Hi, ive not posted on here before but read and keep up with everyones questions and posts. I just wonderd if anyone could give me some advice as I was diagnosed with 3c aggressive last november 2012 finished carbo/Tax middle april2013 this year . I started feeling some aches and pains in july and was given a scan but nothing was showing my ca125 was 6.8 when fished chemo but as the months went on it started to slightly climb 8.9 10.7 then 17.9 in oct but then last week it was 123.8 this was within 4 weeks. I feel that its looking like I am ressistant to carbo , my oncologist is booking me a scan and depending on how that looks when I need to go back on chemo she saying it will be carbo/caelyx I just wanted to know if this sound like the right chemo for me to try this time I am wondering about avastin also but have never been offered it or even spoke to about it
xx
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lancy
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I am so sorry that you find yourself back on the treadmill again, your oncologist would have you histology reports and would know what is best for you, I can understand your worry though and we are all different, you could give the Ovacome helpline a ring tomorrow (office hours only) they might be able to advise you and put our mind at rest.
Tel 0845 371 0554 or 0207 299 6650
Best wishes love x G x
There are a number of options, there is no way of telling which chemo is best. If you are platinum resistant then its unlikely carboplatin will be used. Although cisplatin is also platinum based it can be used with etoposide (rotterdam regimen). This is known to be effective but can be gruelling, the Christie often use this. Other options are Caelyx single agent, gemcitibine, weekly taxol. If however you are platinum sensitive then carboplatin will be used again in combination with those I have mentioned. Ref Avastin, depends on criteria and access to the cancer drug fund in England. Your oncologist will discuss this but if used it will be in combination with gemcitibine and carboplatin. If your platinum resistant then it may not be an option.
What was the pattern of your CA125 at diagnosis and during treatment? I know there are a number of different chemos to try apart from the combination your oncologist has suggested. Also I've heard that some oncologists are interested in platinum resistant OC - and I think perhaps you are borderline, because your oc recurred at the 6-7th month stage after treatment.
I think Gwyn's right - call Ovacome, they will know more. Vxxx
Hi , Thanks for the replys. At the appointment I asked my oncologist if it is looking like that I am ressistant , she just said as it is borderline that anything was back within 6 months or just over and she has not seen any scan results as yet she did not know. This is why I was worrying thinking is she putting me on just a guess work chemo that maybe wrong for me. Im probably over panicking and maybe should have more faith in her.
I think your feelings are natural. Getting a second opinion usually helps, especially if you go to one of the few centres that specialise in ovarian cancer. In my experience, it's better to be pro-active. Take care, Vxxx
Your oncologist reads too many books, it is not a hard and fast rule about recurrence before or after 6 mths. The best option tends to be the use of a platinum based drug as 2nd line treatment.Whatever treatment is chosen they closely monitor how effective it is with regular blood tests and mid term scans. The vast majority respond be it caelyx/carbo, rotterdam, gemcitibine/carbo. If however the response is not deemed effective then they will choose one of the remaining options. There are some obscure options such as trials and avastin but your onc may chat about them.
My ca125 was 700 before opp 200 afterwards then had two lots of chemo and they forgot to take a ca125 I was so angry I did not know that they should have been taking it untill I had the third chemo so then after 3rd chemo it was 27,then16, 10.7 and after last chem 6.8 three months check up 8.9
I live in the lake district my oncologist has to cover 3 hospitals mine is only a small hospital and i live 27 miles away with bad roads inbetween so when I need to get there fast its not good .
I understand. My local cancer centre, where I was initially treated, really didn't suit me, so I travel to one that is much better. Luckily, I haven't needed treatment yet, although I have had a scare or two (CA125 tripled, etc.).
I would suggest that you get a second opinion - even if you have to travel for hours to get it, very often so long as your oncologist agrees you can have the treatment locally. Also, at the big cancer centres, there's usually Macmillan, a Maggie's Centre, etc., sometimes a help centre run by the hospital itself, all of which help patients with the difficulties involved in travelling. You're in a very difficult situation, but I would suggest you call Ovacome this morning - their help line is very good.
This is a worrying time for you but it's good you're asking questions of your oncologist and discussing what options there are for your particular situation. I've been told are often quite a number of choices. A close friend had rising CA125 counts about six months after finishing chemotherapy and her oncologist didn't decide straight away whether she was platinum resistant. I think that's something you need to discuss further with your oncologist to understand their thinking on this. Many of us are also advised not to resume chemotherapy just because of a rising CA125 count. I've been treated by two different hospitals since I started to relapse a year ago and they both took the view that they would rather wait until there are some symptoms to go on or until a scan shows that it is the right time to resume chemo.
The choices I was given for 2nd line which I started last month, - for my particular situation - were carbo-platin and caelyx; carbo-platin and paclitaxol; or carbo-platin, gemcitibane and Avastin. I think it's always interesting and reassuring to ask why has the oncologist recommends one particular prescription over and above another.
Bevacizumab (Avastin) is only available for first and second line chemotherapy. Here is an extract from the National Cancer Drugs Fund (England) to show when it becomes a financial option from the NCDF. Your oncologist would advise whether you would be medically suitable for the drug. It is given in addition to chemo and inhibits the blood supply to the tumours which is thought to inhibit tumour growth. There are quite a few trials with other drugs that are thought to achieve a similar outcome by different means. You can look up the criteria for Avastin at the following website:
Bevacizumab The second line treatment of advanced epithelial ovarian, fallopian tube or primary peritoneal cancer where the following criteria are met:
1. Application made by and first cycle of systemic anti-cancer therapy to be prescribed by a consultant specialist specifically trained and accredited in the use of systemic anti-cancer therapy
2. 2nd line indication
3. Platinum sensitive epithelial ovarian, fallopian tube or primary peritoneal cancer (6 or more months after completion of first line chemotherapy)
4. Given with Carboplatin and Gemcitabine combination chemotherapy
5. PS 0 or 1
6. No previous treatment with bevacizumab or other anti-VEGF treatment
7. Bevacizumab dose to be 15mg/kg every 3 weeks
Note: Bevacizumab should be discontinued due to toxicity or disease progression, which ever occurs first.
Hope this is helpful. The Nurse-line at Ovacome will be able to explain in far more detail than us and I think you would find a call to them very reassuring.
Let us know how you get on. Keep posting and we'll do our best to help. xxx love Annie
Thankyou for this reply, I will call ovacome and have now have plenty of questions I see I need to ask .my oncologist. xx
The most important tool is the scan, The size and location of any disease will determine if treatment can be deferred or not. In Sandra,s case her first recurrence was within 3mths but due to location (spleen) it was deemed necessary to commence rotterdam even though she was still unwell from debulking surgery. We were in no position to argue with his decision. This was in 2010 so attitudes then are differant to now regarding holding treatment. It all depends if there are risks associated with vital organs. As I say the scan will decide.
Yes you right I need to get this scan done and see what im dealing with again thanks xx
Hi there Lancy ..I just wondered whether you had a biopsy and baseline scan done at the time of diagnosis? You're amongst friends here. Our family here has been an incredible source of support and encouragement to me and I hope for you too. Love Tina x x
Im not sure what base line scan is dont have all details or as much as alot of members on here , nobody ever sat me down and told me what the outcome of the opperation was apart from telling me they where able to take out all visible diseases, I read that it was grade 3c on my discharge notes the day i got home and took it badly, I know I probably shud have more facts but I just went along with everything as it came. The fact is I also suffer with brain tumours no connection but had a 12 hour opp in 2006 and then recurrence in 2010 and I take medication for epilepsy so i was not taking alot of notice with symptons that I now know I had as my medication have alot of side effects that are similar to oc symtoms and I still take them. I have at the moment 2 brain tumours that I am mri scanned for every 6 months as at last scan they where stable, as you can read I dont do things by half lol Still keep my sense of humour though. So Im not realy sure what I should be asking but have been getting some good advice on here today xx
Hi Lancy. The baseline scan is the one done before treatment starts so your oncologist can see how things are going. The fact that all visible disease seems to have been removed is a good thing. It's hard not to take a diagnosis the way you did. There's no good or bad way to react though as reacting is just expressing how you feel at a particular time and is normal. There are no emotion police are there? The 3c refers to the stage of your disease and not its aggressiveness. I was diagnosed as 3c too but expressed my emotion in a different way at the time. I was glad to get answers to the nightmare of madness I felt I was in and so could make sense of my own situation. I've run the range of emotions since. Mostly, I'm cheery as that's my default nature but this disease is hard to deal with. It's a roller coaster ride. That's why it's important to have emotional support. It was found later, that I was at Stage IV as I have lung lesions which are slowly growing. You have added difficulties to deal with but you seem to be taking them in your stride and yes, you don't do things by halves!. Humour does help. I find distracting myself with activities helps too. As Annie has pointed out, not everyone will have chemotherapy as soon as the CA125 starts rising. Chemotherapy usually starts when there are changes and symptoms are present. This is because not only does it give you extended down time between treatments, it means the treatment is given when it's thought to be more effective. A higher CA125 in people with the disease can mean that there is activity but like for people without the disease, it can mean that the marker is raised for other reasons unconnected with cancer. Your pattern of CA125 results are on the up but most of them are in the normal range. Your last one's elevated but it doesn't necessarily mean a recurrence. When I had a biopsy, I was told the grade. Were you? As Vicky has said, it could be that you have a slower growing type which has its own treatment regimes and pathways. It would be a good idea to write down the questions you'd like to ask and give the questions to your doctor to answer for you. They're used to that type of thing. I don't really know what treatment your oncologist will suggest should you need it. You have a pre-existing condition to take into account too. Annie has outlined in detail her own experiences and given you links. If your oncologist needs to apply to the Cancer Drugs Fund so you can get access to particular drugs, there are certain rules about who gets what and when. Your pathways are also guided by the National Institute for Clinical Excellence (NICE). Basically, their document outlines how money available for cancer treatment should be spent. As Gwyn has said in the first reply, you could ring Ovacome. She's put the number up for you. It'd be good to keep in touch ... In the meantime, sending you my love and best wishes .. Tina x x
Thankyou TinaB , My oncologist just said that mine is aggressive but has not gone into details, she only confirmed that as I did ask her that question. I think she only likes to give information when the questions are asked but really I did not know what I needed to be asking until now. I have telephoned ovacome this morning they confirmed that carbo/caelyx is a line that would be a choice for me and that the oncologist would know from my path reports the next lines to go down but told me to ask more questions and to ask if they are any other options so I that I will be confident in the choice when need to start next treatment.
I can not say how much I appreciate the time and help with information on here suddenly I dont feel so alone. I do have a great husband and daughter and some great friends and not alone really but just in the sense of being able to speak to people who understand how you really feel. I try and be brave and strong with the people close to me but sometimes that backfires because they dont realise when you need a bit of a pick up .
Hi there .. That's good. I like to know what options there are too as I feel I'm the biggest stakeholder in my treatment. I know what you mean about feeling alone. I started feeling less alone the day I posted here. Love Tina x x
my situation was exactly the same as yours - rising ca125 after 6 months of being clear - i also have grade 3c - had a scan and its come back in my lymph nodes in my back and my oncologist has recommended that i go on a clinical trial as i look so well and have no symptoms - it helps when you have faith in your oncologist - you feel like there are you side - good luck
Hi. I have exactly the same as you. Oc was 3c in june 2012. Had op and chemi. Responded well ca125 was down -5 by Dec 12. I have braca 1 gene. Was shocked when ca125 came back raised after 6 months. Cancer in lymph nodes in back. I was on parp inhibitor trial for a week but does was so high i was sick. Im now on tamoxifen. Last check up 6 weeks after taking tamoxifen ca125 was going down. Ct scan booked for next week so will know more. Im praying these tablets are working. My back hurts but i think its because i know the cancer is there. R u having any symptoms.
hi - go on weds to discuss it dont think its chemo - will let you know fortunately my onc runs the trials for the north west - and its a new one - so will let you know xx Christine
Hi lancy, my CA125 also started creeping up just like yours after finishing first lime treatment in Jan this year. I just started Carboplatin and Caelyx and its going well.
the lymph node in my groin went from the size of a brazil nut to the size of a pea after just one treatment. Side effects not too bad for me, just nausea. Got stronger anti nausea from onco for the next one.
I am a similar case to you I was diagnosed with 3a in jan 12 following surgery. I had carbo/taxol but reacted to taxol so just had carbo. I had chemo feb12 to july 12. Then got symptoms nov 12 and restarted chemo feb 13. For my second line I was given carbo /gem, I asked about avastin but live in wales and was not available and also at the time it was only showing increase in remission not overall lifespan. I went ahead with chemo because I felt had to get on with it, but do now slightly regret not taking more time to look into things.
I would say you do need to consider Avastin as I recently visited christie in Manchester and avastin is now showing to increse lifespan on average by nine months according to my oncologist. My understanding is that if you do not have it with second line chem, you may miss the oppurtunity as at present the cancer drugs fund will not pay for it for third line chemo. I feel I missed the boat with it and would not want the same to happen to someone else.
I believe it is important to know the grade of your cancer as it may not be resistance to carb it may be that it is chemo in general. I would talk to your oncologist again before embarking on treatment.
I would say I have had better results with carbo/ gem than carbo alone and my scans have shown reduction and 4 months on no symptoms yet
sharon x
Hi Lancy -- not much useful to add but wanted to be another support. Isn't it wonderful that we all have each other to lean on? You are facing what all of us who have got through first line fear, and my heart goes out to you. I have my one year scan New Years Eve - and not looking forward to it at all. To have gone back earlier with niggles would have been so upsetting... I spend half my life wondering if I feel anything going on.
Sounds like there's a way to go before they work out what's right for you this second time; make sure no assumptions are made and why not get a second opinion as suggested -- it can't hurt, and might ensure they think fully before deciding resistant/not and therefore what route to take.
Hi PRchick, Yes it is great to have such a wonderful site to have support and feedback on our concerns and worries we all go through. Im hoping to get my scan soon then I will no more of what I am dealing with. I live up in cumbria so was wondering if anyone had any advice if I was to get a second opinion which hospitals that specialise in our sort of cases ?
at the top of the right hand column are some ovacome pinned posts - one of them is about second opinions. there were several previous discussion threads on exactly how on earth you find someone both right and in accessible reach - I think ovacome could advise you on this, but recommend you read the post first.
as promised this is the trial I am starting next week - hope this helps x
its only just been signed off
TroVax® is a vaccine. A vaccine helps the body's immune system to recognise and kill foreign invading infectious organisms effectively. We believe that one of the reasons why cancers can spread through the body is that the immune system cannot recognise them as being different from normal cells and therefore does not kill the cancer cells. A vaccine that tells the immune system there are cancer cells in the body could help the immune system to target and kill those cells. This could be a useful new way to treat cancer. TroVax® is intended to work by making the immune system able to recognise a special protein (called 5T4) on the surface of cancer cells, and kill cells that have it.
The purpose of this trial is to assess if vaccination with TroVax® following a rise in CA125 can slow the growth of cancer and delay the time to chemotherapy.
You have been diagnosed with either ovarian cancer, fallopian tube cancer, or primary peritoneal cancer. You have had chemotherapy in the past to treat your cancer. Your doctor has told you that a blood marker, called CA 125, shows the activity of the cancer has now increased and it means that the cancer cells are becoming more active again.
Recently it has been found that if ovarian cancer cells are active but do not cause any symptoms that affect you (such as fluid in the abdomen (ascites) or in the lining in the lungs (pleural effusion)) immediate chemotherapy treatment is not helpful. Your doctor would monitor your progress but chemotherapy treatment would be deferred for later. There is evidence that the immune system (body defence system) is important in cancer. We hope that it is possible to strengthen the way the immune system responds to cancer by giving vaccines. have 12 injections one a week and ct scan before treatment starts and one after then every three months, they closely monitor bloods and if i am getting any other symptoms , swollen stomach etc
Hi everyone, Im having scan tomorrow and getting my results this friday, from all this infomation I will have plenty of questions . thankyou xxxxx I will keep you updated xx
Hi everyone , I have now had results of scan , oncologist and radiologist have seen a small somthing as they put it , they say it is the size of a thumb nail on my right hand side just above my c section scar ,they say they not convinced it is a tumour there was also mention of a very small amount of fluid but all inconclusive, so the oncologist says she would like to do another blood test in about six weeks to see what the count is and depending on the results she may then do another scan or leave again for another six weeks but if I get any symptoms before then im to contact her sooner. I have asked her about the chemo she offered carbo/caelyx and asked about avastin she looked up the information while I was there and has agreed that I could have carbo/gem avastin and keep carbo/caelyx as a option for another time. Does anyone have any thoughts on the chemo or the scan results I do have a grumbling ache/burn somtimes around the area that they have seen the thumb nail scar tissue ? Do you think it would be the better option to go for the carbo/gem avastin? would be greatful for any feedback
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xx
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