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TIL treatment response

Forums General Melanoma Community TIL treatment response

  • Post
    ValinMtl
    Participant

      Well, went back to NIH with a great deal of trepidation!!  GOOD NEWS!!!  After 3 weeks, there has been 27% reduction based on the nodules studied and their diametres.  Did I get that right?  My doctor will provide me with a written report since at times like this it's difficult to understand.  I can certainly see the improvements.  My doctors tells me overall there is a 62% improvement if you do not focus on only the 'analyzed part'…..anyways I was going to wait until I had a proper written report from the doctors on Monday but I've waited lon

      Well, went back to NIH with a great deal of trepidation!!  GOOD NEWS!!!  After 3 weeks, there has been 27% reduction based on the nodules studied and their diametres.  Did I get that right?  My doctor will provide me with a written report since at times like this it's difficult to understand.  I can certainly see the improvements.  My doctors tells me overall there is a 62% improvement if you do not focus on only the 'analyzed part'…..anyways I was going to wait until I had a proper written report from the doctors on Monday but I've waited long enough, I was petrified to say anything and now I will sing it to the top of the hills.  More detailed info will follow.

      It is sooo nice to see something positive for a change.  To show how little is understood about this program, I had a little bit of a bad turn back in Montreal and ended up in the hospital for one day (halucinations)…one oncologist took my son (my son..NOT me nor my husband!!) aside and asked what were his intentions for his mother since she had only succeeded in 2 of 12 bags of  IL-2 and that is not success (well I've got the famous itch right now!!)…He did not take in to account the millions of good white cells (4.28 milllion) re-injected into my body nor stem cells nor radiation….Go figure.  I told Shaun to ignore his comment.

      Dr. Hessman was my fellow and both Dr. Yang and Dr. Phan came by to congratulate me and apparently Dr. Rosenberg is just delighted.  They told me I am healing faster (ouuchh, my whole body aches especially the lymphedema leg still hurt) than many because of my determination and positive attitude….When I was being offered morphine and palliative radiation in Canada, I knew it was time to take things under my own wing. THANK YOU WARREN, your e-mail was such a God send and wonderful timing.  I had a date for palliative radiation in left groin within a day…I stopped it and spoke to NIH first.   IT WAS A DEFINITE DO NOT DO THAT UNTIL you see us.  Thank goodness.  If they had, they would not have been able to remove an area unafffected by radiation.  Hard qualifications all..in all..  BUT got through and was randomized to TBI side of trial same as Warren 5 years ago.

      Combination treatment might be the wave of the future.  I had yervoy which I responded to very well but left behind two growths in left groin and other growths…TIL just might have killed the rest of the evil one!  One can pray.

      God bless

      And in honour (both past and present) of all our dear friends that fought so hard and volunteered for us to reach this new level of treatment for stage IV.   Val

      PS  Warren how are you doing? I pray they have come up with a treatment for your Merkel cell carcinoma.  Val

    Viewing 19 reply threads
    • Replies
        mombase
        Participant

          Way to go, my French Candadian sister!  What a fantastic decision you made!

          Cristy, Stage IV

          mombase
          Participant

            Way to go, my French Candadian sister!  What a fantastic decision you made!

            Cristy, Stage IV

              ValinMtl
              Participant

                Hi Cristy

                It's a rough treatment but don't rule it out, life can be tough and then you forget about it.  Up to 3 brain mets are acceptable, beware of any radation prior to meeting with NIH. They would remove the 'good' white cells from tumors .  Dr. Rosenberg believes that the reason they live in the tumors is that they are 'stronger' than most…takes them out and 'feeds' them in the labs until grown to correct amount. 

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

                ValinMtl
                Participant

                  Hi Cristy

                  It's a rough treatment but don't rule it out, life can be tough and then you forget about it.  Up to 3 brain mets are acceptable, beware of any radation prior to meeting with NIH. They would remove the 'good' white cells from tumors .  Dr. Rosenberg believes that the reason they live in the tumors is that they are 'stronger' than most…takes them out and 'feeds' them in the labs until grown to correct amount. 

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

                lhaley
                Participant

                  YEAH!!!  Sounds like you are responding so well!  So excited for you. Unfortunately you went through such a hard time but knowing you are responding it was worth it! 

                  Will e-mail later

                  Linda

                  lhaley
                  Participant

                    YEAH!!!  Sounds like you are responding so well!  So excited for you. Unfortunately you went through such a hard time but knowing you are responding it was worth it! 

                    Will e-mail later

                    Linda

                      ValinMtl
                      Participant

                        Would love to hear from you…just back yesterday…Val

                        ValinMtl
                        Participant

                          Would love to hear from you…just back yesterday…Val

                        JerryfromFauq
                        Participant

                          Love this response.  Do have a question aabout the Oncologist that said the IL-2 wa a failure.  Was he a melanoma specialist, an IL-2 specialist or a general Onc?  

                          After the new cells were installed, I would thiink any IL-2 should be beneficial.

                          JerryfromFauq
                          Participant

                            Love this response.  Do have a question aabout the Oncologist that said the IL-2 wa a failure.  Was he a melanoma specialist, an IL-2 specialist or a general Onc?  

                            After the new cells were installed, I would thiink any IL-2 should be beneficial.

                              jim Breitfeller
                              Participant

                                Jerry,

                                L-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast,

                                IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells.

                                IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).

                                Best regards,

                                Jimmy B

                                jim Breitfeller
                                Participant

                                  Jerry,

                                  L-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast,

                                  IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells.

                                  IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).

                                  Best regards,

                                  Jimmy B

                                  ValinMtl
                                  Participant

                                    Thanks Jim.  I will keep this in my file.  Val xx

                                    ValinMtl
                                    Participant

                                      Thanks Jim.  I will keep this in my file.  Val xx

                                      JerryfromFauq
                                      Participant

                                        Jim.

                                        I understand that the timing can be critical, but if the timing is appropriate, Wouldn't any IL-2 be beneficial?

                                        JerryfromFauq
                                        Participant

                                          Jim.

                                          I understand that the timing can be critical, but if the timing is appropriate, Wouldn't any IL-2 be beneficial?

                                          jim Breitfeller
                                          Participant

                                            Jerry,

                                            The timing and how much IL-2 plays a role. If there are a lot of Tregs  around, (Increase Tregs are  found in stage I and Stage IV along with IL-10) then the Tregs can create a IL-2 sink where the Il-2 that is secreted by the CD4+ helper T-cell is taken up by the Treg that it is closest to. See diagram.

                                            The Tregs compete for the screted IL-2. Depending on the location and how close the CD4+ T cell to the Tregs, The tregs can gain the upper hand by creating a IL-2 sink.

                                            How much is secreted and the distance between the cells (T-cell and Treg) Is a major factor.

                                             

                                            I hope this helps

                                             

                                            Jimmy B

                                            jim Breitfeller
                                            Participant

                                              Jerry,

                                              The timing and how much IL-2 plays a role. If there are a lot of Tregs  around, (Increase Tregs are  found in stage I and Stage IV along with IL-10) then the Tregs can create a IL-2 sink where the Il-2 that is secreted by the CD4+ helper T-cell is taken up by the Treg that it is closest to. See diagram.

                                              The Tregs compete for the screted IL-2. Depending on the location and how close the CD4+ T cell to the Tregs, The tregs can gain the upper hand by creating a IL-2 sink.

                                              How much is secreted and the distance between the cells (T-cell and Treg) Is a major factor.

                                               

                                              I hope this helps

                                               

                                              Jimmy B

                                              JerryfromFauq
                                              Participant

                                                Seems any should be of some help, the question then becomes how many Tregs are around and how much IL-2 is enough to overcome the sink.

                                                 

                                                Thanks; Jimmy

                                                Jerry

                                                JerryfromFauq
                                                Participant

                                                  Seems any should be of some help, the question then becomes how many Tregs are around and how much IL-2 is enough to overcome the sink.

                                                   

                                                  Thanks; Jimmy

                                                  Jerry

                                                  ValinMtl
                                                  Participant

                                                    Rather doubt anybody had read the trial description  I was on before making this comment, although it was in my file.  Obvious, to even me with little knowledge.  Told my son….just ignore it.  Val

                                                    ValinMtl
                                                    Participant

                                                      Rather doubt anybody had read the trial description  I was on before making this comment, although it was in my file.  Obvious, to even me with little knowledge.  Told my son….just ignore it.  Val

                                                      ValinMtl
                                                      Participant

                                                        Oops this was meant to be under Jerry's question.

                                                        ValinMtl
                                                        Participant

                                                          Oops this was meant to be under Jerry's question.

                                                          DonW
                                                          Participant

                                                            It is under Jerry's question Val. It's just the screwy way the site displays replies.

                                                            Anyway, great to read your post!

                                                            DonW
                                                            Participant

                                                              It is under Jerry's question Val. It's just the screwy way the site displays replies.

                                                              Anyway, great to read your post!

                                                            KatyWI
                                                            Participant

                                                              Big ol' grin plastered to my face on your behalf!

                                                              Katy

                                                              KatyWI
                                                              Participant

                                                                Big ol' grin plastered to my face on your behalf!

                                                                Katy

                                                                Dynasysman
                                                                Participant

                                                                  Val –

                                                                  What great news!  I particulrly like the part about your spirit and positive attitude being part of the cure.

                                                                  Stay strong and keep fighting.  

                                                                  Roger

                                                                  Dynasysman
                                                                  Participant

                                                                    Val –

                                                                    What great news!  I particulrly like the part about your spirit and positive attitude being part of the cure.

                                                                    Stay strong and keep fighting.  

                                                                    Roger

                                                                    FormerCaregiver
                                                                    Participant

                                                                      Val, thanks for the update. This is really great news!!

                                                                      TIL treatment is certainly a physically demanding therapy. However, it offers us real hope that this horrible disease can be overcome. In fact, I think that it is the best thing that we have to fight melanoma at the moment.

                                                                      You are in my thoughts and prayers.

                                                                      Frank from Australia

                                                                      FormerCaregiver
                                                                      Participant

                                                                        Val, thanks for the update. This is really great news!!

                                                                        TIL treatment is certainly a physically demanding therapy. However, it offers us real hope that this horrible disease can be overcome. In fact, I think that it is the best thing that we have to fight melanoma at the moment.

                                                                        You are in my thoughts and prayers.

                                                                        Frank from Australia

                                                                          Vermont_Donna
                                                                          Participant

                                                                            Dear Val,

                                                                              I am so incredibly pleased for you and this wonderfully fantastic news!!!!!! I do not like that old fashioned approach of the Montreal oncologist to take aside your son and speak to him instead of speaking to YOU along with your husband and son and whoever you wanted to be there…and he obviously didnt know what he should know about TIL.

                                                                            Now I jst wish I could understand what Jimmy B posts the way he understands it! (Thanks Jimmy B…you are amazing).

                                                                            Hugs,

                                                                            Vermont_Donna, stage 3a, NED

                                                                            Vermont_Donna
                                                                            Participant

                                                                              Dear Val,

                                                                                I am so incredibly pleased for you and this wonderfully fantastic news!!!!!! I do not like that old fashioned approach of the Montreal oncologist to take aside your son and speak to him instead of speaking to YOU along with your husband and son and whoever you wanted to be there…and he obviously didnt know what he should know about TIL.

                                                                              Now I jst wish I could understand what Jimmy B posts the way he understands it! (Thanks Jimmy B…you are amazing).

                                                                              Hugs,

                                                                              Vermont_Donna, stage 3a, NED

                                                                              JerryfromFauq
                                                                              Participant

                                                                                I wish we all could understand it like Jimmy.  I wish that all the Oncologist even did.  I am so far behind Jimmy, but do so much appreciate his work and postings!  I hope at least a small amount sticks with me from each.  (OH WELL, never did think I learned as fast as I wanted too!)

                                                                                JerryfromFauq
                                                                                Participant

                                                                                  I wish we all could understand it like Jimmy.  I wish that all the Oncologist even did.  I am so far behind Jimmy, but do so much appreciate his work and postings!  I hope at least a small amount sticks with me from each.  (OH WELL, never did think I learned as fast as I wanted too!)

                                                                                MariaH
                                                                                Participant

                                                                                  I am so VERY, VERY, happy for you Val!!  Hope those buggers continue to shrink –

                                                                                  All our best to you,

                                                                                  Dave and Maria

                                                                                  MariaH
                                                                                  Participant

                                                                                    I am so VERY, VERY, happy for you Val!!  Hope those buggers continue to shrink –

                                                                                    All our best to you,

                                                                                    Dave and Maria

                                                                                    Rebecca and Bob
                                                                                    Participant

                                                                                      Hey Val,

                                                                                       

                                                                                      Terrific news to hear. So happy for you. We feel NIH is such a great place. We also have doctor Hessman as Bob's fellow, she's nice and very knowledgeable. If Dr. Yang is congratulating you, you know it's a good thing. He seems like the most serious man about stomping out melanoma. He handled Bob's treatment and Dr Phan did one of his surgery's. We think they are just great.

                                                                                      Hope you have the energy to celebrate. Take care of yourself!

                                                                                       

                                                                                      Rebecca

                                                                                      Rebecca and Bob
                                                                                      Participant

                                                                                        Hey Val,

                                                                                         

                                                                                        Terrific news to hear. So happy for you. We feel NIH is such a great place. We also have doctor Hessman as Bob's fellow, she's nice and very knowledgeable. If Dr. Yang is congratulating you, you know it's a good thing. He seems like the most serious man about stomping out melanoma. He handled Bob's treatment and Dr Phan did one of his surgery's. We think they are just great.

                                                                                        Hope you have the energy to celebrate. Take care of yourself!

                                                                                         

                                                                                        Rebecca

                                                                                        acyr
                                                                                        Participant

                                                                                          I am over the top happy for you!  This is the news we have been waiting for.  It will give to many others hope for some options Val.  I know it was tough, but the results look to be worth it.  I pray for your continued improvement and to finally kick this to the curb.  Big hugs.  I am sure Sharyn is doing a dance for you from up above.

                                                                                          Annette IIIB

                                                                                          acyr
                                                                                          Participant

                                                                                            I am over the top happy for you!  This is the news we have been waiting for.  It will give to many others hope for some options Val.  I know it was tough, but the results look to be worth it.  I pray for your continued improvement and to finally kick this to the curb.  Big hugs.  I am sure Sharyn is doing a dance for you from up above.

                                                                                            Annette IIIB

                                                                                              ValinMtl
                                                                                              Participant

                                                                                                Thanks Annette.  You don't know how often I think of Sharyn.  It is she who taught me to question the doctors when they make decisions and a continued fighting spirit….God bless her…I can certainly see her enjoying a dance or two up above.  Val

                                                                                                ValinMtl
                                                                                                Participant

                                                                                                  Thanks Annette.  You don't know how often I think of Sharyn.  It is she who taught me to question the doctors when they make decisions and a continued fighting spirit….God bless her…I can certainly see her enjoying a dance or two up above.  Val

                                                                                                wgalinat
                                                                                                Participant
                                                                                                  I’m loving it. Don’t thank me so much…you did all the work. I’ve always tried just to give people some help some hope and I’m just one guy on here. Lots of others do much more here. I’m working on the Merkel nonsense still and it’s also tough as nails. Just continue to enjoy family and life. Juliet starts pre-school on Tuesday and ‘GrandPa’ will be there with a camera. Grin.
                                                                                                  wgalinat
                                                                                                  Participant
                                                                                                    I’m loving it. Don’t thank me so much…you did all the work. I’ve always tried just to give people some help some hope and I’m just one guy on here. Lots of others do much more here. I’m working on the Merkel nonsense still and it’s also tough as nails. Just continue to enjoy family and life. Juliet starts pre-school on Tuesday and ‘GrandPa’ will be there with a camera. Grin.
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