chemo, I only see him once, halfway through.From what you say its not an entirely positive experience to see so much of them.
A couple of times (when not on chemo) I decided i needed some input from him and phoned his secretary.One time I was given an appointment to see him 4 days later(that was when i was feeling rubbish and needed to go back on chemo).Another time I wanted to discuss avastin and he telephoned me at home at a pre arranged time.(he advised that as i'd already had 3 lots of chemo and thickened bowel it would not be good for me)
I have the blood test 2 days before chemo, at the hospital pathology dept.They are really good phlebotomists ,thats all they do every day.So they always find a vein easily.Also, cancer patients don't have to wait we are put straight to the front of the queue! Its 20 mins drive from my house.I do have the option of getting it done at my gp surgery, tried it once as its 2 mins walk from my house.Had to wait 30 mins, the nurse found it hard to find a vein, and the results got lost!
The chemo nurses phone up the next day and ask a long list of questions about how I am , They tell me if there a re any problems with white cells, hb or platelets(as this causes chemo to be delayed) I ask them my ca125 results .
It was our gynae oncology nurse who put 2 of us in touch with each other, which grew to a support group.She now gives newly diagnosed ladies our phone number plus our support pack (info about macmillan, Target ovarian, Ovarian cancer action and of course Ovacome!)
I was allergic to Caelyx the 1st time I had it. Sudden breathing problem(like severe asthma attack), red rash all over and felt just awful.They stopped the drip and gave me steroids and piriton. Then continued.No further problems, just had steroids and piriton before each dose.
i became allergic to platinum on my 20th dose. Yes you are right , being allergic has no effect on whether it actually kills cancer or not(checked this with my Dr). It was an awful feeling, bad pain, blood pressure dropped, felt like i was dying actually.Drip stopped, given drugs, felt better, but still had to lie down for a couple of hours before going home.(didn't have most of my chemo).Went back a week later, given steroids and piriton to take for 24 hours before and had it slowly.Went fine.But then the next time(ie last time i had chemo) had all the drugs beforehand and had another (not as severe) reaction.They gave more drugs IV and continued even more slowly. I was there well after closing time.Not looking forward to next weds(4th dose) but as its working am very keen to have it.
I have a friend locally who has had more chemo than me, and has also had the same reactions, so it was great talking to someone else who has been in the same situation.
I worked as a sister in a neonatal unit. It was a lovely job in a great team. My manager was good friend who is now an even better friend. I was so happy each time I returned to work (went back after Ist and 2nd treatments).They organised a phased return and also allowed me to work 8 hour shifts rather than the normal 12. While having my 3rd round of chemo I decided to take ill health retirement. I realise I am fortunate that I had this option. Money was a major consideration.
During my ist and 2nd treatments I was entitled to full pay( Again, i think pretty fortunate compared to others).During my 3rd treatment I went down to half pay, and I looked at the sickness policy and realised that unless I went back for a full year without being off sick again I would be on zero pay next time. My consultant thought I would need more treatment in about 3 months(actually it turned out to be 51/2 months.)
Then I took advice from my union, which was invaluable.They advised me how to do it , getting the timing right, what my consultants letter should say,how to deal with personnel , wages dept and occupational health. The wages dept had halved my pay a month earlier than they should have and didn't inform me or my manager
Part 2 to follow later
Julie
hi annie,
sorry to break off suddenly, got a phone call , then looked at the time and realised i had stuff to do and places to be.I will keep this short i feel like i'm writing such long posts.....
Part 2
So I eventually retired, and because my union advised me it all went well.My pension came through just when half pay ran out(oh and they helped me get back what they owed me from cutting my pay too soon, without upsetting anyone.)
like you, i'm not militant, i only joined my union because they provide legal help if we make an error and or get sued. Never in a million years thought I would require their services due to having cancer!
My union is the Royal college of Nursing.
Hats off to you for fighting the discrimination, but I guess its difficult to carry on working with your boss(and his lovely wife).It sounds like the kind of job where teamwork , trust and integrity ought to be highly valued......So if i understand rightly, she was promoted into your job while you were off? So now has she gone back to her original job?
its great that you are training to be caseworker and helping others.
Sorry this so long. I will go now, going out for dinner to a friends house, and very glad i am now feeling well enough to do so.
Also worried i might be clogging up the website with my overlong posts!
Take care
best wishes,
Julie
Stage 3c high grade serous diagnosed April 2011 6 lots carbo/taxol, Hysterectomy, omentem, lymph nodes, very good results, all clear October 11.
Jan 2012 3 month check up, tumour on liver, biopsy confirmed return of OC another tumour in pelvic region, started ECX chemo on 13th April (epirubicin cisplatin and capecitabine) supposed to be effective with early recurring OC.
Hospital Addenbrookes Cambridge, Consultant Dr Earl
George x
Dear George thanks so much for posting. You've given me lots of ideas for the next visit to the oncologist. Thank you for sharing the prescription for early recurring OC. I hadn't heard of this before. I get the feeling there are some centres of excellence and that Addenbrooks is one as they seem to be able to do surgery on lymph nodes which Cardiff & Vale couldn't do. Not sure whether it was my particular tumours or the expertise available. Will have to do some discreet enquiries. Xxxlove Annie
Dear Whippit
1997 Royal Infirmary, Glasgow - Ardenocarcinoma - Surgery/Cyclophosamide/Cisplatin x 5 (didn't manage No.6)
2007 Royal Infirmary, Glasgow As above - same site - Surgery/Taxol/Cisplatin x 5 (didn't manage No.6)
2012 Beatson Hospital, Glasgow also Stobhill Hospital, Glasgow
As above - same site. No surgery (too dangerous) No chemo (very low platelets & white cell count) Am on Letrozole for 8 wks (lot of eostrogen in body feeding cancer cells) then another scan, If tumour hasn't grown any more will stay on Letrozole until it stops working, then radium treatment. If Letrozole doesn't work will go straight onto Radium. Don't know what other options are available, nobody's told me.
Hope this helps.
Iris
Dear Iris Thanks for your comments. I have no doubt it will help and there will be ladies reading your post for whom this will strike a chord. Perhaps you could exchange ideas and other options available in other places. Perhaps the posts will give you some inspiration as to questions you can ask your oncologist. I do hope the Letrozole keeps doing the trick for you. There are so many treatments it is quite a maze. Keep us posted to let us know how you get on.
Love Annie
March 2009 Ovarian cancer stage 2c, age 48. Under oncologist at Colchester General Hospital. Primary adenocarcinoma in fallopian tube involving the sigmoid colon and bilateral pelvic masses and tumour in the Pouch of Douglas.
01 April 2009 Total abdominal hysterectomy and bilateral salpingo-oophorectomy at Ipswich Hospital.
Carboplatin chemotherapy treatment at Essex County Hospital – 6 sessions
14 August 2009 Tested BRCA1 positive
19 January 2010 Prophylactic Bilateral Mastectomy with DIEP (deep inferior epigastric perforators) reconstruction from tummy at Broomfield Hospital, Chemsford.
July 2010 Recurrence of ovarian cancer on spleen. Exploratory laparotomy, splenectomy, and excision of para-aortic lymph node at Ipswich Hospital. (very bad experience and I put in an official complaint)
Carboplatin and Taxol chemotherapy x two sessions (severe peripheral neuropathy so changed treatment)
Carboplatin and Caelyx x four sessions at Essex County Hospital
December 2011 Recurrence of ovarian cancer in paracolic gutter. Colchester suggested Carboplatin/Gemcitabine chemotherapy but I asked for a referral to the Royal Marsden to enquire about parp inhibitors.
March 2012 Now on a parp inhibitor trial at the Royal Marsden. Going well.
Whippit• in reply to
Dear Charon, You've had such a journey. Thank you so much for sharing your experiences with us. It looks very positive the Royal Marsden have included you on their PARP inhibitor trial but frustrating that it wasn't mentioned whilst you were still under Colchester Hospital. Hopefully some of the posts might give you more ammunition to fight for the treatment you need. Love Annie
I am amazed by all we have gone through. I think WE ARE VERY SPECIAL LADIES.
Suex
Whippit• in reply to
Dear Sue, I'm so really grateful to so many ladies taking out time to share their experiences. it just needs to be organised now into some sort of database and updated regularly so we can all access information in order to ask questions when we meet our oncologists. I felt so disempowered when I was diagnosed last year and was invited by the oncologist to have an opinion on my treatment plan. I know this is only skimming the surface but just asking a few questions as to why one treatment plan is preferred over another will surely help us to feel more positive and in control of our futures.
You are absolutely right. It is a very special group we're privileged to have around us. We should be a force to be reckoned with. Xxx love Annie
UCH London
Stage 4,serous adenocarinoma with lymph secondaries
Carboplatin & taxol weekly ,commenced March 2011-minimal side effects
Abdominal debulking surgery June 2011-surgery fine but have large abdominal hernia now,to add to the big belly look!
Referred to Hospital for Integrated Medicine for menopause management.
Nov 2011-recurrence,lymp & liver
Currently on Van der Berg regime,had cisplatin weekly x6 & now on oral etoposide-minimal side effects
UCH= oncologist supportive & knowledgable,feel confident in her care.
Chemo nurses excellent.
Overall happy with treatment so far only negative its lacking in clinical nurse specialist support.
Dear Helen Thank you for taking the time to post your experiences There are quite a few of you on the Van de Berg regime which seems to be a relatively new treatment offered by a limited number of hospitals. I was really pleased to hear you're experiencing minimal side-effects and hope with all my heart that it's a success. With best wishes Annie
Hi Annie,
This regimen was published in the British Journal of Cancer in Jan
2002. However, I agree that general oncologists don't seem to be that au fait with it. Mine is currently emailing my Professor to get details which is rather sad because cancernorth.nhs.uk (i.e. another part of the NHS) already has the full recipe on line! I emailed his secretary to let her know - but I guess I have a wait now while my Professor replies and my oncologist finds the time to read his reply! Ho hum! Another call tomorrow required methinks.
Love Lizzie
X
Yikes Dr Lizzie, you have a vocation. Can you distill all your learning and post it up on this site? It's invaluable. Not just to us - but clearly some oncologists need a bit of help too.
Hope you've also found time for some more shopping treats to cheer up a rainy day.
Loads of love xxx Annie
Hi Annie,
LOL - I just don't want to go thinking there was more I could have done to stop the truck - but yes, today I found a funky tatty devine necklace and am toying with a new bag as my new dresses all have navy blue in them. I know tatty devine is a bit 'out there' - but Ihey, it made me smile
Necklace:
tattydevine.com/shop/by-pro...
Bag:
debenhams.com/webapp/wcs/st...
Love Lizzie
X
You're a temptress. i've just ordered a pair of Love Tatoo ear rings from the TattyDevine.com website. So 'not me' I had to have them! Xxx Annie
LOL! I think if a person can't find something on that site to make them smile then their cause is lost I was tempted by the white seahorse brooch too, but I resisted.
• in reply toBusyLizzie
Cool..........I love shopping too. Been looking for the 'one' pair of shoes to go with all for holiday Threw caution to the wind on Saturday and bought 3 pairs ...........felt wicked. Well, they all fitted and looked nice. Promised hubby that he won't have to trail around shoe shops for the rest of the year......tee, hee..........he's soooooooooo trusting.
Love and hugs Chris x x
BusyLizzie• in reply to
Shoes and boots...heaven for me. I am dreading the ankle swelling phase....
Love Lizzie
X
Dear OvaCSea
Thank you so much for taking time out to post your treatment regime on the blog. I'm hoping it gives us some ideas as to the range of treatments that are available as a basis for questions and discussions when we are in hospital. I really like your ethos and hope I can follow your example. Perhaps we can persuade Ovacome to create somewhere where we can post and compare treatments. I wish you all the best. X Annie
Dear Whippit
Thankyou for starting this post. It real y is so interesting to see all the different regimes and treatmenrts out there. Wish I had held all this information a few years ago. Still I have it now. Am due to see my oncologist, who has just come down from the Marsden, tomorrow. I fear the worst but thanks to you, Lizzie and all the 'girls' I do feel I will have the information I need to argue my case if I need to and that gives me strength.
Love Sue
Iam under Cumberland Infirmary who work along side Queen Elizabeth Hospital Gatehead.Had hysterectomy,omentum and pelvic lymph nodes removed at Queen Elizabeth November 2009 and 6 rounds of carboplatin at Carlisle.I have now been clear since my second chemo and just gone from 3 monthly to 6 monthly check ups.I feel the treatment i have had since diagonised has been 1st class.Shame i can't say the same before i was diagonised
Thanks Dee for your post, I'm so pleased you've done well since your 2nd chemo. That sounds to me as though all went well since the 2nd dose of chemotherapy rather than the 2nd line. Same as me. Sounds as though it took a long time to diagnose in the first place and you feel it might have been more effectively diagnosed. Interesting you also had just carboplatin. Would you mind saying what stage/grade you were at to lead to this prescription. Mine was the same but more by accident than plan and it's worked well so far.
Wishing you all the best. xx Annie
I had been ill for 2 months firstly told i had a virus then depressed and suffering from anxiety.I was sent into hospital after severe pain in my left side.They found a cyst that had reputured on my left ovary because it was so large they removed it and did a hysterectomy.The biopsy then showed the cancer but it was contained to the over and not spread so i was graded 1c but then after the 2nd surgery at gateshead they discovered a very tiny tumour on my lymph node so the grading change to 3c but the surgeon and oncologist feel this could of come from the rupture rather than a spread of cancer.So they treated me as 1c thats why i just had carboplatin.Also it leaves options in the future if god forbid i had a relapse sorry for waffling xxx
Thanks for the explanation Dee. I was diagnosed with work-related stress at first -something similar to your diagnosis - vague symptoms - but transpired after investigation to be Ovarian Cancer. It's been a horrible experience for you but hopefully you can try to put it behind you now and get on with your life.
I also had just carbo-platin but you can see from the conversations above more by chance than prescription given my diagnosis is 3C. There was some admin error so I never got to have Paclitaxol. It did the trick this time.
I know how you feel about relapsing. It's a worry on the horizon from which you're never quite clear whatever the grade/stage. I wish you love and luck.
xx Annie
Hi everyone
I was diagnosed in Feb 2012, Stage 3, am being treated at Derriford, Plymouth.
Currently having 4 Taxol/Carbo, just coming up to the third one and side effects minimal so far. Just hope it's working. After that I will have a scan and surgery is planned, hysterectomy and anything else they don't like the look of. Then more chemo after that, either two more Taxol/Carbo or maybe Petroc trial if I meet the criteria. I think the trial is to do with putting the chemo into the abdomen not intravenously. However not thinking about that yet, want to get this first lot of chemo and scan completed and get a date for surgery.
Really interesting info from other people - thanks - I feel much better informed!
Lynn
Whippit• in reply to
Dear Lynn,
It sounds as though you're doing really well on your treatment. I'm interested in the Petroc Trial if this is about adding a chemotherapy wash to the abdomen after surgery. A friend had this done but for another sort of cancer. It seems a good idea to me. My tumours had spread widely and deep into the abdomen and I only found out afterwards about the chemical wash or I would have pursued it more actively.
Keep us informed how it's going!
xx Annie
North Hampshire Hospital (Basingstoke)
3 cycles Taxol/carboplatin-did nothing to shrink tumours but debulking operation March 2012. Referral to Royal Marsdeon on 27 April to see whats next-drug development unit.
Great blog x
Dear Sunny, thanks so much for posting up your experiences. I really do hope the visit to the Royal Marsden goes well. There's a lot of very positive reports on their work. Hopefully you're in touch with some of the ladies who've posted on this blog and can give you some insider information and support. Keep us posted as we're gunning for you.
Love Annie xx
Hi whippet I have to say in all the time I have been on the site I have never seen such a response. I am sorry I am so late but not very well over weekend. Ok now though. Here I go.
I was diagnosed in 2008 with stage 1c ovarian cancer and stage 3to 4 endometrial cancer. Was treated at Clatterbridge in the Wirral and follow up at the Women's Hospital , Liverpool.
Had Irenotecan and Capecitabine but had to stop eventually cos I was too poorly. Done really well but unfortunately suffer effects of radiotherapy. Happy to be alive.
Lucy
This thread is a great resource and very, very interesting!
Dear Lucy - thanks so much for posting this, particularly as you're feeling poorly at the moment. I went straight to the Macmillan site to look up Irenotecan and Capecitabine as I hadn't heard of these. The search for Capecitabine on the National Cancer Insitute website led me to a list of trials currently operating for endometrial cancer.
I'm really sorry to hear you've had bad side effects from radiotherapy. It's something that has been suggested as an option for me in the future. Are there any questions you think I should be asking when considering whether or not to go ahead with it?
I hope you're feeling better soon. xx Annie
Hi Whippit.
Like Lucy I was diagnosed with OC in August 2008 I also went to The Womens Hospital Liverpool had full Hyst/ Debulk/ etc.....then Chemo.. six Carbo / Taxol at Clatterbridge ....which put me in remission...had recurrence in August 2011
( para-aortic artery ) then Palliative Chemo six Carbo / Taxol.. the plan was to shrink the tumour was told that it wouldn't go away..... Scan result in January 2012 ....it is gone !!!! My Oncologist was very keen to point out that I am not cured..... But I am in remission....
What a great idea.... Thanks ... Best Wishes x Gwyneth x
Wow - I love disappearing tumours! Mine, lots of little beasties left after hysterectomy and debulking, also disappeared after 6 cycles of chemotherapy. I've also been assured they'll be back but that radiotherapy might be a possibility. Piecing together information from different appointments and different oncologists I understand it would be possible to use radiotherapy if I can persuade them to grow back in one place rather than to scatter themselves widely and deep in the abdomen. Congratulations on your diappearing tumours. I wish we knew the secret to this trick so we could share it with others.
x Annie
Hi Whippit,
Try not to persuade them to group together on the "Para-aortic artery" you still won't be able to zap them with radiotherapy too near major blood vessels and of course it"s the major artery that runs down the body.... I did think that it was good that it came back in one place though.....but my oncologist did give me a poor prognosis maybe twelve months... He is astonished that I am in remission.
I have nodules elsewhere but they haven't come to anything......Lol... Last visit to my oncologist was the Fifth of April he forgot why I was there .. Doh....
doesn't instil confidence does it ? No wonder we all rely on each other for info....I don't know where I'd be without all the nice people on here...
Best wishes x G x
Dear Gwyn, That's terrible .... what's your oncologist like? It seems to me on 5 April he forgot why HE was there. What a response to the wonderful news that the tumours had disappeared. You're obviously a realistic person and you hardly needed to be dashed down with a prognosis drawn out of thin air. I hope with all my heart that you continue to astonish him for many years to come. No, I hope you find an oncologist who knows why he/she is there and why you have to be there.
I'm sending you loads of love and tumour shrinking vibes. xxx Annie
Dear Whippit,
Thank's for your reply and good wishes. "Yes" my oncologist does seem to be on another planet I was lying on the bed behind the screen and the nurse mouthed to me " it is because you look and act so well that he's forgotten"
It was not the first time he has done that either, when I first had a recurrence he didn't know why I was there when I reminded him he then said... "probably no need I'll send you for a scan" ...I thought ...there is need as I knew it was back I had been saying about pain in my back in the same place for over a year hmmm!!! but I have had a good outcome and that's the important thing
Cheers x Gwyneth x
eeek Gwyneth - seek another oncologist.! Just because people have a medical degree and a specialism doesn't make them a good practitioner. They're only as good as the preparation they do before seeing you, the research they do outside their contracted hours and their contribution they make towards the local boards in obtaining the best remedies and treatment for you.
Just as an example in my own experience, I know a local gynaeocogist socially and when I heard I was to have surgery I was terrified this person would be assigned to me as they're ham-fisted, have no social skills and their reputation amongst staff isn't good. Wales is a small place so word gets round.
I do urge you to speak to someone at the hospital and tell them what you've shared with us here so that you can receive decent treatment. A good outcome is not the only important thing. We must never look back and think we've left a stone unturned. The quality of your life should be at the forefront of your oncologist's mind.
Sorry if I'm pugilistic today. I'm feeling bolshie as I'm winning a moral case with a work related issue. I nearly gave up. Thank goodness I didn't.
Loads of love xxx Annie.
Cheltenham general hospital
Diagnosed stage 3 early Dec 2011
Started three sessions of carbo/ taxol jan 2012 at 3 week intervals.
Had full hysterectomy + omentum removed march 2012.
Some traces left on liver and bowel.
Just started last three sessions of chemo to hopefully remove these remaining bits.
Carboplatin only this time possibly because I have developed phlebitis and some signs of neuropathy.
Have been approved for avistan but not started for the same reasons.
Phlebitis has subsided a bit so perhaps they can step up the regime for the last two sessions.
Dear Fats, Thanks for posting on the blog. I wish you well with your last 3 chemotherapy sessions. I wonder why some people have a hysterectomy first and then chemotherapy and others have some before and some after the surgery. The posts on here have prompted so many questions for my next visit to the consultant at the end of next month. Good too that you'll have Avastin. It can have excellent results. I'm also going to do some reading up on why some NHS services say it can only be issued for first line. Carbo-platin alone worked well for me and I was told they can give a larger dose if given on its own. I'm also interested to ask if I have a larger dose am I likely to develop a resistance earlier. So many questions ... But good to keep the oncologists on their toes.
Xx Annie
• in reply toWhippit
Thanks for the good wishes.
As to why the chemo first, as explained to me, at the start I was inoperable,. They would start with chemo and if it shrank sufficiently I would have the op. Thankfully I did respond to treatment and was able to have the op.
I may however not get avastin because of this phlebitis and a a pre existing diverticulitis problem.
Time will tell I suppose.
When I was first diagnosed I was living in Eastleigh and had an abdominal drain at Royal Hampshire Hospital in Winchester they misdiagnosed me with PPC and would have started me on chemo with no surgery.
I decided to move back to the NW and was living in Salford PCT but I was referred to The Christie by the onc at Royal Hampshire. The onc at The Christie wasn't happy with my diagnosis said I looked too well so then I was referred to St Marys in Manchester had several painful procedures including a chest drain and then eventually had a full debulking operation last June. Then I had 5 cycles of carboplatin at The Christie when my CA125 leveled out. My CT scan showed residucal cancer but it had stabilised so have been on 3 monthly checks. My CA125 is still above normal but it has fallen at the last couple of appointments.
I forgot to say I live in Manchester now
Dear ScardyCat
You've had quite an ordeal. I would be interesting to look up other accounts of the Royal Hampshire to see if anyone else had problems with them. There are quite a few women who feel they've had less than satisfactory treatment.
You're like me - carboplatin only and it worked well. I'm definitely going to ask the question WHY when others have carboplatin and Paclitaxol.
I'm really pleased to hear your tumours have stabilised. I'm also on 3 month check ups - have my 6 monther next month and will be seeing the oncologist rather than the nurse this time. xx
Annie
It was my choice to have carboplatin only I was offered both but I'd read and been told that it didn't make that much difference and the side effects of taxol are worse
Diagnosed Stg 3C Oct 2009 following full hysterectomy/oopherectomy.
Clatterbridge Hospital, Wirral/The Women's Hospital, Liverpool
6 cycles of carbo/taxol - was given choice of one or both and was talked into having both as the taxol would act as a 'booster'. Wish I had only had carbo now having heard it does not add much benefit.
Recurrence in lymph nodes Jan 2011 but only small so waited until Oct 2011(when 2 nodes had increased in size) to have further chemo - carbo/gemcitabine. Was not really having any major symptoms so now wish I had delayed this chemo a bit longer, but went with the advice of my oncologist.
Had no real problems with first line chemo, but this 2nd line has caused big problems with my blood counts, so have had many weeks of delay in between to allow bloods to recover. Only finished my 6th cycle (of 18-week course) 2 weeks ago!!
Should also say I am on ICON6 trial (daily tablet of cediranib, which could be placebo). I'm of the opinion that I am on the 'real' drug as the side effects have been so severe, ie the low wbc/platelets at every session! Now I have finished my main chemo I will continue taking the drug for about another 12 months, depending on what side effects I get.
Had CT scan yesterday and will get results on 15th, so fingers crossed! My last CA125 count was 7, but the highest it has ever been was 27 when first diagnosed so it is not a good indicator.
Annie - all this info has been really helpful. I do wonder why we keep getting recommended to take 2 does of chemo together when maybe they should see how we react to one, ie carbo only, before bringing in another! But this is probably due to the individual opinions of each oncologist! I like my oncologist and have had good support from my specialist onc nurses, but would not hesitate in future to seek further opinions if I am in any doubt as to any further treatment (just hope I don't need it!!) xxxxx
Colette
Dear Colette
Thanks so much for your post. You're is an interesting prescription. I hope the side-effects diminish once your chemotherapy finishes. I found I actually had more afterwards and for some months than I had during the chemotherapy. Will you be told afterwards whether you had the placebo or the cediranib? It would be brilliant if you could blog any feedback you receive on the trial.
I agree with you about the dosage of carbo-platin and Paclitaxol. It just seems to make sense to try the one which has less side effects to start with. It is debilitating and demoralising to lose one's hair and all the other side effects associated with Paclitaxol. I also rather concur with you that perhaps treatment is given too soon or in too large quantities because no one seems able to customise it to the individual. It's clear from the research and all the blogs that this disease affects us all very differently so you'd think there would be more evidence of research into diagnosis and customising prescriptions. I was really resentful by my last chemotherapy session and I've had similar thoughts to you - did I really need 6, and would 5 or 4 have done the trick.
I have a quiet weekend coming up and have committed a part of it to printing out all this really helpful feedback and making a spreadsheet of it which I'll have to find a way of distributing to anyone interested. I'm taking it along to my next consultation later this month to frame some questions to my oncologist.
I also wholeheartedly agree with your recommendation to seek a second opinion. In fact I think it would be good practice given there is no real understanding of the disease to offer this facility to all women at diagnosis. I was asked by my oncologist if I agreed with her prescription but then I had nothing to compare it with.
Please let us know how you get on, as as I said before, It's really tough to cope with delays because blood levels are all over the place. It certainly made me feel very vulnerable that my body was out of sorts.
with very best wishes. xxx Annie
Thanks Annie. No I don't find out whether I have been givien the placebo or the real drug as the trial is still ongoing. Even my oncologist doesn't know which I am on - only the drug company. I think the trial will continue for another couple of years before we hear whether cediranib would be of significant benefit to oc patients. I'll let you know how it goes though.
xxxxxxx Colette
Been trawling through this blog as a newby.
I too was on Icon 6 trial at the Christie. Didn't have any side effects so became convinced that I was on placebo. Came off it after 18months and onto Carbo/Caelyx Now waiting to go on Rotterdam Regime at end of January.
First diagnosed 2001 had hysterectomy, ovaries removed and omentum at St Mary's Manchester. Was told 2c and that the serous tumour on the left ovary had been completely removed. Followed by 6 3weekly sessions of Carbo/taxol at The Christie... regular checkups going to 12monthly was going to be discharged after 10years when recurred. As attached to bowel had op to give me stoma at Christie unfortunately also attached to bladder so debulked, hernia repaired and stitched up that was in 2010.
Carbo/taxol followed plus Icon 6 trial. After 3 cycles of taxol because of the effects on my feet and fingers it was stopped and carbo only.
CA125 rose to 29 in 2011 and a scan was done showing growth of markers plus bits and pieces in abdomen. All major organs clear. 13 months after last chemo I was on 6 3weekly carbo/caelyx. I finished Feb 2012 My scan showed as stable but in May I had my first episode of a blocked bowel caused by the tumour pressing on the bowel.
Had a stent at Salford Royal. On holiday in Cornwall September I had another episode and another stent inserted. November saw me back again but enema sorted me out.
I saw the bowel surgeon last week and as I am okay at present on regular Movicol it was decided not to press ahead with stoma. Now I am to start my 4th chemo end Jan on the Rotterdam Regime.
Not in any pain, fitness levels still pretty good.
So very grateful to the local Practice doctors always there at the end of the phone if needed to chat, all the marvelous staff and doctors at The Christie and Salford Royal.
My verdict on the NHS - Fantastic.
Best wishes to all
Hilary
Hi Hilary
Sorry to hear that you have had a recurrence, after such a good long remission. But glad to hear that your Drs seem to have everything under control at the moment and you have not had to have a stoma. I am just getting used to my stoma following my surgery in December. It's not as bad as expected and I have become quite proficient already.
What would we do without good old Movicol? It was, and still is, a big help with bowel problems. I will probably still have occasions when I need to take it, as having a stoma doesn't mean my previous sluggish bowel problems will be any better, unfortunately! I do have to watch my diet though.
Glad to hear you are pain-free and feeling really well at the moment. Long may it continue. I hope things continue to improve on your next chemo regime. Best wishes
Colette xxxxx
Thanks Colette.
I am on a low fibre diet now. Goodness knows what my cholesteral will be though. All the things that I can't eat are what I should be eating and not all the chips, white bread, etc etc.
Got my appointment through this morning 8.20 am 29th Jan. A very early start. Find it hard on these cold mornings to get going early. Supreme effort required........
Best wishes
Hilary xxx
Hi! Whippit!
What a task you have taken on here! I'll be brief as I've already told my story today in response to another question.
2005 - Glasgow Royal Infirmary - surgery: total hysterectomy +removal of omentum followed by usual 6 carboplatin+ taxol as advised by NICE/SMC.Result was almost four years of remission.
2009 - 2012 -Beatson Cancer Centre,Glasgow - 6 carbo+ taxol followed by 8 months remission: further 6 carbo+ taxol followed by 6 months remission; caelyx - not really effective when the dose had to be reduced due to skin reaction; topotecan - not really effective when assessed on CT scan after 3 treatments.
I have now started on weekly taxol and am hopeful that it will be more successful. I am able to have it again since 18 months have passed since I had it before. If not effective I believe that the next to try will be cisplatin. By now of course I do have various bits of spread and control rather than remission is probably the realistic expectation. I was allergic to carboplatin from the beginning but it was managed in the way someone has already described with steroids and anti-allergic drugs and being given very slowly. It is the Macmillan Day Case Unit I attend and am well remembered by the long suffering nurses there for more or less being put out with the milk bottles at their closing time of 8.00p.m. during that chemo.
I find the Beatson very good and proactive in their approach. I suppose a measure of this is that in the autumn an associated centre will open.It is a Cancer Translational Centre built with £10m raised through corporate and public subscription and the focus of the researchers there will be the translation of research into treatments.If anyone knows of this elsewhere I would be really interested to know what impact it had. I am in sympathy with those who feel we should try to give oc.a higher profile in terms of treatment as well as early diagnosis.
Hope his info. is of interest and use. All the best
B.
Dear Becalm, It was really good of you to add to the list. I've started to organise it into a spreadsheet which might be a helpful reference material, but in order to complete the picture I probably ought to follow up some of the posts for more detail. You've done really well and it must've been great to have such a good long first remission. The good thing I think about what everyone's written is that it can be a start for new conversations to compare notes. There seem to be varying opinions on treatments and provision in the different NHS Trusts.
I've recently finished my first line chemotherapy and await my 6 month check up next week. The blog has fired me up with lots of questions when I meet the consultant again.
I hope your weekly Taxol goes well for you.
Xxx Annie
I live in belfast and am under n.h.s. city hospital.My oncoligist is very good.I was diaognosed a 3c december 2009 Had surgery removal ovaries debulking appendix removed and lymph nodes removed and omentum.Had 6 sessions of carboplatin and taxol was free for 10 mths then had 6 more sessions of 3 weekly carboplatin and taxol again.Only got 6mths. free then reoccured again .I now atart 18 weekly sessions of taxol on its own.My feet are badly damaged and painful from last 2 treatments so am dreading what they are going to be like after 18 more!Start my treatment on monday.Would love to have tried avastin drug but my health board said it was only available to first line patients.I was annoyed because I feel we should have the drugs available to us no matter what line we are at.If theres a chance it will help us surely all these drugs should be open to us.I just feel we as suffers dont have enough say or input in our treatments.We more or less have to do what we are told.Also it all differs over the u.k. which is not right surely the goverment should set it up that all boards work of the same hymn sheet.There should be no post code lottery in our treatment.All drugs should be explained to us and given to us if we want them.It shouldnt depend on money or funding as its our lives that should be the priority not the cost.Sorry for the rant but its so frustrating. una belfast.x
Dear Una, thanks so much for posting on this blog. It's an interesting read and provides links to other blogs with information about different treatments. I'm still trying to figure out why my lymph nodes weren't removed. I recall my oncology-gynacologist saying she wanted to take them out but her supervisor said she mustn't. You've given me another question to ask at my next review - why they weren't taken out and would this have been the case had I been treated elsewhere. I'm aware the spread on my lymphs was wide and deep in the abdomen. Hopefully that is the answer.
I've also ben told by my team that Avastin is only for first line chemo - but it wasn't discussed at my first line chemo so I'm not at all happy about that piece of advice. My GP says it's come down to who shouts the loudest gets the treatment so I'm hoping all the information on this site helps us all to shout - very loudly. I was told Ovarian Cancer is outside the field of knowledge though much research is going on. I'd have a go at a research trial if offered but have not been invited so far. Not sure whether there's much going on in the research field in Wales compared to hospitals like UCL and the Royal Marsden.
Sounds as though you've had good treatment so far ... but I'm sorry to hear you're suffering so much with Taxol. I was told it was only 10% of the cure and have been asking ever since why it's given before seeing if Carbo-Platin works. I didn't have any side effects from Carbo-Platin and only had that one treatment due to an admin error. I'd really like to make a database from all the blogs. I did read on one that an oncologist said there had to be a specific break before repeating the Taxol dose. Do you know why they decided to cut out the carbo-platin?
Hope all goes well for you with your treatment. xxx Annie
Hi Greater Glasgow and Clyde NHS trust . Have had x 3 cycles of carboplating and paclitaxol and then surgery and soon tostart further 3 cycles of same chemotherapy . Have been advised stage 3b . After chemo ca125 down from 480 to 25. After surgery no macroscopic disease seen . Oncologist advised avastin only given to patients with bulky residual disease after surgery
Hello,
I'm 32 Years old diagnosed with stage 3c in May 2011
As a private patient I'm under the BMI Hampshire Clinic,
Received Carboplatin/Taxol but after second cycle of Taxol had reaction and changed to Abraxane
CA125 was highest 250(not very good indicator) and lowest 38. At the moment 90
The operation I had at Spire Southampton Hospital,
Have had 3 cycles of chemo before surgery and 4 cycles of chemo afterwards. Have had full hysterectomy, omentum and lymph notes removed. Some of the tumor on the liver wall was removed also some cancer spots on abdomen wall left which means I'm not clear of cancer.
From November 2011 on Avastin
Cancer is returning slowly( cancer spots on abdomen wall started to grow) and been Referred to Royal Marsden for a second opinion.
Still on Avastin, cancer under control at the moment even there are changes in abdomen wall and waiting for right time to start second line of chemo ...
Other than that i feel very good, back at work as part time also swimming, going to gym and aerobic. Travelling a lot and enjoying life...before chemo starts all over again
Love Zuzi X
Hi
I was diagnosed with OC in Dec 2011. Ca 125. 2089
My hospital of treatment is Wexham Park Hospital Slough
Oncologist is Marcia Hall who has been fab ( until this last week of anxiety)
Plan was for 3 cycles of carboplatin and taxol. Taxol would be weekly and carbo every 3 rd week then surgery debunking then 3 more cycles.
1st chemo on xmas day
Surgery in March 2012. Ovaries/ Fallopian tibes, uterus, omentum, appendix, part removal of rectum. Good recovery
6 th round completed 24.6.12.ca 125 down to 128
Saw oncologist every 3 weeks, she has a lot of experience with OC
10 weeks on ca 125 shot up now 800, had rib pain for last 3 months of chemo... Oncologist thinks nerve pain, but I was concerned bony metastasis.
Full body scan 3/52 ago still no results.... Am getting symptoms since aug 25 '12, feel that cancer is spreading like wildfire in abdomen. Spasms... Terrible period pains but no uterus! Now think ascites coming back..... Joys !! Onto oncologist for a 3 rd time tomorrow.
Chemotherapy at Slough and staff very professional and caring, as has been my oncologist.
Hope this helps...haven't seen any other postings for slough. No support networks here, so hope to become a ROCC and get support in this area x must keep well......
Dear Midwife Gill, Your post is really helpful and interesting as you had weekly Taxol and 3 weekly Carbo-Platin. Did they explain the rationale of that combination?
You've done so well but I'm really sorry to hear you've got so much pain, and also that you're worried the ascites might be making a reappearance. I'd imagine it's so much worse for healthcare professionals as you know so much. I'm blundering on in blissful ignorance but like you determined to get to my optimum health-wise. I'm keeping my fingers crossed for you that the pain might just be post-op. You had so much more done than me and yet I had quite severe pains that were a worry.
I'm like you in that I hope to become a ROCC. I'm doing my training at the Ovacome Office this Wednesday. It's good to have a focus to take your mind off all the worries you've got at the moment.
I hope you'll post up how you get on today/tomorrow with Marcia Hall. (Looks from your post as though you were uo in the early hours of the morning.) At least it sounds as though you have confidence in the hospital at Slough.
Xxx Annie
Hi Annie.... Think I may be training with you :-). No news from oncologist despite calling her secretary at 9 am.. She said she would go along to Marcia hall's clinic and report back.. But hasn't so who knows.....
My weekly taxol I am told is following a Japanese trial... It is supposed to be effective.
I was also enterered into the 'petrov 'trial at mount vernon intra perintonial chemotherapy. I withdraw as randomised to IV access which I was having locally. I reacted to mont vernon CR scan medium. I had optimal clearance with de bulking so could be put forward for the trial. I was so I'll after the CT scan took metro bed for 9 days! Lost 3/4 stone!!!
See you Wednesday 1-5
Gill
Whippit, this is an excellent piece of work collatimg info. My wife was diagnosed 10th Aug with OC. Put on 3 lots of taxol/Carbo to shrink masses as scans showed spread to various parts of abdomen incl shadow on liver so defined as 3c. Referred to Gateshead as specialists in radical surgery and can tackle liver etc. They said important to remove all disease very thoroughly which some hospitals can't do. So they are training them. Prefer to work on fresh tissue as chemo causes scarring making surgery bit trickier but are aware many hospitals standardise to go for chemo first. We are hoping surgery has good effects. All staff we have encountered excellent from day one, only brief hiccups and frustrations but not docs and nuses who have been great.
Dear SueH1
Thanks so much for adding to this blog. It's turned out to be a useful information toolkit - particularly with the review of the standard of care for Ovarian Cancer in the various NHS authorities across England. Ovacome have organised a meeting at Westminster next Wednesday for members and their families to meet MPs to ask any questions they wish about their local care. A report has just been released by the Office for National Statistics on the Index of Cancer Survival for Primary Care Trusts in England. The report can be accessed at: ons.gov.uk/ons/rel/cancer-u...
I'm going to the Westminster meeting though I live in Wales and very sadly responsibility for health is devolved to the Welsh Assembly Government. No such study has been made in Wales yet but Ovacome are committed to following progress this side of the border too.
I'm really pleased to hear you feel your wife has had such good treatment and it would seem at a centre of excellence. I attended a lecture by Professor Hani Gabra of Ovarian Action recently and he said the improvement in survival rates is directly related to advances in surgery and the skill of the surgeon. You were fortunate your wife (Sue?) was in such good hands.
Hope to hear how everything goes. I feel a bit bad about calling you Sue assuming that's not your name. Mine's no better - Whippit! My name's Annie.
Let us know how you both get on. It largely depends on the size and locations of tumours whether they shrink them first with chemotherapy or not. I had surgery first because I was referred as an emergency. It just shows you shouldn't believe stats. I read somewhere that people referred as an emergency have lower survival rates. I've scotched that idea so far.
Wishing you both the best.
Annie x
Annie, I wonder a bit about the apparently standardised approach of doing 3 chemos, surgery, then 3 chemos. Reading through all the comments that you have prompted it seems that the surgical expertise is confined to a few places. Some people seem to be told that the masses must be reduced before surgery can be conducted but is this true or is it that not enough places have the surgical expertise? Also once chemo is started the masses are scarred which can make surgery more difficult to conduct fully. Some centres that are more confident crack on with the surgery and follow up with 6 chemos. Your research has shown quite considerable discrepancies in treatment across the country. Has Ovacome followed it up? You mentioned that you might ask them to include a template on the web site etc.
hil65wil
0 minutes ago
Delete
Been trawling through this blog as a newby.
I too was on Icon 6 trial at the Christie. Didn't have any side effects so became convinced that I was on placebo. Came off it after 18months and onto Carbo/Caelyx Now waiting to go on Rotterdam Regime at end of January.
First diagnosed 2001 had hysterectomy, ovaries removed and omentum at St Mary's Manchester. Was told 2c and that the serous tumour on the left ovary had been completely removed. Followed by 6 3weekly sessions of Carbo/taxol at The Christie... regular checkups going to 12monthly was going to be discharged after 10years when recurred. As attached to bowel had op to give me stoma at Christie unfortunately also attached to bladder so debulked, hernia repaired and stitched up that was in 2010.
Carbo/taxol followed plus Icon 6 trial. After 3 cycles of taxol because of the effects on my feet and fingers it was stopped and carbo only.
CA125 rose to 29 in 2011 and a scan was done showing growth of markers plus bits and pieces in abdomen. All major organs clear. 13 months after last chemo I was on 6 3weekly carbo/caelyx. I finished Feb 2012 My scan showed as stable but in May I had my first episode of a blocked bowel caused by the tumour pressing on the bowel.
Had a stent at Salford Royal. On holiday in Cornwall September I had another episode and another stent inserted. November saw me back again but enema sorted me out.
I saw the bowel surgeon last week and as I am okay at present on regular Movicol it was decided not to press ahead with stoma. Now I am to start my 4th chemo end Jan on the Rotterdam Regime.
Not in any pain, fitness levels still pretty good.
So very grateful to the local Practice doctors always there at the end of the phone if needed to chat, all the marvelous staff and doctors at The Christie and Salford Royal.
My verdict on the NHS - Fantastic.
Best wishes to all
Hilary
Dear Hilary
Thanks for adding this. It's a very different path from any other listed. You do seem to have done well so far - so good luck with the Rotterdam Regime at the end of the month. Please let us know how this is going.
love Annie xxx
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