after being told there is no visable cancer left in me.. and that i am an unusual case.. ive been told to have chemo...
carboplatin on its own or with taxol... i really dont want to have the mix..
has anyone else been given the choice??? and what did you do???
my head is a spin and im so tempted not to have any chemo..
xxx
Hi Suzanne,
Yes, I was also told that all my tumours had been removed intact, and that I was unusual in that usually there has been some breakage or 'escape' during surgery. I was also v inclined not to have chemotherapy. However, I was persuaded that it was sensible move when they explained the likelihood of recurrence, and that it would be an insurance policy.
I was also given the information about the drugs and told that I was having carboplatin and taxol. I am experienced with drugs and their effects in my professional life (and aware how little the medical profession know about the drugs they use, and especially about the after-effects. I quizzed the oncologist closely about both drugs, and the other trial drugs I was leaned on to have. My agenda was to get the best insurance policy with the least impact on my general health, so I said I would have carboplatin, but not taxol or any of the trial drugs. Sorry, but at that stage I just wanted the best and quickest intervention for me, and wasn't swayed by the emotional blackmail of testing things for others.
Eventually, the oncologist shrugged and said well 'carboplatin does 90% of the good with 10%of the damage; taxol 10% of the good with 90% of the damage'. I have to say, it took me at least 18 months to recover from the carboplatin properly! I don't know if I would have chemo again. I would give it a lot of thought.
I stress, you must do what you feel is best for you, but it is to some extent a shot in the dark, and you might be find without chemo at all.
Very best wishes,
Isadora.
thanks.... i feel the same way i want the best possible treatment but with the least impact on my life.. and ill be honest im too scared to have both...
in my mind i have decide to just have the carboplatin on its own,, im just worried i might be cheating myself...
were you ok after chemo??? have you had any reoccurances???
xxxx
I was ok. It was hard to be precise which problems I was left with were chemo, and which menopause. However, I was anaemic for many months, and still take iron sometimes.
No, no recurrences!
Isadora.
Hi Suzanne,
I am a newby to the site only joined yesterday, but I hope with a wealth of experience, as I am into my 5th year of fighting late stage ovarian cancer. I can only speak for myself , but when I had my de baulking surgery there were no visible cancers left, but they still started me 6 weeks later with Carboplatin and Plaxitaxol to kill any remaining cancer cells that were not visible to the human eye.
Chemotherapy is horrible, it does awful things to the body but without it I wouldn't be here today. I have now been on chemo for 3 years & 4 months without a break. Sometimes every 3 weeks, sometimes twice a month and at other times weekly. I have had very little time free of chemotherapy, but if I want to fight my cancer, unfortunately the only way to do it is through chemo. I urge you go ahead, the body is tougher than you think. Chemotherapy is maintenance treatment for me for the rest of my life.
I live in Spain and am fortunate to be under a wonderful system when it comes to fighting cancer. My Oncologist is the President of the Spanish Oncology Society and a renowned man in the Cancer World - would I argue with a man like this, all he wants is for me to survive. Yes quality of life isn't always there, but I would rather be here in my condition than the prognosis I had in Jan 2008 - you only have months to live. My wonderful man here gave me the drugs to enable me to be here today. I have had a small relapse and am back on Carboplatin with my Avastin, the Carbo is really making me feel ill, but I will KEEP FIGHTING !!
I wish you all the best in your decision making.
Anna
Hello. I was given this choice, too. It was a nightmare of a decision, I felt at the time. As both drugs tackle cancer cells in different ways, I decided to go for both. My reasoning for this was that I have two children and I felt that, if the cancer came back, I would be cursing myself for not trying everything available to me. (I am told that if my cancer comes back it is not curable.) But it really is a personal decision. I was fortunate that I wasn't too ill during chemo (other than for a bout of neutropenia). I finished chemo at the end of April and the only side effects I have now are aching bones, a little bit of neuropathy in my right hand but nothing major. My concentration and memory are improving little by little. Once again, it's different for everyone. But I know it helps to hear from various people. Good luck in your decision-making! Sara
thankyou for your experiences it means a lot. xxxxx
I am on carboplatin only my oncologist wants to keep toxal as reserve, I have had two chemo sessions and havent found it too bad,constipation being the worst so go for it, ask your oncologist again what he would recommend, good luck,let us know how you get on.(did you make any phone calls ?) xxx
I think I will go with the carboplatin.
Can I ask wot stage ur cancer was at though, bosue? X x
stage 3.x
and your ok now???
im at stage 1a so carboplatin will cover me wont it??
xx
i havent called anyone but my distict nurse has referred me to someone i can talk to. xxx
I'm pleased you can talk to someone. I've to have 6 sessions 3rd one next week but ca 125 is dropping so seems good. x
I was diagnosed with stage 1a o.c eleven years ago and have just been discharged.. I was given 6 sessions of carboplatin after surgery and told it was the cream to go with the jam. I had no serious ill effects and was able to carry on as normal. My only real side effect lasted for about two years and this was a form of severe excema. I also broke my arm two years after carbo and I am sure this was due to a weakness due to the carboplatin. But side effects during treatment were nil and I kept up my horse riding. So I say go for it.
thankyou pammy..
i think i will go for that rather than the mix...
thanks to everyone means a lot that your all here..
xxx
Dear Suzanne,
I went with both as the taxol gives you a 10% better chance than carboplatin alone. My daughter asked the oncologist what he would advise his mother to have (he was very young) he said ''both'' so I went with that what was good enough for his mum was good enough for me. I was in remission for two and half years but now have a recurrence so started carbo/taxol again three weeks ago have more chemo next Monday. I had no visable signs of cancer after my op. I have no regrets in taking both.
My very bast wishes Gwyneth
Hi Suzanne,
I have just finished my six sets of three weekly sessions of carbo & taxol. In terms of side effects I have had very little problems a few joint pains for a couple of times each session a little bit of tiredness occasionally but I did suffer total hair loss which I found extremely upsetting. I am only 50 and believe age plays a big part in how well you can tolerate these drugs.
I was the same as you, no visible signs left after surgery and my oncologist told me that in terms of effectiveness there was not too much between carbo on its own and combined with taxol but statistically it was about 5% more effective in combo.
My biggest problem was that during my first treatment I had an instant allergic reaction to the Taxol which was scary; they gave me some more anti reaction drugs and was able to then have the treatment. For the subsequent treatments I had to take lots of steroids the night and morning before treatment to counter the reaction. These give you a lift when you are on them but for the next three or four days after you have taken them you go through a sort of withdrawal and become extremely down and emotional (on top of the extreme emotions you are going through anyway), but I continued as if the cancer was to reoccur later and I had stopped the Taxol (this was an option offered to me) I would have kicked myself.
Whilst I understand this reaction is quite rare (2% of patients). I met a lady at our local cancer support group who had the same reaction and elected to use the carbo only (she kept her hair).
The other thing you should know is the taxol takes along time to administer (3-4hours) but the carbo is only 30mins so if you have both it can mean all day in the hospital I used to arrive at 9:30 and sometimes didn't leave until 17:00.
Every body reacts different to the treatment, on the treatment ward I met an older lady who was not tolerating the carbo/taxol well and so had to have hers as 18 weekly sessions of a smaller doses instead of the usual 6x3 weekly sessions. It’s a personal decision you will have to make yourself and unfortunately everybody’s experience on the treatment will be different.
All the best
Sarah P
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