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I started torisel today

craig59
Posts: 14
Joined: Oct 2013

My last scan showed mets to both lungs,liver and lymph nodes. So far no side effects.

If I feel as good in the mourning as I do now I'll go to work.

Anybody else have experience with torisel?

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

So sorry for your news about mets, Craig. I have no knowlege of this drug, but maybe others will know.

Have you tried other forums too for others who may know?

Criag, I feel for you and am sending you healing energy and care.

Keep us informed as to how you are doing ok hon?

 

Warmly, Jan

craig59
Posts: 14
Joined: Oct 2013

thanks Jan. Smile  Now if it will only work.

 

 

 

Craig

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Craig,

Sorry to hear about your CT.

I didn't take Torisel, but I was in a adjuvant study and took everolimus, which I think works similarly. I took it for a year. I had some side effects, but it was really pretty mild. I had a little nausea (particularly when I ate beef for some reason), some mouth sores (all of this was worse at the beginning of the treatment). I was somewhat fatigued. I worked the whole time. It was really not too bad. Toward the end of the year on it, I started getting some really weird side effects. My doctor insisted it wasn't the drug, but I really think he was wrong. It went away after I stopped the drug. I got some vertigo that was coming and going. It got bad enough that I was having trouble driving. I got some swelling in my hands and some neuropathy in my hands. That was at the end of 1 year on the drug.

I hope the Torisel is effective for you.

Todd

craig59
Posts: 14
Joined: Oct 2013

Thanks Todd,I hope your surgery goes good.

Craig

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Thanks Craig. I haven't heard of anyone getting Torisel as the first drug of treatment before. (Keep in mind, my experience is pretty much limited to reading this board...) It seems  most get sunitinib or votrient or one of those types of drugs. Well, used to be anyways.

Do you know why you're getting that as your first treatment option?

I really haven't kept up with what's going on this past year much. When I was reading regularly, it seemed people usually got votrient or sunitinib and if that didn't work, they might get everolimus next. Everolimus was only approved as a second line treatment at that time. I don't know the difference between everolimus and torisel. Everolimus is an mTOR inhibitor and when I poked around online I saw that torisel is also an mTOR inhibitor, so I assumed they're similar drugs.

Is torisel new? Is it approved as a first drug? Or have you tried something else? Or taken part in some drug study?

Hope all goes well with it. Please keep us informed.

Best,

Todd

 

craig59
Posts: 14
Joined: Oct 2013

Dr Atiq didn't tell me why, just that he wanted to start me on something that would hopefully be measured in years not months. He said it was agressive.

I know the mass on the place where my kidney was, has grown to 2 inches in 7 months. 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Craig,

If you live anywhere you can get a second, even third opinion, I'd do it. If you feel confident in your doctor, then please excuse me. However, this disease has undergone radical shifts in medications being available the past 5 years even. Perhaps your doc is really up-to-snuff on RCC. I honestly have no idea. I found the docs in my area near Los Angeles (there are a handful of them that treat RCC almost exclusively) and I visited 3 of them when I got my diagnosis. Not everyone agreed. In fact, the first opinion I got was actually just plain wrong, and that was from a young oncologist that had treated a lot of prostate and other types of cancer, but not RCC. RCC is a special kind of cancer.

Recently, mTOR inhibitors were approved as second line drugs and not first line. Everolimus was a drug approved only for use after votrient or sunitinib had failed. I can't tell you why.

In any case, another opinion can never hurt. If nothing else you'll get another perspective. My uncle is an oncologist. He said any good doctor should be happy to see you get another opinion. If  a doc has a problem with you getting another opinion, it's probably a doc you want to stay away from. I've found oncologists very welcoming of working you in right away for an opinion when a serious situation is underfoot. Most have policies of seeing you within a few days if it is urgent. You just have to ask the right person and give them the right information to get in.

Wishing you the best, and sorry if my advice is unwelcome.

Todd

P.S. Just for comparison, when I saw Dr. Figlin in LA, he mentioned that a typical oncologist will see a handful of RCC patients in a year, if that. Dr. Figlin sees that many in a few days. There are a few docs in major areas that see a lot of RCC patients and follow the literature and new drugs closely. Those are the ones you want to see if you can. If you need help finding someone, ask on here. Or search for drug studies for RCC in the online databases, and you will find contact information of doctors that are sponsoring the drug study near you. Usually the ones plugged into the RCC drug studies are those that have special interest in RCC. Once again, if I'm off base, please accept my apologies. I don't know your doctor at all and he may very well really be tied into RCC treatment. I would get a second opinion even if he is...Try and get both docs to explain what they would do and why so you can make an informed decision.

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Everolimus failed to prove more effective than either Sutent or Votrient in Phase III trials.  That is why it is second line.  Torisel had similar results.

Starting on Torisel first line is highly suspect in dealing with an aggressive form of mRCC.  Please seriously consider getting a second opinion from a highly qualified renal cancer expert.  You won't regret it.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I had a feeling this was the case. I just thought maybe there was something going on here I didn't understand. I don't think there are any mTOR inhibitors approved as a first line drug. Only the VEGF/TKI drugs like sunitinib or votrient/pazopanib, maybe some others now? I've not been keeping up...

Craig, you really should look for another opinion. Look for a medical oncologist who specializes in RCC. If you need help finding one, ask here or ask on Smart Patients. People attending Kidney Cancer Seminars get to see some of those docs all in one place and might be able to recommend somebody in your area.

Hope you find someone else to have a look and tell you what's going on. You getting the correct treatment in a timely manner right now is very important.

Best wishes,

Todd

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

It actually is approved as a first line treatment. See:

http://www.cancer.gov/cancertopics/druginfo/temsirolimus

Still, I've not run across anyone that I remember on this website or at meetings I go to being given this drug first. It was approved in 2007. I can't say why. Would be good to ask why he chose this and I still think another opinion is called for.

Todd

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

By the way, Craig, are you on Smart Patients? You can get ideas on there about treatments. www.smartpatients.com. Sign up for the RCC discussion. There's more discussion there about treatments.

Todd

craig59
Posts: 14
Joined: Oct 2013

Todd,I am not on smartpatients at this time but will look at the site. I will also look around for other opinions if Dr Atiq dosen't give me a "why".

I really like and trust Dr.Atiq and he has a good track record here in Arkansas.

I suspect he started me on torisel because of all of my other medical issues.

Craig

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi Craig,

Very well could be. Some of those other drugs are hard on the liver or affect blood pressure, etc. But they have some new approved immunotherapies (or maybe they are in studies still) that might work for you. I'm not sure they are approved for RCC, but they may be approved for other cancer and could be used off label. The more opinions the better. I like 3, so I can see if there's a consensus.

Take care,

Todd

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