TIL treatment response

This topic has 48 replies, 14 voices, and was last updated 13 years ago by JerryfromFauq.

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- October 1, 2011 at 2:41 pm
- Quote
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

- - October 1, 2011 at 3:08 pm
  - Quote
  mombase
  Participant
  Way to go, my French Candadian sister! What a fantastic decision you made!
  
  Cristy, Stage IV
  - October 1, 2011 at 3:22 pm
    
    Quote
    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
  - October 1, 2011 at 3:22 pm
    
    Quote
    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
- - October 1, 2011 at 3:08 pm
  - Quote
  mombase
  Participant
  Way to go, my French Candadian sister! What a fantastic decision you made!
  
  Cristy, Stage IV
- - October 1, 2011 at 3:14 pm
  - Quote
  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
  - October 1, 2011 at 3:23 pm
    
    Quote
    ValinMtl
    Participant
    
    Would love to hear from you…just back yesterday…Val
  - October 1, 2011 at 3:23 pm
    
    Quote
    ValinMtl
    Participant
    
    Would love to hear from you…just back yesterday…Val
- - October 1, 2011 at 3:14 pm
  - Quote
  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
- - October 1, 2011 at 6:24 pm
  - Quote
  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.
  - October 1, 2011 at 7:29 pm
    
    Quote
    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
  - October 1, 2011 at 7:31 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Graphic of IL-2 and T-cells
    
    http://2.bp.blogspot.com/-bnN8oemwz8Y/TodCXLycjRI/AAAAAAAAAg0/tJqm3oFqI10/s1600/Conventional%2BEffector%2BT-Cells%2Bsecrete%2BIL-2%2B2011.jpg
  - October 1, 2011 at 7:31 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Graphic of IL-2 and T-cells
    
    http://2.bp.blogspot.com/-bnN8oemwz8Y/TodCXLycjRI/AAAAAAAAAg0/tJqm3oFqI10/s1600/Conventional%2BEffector%2BT-Cells%2Bsecrete%2BIL-2%2B2011.jpg
  - October 1, 2011 at 10:27 pm
    
    Quote
    ValinMtl
    Participant
    
    Thanks Jim. I will keep this in my file. Val xx
  - October 1, 2011 at 10:27 pm
    
    Quote
    ValinMtl
    Participant
    
    Thanks Jim. I will keep this in my file. Val xx
  - October 2, 2011 at 5:59 am
    
    Quote
    JerryfromFauq
    Participant
    
    Jim.
    
    I understand that the timing can be critical, but if the timing is appropriate, Wouldn't any IL-2 be beneficial?
  - October 2, 2011 at 2:47 pm
    
    Quote
    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
  - October 3, 2011 at 4:22 am
    
    Quote
    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
  - October 3, 2011 at 4:22 am
    
    Quote
    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
  - October 2, 2011 at 2:47 pm
    
    Quote
    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
  - October 2, 2011 at 5:59 am
    
    Quote
    JerryfromFauq
    Participant
    
    Jim.
    
    I understand that the timing can be critical, but if the timing is appropriate, Wouldn't any IL-2 be beneficial?
  - October 1, 2011 at 7:29 pm
    
    Quote
    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
  - October 1, 2011 at 9:03 pm
    
    Quote
    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
  - October 1, 2011 at 9:03 pm
    
    Quote
    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
  - October 1, 2011 at 9:04 pm
    
    Quote
    ValinMtl
    Participant
    
    Oops this was meant to be under Jerry's question.
  - October 1, 2011 at 9:04 pm
    
    Quote
    ValinMtl
    Participant
    
    Oops this was meant to be under Jerry's question.
  - October 2, 2011 at 12:59 am
    
    Quote
    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!
  - October 2, 2011 at 12:59 am
    
    Quote
    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!
- - October 1, 2011 at 6:24 pm
  - Quote
  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.
- - October 1, 2011 at 10:57 pm
  - Quote
  KatyWI
  Participant
  Big ol' grin plastered to my face on your behalf!
  
  Katy
- - October 1, 2011 at 10:57 pm
  - Quote
  KatyWI
  Participant
  Big ol' grin plastered to my face on your behalf!
  
  Katy
- - October 2, 2011 at 3:11 am
  - Quote
  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
- - October 2, 2011 at 3:11 am
  - Quote
  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
- - October 2, 2011 at 7:21 am
  - Quote
  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
  - October 2, 2011 at 11:02 am
    
    Quote
    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
  - October 3, 2011 at 4:48 am
    
    Quote
    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!)
  - October 3, 2011 at 4:48 am
    
    Quote
    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!)
  - October 2, 2011 at 11:02 am
    
    Quote
    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
- - October 2, 2011 at 7:21 am
  - Quote
  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
- - October 2, 2011 at 1:38 pm
  - Quote
  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
- - October 2, 2011 at 1:38 pm
  - Quote
  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
- - October 2, 2011 at 6:26 pm
  - Quote
  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
- - October 2, 2011 at 6:26 pm
  - Quote
  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
- - October 2, 2011 at 8:42 pm
  - Quote
  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
- - October 2, 2011 at 8:42 pm
  - Quote
  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
  - October 3, 2011 at 2:27 am
    
    Quote
    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
  - October 3, 2011 at 2:27 am
    
    Quote
    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
- - October 3, 2011 at 3:35 am
  - Quote
  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.
- - October 3, 2011 at 3:35 am
  - Quote
  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.