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Sorafenib OR Sutent and Rampamycin


#1

Back to the Chemo Dart Board!

So far here is what I have tried:

Surgery to remove the tumor from Spine

Ifos / Dox -- 7 rounds

Proton Radition - 41 treatments

Reoccurance Lung -- Surgery Left

Reoccurance Lung -- Surgery Left / Right

2 rounds of Yondelis -- no effect on tumor

Surgery and Immonology -- no benefit recoccurance in lungs

Now I am considering either Sorafenib -- There are some trials out there

OR

Combo of Sutent and Rampomaycin -- (recommended from a doctor at Dana Farber)

Does anyone have any experience with either of these?

Thanks for the advice... Nik


#2

I would not recommend sorafenib by itself but only in combination in a trial. There was a trial that showed no benefit when given by itself for synovial sarcoma:

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=47&abstractID=35269

Sutent and rapamune was tried by someone I've heard of from his daughter. That man gained one year from it but if I understand correctly they decided to try it after they tested his tumor and there was something about it that suggested it would work:

http://bb.sarcomaalliance.com/cgi-executables/anyboard.cgi/anyboard9/forum?cmd=get&cG=2343032393&zu=3234303239&v=2&gV=0&p=

How about Votrient?


#3

Votrient was offered by Dana Farber for my son and, so far, it has been a miracle drug.


#4

Thanks for the insight. I will ask about that drug.

Elodie Espesset said:

I would not recommend sorafenib by itself but only in combination in a trial. There was a trial that showed no benefit when given by itself for synovial sarcoma:

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_deta...

Sutent and rapamune was tried by someone I've heard of from his daughter. That man gained one year from it but if I understand correctly they decided to try it after they tested his tumor and there was something about it that suggested it would work:

http://bb.sarcomaalliance.com/cgi-executables/anyboard.cgi/anyboard...

How about Votrient?


#5



Ellen said:

Votrient was offered by Dana Farber for my son and, so far, it has been a miracle drug.

#6



Nikolas Ritschel said: I spoke to a doctor named Dr. Jeffery Morgan at Dana Farber. I will ask him about this one as well. Do you live in Boston or did you travel there?



Ellen said:
Votrient was offered by Dana Farber for my son and, so far, it has been a miracle drug.

#7

Hi Nik. We started in Burlington Vermont (125 miles from home). Burlington video conferenced with Dana Farber from the beginning and after 7 rounds od ifos and dox ,leg sparing surgery (14 hours), 25 radiation treatments and brachytheraapy, we flew to Boston 2 days before Christmas and met the docs that were in on his care via video. There, they recommended the Votrient. One side effect...it will turn all of your hair white. Good luck Nik! We are having a Relay for Life walk in our home town (Tupper Lake, NY) next weekend. Many people are working hard to come up with treatments and cures. Stay strong and optomistic!



Nikolas Ritschel said:



Nikolas Ritschel said: I spoke to a doctor named Dr. Jeffery Morgan at Dana Farber. I will ask him about this one as well. Do you live in Boston or did you travel there?



Ellen said:
Votrient was offered by Dana Farber for my son and, so far, it has been a miracle drug.

#8

I did a study that combined SORAFENIB and DACARBAZIN. http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=08-068. I had two scans that showed no growth, but at my 3rd cycle I had to reduce the dose of Dacarbazine because of low platelet counts and low white blood cell counts . After that there was growth on the next scan and again for the scan after that. Part of me suspects that it was only the Dacarbazine that was keeping things stable before the dose reduction.

By the way, what is your opinion of Proton Radiation. What center did you have it at, and was it on the primarily tumor? I have local recurrence on my left chest wall area as well as tumors in my right lung. I would be interested in Proton Radiation or maybe something like CyberKnife.


#9

Hi Drake,

Thanks for sharing. I had proton radiation around the orginal sight on my spine. We chose it because of the location and to avoid hurting my spinal chord. We went to Mass General and saw a Dr. Thomas Delaney. He was terrific and so were the nurses (Kathy was great). I had 41 treatments and stayed at the Hope Lodge. We picked Mass General because they seemed to have the most experience. It kept the cancer at bay for 1 year. the tumor was over 5 cm before it was diagnosed so there is no way to know if it worked or not. It may have been moving before I had it removed.

Good Luck.. hope this helps.

Nik


#10

HI!

I am currently taking sutent ans Rap. and go to DFCI. Do you live in Boston? I took the meds back in july 2010 and the tumor shrunk so much my surgeon missed it.... ugh.

I see Dr. Morgan have been for 8 years

#11

Hi Nick. How are you doing?


#12

good luck with everyth i have it in my lungs to it spread from myto shoulder to my lungs they want to amputate my arm but said no idid chemo now its radiation how iss radiation


#13

Hi Wendye,

Sorry I dropped off the radar for a while. I am on sutent and rap combo that Dr. Morgan suggested. My oncologist here prescribed it. I have scans tomorrow to see if it is working. I think the dose the docs here in Chicago prescribed is too low. I wish we did live in Boston because it seems the Dr. Morgan really understands this disease. The side effects have not really been bad. How are thy for you?



wendye said:

HI!

I am currently taking sutent ans Rap. and go to DFCI. Do you live in Boston? I took the meds back in july 2010 and the tumor shrunk so much my surgeon missed it.... ugh.

I see Dr. Morgan have been for 8 years

#14


Hi Melissa,

I had 41 proton radiation treatments and I just got done with a blast to my lungs. It really makes you tired. If they radiate an area over a period of time, your skin gets quite irritated. I would strongly suggest you try some of these combo chemo listed on these sites.... Votriant or the combo I am trying.... sutent and rap.
melissa24 said:

good luck with everyth i have it in my lungs to it spread from myto shoulder to my lungs they want to amputate my arm but said no idid chemo now its radiation how iss radiation

#15

Hi Ellen,

Thanks for checking in... I had a blast to my lungs as there was a tumor wrapped around my breathing tube leading to my right lung... not operable. The radiation helped, but another tumor popped up in my left lung by my heart. I flew to Boston and met with Dr. Morgan --Dana Farber-- I am on he Sutent and Rap combo. Scans tommorow.... and am praying for good news!

Hope all is well with you!

Ellen said:

Hi Nick. How are you doing?

#16

dr. Morgan and his team are great. I went 8 years cancer free until last summer and dr. Morgan truly feels the med. Combo works best w. SS, choice was mine though lol. Last summer i was on high dose, shrunk tumor so much that surgeon missed… The side effects are managable and i asked morgan to lower dose for summer and my tumor was removed in march, but hes concerned about clear margins and i have small spot on lung.


#17

Hope all goes well....



Nikolas Ritschel said:

Hi Ellen,

Thanks for checking in... I had a blast to my lungs as there was a tumor wrapped around my breathing tube leading to my right lung... not operable. The radiation helped, but another tumor popped up in my left lung by my heart. I flew to Boston and met with Dr. Morgan --Dana Farber-- I am on he Sutent and Rap combo. Scans tommorow.... and am praying for good news!

Hope all is well with you!

Ellen said:

Hi Nick. How are you doing?