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Experience with temsirolimus

KTMay
Posts: 25
Joined: Nov 2016

I am interested in members' experience with temsirolimus to treat metastasis of uterine serous carcinoma--originally staged at IIIC but spread now throughout pelvis and abdoman. I am readying a decision on a fourth treatment since being diagnosed in April 2016 which have included two chemos--carbo/taxel, doxil--and two trials--an mTOR inhibitor and most recently a checkpoint inhibitor (durva) that didn't work. Now back to chemo to try to slow the growth. In discussions with my oncologists, the choices on the table are 1) returning to taxel, 2) gemzar, and 3) temsirolimus which is the option I tend to prefer given my high positive molecular indicators for PIK3CA and TP53.  Any thoughts on how to decide? I have not seen much on this board about temsirolimus and wondered why. Any experiences to share? Sign me,  still pressing forward!  KTMay 

Northwoodsgirl
Posts: 559
Joined: Oct 2009

I haven’t seen much about this treatment. Sorry I can’ t be of much help. Has your oncologist given you their rational for pursuing one treatment over another?  Have you been to PubMed.gov website and searched the name of the treatment? So hard to make an informed decision feeling like one does not have enough information. Keep asking questions! 

KTMay
Posts: 25
Joined: Nov 2016

Will do.  thank you!  

pinky104
Posts: 574
Joined: Feb 2013

I have 6 genomic mutations.  One is one of the same ones you have, TP53.  Another one is P1K3R1.  I don't know if the second is anything like your P1K3CA or not.  I went through treatment in 2010 with Carboplatin and Taxol.  I went into remission.  I had a recurrence and had Carboplatin and Gemzar in 2017, but had to have Cisplatin and Gemzar for the last cycle because I developed an allergic reaction to Carboplatin the 11th time I had it. Again, i have gone into remission.  I found the Gemzar a much harder hitting chemo than Taxol.  The one thing I liked about it was that I only lost part of my hair, not all of it.  My blood levels tanked much sooner than they did with Taxol and my oncologist told me that was the normal reaction to Gemzar.  I was extremely fatigued after the very first treatment and had to have my dose dropped then and again later in the chemo and had to skip chemo a week here and there.  I had to have a transfusion of two units of packed cells during both chemos, the one in 2010 and the one in 2017.  But even with the more difficult treatment, I felt like my initial Carboplatin and Taxol chemos allowed my cancer to come back, so I thought it might be smart to try something different. 

I had genomic testing done, and temsirolimus was one of the four drugs that was mentioned by Foundation One as being something that had worked in patients with other types of cancer besides mine (which is UPSC).  I asked my oncologist about that drug and the other three that were suggested, but he said all the drugs were expensive, and he didn't think any insurance company would be willing to pay for them when they hadn't been approved for use in UPSC.  I also discussed another parp inhibitor drug that had recently been approved by the FDA, and he ruled that one out because it had over a 1% chance of causing leukemia.  That one also had many chemo-like side effects, and I didn't need to have any more of those.  It also only worked for 9 mos. on average, although I could have taken it for longer if it seemed to be continuing to work.  My GYN/onc seemed to think I'd be lucky to get another 5 year remission without that drug, and he thought skipping it would be wise.  He also commented that he thought I was extremely lucky to have gone into remission as fast as I had with the Carboplatin, Cisplatin, and Gemzar treatments.

I'm now trying Metformin, a diabetes drug, although I don't have diabetes, as that has shown some promise in four of my six mutations.  I'm also taking Turmeric/Curcumin, which I hadn't taken before.  I'm hoping these will stave off a future recurrence of my cancer.

I hope this information helps you with your decision.

KTMay
Posts: 25
Joined: Nov 2016

Yes thank you very much. Not only for the information but for being a hopeful example that standard chemo can be effective in buying time. Having spent this past year in clinical trials without success but in which the effects were much less severe, e.g. having my hair back and no nausea, returning to standard chemo is a disappointment but a necessity.  

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