Stem Cell Transplant

Hello Everyone:

After going through high dose IL-2 and Sutent with no results, I have been given an option to try a Stem Cell Transplant. The risks are high and I am scared, but eventually I was told these targeted drugs, in my case will stop working.

This treatment, although high risk, may offer the chance of a long term durable response I am told.

I would rather die in treatment than from the disease.

My question is, has anyone tried here tried a Stem Cell transplant and what was the result?

God Bless:

Krys

hi,

i've just read your message & although i have not had a stem cell transplant, i have spent months trawling medical journals regarding the technology as it sound like a very promising technology especially as most renal cancer remissions are caused by immunotherapy.

i wanted to ask about where you have been offered this treatment as the only true study i can find is recruiting in the states & you'll need to live there for 3 months.

the only reason i ask is that there are alot of fake clinics out there praying on vunerable people offering stem cell injections where you're safe to go home after the weekend & all they are giving you is either saline or undifferentiated umbilical stem cells desined purely for testube lab work & as you're own immune system hasn't been supressed the stem cell simply get removed from the body without any proven benefit.

please can you let me know because if it is a true study i could really do with knowing as i've just failed the last available form of treatment for me.

also if this is a treatment you were looking to pay for why not look at dendritic cell vaccines as these work in pretty much the same way only using your own dendritic cells rather than ones grown from a donors stem cells so it's much safer(and cheaper) & can be carried out in germany or through a clinic in the UK called the National Cancer Vaccine Institute where they'll do the leg work & introduce you to Dr. Nesselhut from the Durstatt imunotherapy clinic.  

Hello:

 Thanks for replying to my post. You are right, immunotherapy to my understanding, is a way to acheive a long term durable response. From what I have been told and the information I read, these drugs such as Sutent, Nexavar, Torisel, Afinitor, etc. have a limited time frame that they work. Then what, go to the next drug until you run out? Tough spot to be in. Sutent for me was a bear with the side effects. Its no way to live. IL-2 was a monster, but worth it for me for a shot at a possible cure. They both didn't work for me.

If I am able, I am hoping to have my treatment in the US at NIH. You can google the website under NCI and find several Stem Cell trials. Also, I think MD Anderson in Houston Texas, and City of Hope in Southern California offer these services.

I don't know about the dendritic vaccine therapy because from what I have read the results thus far are less than spectacular, also, you need to have a low tumor load for your body to be able to handle the cancer. Thus, it is important to try the immunologic approach early in the game before the cancer is too well established.

I know the Stem Cell Transplant carries alot of risk, but is it worth it to acheive a remission or dare I say a cure, or stay on the drugs and gain a little more time but knowing were it will end? I don't know. I was hoping someone here would have had experience with it, but it looks like I will have to trust my feelings and God to point me in the right direction. To spead up my death with a possible cure, or prolong my time to death with the drugs. Darn tough choice!

Good luck and God Bless:

Krys 

Hi,

i'm glad you're so well informed as i've read about so many people who've just latched onto stem cell therapies in non approved clinics because they're affordable & play on the research of true professionals.

you're right waht you say about dendritic cell vaccines they do have a sub 10% cure rate where the body takes on the antigen, replicates it & continues to work where as most people only get a non progression benefit while they're taking the injections & at £3000 per jab where do you stop?

as for the drug route, have you looked at Everolimus (Rad001) from Norvartis, i'm currently taking it as they're giving it out on free compassionate use until it's licensed & purchasable in europe & it shows very posative results on paper & is giving me no side effects after 2 months continual use.

i know it's just another tablet but if you're needing something until the stem cell treatment or decide not to go that way, its something you can get now to help that won't be openly available again for a while. 

Hello:

Well, unfortunately not well informed enough because I still have the cancer.

 In the US, we spend billions on war, weapons, and the military. So little is spent on research to treat these horrible diseases. Right now we are having a debate on health care reform and how much it will cost the tax payer. I am hopimg that Obama and Kennedy will increase funding for cancer research to come up with a new approach to treat this demon.

Yes I have heard of Rad001 (Afinitor). I was recommended Torisel but am keeping it in reserve as a safety net. Afinitor is from my understanding  a pill form of Torisel (mTOR inhibitor). Yes when it works, it works really well in a subset of people. Again the same problem. From what I understand, it works for a limited time.

Sounds like you are from the UK? In Europe, you probably have different approaches to treat RCC. How is the Trovax trials going over there? I believe there is an English company doing this vaccine research  I have also heard of a German company called Liponova offering a vaccine. However, again, I think it works better in stage III or early in the disease.

I am taking Avastin for now. It is only keeping it stable to give me more time, but the side effects are easy to take. I will need to make a serious decision on my next step.

Good luck in your struggle and I hope you will be able to get much time from Rad001. God bless.

Krys

yep, you guessed it i'm in the UK.

The Trovax trials have been stopped over here due to too many people dieing from it & the preliminary data showing a sub 10% sucess rate, making the pharma company realise it's not a profitable avenue. (Accountants don't you just hate them.)

As for the other vaccine, it's a tumour cell strain so you need some tumour mass for them to tailor it from & all of the research i've seen from the Germans working on this subject seems to be poor outcomes & very low percentage responses.

Avastin is going to be my next fall back drug but it's cost would limit me to short term usage. Have you seen the data for combining mTOR inhibitors such as Rad001 & Torisel with Avastin as they seem to be better than Avastin alone? It's worth a Google if you get time.

All the best.