If you had a response to Votrient and started to progress

[Olga]

I am reposting this from the LMS sarcoma mailing list - someone reposted it on sarcoma mailing list and I find it a very good info to be shared:

Subject: Lynda's results of new Votrient-rapamune combination

Hi, listmates.
I have talked with some of you previously about my results while on
Votrient and promised an update when I had my new scans, so here it is.

I have been on 800 mg/day of Votrient since last Oct. For the first 6
months I had skrinkage, then in my March scans several nodules started
showing some growth. On the advice of Dr. Chmielowski at UCLA, in May we
added 4 mg/day of rapamune to my program because he had been seeing some
good results with this combo.

For me this has really worked. I had new scans last week and have no new
growths and all existing mets have had a reduction in SUV (glucose) uptake.
Some of the nodules decreased their uptake by 50%. This, for me, is
tremendously good news and I am continuing this combination for now. I
will have new scans just before Thanksgiving.

The side effects from this combo of " targeted therapies" have not been bad
and I have a pretty good quality of life. I have had fatigue and diarrhea,
sensitivity to the sun, easy bruising, sinus drainage, sense of taste has
changed, hair turned white. I have NOT had liver, kidney, or heart
problems.

For those who have been on Votrient for awhile with good success, and now
are seeing growth, you may see good results from adding rapamune to your
program. If your oncologist is not familiar with this, they could probably
contact Dr. Chmielowski.

My comment:
Rapamune (sirolimus) is an MTor inhibitor. There is already a documented report posted here by Johannes:

From ASCO 2013: response to Pazopanib+mTOR inhibitor in STS
Post by Johannes » Sat Jun 08, 2013 4:39 pm
Reversal of acquired resistance to pazopanib in soft tissue sarcoma with addition of an mTOR inhibitor: A case report.
http://www.cureasps.org/forum/viewtopic.php?f=3&t=804

The known side effects of adding sirolimus are different, some of them are very serious (pneumonitis, immunosupression - viral infections etc.) so evaluate your options carefully based on your overall health condition.

[cachabamba10]

Thanks for this Olga, Information and knowledge are key to fighting ASPS. I will look more into this,for a future reference.

Mario

[Bonni Hess]

Dear Olga,
Thank you for posting this very interesting and important information. Hopefully it will provide a possible effective treatment option for those ASPS Votrient (Pazopanib) patients who have unfortunately developed resistance to the drug and disease progression, as well as perhaps patients on other TKI treatments such as Cediranib and Sutent. I Hope that those patients currently taking Votrient and other TKI drugs will read this information on this Forum, and if they pursue and receive treatment with Rapamune added to their Votrient or other TKI treatment regimen that they will share their treatment experience and results with the Board.
I Hope that all is going well with your Votrient treatment Mario, and I will be anxiously awaiting your next Board update because I care so deeply about you as well as all of the ASPS Community patients and their families. As you so wisely said, shared "information and knowledge are key to fighting ASPS."
With special caring thoughts and continued Hope,
Bonni