Scan results after Ipi + IL2 Trial

This topic has 66 replies, 18 voices, and was last updated 10 years, 2 months ago by JoshF.

Post

- February 20, 2014 at 9:36 am
- Quote
JoshF
Participant
It's been a long road since I was desperately posting in Aug/Sept. For those of you who have been following I opted to do Promtheus Labs Trial/Study of ipi + IL2 randomized combo after recurrence in rt cheek and ultimately mets to lungs. Went through 4 doses of ipi…side effects were itchyskin/rash & hypothyroid which we're still trying to get under control. Then did 2 rounds of IL2…took 11 of 12 bags each time…rough treatment but I was well prepared after hearing from some of you notably Jerry from Fauq and Rebecca & Bob. I've been out of hospital 3 weeks now…feeling pretty good.

I had Pet scan Monday and received results yesterday. Lung nodules gone…NED!!! I was shocked and relieved. There was mild uptake in rt cheek but doc said this is consistent with scarring/healing. Still makes me nervous…that's where it all started…and I had surgery in September. That sound right? I get aggravated with myself because this is news we all want to hear and though I'm happy…seems like I can never fully accept it.

I'm pulling and praying for all of you out there…this is one tricky disease. I know there's some promising treatments on horizon and my wish for 2014 is that they continue to come to fruition and benefit all of you courageous warriors.

Best

Josh

Viewing 41 reply threads

Replies

- - February 20, 2014 at 9:58 am
  - Quote
  GAngel
  Participant
  Wonderful news Josh! What a blessing! I will continue to pray for you and all who are fighting this beast. Keep believing.
  
  Gina
- - February 20, 2014 at 9:58 am
  - Quote
  GAngel
  Participant
  Wonderful news Josh! What a blessing! I will continue to pray for you and all who are fighting this beast. Keep believing.
  
  Gina
- - February 20, 2014 at 9:58 am
  - Quote
  GAngel
  Participant
  Wonderful news Josh! What a blessing! I will continue to pray for you and all who are fighting this beast. Keep believing.
  
  Gina
- - February 20, 2014 at 11:20 am
  - Quote
  Mat
  Participant
  Josh, congratulations! Great news!
- - February 20, 2014 at 11:20 am
  - Quote
  Mat
  Participant
  Josh, congratulations! Great news!
- - February 20, 2014 at 11:20 am
  - Quote
  Mat
  Participant
  Josh, congratulations! Great news!
- - February 20, 2014 at 11:30 am
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  Jewel
  Participant
  Fantastic News!!! May it be for forever!!
  
  Jewel
- - February 20, 2014 at 11:30 am
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  Jewel
  Participant
  Fantastic News!!! May it be for forever!!
  
  Jewel
- - February 20, 2014 at 11:30 am
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  Jewel
  Participant
  Fantastic News!!! May it be for forever!!
  
  Jewel
- - February 20, 2014 at 12:29 pm
  - Quote
  jim Breitfeller
  Participant
  Josh,
  
  congrats! Back in 2009 I wrote a paper called "melanoma and the magic bullet". It was all about the combination of IPI and IL-2. It was based on my my own experience. Timing of the two therapies played a roll it. I spent a number of years researching this combination.I am so happy that you are a responder. The trick now is to stay NED. Good nutrition plays a roll.
  
  jimmy b
- - February 20, 2014 at 12:29 pm
  - Quote
  jim Breitfeller
  Participant
  Josh,
  
  congrats! Back in 2009 I wrote a paper called "melanoma and the magic bullet". It was all about the combination of IPI and IL-2. It was based on my my own experience. Timing of the two therapies played a roll it. I spent a number of years researching this combination.I am so happy that you are a responder. The trick now is to stay NED. Good nutrition plays a roll.
  
  jimmy b
  - February 20, 2014 at 5:15 pm
    
    Quote
    JoshF
    Participant
    
    Jim-
    
    I did read a lot of your blog…not that I understood a whole lot of it but I found it fascinating. It was a big factor in me deciding to do this trial.
    
    Can you share what you've done in regards to diet? Also any advice on trick of staying NED? 😉
    
    Josh
  - February 20, 2014 at 5:15 pm
    
    Quote
    JoshF
    Participant
    
    Jim-
    
    I did read a lot of your blog…not that I understood a whole lot of it but I found it fascinating. It was a big factor in me deciding to do this trial.
    
    Can you share what you've done in regards to diet? Also any advice on trick of staying NED? 😉
    
    Josh
  - February 20, 2014 at 5:15 pm
    
    Quote
    JoshF
    Participant
    
    Jim-
    
    I did read a lot of your blog…not that I understood a whole lot of it but I found it fascinating. It was a big factor in me deciding to do this trial.
    
    Can you share what you've done in regards to diet? Also any advice on trick of staying NED? 😉
    
    Josh
- - February 20, 2014 at 12:29 pm
  - Quote
  jim Breitfeller
  Participant
  Josh,
  
  congrats! Back in 2009 I wrote a paper called "melanoma and the magic bullet". It was all about the combination of IPI and IL-2. It was based on my my own experience. Timing of the two therapies played a roll it. I spent a number of years researching this combination.I am so happy that you are a responder. The trick now is to stay NED. Good nutrition plays a roll.
  
  jimmy b
- - February 20, 2014 at 12:43 pm
  - Quote
  Bubbles
  Participant
  That's wonderful, Josh!!! I really do understand what you mean. Try to recover and enjoy!! I think you and Jim are LIVING proof that for a lot of folks, combo's may be the real key to melanoma therapy. Yours, C
- - February 20, 2014 at 12:43 pm
  - Quote
  Bubbles
  Participant
  That's wonderful, Josh!!! I really do understand what you mean. Try to recover and enjoy!! I think you and Jim are LIVING proof that for a lot of folks, combo's may be the real key to melanoma therapy. Yours, C
- - February 20, 2014 at 12:43 pm
  - Quote
  Bubbles
  Participant
  That's wonderful, Josh!!! I really do understand what you mean. Try to recover and enjoy!! I think you and Jim are LIVING proof that for a lot of folks, combo's may be the real key to melanoma therapy. Yours, C
- - February 20, 2014 at 12:55 pm
  - Quote
  SABKLYN
  Participant
  Awesome news Josh!
- - February 20, 2014 at 12:55 pm
  - Quote
  SABKLYN
  Participant
  Awesome news Josh!
- - February 20, 2014 at 12:55 pm
  - Quote
  SABKLYN
  Participant
  Awesome news Josh!
- - February 20, 2014 at 1:05 pm
  - Quote
  POW
  Participant
  That's wonderful news, Josh! Thank you for posting it! Very, very encouraging to other melanoma warriors!
  
  I understand you being concerned about the residual PET activity. But remember, ipi's effectiveness continues to increase for several months after your last infusion. It is still working on your tumors. And IL-2 seems to be able to work almost forever. So whatever it is that has been killing your tumors is still on the job, still attacking melanoma.
  
  With such great results so quickly, I expect to see your case as one of the ones Prometheus will be crowing about at the ASCO meeting in June. Cool, eh?
- - February 20, 2014 at 1:05 pm
  - Quote
  POW
  Participant
  That's wonderful news, Josh! Thank you for posting it! Very, very encouraging to other melanoma warriors!
  
  I understand you being concerned about the residual PET activity. But remember, ipi's effectiveness continues to increase for several months after your last infusion. It is still working on your tumors. And IL-2 seems to be able to work almost forever. So whatever it is that has been killing your tumors is still on the job, still attacking melanoma.
  
  With such great results so quickly, I expect to see your case as one of the ones Prometheus will be crowing about at the ASCO meeting in June. Cool, eh?
- - February 20, 2014 at 1:05 pm
  - Quote
  POW
  Participant
  That's wonderful news, Josh! Thank you for posting it! Very, very encouraging to other melanoma warriors!
  
  I understand you being concerned about the residual PET activity. But remember, ipi's effectiveness continues to increase for several months after your last infusion. It is still working on your tumors. And IL-2 seems to be able to work almost forever. So whatever it is that has been killing your tumors is still on the job, still attacking melanoma.
  
  With such great results so quickly, I expect to see your case as one of the ones Prometheus will be crowing about at the ASCO meeting in June. Cool, eh?
  - February 20, 2014 at 2:44 pm
    
    Quote
    Brendan
    Participant
    
    Great news, Josh. Thanks for posting.
    
    Brendan
  - February 20, 2014 at 2:44 pm
    
    Quote
    Brendan
    Participant
    
    Great news, Josh. Thanks for posting.
    
    Brendan
  - February 20, 2014 at 2:44 pm
    
    Quote
    Brendan
    Participant
    
    Great news, Josh. Thanks for posting.
    
    Brendan
- - February 20, 2014 at 3:01 pm
  - Quote
  kpcollins31
  Participant
  Congratulations, Josh – Great news!
  
  Kevin
- - February 20, 2014 at 3:01 pm
  - Quote
  kpcollins31
  Participant
  Congratulations, Josh – Great news!
  
  Kevin
- - February 20, 2014 at 3:01 pm
  - Quote
  kpcollins31
  Participant
  Congratulations, Josh – Great news!
  
  Kevin
  - February 20, 2014 at 3:38 pm
    
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    sofistef
    Participant
    
    Thanks for posting the great news, Congratulations!! Wishing you continuous NED!
  - February 20, 2014 at 3:38 pm
    
    Quote
    sofistef
    Participant
    
    Thanks for posting the great news, Congratulations!! Wishing you continuous NED!
  - February 20, 2014 at 5:15 pm
    
    Quote
    tschmith
    Participant
    
    Congratulations, Josh! NED is such good news!
  - February 20, 2014 at 5:15 pm
    
    Quote
    tschmith
    Participant
    
    Congratulations, Josh! NED is such good news!
  - February 20, 2014 at 5:15 pm
    
    Quote
    tschmith
    Participant
    
    Congratulations, Josh! NED is such good news!
  - February 20, 2014 at 3:38 pm
    
    Quote
    sofistef
    Participant
    
    Thanks for posting the great news, Congratulations!! Wishing you continuous NED!
- - February 20, 2014 at 7:41 pm
  - Quote
  JerryfromFauq
  Participant
  Josh, I suspect you have some idea as to how happy I am for your results. Suspect you are even more happy! I would expect there to be SUV uptake where the original operation/removal occured. ALL my operations/tissue injuries show on all my scans . Just keep an eye out and as long as the locations stay stable, just stick your tongue out at them!
- - February 20, 2014 at 7:41 pm
  - Quote
  JerryfromFauq
  Participant
  Josh, I suspect you have some idea as to how happy I am for your results. Suspect you are even more happy! I would expect there to be SUV uptake where the original operation/removal occured. ALL my operations/tissue injuries show on all my scans . Just keep an eye out and as long as the locations stay stable, just stick your tongue out at them!
- - February 20, 2014 at 7:41 pm
  - Quote
  JerryfromFauq
  Participant
  Josh, I suspect you have some idea as to how happy I am for your results. Suspect you are even more happy! I would expect there to be SUV uptake where the original operation/removal occured. ALL my operations/tissue injuries show on all my scans . Just keep an eye out and as long as the locations stay stable, just stick your tongue out at them!
- - February 20, 2014 at 7:48 pm
  - Quote
  BrianP
  Participant
  Wonderful news Josh. Thanks for sharing. Enjoy your NED status.
  
  Brian
- - February 20, 2014 at 7:48 pm
  - Quote
  BrianP
  Participant
  Wonderful news Josh. Thanks for sharing. Enjoy your NED status.
  
  Brian
- - February 20, 2014 at 7:48 pm
  - Quote
  BrianP
  Participant
  Wonderful news Josh. Thanks for sharing. Enjoy your NED status.
  
  Brian
- - February 21, 2014 at 2:34 am
  - Quote
  Jahendry12
  Participant
  That's fantastic!!!!! I was hoping and praying we were going to hear good news from you! So happy for you!
  
  Remember to celebrate these milestones 🙂
  
  Julie
- - February 21, 2014 at 2:34 am
  - Quote
  Jahendry12
  Participant
  That's fantastic!!!!! I was hoping and praying we were going to hear good news from you! So happy for you!
  
  Remember to celebrate these milestones 🙂
  
  Julie
- - February 21, 2014 at 2:34 am
  - Quote
  Jahendry12
  Participant
  That's fantastic!!!!! I was hoping and praying we were going to hear good news from you! So happy for you!
  
  Remember to celebrate these milestones 🙂
  
  Julie
- - February 21, 2014 at 9:02 pm
  - Quote
  eric w
  Participant
  Good news Josh.. Curious your braf status and if you are braf negative do you know any other mutation info like NRAS, CKit, etc. also do you happen to have the protocol for your trial that you can share? Thanks
- - February 21, 2014 at 9:02 pm
  - Quote
  eric w
  Participant
  Good news Josh.. Curious your braf status and if you are braf negative do you know any other mutation info like NRAS, CKit, etc. also do you happen to have the protocol for your trial that you can share? Thanks
- - February 21, 2014 at 9:02 pm
  - Quote
  eric w
  Participant
  Good news Josh.. Curious your braf status and if you are braf negative do you know any other mutation info like NRAS, CKit, etc. also do you happen to have the protocol for your trial that you can share? Thanks
  - February 21, 2014 at 10:09 pm
    
    Quote
    JoshF
    Participant
    
    Hi…braf negative otherwise doc would have wanted to pursue the Zel & IL2 trial. There was no testing for other mutations. I asked and doc said highly unusual for CKit…wouldn't rule NRAS but again felt likely would be negative. That being said at the end of it all…it wouldn't change what they felt treatment plan would be.
    
    http://www.cancer.gov/clinicaltrials/search/view?cdrid=740240&version=HealthProfessional&protocolsearchid=11587501
  - February 21, 2014 at 11:51 pm
    
    Quote
    eric w
    Participant
    
    Thanks
  - February 21, 2014 at 11:51 pm
    
    Quote
    eric w
    Participant
    
    Thanks
  - February 21, 2014 at 11:51 pm
    
    Quote
    eric w
    Participant
    
    Thanks
  - February 21, 2014 at 10:09 pm
    
    Quote
    JoshF
    Participant
    
    Hi…braf negative otherwise doc would have wanted to pursue the Zel & IL2 trial. There was no testing for other mutations. I asked and doc said highly unusual for CKit…wouldn't rule NRAS but again felt likely would be negative. That being said at the end of it all…it wouldn't change what they felt treatment plan would be.
    
    http://www.cancer.gov/clinicaltrials/search/view?cdrid=740240&version=HealthProfessional&protocolsearchid=11587501
  - February 21, 2014 at 10:09 pm
    
    Quote
    JoshF
    Participant
    
    Hi…braf negative otherwise doc would have wanted to pursue the Zel & IL2 trial. There was no testing for other mutations. I asked and doc said highly unusual for CKit…wouldn't rule NRAS but again felt likely would be negative. That being said at the end of it all…it wouldn't change what they felt treatment plan would be.
    
    http://www.cancer.gov/clinicaltrials/search/view?cdrid=740240&version=HealthProfessional&protocolsearchid=11587501
- - February 22, 2014 at 12:59 pm
  - Quote
  nancyg
  Participant
  So so happy to hear!!!
  - February 23, 2014 at 1:56 am
    
    Quote
    NYKaren
    Participant
    
    Josh,
    
    i am just thrilled at your news.
    
    Karen
  - February 23, 2014 at 1:56 am
    
    Quote
    NYKaren
    Participant
    
    Josh,
    
    i am just thrilled at your news.
    
    Karen
  - February 23, 2014 at 1:56 am
    
    Quote
    NYKaren
    Participant
    
    Josh,
    
    i am just thrilled at your news.
    
    Karen
- - February 22, 2014 at 12:59 pm
  - Quote
  nancyg
  Participant
  So so happy to hear!!!
- - February 22, 2014 at 12:59 pm
  - Quote
  nancyg
  Participant
  So so happy to hear!!!
- - February 23, 2014 at 2:40 pm
  - Quote
  eric w
  Participant
  Hey Josh,
  
  How long did you wait from your last dose of ipi to induction of IL-2? Thanks
  - February 23, 2014 at 11:43 pm
    
    Quote
    JoshF
    Participant
    
    About a month….there was a dose timing protocol that the trial wanted you to follow. I think I had another week I could've waited but my oncs felt with athe quick response I was getting from ipi…30 days was good
  - February 23, 2014 at 11:43 pm
    
    Quote
    JoshF
    Participant
    
    About a month….there was a dose timing protocol that the trial wanted you to follow. I think I had another week I could've waited but my oncs felt with athe quick response I was getting from ipi…30 days was good
  - February 23, 2014 at 11:43 pm
    
    Quote
    JoshF
    Participant
    
    About a month….there was a dose timing protocol that the trial wanted you to follow. I think I had another week I could've waited but my oncs felt with athe quick response I was getting from ipi…30 days was good
- - February 23, 2014 at 2:40 pm
  - Quote
  eric w
  Participant
  Hey Josh,
  
  How long did you wait from your last dose of ipi to induction of IL-2? Thanks
- - February 23, 2014 at 2:40 pm
  - Quote
  eric w
  Participant
  Hey Josh,
  
  How long did you wait from your last dose of ipi to induction of IL-2? Thanks