Treatment options for reoccurrence
June 25, 2018 at 9:05 AM #6619Josie HueniParticipant
If reoccurrence is two months after the 6 cycles of Carbo/Taxol, what are other options that have been used?
June 25, 2018 at 10:13 AM #6630KathyKeymaster
I’m sorry to hear that the cancer returned and so quickly. It is a beast, for sure. Glad that you found us and reached out to our community. I see that you found Diane’s post from Feb 2018 in which she outlined the treatments she received. This and other posts from our community can clue you in to what you may expect to receive. Everyone is different – Diane’s cancer was “platinum-resistant,” meaning carboplatin wasn’t effective, so her treatment was changed right away to ifosfamide.
We can’t give medical advice, but we strongly urge you to build your medical team with experts who have “deep experience” in carcinosarcoma (meaning that the physician treats many women with this disease and not just a handful a year). Diane found this with Dr. Birrer. There are others, of course (we’ve listed a few on our website). Talk to your gynecologic oncologist and ask how many cases of carcinosarcoma he/she treats. It’s hard to advocate for yourself when trying to deal with the disease, but it’s so important to fight for yourself and build a team to fight with you!
Keep in touch.
Kathy Wilt, Ph.D, M.S.N., R.N
Secretary, GCS Project Board of Directors
October 14, 2018 at 9:59 AM #7535denneParticipant
I missed your post earlier and I sincerely hope this note finds you well with your cancer responding to therapy.
I would expect that you have been put on Ifosfamide as that seems protocol for this cancer.(I use the MD Anderson Protocol at MD/Anderson/Cooper Hospital in Camden NJ.) The details are in “My Story…Denne” but I did also recurred after Carb/Taxol but have been responding to the Ifosfamide for several months now…as did Diane.
If this has worked for you, the problem is that it appears that this cancer seems to find its way around the chemo quite easily we should be looking for other treatment options before IFEX stops working. And I really don’t know where to start!!
I did get the foundation one studies and had a consult with Dr Santin at Yale. No great news at this time … Dr Santin appears to be a brilliant and considerate man. He certainly advised me to use the IFEX before anything else.
So, I write hoping that you are well!!! And if on IFEX please let me know how you are doing on this chemo!
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