Strange but true

[julie93]

I'm having my 4th round of chemo since being diagnosed.

Each round has consisted of 2 drugs.Platinum + taxol or caelyx.

But this round, I am having platinum alone.

My ca 125 is coming down faster this time than last time.I assumed I was having a higher dose of platinum this time, but asked my consultant when I saw him last Monday and this is not the case.

I'm really happy , particularly as I feel much better than when I started. It doesn't seem to make sense though.

Julie

[Whippit]

Dear Julie

I'm delighted to hear your CA125 count is going in the right direction and that you feel so well.

I only had carbo-platin and was told I would have a higher dose than had I been given Paclitaxol too. I had the same experience - that the CA125 count plummeted after just one session and has remained low ever since. My oncologist said, 'Some patients never cease to surprise me'. I also never felt ill on cargo-platin alone.

It would be interesting to take all the women who respond in a positive way to one dose or another to see what commonalities they have. I'm sure Lizzie mentioned that response to chemotherapy was linked to enzymes. It does seem a bit hit and miss - and I did wonder why I had to have six sessions and whether this would lead to becoming platinum resistant earlier.

I'm seeing my oncologist next month and will be asking some questions. I would be happy to share his/her responses if you are also asking the same sorts of questions. I've never quite understood why they don't try carbo-platin alone for a couple of sessions to see if it works - Paclitaxol has such terrible side-effects.

Best wishes.

Annie

[julie93 in reply to Whippit]

Hi Annie

Yes i have asked loads of questions and try to keep up to date with any research.I think your Doc summed it all up with 'Some patients never cease to surprise me'. With each round of treatment I have felt like I'm entering another round of 'The lottery'.

I'm pleased and surprised at the results of this round so far, but I'm left wondering whether I would have done better , or just as well , if I had been given platinum alone for earlier treatments.

I hope your appointment next month goes well, and yes I would be interested to know what you learn.

Best wishes,

Julie

[bosue]

Hi, I was on carboplatin, the first week in went down to 32 then gradually built up to 42 at the end of 6 sessions, was told not to worry, but scan showed it was back, now on pacitaxel/mitoxantrone, only had one session so far so dont know the results, bit worried why the carboplatin didn't work the first time, still time will tell. Wish you all well and be interested with your results. Love Sue x

[julie93 in reply to bosue]

Hi sue,

Hope you are feeling ok on the new treatment.Have not heard of mitoxantrone. Whats it like?Shall I add it to my list of drugs I might try.?Will be really interested to hear how you get on.

Best wishes

Julie

[bosue in reply to julie93]

Julie, will let you know, the only dreaded side effect at the moment is constipation ! it took 5 days and nearly a box of movicole,is there anything out there better ? anyway will let you know my ca125 trend. Love Sue

[harley]

Hi,

I have undergone two rounds of chemo for PPC, first six sessions were paclotaxel/carboplatin, 10 month break then at session 8 i had an adverse reaction to carboplatin (which is fairly common) and continued with paclotaxel on its own, with the same positive outcome, I asked about caelyx along with paclotaxel and they told me they would save that for next time - oh goody, something to look forward to. Anyway, I felt and looked (so people tell me) a lot better with paclotaxel on its own but lost my hair again. Some chemo drugs can be administered in pill form which allows people to lead a normal life instead of the repeated 3 week cycle of drips and clinic appointments. Why is there not more research being done to prevent recurrance i.e. the gene research, repeated rounds of chemo for OC patients costs the NHS millions.

I try to stay positive and lead a normal life but it is impossible to make long term plans when I dont know whether I will be undergoing more chemo at any point or not. This week I have my first 3 month check up after getting the all clear for the second time in Jan as well as standing again in the local elections, I have been a local government councillor for the last 13 years and it was a tough decision whether to go for it again, after much deliberation I decided that not to would be admitting defeat to this unwanted lodger. Will let you know how I get on on both counts.

[Whippit]

Dear Harley

I'm really delighted to hear you're continuing with your political life. There's no reason to give up but unfortunately perceptual discrimination does go on where people think because we have a disability we should back off from commitments and lead some sort of sedentary life. Good luck in the election. I hope you write a blog. It would be so interesting to follow your progress in the political sphere.

Do you know if the pill form of chemotherapy is less likely to have so many side-effects. It certainly sounds a lot more palatable to me than having needles stuck in my arm. As you say, there are many drugs they have up their sleeves and I can only hope that in our lifetime there will be a breakthrough. It all seems very random at the moment.

Love your description of the 'unwanted lodger'.

Looking forward to hearing your news in both areas.

xxx Annie

[julie93]

Hi Harley,

This is certainly a big week for you.As you say, its impossible to make long term plans, but we have to , otherwise we admit defeat.

Thats interesting,that you had Taxol alone and it worked just as well as platinum and taxol. There is clinical trial I may try, depending on what happens next, which involves having weekly taxol+ an experimental drug. Have been told I don't fit their entry criteria as i have remained sensitive to platinum.So if platinum stops working for me, thats what I would like to try.I find it helps me mentally to have a back up plan.

I certainly agree with you about the lack of research.Have become involved in fundraising and awareness raising for Target ovarian cancer.Also went to a meeting in London in February.They have raised funds for research and are currently considering which proposals to fund.

I hope all goes well with the appointment , and the election.Will be waiting to hear how it all goes.

Best wishes

Julie