I was diagnosed with ovarian cancer stage 3c in Feb 15, had optimal debulk and carbo/taxol. In January this year I had my first recurrence and started carbo/Caelyx. I was quite ill throughout but completed the course in July. Since then my CA125 has started to climb. On Monday I was told they have gone from 140 to 155 in three weeks, that the cancer is active again, therefore the chemo was ineffective. I have also been told that because I am BRCA negative there are no other options. I am devastated and cannot stop crying. I am to have an MRI in the next two weeks to see what’s going on, but I am so frightened. The forum is full of wonderful ladies, so generous with support despite their own problems, so I wondered if anyone could offer me any advice? With love and best wishes to you all. Carolyn 🌸
Help, advice or comments please : I was diagnosed... - My Ovacome
Help, advice or comments please
Hello I am on Carbo/caelyx for my 1st recurrence and am also BRCA negative. At my last oncology clinic I was told that after this course of treatment I would be offered Niraparib, which is a parb inhibitor, and then after that clinical trials. Depending on where your cancer has reappeared I believe that more surgery is also an option. I think you should request another appointment with your oncologist and ask them to go through the CTscan and also how they have arrived at this conclusion. Gaining a 2nd opinion is also an option. I am not surprised you can not stop crying, get them to explain everything again and make sure if possible you have someone with you, if not record the appointment on your phone. Good Luck
Thank you so much. In August, a few weeks after finishing chemo, I asked about Niraparib but was told I would be unsuitable because I had been quite ill on chemo, then the raised CA125 meant I didn’t meet the criteria anyway. My oncologist also said that I was not suitable for any further surgery. The MRI will show where it is but I may ask for a second opinion, but won’t other oncologists say the same? Thanks again for such a prompt reply to my appeal, I feel in despair. Hope you are doing as well as possible too. X
After your MRI a multi disciplinary team will look at the results, this will include a gynaecological surgeon, only he can decide whether surgery is possible, not your Oncologist. I think you should still seek a second opinion as to whether more chemo/parb inhibitor/clinical trials are viable options for you, from another Oncologist, even if the answer is the same you will have peace of mind. Have you heard of the Care Oncology Clinic? They have a protocol that some women on here follow with excellent results.
Good luck
I shall look into the Care Oncology Clinic and also have read of a lady oncologist at the Royal Marsden. Both would be a 5hr journey away so I would need to feel stronger. Have you been to COC? I’m grateful to you for your suggestions. Thanks again. Hope that you are well. X 🌸
I think you might mean Dr Banergee at the Marsden / she is an excellent oncologist and knows all there is to know about clinical trials And chemo. I haven’t been to the COC as still in treatment, but I am not ruling it out for the future.
Hi Carolyn, I can’t give you any information but couldn’t read and run. I’m so surprised by your oncologist response.
1st recurrence and nothing else available treatment wise??!! Where are you based?
My mum is also BRCA negative but I’ve read there’s a PARP drug (I can’t remember the same sorry) available for both positive and negative bcra.
Why can’t you have taxol again? That worked first time round? Forgive me if that’s a stupid question, but I can’t see why you wouldn’t.
Clinical trials also, something to look into.
Xx
Thanks for your reply & lovely of you to respond. I think the drug you’re referring to is Niraparib, but I no longer qualify & it also has to be started within 8 weeks of finishing chemo. I shall ask if I can have taxol again & I think there are trials at Leeds which would be the biggest centre near me (I’m on the North Yorkshire coast). I need Hope, which I feel has been taken away, perhaps unintentionally. Best wishes to you & your Mum. Xx 🌸
Hello Carolyn,
dreadful news for you to have to deal with. Please don't accept it. Leeds St James is an excellent hospital so please get in touch as soon as you can. Have a good cry and then start searching for answers. I feel your pain as do an awful lot of ladies on here.
Lots and lots of love to you
Angela xx
Hi Angela. I have just written you a long reply only for it to disappear! So apologies if this comes in two versions. You are so right, today is the first day I haven’t been in tears, a little ray of hope is returning, and I am starting to look into all the suggestions that the wonderful girls on this forum have suggested. I attended an Ovacome Day at Newcastle last November and a doctor there asked me if I had considered going to Leeds where he said there was a lot of good work going on. Do you have personal experience of this? Do you know if they are doing any trials? Has Maggie’s opened there yet? Sorry for all the questions but I think I will need to gather a lot of information quickly. Thank you for your helpful response and I do hope that you are well. Love Carolyn x 🌸
Hi Carolyn,
I may have already replied to your post but not sure. I don't have personal experience of St.James in Leeds as I'm in Sheffield but I heard such good reports about it from friends I googled sometime ago to find out more. They have opened a new cancer unit near Leeds which sounded most encouraging. I rang to ask if they used Plasma Jet surgery there. They don't but they were very kind and helpful so I suggest you get in touch. I don't know if there is a Maggie's there as I must confess I don't know what Maggie's is.
I'm thinking of you.
Love Angela xx
Hi Angela. This is good to know and I shall definitely look into it and see what they are doing. Maggie’s is a centre for cancer patients and their carers to provide all sorts of support and information. I had heard Leeds were building one but the nearest in the north is Newcastle, which is a good 2hrs away. Thanks again for your help. I hope you are keeping well. Love x🌸
Thank you Carolyn and good luck with Leeds xx
I am praying and sending positive healing thoughts to you. I'm so sorry you are going through this.
Carolyn, GET A SECOND OPINION ASAP. Have they genetically profiled/tested your actual tumor tissue for somatic (acquired) BRCA ? This is absolutely imperative! It is not unusual to find BRCA1 or 2 in tumor material. Also, are you HRD+? These two things are essential to know. If you are positive then you can take Lynparza/Olaparib PARP. Genetic blood tests will not show what's actually in YOUR cancer.
I asked the oncologist at our meeting in September if the tumour tissue had been tested. He said he didn’t think so but could have it done now. I shall follow that up. What is HRD+? Thank you for your helpful reply. Hope you’re doing well. Always good to hear from you. X🌸
Homologous Recombinant Deficiency. If you are positive for that and BRCA1 or 2, statistically you have a much longer Progression Free Survival. Google: SOLO 1 Trial Results
Thanks again for this information. I shall ask about it. This forum is marvellous for telling us things we don’t, but should, know. Many thanks and all best wishes. X🌸
We shouldn't have to become doctors ourselves in order to get the best care. I've had to become a private investigator/researcher in order to best advocate for myself. There are good trials/research results at BioMedical Publications on line. Read the abstract and results portions. Very helpful. Best of luck to you and be sure to get your tumor tissue genetically tested!!!Keep fighting this crap disease! You can do this!
Hello Carolyn,
I'm not in the same boat (yet) but if will be if I have rising CA125 at my next appointment. I was pleased at first about being non-BRCA but it's a bit of a curse! You are right about not being a good candidate for PARPs or other platinum treatments, but I think there are still other options. There are trials out there for platinum resistant ladies, also I believe some others have been offered weekly taxol only? It also might be worth contacting the Care Oncology Clinic in London to ask about their private trial of repurposed over the counter drugs for cancer, these drugs take a while to work but they are having some good results. Whichever way you go, don't be written off! There are other opinions out there as soon as you feel strong enough.
Your reply has given me hope. Do you know anyone who has had good results from COC? I shall be looking into this today, but I am so physically and psychologically exhausted from the meeting on Monday, that I am still struggling. And we’ve been burgled, too, so my safe place seems no longer safe. Thanks again. X🌸
Hi Carolyn, I had carbo and caelyx earlier this year for first recurrence. Initially I responded well but then CA125 started to rise and hence treatment stopped. I was swapped to paclitaxel weekly for 18 weeks and have just had number 13. Hope this helps. I asked my cons about treatment options after the initial failed chemo and she said there were still more options out there.
So my lovely, pull up those big girl pants and go kick arse.
Pen x
Your reply brought tears and smiles. I am sorry you have had problems too, but your advice about weekly chemo is so helpful. It sounds as though you have a really positive Consultant which must be so valuable. With the wonderful responses I have had, hopefully I will start to feel stronger soon. May even find those big girl pants soon! X🌸
Carolyn please don't accept that just because you're Platinum resistant that it's the end of treatment. I finished 3rd line in December with a ca125 of 196 and despite Niraparib my ca125 gallopped up to 10,800 in March and I felt very poorly. I started weekly Taxol and it went to 5,000 within 2 doses. With the addition of cedinarib at week 8 (CEBOC trial) my ca125 count was 41 five weeks ago. I feel better than I have done for about 18 months. There's more things in the toolbox and if your team say there's not, go to Christies or Royal Marsden to get a second opinion.
We're all here to support you and coax you through.
PS I'm BRCA negative.
Sandra 💐😘
Hello Sandra. I am so sorry that you have not had an easy path this year, but feel very encouraged that you feel much better now. Weekly taxol seems a good option so this has made me wonder why the emphasis given to me was ‘no hope’. Perhaps they are just waiting for my MRI which I am hoping will be in the next ten days. How, and where, did you get on the CEBOC trial? Are you at either the Christie/Royal Marsden? Thanks again for your kindness and support, it makes such a difference. Take care. X🌸
Hi there is a company called oncologica 01223734639 I read somewhere that the hospital could no longer offer chemo and Oncologica tested their biopsy and matched the cancer with a target therapy to that specific cancer it may be worth speaking with them. My mums cancer has sadly returned and her hospital would only offer chemo we paid for a private consultation at Harley street recommended by a lovely lady on this forum and found out that there are more treatments available so was really glad to get a second option so keep your chin up xx
I do feel for you, and don't think you're getting sensitive treatment from your oncologist so I'd definitely try to get a second opinion - don't be put off thinking you'd get the same result - it's incredible the variation in views on treatment. As LittleSan says, though you wouldn't qualify for Niraparib as your cancer has proved platinum resistant, that isn't the only thing available - especially for 1st recurrence. As your oncologist hasn't been helpful, look for clinical trials yourself - Cancer Research UK and Target Ovarian Cancer's websites can point you in the right direction, and think about requesting a different oncologist. Wishing you all the best - we're all rooting for you. x
Sorry I’m not much help all I thought when reading this is are u possibly low grade if chemo did not work ? This happened to me x
I don’t know whether I am low or high grade, it’s never been mentioned. How would I find out, and what is the difference? Such a good question, thanks so much for helping me. Hope you are keeping as well as possible. X🌸
Hi. The news is not good but be assured there are treatments out there that will help. Keep positive. What I have found is that many Oncologists seem either to be unaware that patients can become resistant to chemo drugs like the taxols or ignore it. This after it worked wonderfully to start with. In the USA it seems that they know this and use NSAIDs to overcome this. The resistance comes about as a protein is created by the cancer cells that fights the effectiveness of the taxols. This has to be overcome. NSAIDs fight proteins that cause things like Rheumatoid Arthritis. Your top Oncologists at Christies, Marden etc would know this and I do think you should speak to them. Keep strong.
Thank you so much for your helpful reply. I also have severe diverticulitis and this has sometime in the past influenced the result, but I was told this isn’t the case now, that the ‘cancer is active’. Use of NSAIDs sound hopeful and the advice is pointing me to seriously consider going to the Royal Marsden or Christie. Thanks so much. X🌸
Hi Carolyn,
I agree with all the ladies.....please keep fighting!
Ideas: Call the Ovacome Helpline/Macmillan Helpline
Talk to your GP - they can help with second opinions
Talk to your Oncologist again, go through things again
Think about Christina Fotopoulou at Hammersmith (a forward thinking Surgeon)
The Marsden & Christie’s are always pushing the boundaries with new trials
ONCOLOGICA is a medical company/laboratory in Cambridge able to test your original tumour for hundreds of mutations (it is private, so you have to pay, but may be worth it?)
Keep us informed.
Best wishes,
Linda xx
Hi Linda. Thank you so much for your comments. I have now heard that my MRI is to be Saturday 19 October. I am going to ring Ovacome today, I did message them but they said they were not nurses, but perhaps they will offer advice. And I shall look into Oncologica too. I am starting to come out of my black pit of despair after all the wonderful responses from the forum. Thanks again. X🌸
🌸🌺🌺🌸
According to your profile, you started out with breast cancer in 2015, is that right? And is the ovarian cancer associated, or is a result of, the original breast cancer? I only ask because I have a friend in that situation - she had breast cancer 15 years ago, and its come back in various places over the years since. It eventually turned up in her liver, and she's been on medication to keep it in check, though that now isn't working.
I think (though I'm not sure) if your current cancer is associated with the previous breast cancer, its a slightly different beast than a cancer which started in the ovaries, and available treatments may be different. If you decide to go to the COC or anywhere else, I think it might be important that you give them your complete cancer background, not just the ovarian history, or at least ask your current team if there is some connection between the two cancers. I hope you find another route through this... good luck.
Miriam
Hello Miriam. I was diagnosed with breast cancer in Nov 14, had surgery then radiotherapy. Four days after finishing this in Feb 15 I was diagnosed with advanced ovarian cancer. Some months later I had genetic testing where it was confirmed that they are two separate primary cancers and that there is no connection. I also had a check up mammogram last week and have just had the result that it is clear. I hope your friend continues to get good treatment. Thanks again. Best wishes to you both. X🌸
Dear oh dear, that's very unfortunate, having two separate cancers diagnosed in the same year. Seems counter intuitive that there's no connection, or that you're BRACA negative... as for my friend, she's now 72 and has been treated, now I think about it, for the last 18 years. They're trying something else, though its not looking good - but then she's had that 18 years of extra time and an active life, so she keeps positive. Good luck in your efforts to find something else... I'm gonna try COC myself!
Miriam
Well done to your friend, that is a very encouraging story. I looked at the COC website but nothing seemed to relate to ovarian cancers. How would you choose who to see? Maybe the shock/despair/chemo brain is preventing me from thinking clearly! Thanks again. Carolyn x
I'm going to call them again today about ovarian cancer specifically - at the moment, I'm gathering together all the paperwork they need before they even agree to take you on . Will get back to you if I find out anything useful, but the sort of off label treatments they use are likely to have some impact on any type of cancer I'd have thought...
Just spoke with them - its as I thought, these aren't targeted treatments, they're general ones so whether its ovarian or any other type doesn't really matter. Think of it as a bit like taking, oh, I don't know, apricot kernels or amla or beta glucan every day to try to deter any cancer cells, its more like that.
Now, all I need are liver blood results, got all the other stuff they want, I'm still gonna go along anyway, worth a shot I reckon ...
Miriam
Oh good luck! Please let me know how you get on, I will be very interested. What paperwork would be needed? I would need to ask the Consultant for mine. X🌸
Luck is exactly what I need, although I can't complain - stage 4b, debulking surgery January 2018,refused adjuvant chemo and I;m still feeling well even with a bit of ascites - but its active again now, so if I'm gonna have the dreaded chemo, anything that helps with that would be good.
Says on the home page of the website what they want for new patients, but basically they want your latest scan report plus a recent clinic letter which shows the exact cancer you've got plus bloods done in the last 4-6 weeks, specifically FBC (full blood count), liver and kidneys. They also say it will be at least a fortnight to get an appointment AFTER they receive your paperwork... pricing means I'll be raiding my savings!
Thanks for the information. Sorry to hear yours is active again too. I will wait for the results of the MRI then I will contact them. It would be great if we could meet up there! Please let me know how you get on. Take care. Carolyn x
Will update you re appointment... meeting up sounds good, I've come to the conclusion that people without cancer find it difficult to often be around someone who has it, especially if its terminal. Which is perfectly understandable, really...😊
Please consider getting a second opinion. I recurred during frontline chemo and was offered caelyx or a phase 2 trial in which I may have got just caelyx anyway. I decided to pay to get a quick appointment with a top consultant in London and within a week I was seeing a doctor at the Clinical Research Facility at UCLH. I have been on a trial for the last 21 months. Possibly the only good thing that can come from failing to respond to chemotherapy is that it opens the door to many clinical trials that are not open to people who are responding to conventional treatment.
Hello Neona. This is really interesting. May I ask that if I requested an urgent private appointment, do you then have to stay in the private system for all treatment or trials? Also would you feel able to tell me which Consultant and/or hospital you chose, and why? Thank you also for the very positive comments you made, I am beginning to feel hopeful again. All best wishes for your treatment. X🌸
Hello Neona, which trial are you on please? thanks, sticky3006
It is a phase one trial for solid tumours in general and is called Patriot. The drug is AZD 6738. I have clear cell and they don’t yet know why it has been working for me.
thank you! Good luck, sticky3006
My wife was diagnosed with OV stage 4 about 5 years ago . Several surgeries and tons of chemo later, her remaining mets started to grow despite being on chemo at the time. Mayo Clinic here said there was nothing else they could do.
We discovered Care Oncology then. Started their mebendazol compound protocol, and 8 weeks later, the tumors have started to shrink. 15 % so far, with another scan coming in 3 months.
The Mayo doctors were stunned.
Traditional medicine doesn't recommend the mebendazol treatment, as it is incredibly cheap, being readily available over the counter without prescription.
God bless you, keep researching and trying new things.
Can I ask if you mean the Care Oncology Clinic in Harley Street, London? Its the one that comes up when I google it...
Miriam
YES ! They have expanded to the US here in most states. They started in London.
Oh that’s really interesting. When I looked at the website this morning I couldn’t see any Consultant with ovarian experience. How did you get a Consultant? I wish you and your wife all the very best, and will pray for continuing success. 🌸🌼
As I understand it..... I might be wrong........ they have one doctor in each State they recommend to administer the protocol. Our doc assigned to us was hours away, and we spoke via Skype. He reviewed our medical records, and created a plan which was quickly mailed. They have nurses available 24-7 to answer questions. We have had some issues with stomach discomfort and increased liver enzymes, which they made helpful changes in the dosages.
So far, so good.
Hello dear my sister became platinum resistant during 1st reoccurence so she is now on taxol which is working. Taxol is a plant alkaline type of chemo not platinum like carbo.
Trials are also an option where do you live?
Sending hugs
Nancy
Thanks for this. I live in rural North Yorkshire but am considering asking for a referral to the Royal Marsden as I have a son in London, which would make visiting easier. Best wishes to you and your sister. X🌸
Hi carolyn
Where do you live? I am at whitby and care at james cook i have had second opinion at both christie and london for separate problems. I have had chemo twice and second surgery and a parp inhibitor, who looks after you? As my team are amazing and very progressive in their thinking xx
I agree with the others x go and shout louder
Lots of love
Diane
Hi Diane. It’s lovely to know of someone in my area! I am about 20 minutes away from you, but I go down to Castle Hill Cancer Centre. Were you referred to the Christie by your team? Good to hear you have good care at James Cook, I’ve only ever heard good things about that hospital. Hope you are well now. Carolyn x 🌸
Hello Carolyn
Yes after my first line treatment i had spots on my liver and i went for a second opinion to the christie referred by my team, they also agreed to my referral to London for my second surgery last year. I was on Niraparib for a year but struggled with it constantly so made the choice to stop them about 12weeks ago and i feel fab x recent scan clear, coming up to 6 years in January. If ever you want to meet and chat just let me know xx
Diane
Xx
Hi Diane. This is really interesting and encouraging me more to ask for a referral. Yes, I would love to meet up sometime, and often shop in Sleights so perhaps could meet for a chat somewhere. I am unsure how to private message someone and know we mustn’t put details on here. So pleased to read you feel fab and the recent scan is clear. Well done. Carolyn xx 🌸
So sorry to hear this, Carolyn. But there are other options such as parp inhibitors..niraparib, olaparib, etc. I would talk to the doctors asap. Good luck♥️
I don’t qualify for Niraparib now and olaparib is for BRCA positive ladies. But I shall look at all the options that this wonderful forum has suggested. Hope you are well. Best wishes. 🌸
Here, in the USA, they are doing trials with non-braca patients with success. I assume, across the pond, their regimine is different.
Do you know the name of any of these trials? I am starting to look for trials here so that I have the information when I see the oncologist. Haven’t a date yet though. Thanks again. Best wishes x 🌸
Hi I am the lady that used Oncologica to analyse my tumour it was so easy to use and definateley saved my life you can read my story on their Facebook page can't recommend them enough. Best wishes Karan.
Thank you so much for contacting me. I am not on Facebook so cannot access it, but it sounds a great success story. I am so pleased for you. All best wishes Carolyn.
Hi .. I'm exactly like you BRCA neg and now platinum resistant. Just starting the Octova trial in which one option is Olaparib. Ive also started the initial testing for the Patriot trial as one of the other ladies mentioned ( both at UCHL) and have signed up for tumor testing with Oncologica and a similar company in Israel which my insurance company will pay for. You can find more details on COC protocol in the book How to starve your cancer by Jane McClellan.....bit in-depth but really tells you how it all works .....
As the others have said- we've still got options and I for one am not ready to give in or give up yet !! X
Hello! This is so helpful to me and really gives me hope again. Did your oncologist refer you for the trials? Have you approached Oncologica direct? And has COC been helpful? Sorry about all the questions but this is so useful. Interesting, too, that your medical insurance will pay for that. I shall make enquiries of mine too. thank you so much. Good luck with the trials and all best wishes. Carolyn x 🌸
Advice please
1st reoccurrence?
Post-op pain four months after.
Advice please
Facing chemo for the 2nd time and frightened
