Had a upsetting visit to oncologist yesterday, she says my ca 125 is not falling, with the last 3 rounds of chemotherapy still at 257.... ,That I have become platinum sensitive. I have a beast within which will not sleep! Diagnosis 17/12/11 ca 125 at 2089.... First chemo on Xmas day, then 3 cycles of carboplatin and taxol... Major surgery : uterus, ovaries,fallopian tubes, cervix, omentum, appendix and part of rectum... 3c think probably 4 something...... Had good debunking and was put on petroc trial so had to have good clearance.
3 more cycles to mop up and ca 125 was at 128.
10 weeks later the beast roars and obstructs my bowel.... Steroids and chemo shrink the beast ..... So been on chemo nearly a year... Last chemo was on Xmas eve... Carboplatin and GemCarb
Has anyone got similar story, or become platinum sensitive, would love your take on this and any reassurance to my poor body and mind ???
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MidwifeGill
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Thanks gwyn.... Picture is Scarlett my grand daughter x I delivered her only 16 weeks before diagnosis! Andes amply picture was just before I lost my hair x
She is really so beautiful, you must be very proud....you look good too xx
First of all, try not to panic. I know how hard that is. Until you are in a position to do something - such as call Ovacome tomorrow morning - do whatever you can to soothe your troubled mind. I think you mean you have become insensitive to platinum, rather than sensitive? Secondly, there are treatments that can help. One is the Rotterdam regime - cisplatin and etoposide - google it. This regime is very hard but also highly effective in women who are not platinum sensitive. Another is weekly taxol. Some women have found that tamoxifen, more commonly used in breast cancer, can stabilise tumour markers.
I don't know where you are being treated, but it might be a good idea to ask for a second opinion at a major cancer centre - Manchester, Leeds or London. Please call Ovacome for information - they know the best consultants. Even if you are already at a top hospital, a second opinion can often help.
I wish I could wave a magic wand. If you visit the Inspire site, which is based in the US, you will find stories of women who have endured years of chemo before finding the regime that put the beast into retreat. It's difficult, but it can be done.
Thank you for you reassurance... I accept years of chemo as long as it gives me years x will look at inspire I have been reading old blogs and had just read about the Rotterdam regime.... I am being treated in slough by dr Marcia hall who also works at mount vernon alongside several professors... She is on the ball and has referred me to bowel surgeon... Will bear in mind re second opinion x lots of love
Hi gill -- how bloody miserable all this stuff is and you're still chipper, its amazing. You know we have onc in common, obviously! I got a lovely second opinion consultant at UCLH big Macmillan Centre and Dr M was fine about it let me know if you want the name Ok?
Thanks sue......Think we have spoken on email via ovacome?..I am setting up East Berkshire support group, starts 30/1/13 eastberkshire-ovariancancer....... Hope you can come, it will be a group ownership and needs strong members to push it forward.. X gill ..... May need a second opinion but everything being tried ATM..... Tamoxifen, ibrufen etc x
I'm so sorry to hear that the treatment isn't going so well at the moment. I'm so impressed that despite all this you've got your support group going, you've created a website, and you have your first meeting this month. I have no excuse now as to why our first meeting is planned for March.
I hope Marcia Hall and the referral to the bowel surgeon come up with a plan to keep the beast at bay. If anyone's going to beat it you will.
Good luck with your support group. You're right about identifying strong members to push it forward. I'd love to pick your brains and know what you've planned for your launch meeting, whether you have a steering group, support of the local oncologists, etc. It would be really good to share good experience. Wish too that I had your knowledge of blogs and websites though I open up the site from your URL just now. What is good is that I subsequently did a Google Search for East Berkshire Ovarian Cancer Support Group and it took me straight to your blog about it on Ovacome. A good idea to put up a blog about the support group on Ovacome. I hadn't thought of that. You could also ask Ovacome to add it to their website list of Support Groups.
Good luck, Gill. Do you mean you have become allergic to platinum, so that it can't be used any more? You couldn't have cisplatin either in that case, I would think, as it is related to carboplatin.
Thinking of you. I know there are a lot of treatments out there.
Sorry, I now see from the headline you mean the cancer is resistant to platinum treatment, ie not responding. But there are other treatments out there. Keep fighting - you will get there.
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