possible lung and liver mets…

Sorry to hear boots that you are now in this dilemna.  I thank you for your support back a few weeks ago when I was very worried about decisions. I do hope that your scans come back better than you are believing.  From what you have written, I know you are pretty well-informed.

 I will give you my thoughts as to date..but be aware sometimes they change from time to time after listening to some of our colleagues on the site….Dr. Wolchuk's combinations with ipi sound like an excellent way to go..I did temodar prior to ipi, it was 'less' intrusive on the body, but now after reading up, I wish I had done the dicarbazine..seems to support ipi better.  Anyways, I never regretted taking ipi although eventually it stopped working for me…but I believe it was the best first round of  action when I went stage IV.  Glad you are asking Charlie and Michael for their advice, I hope they see your question…another person I would ask is Jimmy B. who has done a lot of research…actually there are so many that can help you here.

Sent home to go forward with palliative radiation on lymph node and morphine, I decided I better get cracking.  I figured either TIL, IL-2 or biochem after failing ipi…and most fortunately, I saw Warren G.'s comment about surviving 5 years after treatment at NIH.  His blog is http://wgalinat.blogspot.com/ , he was a tremendous help…note he too had spot on lung.  I then contact NIH…and now will be on the following trial…a bit tough but I need to play really hardball with mel right now and I am so thankful that they accepted me into the trial I wanted:

 http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

Word of warning, I nearly proceeded with palliative radiation since it was only one week long (but gut instinct said 'no' so I postponed)….it would have most likely 'sunk' me with this trial so tread very carefully.  I was very impressed with Bruce in NH's oncologist who has supported him by making arrangements for him to apply for NIH…if you don't have that support…call yourself, I did.

Sorry to hear boots that you are now in this dilemna.  I thank you for your support back a few weeks ago when I was very worried about decisions. I do hope that your scans come back better than you are believing.  From what you have written, I know you are pretty well-informed.

 I will give you my thoughts as to date..but be aware sometimes they change from time to time after listening to some of our colleagues on the site….Dr. Wolchuk's combinations with ipi sound like an excellent way to go..I did temodar prior to ipi, it was 'less' intrusive on the body, but now after reading up, I wish I had done the dicarbazine..seems to support ipi better.  Anyways, I never regretted taking ipi although eventually it stopped working for me…but I believe it was the best first round of  action when I went stage IV.  Glad you are asking Charlie and Michael for their advice, I hope they see your question…another person I would ask is Jimmy B. who has done a lot of research…actually there are so many that can help you here.

Sent home to go forward with palliative radiation on lymph node and morphine, I decided I better get cracking.  I figured either TIL, IL-2 or biochem after failing ipi…and most fortunately, I saw Warren G.'s comment about surviving 5 years after treatment at NIH.  His blog is http://wgalinat.blogspot.com/ , he was a tremendous help…note he too had spot on lung.  I then contact NIH…and now will be on the following trial…a bit tough but I need to play really hardball with mel right now and I am so thankful that they accepted me into the trial I wanted:

 http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

Word of warning, I nearly proceeded with palliative radiation since it was only one week long (but gut instinct said 'no' so I postponed)….it would have most likely 'sunk' me with this trial so tread very carefully.  I was very impressed with Bruce in NH's oncologist who has supported him by making arrangements for him to apply for NIH…if you don't have that support…call yourself, I did.

Boots, I am sorry to read this. I agree that it does appear that your melanoma is super
aggressive. If the PET scan results find melanoma in the lungs and liver, then it is
certainly time to look at what will give you the greatest chance of achieving a durable
remission.

As mentioned by ValinMtl, the treatment at NIH is probably your best option. They use a
form of adoptive cell therapy (also called TIL treatment). It may also be available
elsewhere, but it is a very specialised procedure that requires real expertise.

Ipi combos may work for some people, but I really doubt that the long-term results will be
as good as adoptive cell therapy.

Hope this helps.

Frank from Australia

Boots, I am sorry to read this. I agree that it does appear that your melanoma is super
aggressive. If the PET scan results find melanoma in the lungs and liver, then it is
certainly time to look at what will give you the greatest chance of achieving a durable
remission.

As mentioned by ValinMtl, the treatment at NIH is probably your best option. They use a
form of adoptive cell therapy (also called TIL treatment). It may also be available
elsewhere, but it is a very specialised procedure that requires real expertise.

Ipi combos may work for some people, but I really doubt that the long-term results will be
as good as adoptive cell therapy.

Hope this helps.

Frank from Australia

I went immediately to IL-2 upon learning that I had innumerable lung mets in Feb 2007.  After two weeks (1 round of the IL-2) a scan said possible liver mets.  After  another week (week 1 of round 2) the liver mets stopped growing and never started up again.  My lung tumors were partial responders to the IL-2 in that they stopped growing for 20 months.  This 20 month delay let one per review paper be published on the first drug (before any formal clinical trials were run) on Gleevec (an FDA approved cancer treatment for other cancers that tested positive for c-kit.)  Based on this one paper my Oncology team went along with my request to try it.  I have been stable for 2 1/4 years now on the Gleevec since I am positive for c-kit. 

If you test positive for one of the targeted drugs, they are a likely possibility.  If not, my first choice would be either IL-2 or Ipi.  Possibly one of them them followed up with the other one (as worked for Jimmy B James Breitfeller 

There are other trials that are appearing as likely candidates. 

I went immediately to IL-2 upon learning that I had innumerable lung mets in Feb 2007.  After two weeks (1 round of the IL-2) a scan said possible liver mets.  After  another week (week 1 of round 2) the liver mets stopped growing and never started up again.  My lung tumors were partial responders to the IL-2 in that they stopped growing for 20 months.  This 20 month delay let one per review paper be published on the first drug (before any formal clinical trials were run) on Gleevec (an FDA approved cancer treatment for other cancers that tested positive for c-kit.)  Based on this one paper my Oncology team went along with my request to try it.  I have been stable for 2 1/4 years now on the Gleevec since I am positive for c-kit. 

If you test positive for one of the targeted drugs, they are a likely possibility.  If not, my first choice would be either IL-2 or Ipi.  Possibly one of them them followed up with the other one (as worked for Jimmy B James Breitfeller 

There are other trials that are appearing as likely candidates. 

Boots,

Hey, I wish I had some pearls of wisdom for you, but being in the same "graduating class", I'm not sure that I do. Obviously, we know about aggressive melanoma, but I would think the fact that he's responding ridiculously well to chemotherapy would not be that helpful to you. 

Still, I know how much being where you are s*cks. BRAF drugs, if you qualify, work quickly, but it will take 2-3 weeks to find out if you're eligible, so you should get them on it right away if you find out your staging has changed. It might be something you could do while they culture TIL cells? TIL certainly seems like a promising treatment worth looking into.

I really hope things have not progressed for you, but regardless of the results, I am here for you if you need support or want to talk.

Michelle, wife of Don

Boots,

Hey, I wish I had some pearls of wisdom for you, but being in the same "graduating class", I'm not sure that I do. Obviously, we know about aggressive melanoma, but I would think the fact that he's responding ridiculously well to chemotherapy would not be that helpful to you. 

Still, I know how much being where you are s*cks. BRAF drugs, if you qualify, work quickly, but it will take 2-3 weeks to find out if you're eligible, so you should get them on it right away if you find out your staging has changed. It might be something you could do while they culture TIL cells? TIL certainly seems like a promising treatment worth looking into.

I really hope things have not progressed for you, but regardless of the results, I am here for you if you need support or want to talk.

Michelle, wife of Don