Hello, an NIH “ACT” update…

This topic has 24 replies, 12 voices, and was last updated 13 years, 4 months ago by Suzan AB.

Post

- April 22, 2011 at 7:29 am
- Quote
himynameiskevin
Participant
Well, it's midnight, I just got home from a long day of shuttles, flights and airports. But before I lay down to sleep, an update:

Well, it's midnight, I just got home from a long day of shuttles, flights and airports. But before I lay down to sleep, an update:

So.., I had another solo trip the NIH in D.C. on Tuesday for my forth round of monthly scans. One day of traveling, one day of bloodwork and scans, and today, the doctors visit followed by the traveling home. And this months results are..

Things are still shrinking. At a snails pace. But still shrinking. There is nothing new and my brain is still clear.
Not a cure, but great news nonetheless. My doctor did mention that it appeared that one might be a little bigger, but because it's so small, and since all the others are shrinking, she thinks it most likely just seems like that because of the way the CT scan image was spliced. I go back in another month and see what they have to say about it and the others.
She said not to worry about it. …I'm sweating bullets.

Each month I really hope and pray for some… bigger number I guess, of percentage down or tumors disappeared. (as we all do I'm sure)
But it seems each month, the progress has been getting slower and slower, and I'm a little worried about the months to come. :/
We'll see. I guess I'll cross that bridge when I get there. I try to remind myself, that just 6 months ago this stuff was spreading out of control and I would've done just about anything to get it to pause, even if only for a day. And I guess I'm pretty fortunate and should be happy to be where I'm at right now, even if it isn't where I hope to be someday. And I can't rule any possibilities out. From what they've told me, they've seen just all sorts of reactions in different people, different timelines and effectiveness, progress or lack thereof etc…So it's really hard to say what to expect. I also heard a guy in the waiting room mention to another guy that his stuff didn't really budge for 6 months, then something kicked in and all of a sudden his adopted cells just went to town on all the enemies. 🙂 …Made me hopeful.

We'll see what next month has to say.

Until next time, I hope you all are doing well, and as always thanks for the positive thoughts, wishes, prayers, comments, and happy dances.

-Kevin

Viewing 15 reply threads

Replies

- - April 22, 2011 at 10:08 am
  - Quote
  FormerCaregiver
  Participant
  Thanks for the update. I feel that your post gives many reasons for us to be optimistic.
  Adoptive cell therapy sounds like a complex procedure, but I have read that it is a really
  promising treatment.
  
  Let's hope that your immune system will soon be able to figure out how to all eliminate
  melanoma cells from your body.
  
  Good luck!
  
  Frank from Australia
  - April 22, 2011 at 10:56 am
    
    Quote
    dawn dion
    Participant
    
    Good to know Kevin – it is on my list of things to try in this insane battle. Keep your chin up – I know it gets hard sometimes – believe me there are days when nothing gets to me and others I could just curl up in a ball and cry all day. You are in my thoughts. Stay strong.
    
    Hugs and Smiles
  - April 22, 2011 at 10:56 am
    
    Quote
    dawn dion
    Participant
    
    Good to know Kevin – it is on my list of things to try in this insane battle. Keep your chin up – I know it gets hard sometimes – believe me there are days when nothing gets to me and others I could just curl up in a ball and cry all day. You are in my thoughts. Stay strong.
    
    Hugs and Smiles
- - April 22, 2011 at 10:08 am
  - Quote
  FormerCaregiver
  Participant
  Thanks for the update. I feel that your post gives many reasons for us to be optimistic.
  Adoptive cell therapy sounds like a complex procedure, but I have read that it is a really
  promising treatment.
  
  Let's hope that your immune system will soon be able to figure out how to all eliminate
  melanoma cells from your body.
  
  Good luck!
  
  Frank from Australia
- - April 22, 2011 at 11:23 am
  - Quote
  Jerry from Cape Cod
  Participant
  Kevin,
  
  Stable is good, shrinkage is better. I had a couple of smaller tumors that sometimes would measure slightly larger. The doctors discounted them due to image angle, acceptable measurement errors,etc. The good news they were right.
  
  Jerry from Cape Cod.
  now one month NEM
- - April 22, 2011 at 11:23 am
  - Quote
  Jerry from Cape Cod
  Participant
  Kevin,
  
  Stable is good, shrinkage is better. I had a couple of smaller tumors that sometimes would measure slightly larger. The doctors discounted them due to image angle, acceptable measurement errors,etc. The good news they were right.
  
  Jerry from Cape Cod.
  now one month NEM
- - April 22, 2011 at 12:33 pm
  - Quote
  jim Breitfeller
  Participant
  Kevin,
  
  Small shrinkage is good. Your immune system, once activated, needs to grow the CD4+ and CD8+ T-cells to fight the cancer, It needs to shift the balance from tolarence to activation. Once activated, it needs to grow the T-cells faster than the growth of the tumors. It takes time. about Anywhere from 250 days to 500. The T-cells need to infiltrate the tumor's microenviroment and kill the tumor cells. Once killed, the phagocytes come in and clear the cell debris.
  
  Warm Regards
  
  Jimmy B
- - April 22, 2011 at 12:33 pm
  - Quote
  jim Breitfeller
  Participant
  Kevin,
  
  Small shrinkage is good. Your immune system, once activated, needs to grow the CD4+ and CD8+ T-cells to fight the cancer, It needs to shift the balance from tolarence to activation. Once activated, it needs to grow the T-cells faster than the growth of the tumors. It takes time. about Anywhere from 250 days to 500. The T-cells need to infiltrate the tumor's microenviroment and kill the tumor cells. Once killed, the phagocytes come in and clear the cell debris.
  
  Warm Regards
  
  Jimmy B
  - April 22, 2011 at 6:47 pm
    
    Quote
    EmilyandMike
    Participant
    
    Jimmy – just wondering – so would you say Kevin should also do Ipi to help take the brakes off the immune system?
  - April 22, 2011 at 6:47 pm
    
    Quote
    EmilyandMike
    Participant
    
    Jimmy – just wondering – so would you say Kevin should also do Ipi to help take the brakes off the immune system?
- - April 22, 2011 at 12:38 pm
  - Quote
  ValinMtl
  Participant
  Delighted to hear the good news…may you keep on improving each and every visit. Val xx
  - April 22, 2011 at 1:59 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    Glad for the good news..it really is good news!! I like Jimmy B's explanation of what is happening…makes it very clear, and very hopeful!
    
    Keep up the good work! Sorry that you are doing these trips solo most of the time.
    
    Vermont_Donna, stage 3a
  - April 22, 2011 at 1:59 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    Glad for the good news..it really is good news!! I like Jimmy B's explanation of what is happening…makes it very clear, and very hopeful!
    
    Keep up the good work! Sorry that you are doing these trips solo most of the time.
    
    Vermont_Donna, stage 3a
- - April 22, 2011 at 12:38 pm
  - Quote
  ValinMtl
  Participant
  Delighted to hear the good news…may you keep on improving each and every visit. Val xx
- - April 22, 2011 at 2:22 pm
  - Quote
  Lori C
  Participant
  It's good news Kevin. It's not perfect, it's not exactly what you want to hear but good is good and hang on to that. It gives you a clear picture that things are moving in the right direction and lots of hope for the future.
  
  Lori
- - April 22, 2011 at 2:22 pm
  - Quote
  Lori C
  Participant
  It's good news Kevin. It's not perfect, it's not exactly what you want to hear but good is good and hang on to that. It gives you a clear picture that things are moving in the right direction and lots of hope for the future.
  
  Lori
- - April 22, 2011 at 7:50 pm
  - Quote
  jag
  Participant
  Kevin, keep hanging in there. Saying prayers for you buddy.
- - April 22, 2011 at 7:50 pm
  - Quote
  jag
  Participant
  Kevin, keep hanging in there. Saying prayers for you buddy.
- - April 23, 2011 at 2:42 am
  - Quote
  Jim in Denver
  Participant
  Thanks for posting, Kevin. I never cease to be im-pressed by your attitude and spirit. This sounds like good news – brain clear and nothing new. I would take that in a heartbeat, even though we all want this evil crap to slow down or stop, if not reverse. Sending positive thoughts.
  
  Best,
  
  Jim
  - April 23, 2011 at 2:47 pm
    
    Quote
    Laurie from maine
    Participant
    
    Kevin,
    
    Any shrinkage is good shrinkage! You are doing great and have such a great attitude. Thank you so much for posting I pray for you and watch for your posts, thank you for posting and keeping us informed.
    
    Keep us updated – positive prayers and thoughts going your way!!!
    
    laurie from maine
  - April 23, 2011 at 2:47 pm
    
    Quote
    Laurie from maine
    Participant
    
    Kevin,
    
    Any shrinkage is good shrinkage! You are doing great and have such a great attitude. Thank you so much for posting I pray for you and watch for your posts, thank you for posting and keeping us informed.
    
    Keep us updated – positive prayers and thoughts going your way!!!
    
    laurie from maine
- - April 23, 2011 at 2:42 am
  - Quote
  Jim in Denver
  Participant
  Thanks for posting, Kevin. I never cease to be im-pressed by your attitude and spirit. This sounds like good news – brain clear and nothing new. I would take that in a heartbeat, even though we all want this evil crap to slow down or stop, if not reverse. Sending positive thoughts.
  
  Best,
  
  Jim
- - April 24, 2011 at 12:14 am
  - Quote
  Suzan AB
  Participant
  Okie Dolkie Kevin…Here it is just for you…Drum Roll Please….Suzan AB doing the Happy Dance,,,uh-huh…deedumdee…Happy Dance for You….(I am singng now…some say the sound is more like screeching…but hey it sounds great in my head…lalalalalaa) May the Swartz be With You and May Your Light Saber be Sharp!!!
  
  Right Arm and Rock On!
  
  Suzan AB
- - April 24, 2011 at 12:14 am
  - Quote
  Suzan AB
  Participant
  Okie Dolkie Kevin…Here it is just for you…Drum Roll Please….Suzan AB doing the Happy Dance,,,uh-huh…deedumdee…Happy Dance for You….(I am singng now…some say the sound is more like screeching…but hey it sounds great in my head…lalalalalaa) May the Swartz be With You and May Your Light Saber be Sharp!!!
  
  Right Arm and Rock On!
  
  Suzan AB