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IL-21 vs DTIC – thoughts please

Forums General Melanoma Community IL-21 vs DTIC – thoughts please

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      I have been trying to follow everyone's posts – but it seems so busy out there.  We also have had a busy summer.  To recap:

      Spring scans showed a nodule on Derek's left lower lobe, surgery confirmed it was mel and of course stage IV

      PET/CT after surgery showed uptake in two more spots on left lower lobe, 1 in right hilar region of lung (uptake of 62), and 1 in liver 

      I have been trying to follow everyone's posts – but it seems so busy out there.  We also have had a busy summer.  To recap:

      Spring scans showed a nodule on Derek's left lower lobe, surgery confirmed it was mel and of course stage IV

      PET/CT after surgery showed uptake in two more spots on left lower lobe, 1 in right hilar region of lung (uptake of 62), and 1 in liver 

      Our onc in Kingston suggested IL-2 in Buffalo or a clinical trial with IL-21 vs DTIC in Kingston.  She veered away from IPI saying she had heard more about side effects then success (which I thought was a little strange).

      We went to see an onc at PMH in Toronto and felt really good about this appointment.  We discussed Derek's history at length, discussed some possible options, he doesn't like IL-2 because of toxicity and has had bad experiences with it (Derek really didn't want to do this anyway), but we did settle on a sort of loose Plan A, B, and C.

      Derek will be rescanned this week along with an MRI of brain (which is frightening), he is unfortunately BRAF negative but they are testing him at PMH for the NRAS mutation so that he could qualify for their fall phase Ib trial testing BKM120 (P13K) and GSK1120212, then he will start IL-21 vs DTIC in Kingston, if randomized into IL-21 and it doesn't work he could begin another chemo drug in a trial at Sunnybrook, then onto either ipi or the new trial at PMH, if in DTIC and it doesn't work we will go right to ipi or the trial. 


      Just looking for some thoughts – good or bad comments about our 'plan' – I have some confidence that this is the right path for us.  We have a 3 and 1 year old and Derek wants very much to be close to them so this will allow that – I just don't want him to miss anything.



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          I am stage three so I don't have direct experience. I want to mention, however, that if I were stage IV one of the reasons that I'd be interested in Ipilimumab is my understanding is the side effects would not be as bad as with some of the other treatments especially in terms of IL2. There are a number of participants on the MPIP that have had sucess with IL2 so I'm not trying to say I don't think it's a good option. I'm sure you will hear from others with experience who can give you and your husband tip regarding your plan.

          For me personally, at my age and with long terms health problems following my groin lymph node dissection, side effects would definitely be one of the factors I'd look at. I'm a 52 year old woman so not a young person nor extremely old. I mention that because if I were 20 I might approach a recurrrence differently. I am only responding though to say that it surprises me that if side effects are a factor in the recommendation that they would suggest less with IL2 than with Ipilimumab.

          That said your husband's plan sounds pretty standard and like it is a good one. I also wanted to say that being negative for the genetic mutations BRAF and or others is not necessarily a bad thing. I know patients have had success with targeted treatments for these mutations which is good but everything I've read indicates that one of the reason they need these targeted treatments is that patients with those mutations often do not do as well with conventional treatments. My point is that for those without the mutations, they may be more likely to respond to the available non targeted treatments.

          Wishing you and your husband the best of luck, Carver


              Hi Carver,

              I was really interested in the comment you made about patients who exhibit the BRAF mutation don't usually do well with conventional treatments.  Do you recall where you read this…if you can please share the source I would really like to read up on that.  I have not heard that side of the story yet.  Thank you.



            James from Sydney

              Hi Terra

              try and look up some of JimmyB's posts. He talks about the synergy of IL2 and Ippillimumab and the timing of their delivery. 

              By no means is he a Melanoma specialist but something he has  researched for a long time.

              Whatever you choose get behind it believe in it and best wishes for a complete response.


              Kim K

                I think you have a solid plan.  The reason I did IL-2 was because of the chance for prolonged remission if you were a complete responder.  DTIC has similar numbers of complete responders but their long term response wasn't as durable.  Yes the side effects are nasty for IL-2, but once completed you rapidly recover.  In addition, you are aggressivley treated for those side effects in the ICU or similar unit.  It is short term.  You respond or you don't.

                It sounded like you folks already went down the IL-2 path with your post.  If he didn't respond then, then don't waste your time with it.  IPI is a good alternative.  You have a good, well thought out plan.  The only problem with the inhibitors though is that they don't readily cross the blood brain barrier, and need to be taken indefinately.  Yes, they also have side effects ex. joint pain.

                You are doing a great job navigating the waters.  There never is one best treatment.  You decide what is best for you and NEVER look back.  You both have to buy into your treatment, then give it time to work.  I hope his disease isn't rapidly progressive.

                Best of luck,

                Kim K – stage IV, NED 1 mos.

                  Sharon in Reno

                    Everyone has already given you really great advice and or sugesstions. No one treatment is best over another for any one person….so I'm sending you positive vibes to help you make the right choice for you. Stay strong and fight on. Good Luck & God Bless. love, Sharon in Reno Stage IV

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