Durable Complete Responses with Metastatic Melanoma Using T Cell Transfer Immunotherapy

I'm sorry but I find your statement that the treatment was only done on otherwise healthy people. Many of those people were stage 4. I'm sure there are many stage 3 and 4 on this forum that are otherwise healthy. All these studies cost large amounts of money, which big pharma hopes to get back if the treatment really does extend life. Here we have a treatment that has been shown not only to extend life, but also cure stage 4  melanoma. Your last sentence about taking people near death seems to contradict the sentence where you say treatment was done on otherwise healthy individuals.

You don't understand that NCI/NIH only takes certain people into their trials.  This trial has only been done on 93 people, it is a very small number to figuire any results from and the process of how this treatment is done nearly kills people.  As a matter of fact,  I had a friend who did this and when he didn't respond they didn't offer anything else to him and he died. He was just 34 and the dad of a newborn.  Just don't want people to read this and get false hope.  Be sure to read into these studies carefully and what they involve before you think they cure folks.

I have to agree with part of what you say  – this type of trial at NIH is what my wife was scheduled to do but the presence of brain mets excluded her. They should be more clear about what their research subjects charaterstics are so as to not raise false hopes. For those whose metastases are limited to the body though, this appoach, which is being replicated elsewhere like at the Cancer Care Alliance in Seattle, IS PROMSIING.

I have to agree with part of what you say  – this type of trial at NIH is what my wife was scheduled to do but the presence of brain mets excluded her. They should be more clear about what their research subjects charaterstics are so as to not raise false hopes. For those whose metastases are limited to the body though, this appoach, which is being replicated elsewhere like at the Cancer Care Alliance in Seattle, IS PROMSIING.

You don't understand that NCI/NIH only takes certain people into their trials.  This trial has only been done on 93 people, it is a very small number to figuire any results from and the process of how this treatment is done nearly kills people.  As a matter of fact,  I had a friend who did this and when he didn't respond they didn't offer anything else to him and he died. He was just 34 and the dad of a newborn.  Just don't want people to read this and get false hope.  Be sure to read into these studies carefully and what they involve before you think they cure folks.

I'm sorry but I find your statement that the treatment was only done on otherwise healthy people. Many of those people were stage 4. I'm sure there are many stage 3 and 4 on this forum that are otherwise healthy. All these studies cost large amounts of money, which big pharma hopes to get back if the treatment really does extend life. Here we have a treatment that has been shown not only to extend life, but also cure stage 4  melanoma. Your last sentence about taking people near death seems to contradict the sentence where you say treatment was done on otherwise healthy individuals.

Derek and I have a prescreening appoint at NCI in Washington next Tuesday for the TIL treatment.  We are deciding between the TIL and IPI, our main concern is the time it will take to get Derek into a bed and get treatment.  Of course, he can have ipi next week (done wash out period), but we will also go through the scrfeening process for TIL and get a timeline and then decide.  If he is HLA positive I think it takes about 3 weeks to grow cells and if not it takes about 4-6 weeks to grow cells.  

So we go next Tuesday to meet with them and then his case is presented the following Monday and the decision whether or not he is eligible.  

Our onc was down there two weeks ago and feels it is a very good option with promising results.  He is favours it for Derek slightly more than ipi dependingon timeline.

Terra 

Derek and I have a prescreening appoint at NCI in Washington next Tuesday for the TIL treatment.  We are deciding between the TIL and IPI, our main concern is the time it will take to get Derek into a bed and get treatment.  Of course, he can have ipi next week (done wash out period), but we will also go through the scrfeening process for TIL and get a timeline and then decide.  If he is HLA positive I think it takes about 3 weeks to grow cells and if not it takes about 4-6 weeks to grow cells.  

So we go next Tuesday to meet with them and then his case is presented the following Monday and the decision whether or not he is eligible.  

Our onc was down there two weeks ago and feels it is a very good option with promising results.  He is favours it for Derek slightly more than ipi dependingon timeline.

Terra 

Thanks Gene for your comments.  I'm so glad you got through the treatment so well!  I pray for your continued healing and know that God has a strong hold on you. 

Waiting and deciding on a treatment has been rough.  I visited with Dr. O'Day at The Angeles Clinic so got the scoop on IPI first hand and and have decided on using it as a second line treatment.  I am approved for a trial at UCSF that I'm supposed to start tomorrow of Axitinib, Carbo and Paxol which I am putting on the back burner until I see Calif Pacific Medical Center in SF tomorrow to discuss their Biochemotherapy program.  Initially I had dismissed BCT, but because of how I presented, my ldh level and where my mets are, I seem to be a good candidate for the treatment.  Here's a link to their website if you want to check it out: http://www.cpmc.org/services/cancer/melanoma/treatment/

Anyways, the sun is out and shining today and I feel good.  My kids are coming up for the holiday weekend and I'll be in a treatment soon kicking this disease's butt.  Life is good!  Take care and have a great day.  Robert  p.s. have you been to http://www.strongholdministry.org?  Started by a stage IV melanoma survivor whose story is a miracle.  I communicate regulary with Joe now and it has been a real blessing.  Check it out if you haven't already. 

I don’t know if I will get into the trial that I want, but I will do IL-2 first. Dr. Potter is also associated with UCSF just in case I have to change treatment plans. Now that I have finally made up my mind, I hope it is not too late, I get short-of-breath quiclky and tire easy…Once those buggers begin to multiply…Anyways, make your decision sooner than later.

My best to you and yours with many blessings of light and love,
Suzan AB
Stage IV lung mets

Suzan, we really are in the same place.  I had been seeing Dr. Daud at UCSF but his suggestion was the carbo/paclataxol + axitinib and there is NO case for complete response.  I have another brain MRI and cardio stress test this week and if all is ok I start Biochemotherapy at California Pacific Medical Center with Dr. Wang and Dr. Minor on June 6th.   What I found is that for biochemo, the facility and amount of, and the order in which they give you the drugs. is critical. The way your melanoma presents and a normal ldh are also considered when offered the regimen. It includes 3 chemo drugs + IL-2 and Interferon.  1 week in hospital, then 3 weeks out X 4 sessions, then IPI for maintenance.  After 2 months of searching and considering, I am at peace with my decision and look forward to it. 

What trial are you trying to get into?  You may not even need it after IL-2 as there are a good number of complete responders to IL-2, it is still the only verified treatment so far that has shown complete responses.  Another good thing about IL-2 is that it doesn't disqualify you from most trials. 

You said UCD, are you in Sacramento?  We live in El Dorado Hills and will have to trek to SF every week for 4 months (4 weeks of treatments and then weekly checkups in between). 

I hope you feel better.  Have you discussed the shortness of breath with your Doctor?  I'm going to see a physical therapist to help me develop an exercise regimen.  I found one that works a lot with cancer patients.  I'm told that keeping active and getting at least 30 minutes of exercise 4 days a week helps prepare for chemo/il-2 and then after treatment to feel better sooner. 

Keeping you in my prayers.

Robert

Suzan, we really are in the same place.  I had been seeing Dr. Daud at UCSF but his suggestion was the carbo/paclataxol + axitinib and there is NO case for complete response.  I have another brain MRI and cardio stress test this week and if all is ok I start Biochemotherapy at California Pacific Medical Center with Dr. Wang and Dr. Minor on June 6th.   What I found is that for biochemo, the facility and amount of, and the order in which they give you the drugs. is critical. The way your melanoma presents and a normal ldh are also considered when offered the regimen. It includes 3 chemo drugs + IL-2 and Interferon.  1 week in hospital, then 3 weeks out X 4 sessions, then IPI for maintenance.  After 2 months of searching and considering, I am at peace with my decision and look forward to it. 

What trial are you trying to get into?  You may not even need it after IL-2 as there are a good number of complete responders to IL-2, it is still the only verified treatment so far that has shown complete responses.  Another good thing about IL-2 is that it doesn't disqualify you from most trials. 

You said UCD, are you in Sacramento?  We live in El Dorado Hills and will have to trek to SF every week for 4 months (4 weeks of treatments and then weekly checkups in between). 

I hope you feel better.  Have you discussed the shortness of breath with your Doctor?  I'm going to see a physical therapist to help me develop an exercise regimen.  I found one that works a lot with cancer patients.  I'm told that keeping active and getting at least 30 minutes of exercise 4 days a week helps prepare for chemo/il-2 and then after treatment to feel better sooner. 

Keeping you in my prayers.

Robert

I don’t know if I will get into the trial that I want, but I will do IL-2 first. Dr. Potter is also associated with UCSF just in case I have to change treatment plans. Now that I have finally made up my mind, I hope it is not too late, I get short-of-breath quiclky and tire easy…Once those buggers begin to multiply…Anyways, make your decision sooner than later.

My best to you and yours with many blessings of light and love,
Suzan AB
Stage IV lung mets

Thanks Gene for your comments.  I'm so glad you got through the treatment so well!  I pray for your continued healing and know that God has a strong hold on you. 

Waiting and deciding on a treatment has been rough.  I visited with Dr. O'Day at The Angeles Clinic so got the scoop on IPI first hand and and have decided on using it as a second line treatment.  I am approved for a trial at UCSF that I'm supposed to start tomorrow of Axitinib, Carbo and Paxol which I am putting on the back burner until I see Calif Pacific Medical Center in SF tomorrow to discuss their Biochemotherapy program.  Initially I had dismissed BCT, but because of how I presented, my ldh level and where my mets are, I seem to be a good candidate for the treatment.  Here's a link to their website if you want to check it out: http://www.cpmc.org/services/cancer/melanoma/treatment/

Anyways, the sun is out and shining today and I feel good.  My kids are coming up for the holiday weekend and I'll be in a treatment soon kicking this disease's butt.  Life is good!  Take care and have a great day.  Robert  p.s. have you been to http://www.strongholdministry.org?  Started by a stage IV melanoma survivor whose story is a miracle.  I communicate regulary with Joe now and it has been a real blessing.  Check it out if you haven't already.