Complete responder to Ipi: Status NED three months

This topic has 52 replies, 18 voices, and was last updated 13 years, 5 months ago by rainsberger.tony.

Post

- May 11, 2011 at 11:52 pm
- Quote
Vermont_Donna
Participant
Hi everyone,

Hi everyone,

I had my 12 week checkup including a PET/CT scan, labs and melanoma oncology checkup today. My PET/CT scan is completely clear of the hot spots from three months ago, except from where I have 11 month old poorly healing wider excision wounds on my lower calf. All other suspicious hot spots are now gone. My melanoma oncologist has declared me a complete responder to Ipi and I will NOT have further Ipi trreatments, unless I notice a re-occurence or it shows up on my next PET/CT scan, scheduled for 12 weeks from now. The clinical trial coordinator had thought a few weeks ago that I would receive another four infusions but now that Ipi is FDA approved the trial I was in is closed, so no more doses per the trial protocol. I am fine with this.

I am hoping that all others who are on Ipi have as complete as response as I have!

Vermont_Donna, stage 3a, NED x 3 months

Viewing 31 reply threads

Replies

- - May 12, 2011 at 12:48 am
  - Quote
  King
  Participant
  Donna,
  
  This is wonderful news that you are a complete responder to Ipi…wow!!!! Please keep a close watch on yourself. I would be a bit anxious about no further Ipi at this time but am happy that you are fine with it. I guess it's out of your control since the trial is closed but make sure you stay on top of it (I know you will…just had to say it).
  
  Please celebrate this wonderful news. It should give hope to many others.
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - May 12, 2011 at 12:48 am
  - Quote
  King
  Participant
  Donna,
  
  This is wonderful news that you are a complete responder to Ipi…wow!!!! Please keep a close watch on yourself. I would be a bit anxious about no further Ipi at this time but am happy that you are fine with it. I guess it's out of your control since the trial is closed but make sure you stay on top of it (I know you will…just had to say it).
  
  Please celebrate this wonderful news. It should give hope to many others.
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - May 12, 2011 at 12:55 am
  - Quote
  Fen
  Participant
  Absolutely wonderful!!! Really happy for you and thanks for spreading the good news.
  
  Here's hoping for NED forever!
  
  Fen
- - May 12, 2011 at 12:55 am
  - Quote
  Fen
  Participant
  Absolutely wonderful!!! Really happy for you and thanks for spreading the good news.
  
  Here's hoping for NED forever!
  
  Fen
- - May 12, 2011 at 1:03 am
  - Quote
  djpayn
  Participant
  Donna,
  
  Seeing this makes me so happy!!! Im so glad this has worked for you!!!
  
  Dawna
- - May 12, 2011 at 1:03 am
  - Quote
  djpayn
  Participant
  Donna,
  
  Seeing this makes me so happy!!! Im so glad this has worked for you!!!
  
  Dawna
- - May 12, 2011 at 1:38 am
  - Quote
  lhaley
  Participant
  That is fantastic news! I am so glad that you found your magic bullet against this disease. The good thing from what I read is you that Ippi is one of those drugs that can be administered again with the same results.
  
  Go and enjoy and breathe easy! Thanks for the hope!
  
  Linda
  
  Stage IV (guess I can't post stable anymore ;-(
- - May 12, 2011 at 1:38 am
  - Quote
  lhaley
  Participant
  That is fantastic news! I am so glad that you found your magic bullet against this disease. The good thing from what I read is you that Ippi is one of those drugs that can be administered again with the same results.
  
  Go and enjoy and breathe easy! Thanks for the hope!
  
  Linda
  
  Stage IV (guess I can't post stable anymore ;-(
  - May 12, 2011 at 1:54 am
    
    Quote
    Vermont_Donna
    Participant
    
    I forgot to mention that I was counseled about being on the lookout for all the things ending in "itis", pancreatitis, hepatitis, uveitis (eyes), colitis, rheumatoid athritis(I feel I am getting a bit of this and they are testing me for it)…that since they have "messed" with my immune system, these side effects and possibly more can occur days and MONTHS long after my 4 doses of Ipi…so be diligent and get in touch with them ASAP if I develop any unusual symtoms…and they will do symptom management.
    
    Thanks for the well wishes!
    
    Vermont_Donna
  - May 12, 2011 at 1:54 am
    
    Quote
    Vermont_Donna
    Participant
    
    I forgot to mention that I was counseled about being on the lookout for all the things ending in "itis", pancreatitis, hepatitis, uveitis (eyes), colitis, rheumatoid athritis(I feel I am getting a bit of this and they are testing me for it)…that since they have "messed" with my immune system, these side effects and possibly more can occur days and MONTHS long after my 4 doses of Ipi…so be diligent and get in touch with them ASAP if I develop any unusual symtoms…and they will do symptom management.
    
    Thanks for the well wishes!
    
    Vermont_Donna
  - May 12, 2011 at 4:50 am
    
    Quote
    Gene_S
    Participant
    
    Hi Donna,
    
    Just wondering if you have ever considered having your Vitamin D levels checked?
    
    There are many Vit D tests available but one company is really acurate (lab corp).
    
    The following may be of interest to you…. see:
    
    http://articles.mercola.com/sites/articles/archive/2008/12/16/my-one-hour-vitamin-d-lecture-to-clear-up-all-your-confusion-on-this-vital-nutrient.aspx
    
    Best wishes,
    
    Gene
  - May 12, 2011 at 4:50 am
    
    Quote
    Gene_S
    Participant
    
    Hi Donna,
    
    Just wondering if you have ever considered having your Vitamin D levels checked?
    
    There are many Vit D tests available but one company is really acurate (lab corp).
    
    The following may be of interest to you…. see:
    
    http://articles.mercola.com/sites/articles/archive/2008/12/16/my-one-hour-vitamin-d-lecture-to-clear-up-all-your-confusion-on-this-vital-nutrient.aspx
    
    Best wishes,
    
    Gene
  - May 12, 2011 at 11:49 am
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Gene,
    
    Thanks for asking. I have had my Vitamin D levels checked and they are all in the normal range, and so my oncologist and endocrinologist agreed no other supplementation other than what I take now….calcium with Vitamin D, and a multi vitamin, and I do get some sun, and eat alot of veggies.
    
    Vermont_Donna stage 3a
  - May 12, 2011 at 11:49 am
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Gene,
    
    Thanks for asking. I have had my Vitamin D levels checked and they are all in the normal range, and so my oncologist and endocrinologist agreed no other supplementation other than what I take now….calcium with Vitamin D, and a multi vitamin, and I do get some sun, and eat alot of veggies.
    
    Vermont_Donna stage 3a
- - May 12, 2011 at 10:09 am
  - Quote
  triciad
  Participant
  Donna,
  
  Congratulations! It's wonderful to hear a happy story. I will keep you in my prayers for continued good health…now go have some fun!
  
  Tricia
- - May 12, 2011 at 10:09 am
  - Quote
  triciad
  Participant
  Donna,
  
  Congratulations! It's wonderful to hear a happy story. I will keep you in my prayers for continued good health…now go have some fun!
  
  Tricia
- - May 12, 2011 at 1:09 pm
  - Quote
  jim Breitfeller
  Participant
  Donna,
  
  Congrats on being a complete responder to Ipi.
  
  Could you please send me your timeline? I would like to fit it to the graph, if possible.
  
  http://4.bp.blogspot.com/-7GOwqsvNzH8/Tcvbaevx_lI/AAAAAAAAAdg/U82lgfENoI0/s1600/Yervoy-2011.jpg
  
  Warm regards
  
  Jimmy B
  - May 12, 2011 at 8:48 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Jimmy,
    
    I started my first Ipi infusion on December 1, 2010. Yesterday's PET/CT scan and exam was week 24 since induction. Does this help??
    
    Vermont_Donna, stage 3a
  - May 13, 2011 at 8:11 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Donna,
    
    I believe that the radiation therapy prior to yervoy (Ipi) help shed immunogentic tumor proteins for the DC's and Macrophage to pickup, digest and display on their surfaces. Yervoy, blocked the CTLA receptors and surpressed the tregs surpressive function. T-cell Activation was started.
    
    http://1.bp.blogspot.com/-6zFOjSNtNgA/Tc2OF-uy1OI/AAAAAAAAAdo/V6u5yVPXXZ4/s1600/Donna_Vermont%2B2011.jpg
  - May 13, 2011 at 8:11 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Donna,
    
    I believe that the radiation therapy prior to yervoy (Ipi) help shed immunogentic tumor proteins for the DC's and Macrophage to pickup, digest and display on their surfaces. Yervoy, blocked the CTLA receptors and surpressed the tregs surpressive function. T-cell Activation was started.
    
    http://1.bp.blogspot.com/-6zFOjSNtNgA/Tc2OF-uy1OI/AAAAAAAAAdo/V6u5yVPXXZ4/s1600/Donna_Vermont%2B2011.jpg
  - May 12, 2011 at 8:48 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Jimmy,
    
    I started my first Ipi infusion on December 1, 2010. Yesterday's PET/CT scan and exam was week 24 since induction. Does this help??
    
    Vermont_Donna, stage 3a
- - May 12, 2011 at 1:09 pm
  - Quote
  jim Breitfeller
  Participant
  Donna,
  
  Congrats on being a complete responder to Ipi.
  
  Could you please send me your timeline? I would like to fit it to the graph, if possible.
  
  http://4.bp.blogspot.com/-7GOwqsvNzH8/Tcvbaevx_lI/AAAAAAAAAdg/U82lgfENoI0/s1600/Yervoy-2011.jpg
  
  Warm regards
  
  Jimmy B
- - May 12, 2011 at 1:15 pm
  - Quote
  KellieSue
  Participant
  Woot! Woot! What fantastic news. Congrats!
  
  Kellie(from Iowa) Stage IV on B-raf
- - May 12, 2011 at 1:15 pm
  - Quote
  KellieSue
  Participant
  Woot! Woot! What fantastic news. Congrats!
  
  Kellie(from Iowa) Stage IV on B-raf
- - May 12, 2011 at 1:46 pm
  - Quote
  Carol Taylor
  Participant
  Yea Donna! Wonderful Hallelujah moment! Prayers that they keep coming! All the best to you!
  
  Grace and peace,
  
  Carol
- - May 12, 2011 at 1:46 pm
  - Quote
  Carol Taylor
  Participant
  Yea Donna! Wonderful Hallelujah moment! Prayers that they keep coming! All the best to you!
  
  Grace and peace,
  
  Carol
- - May 12, 2011 at 5:52 pm
  - Quote
  Sherron
  Participant
  Wonderful news!!!!
  
  Take Care,
  
  Sherron,wife to Jim FOREVER
- - May 12, 2011 at 5:52 pm
  - Quote
  Sherron
  Participant
  Wonderful news!!!!
  
  Take Care,
  
  Sherron,wife to Jim FOREVER
- - May 12, 2011 at 7:17 pm
  - Quote
  Shelly in Switzerland
  Participant
  YAHOO! and YIPPEE SKIPPEE! You go girl! You are doing great! Keep marching forward and dancing. The angels are swirling with you.
  
  Continuing to surround you witth love, light, and peace.
  
  Shelly
- - May 12, 2011 at 7:17 pm
  - Quote
  Shelly in Switzerland
  Participant
  YAHOO! and YIPPEE SKIPPEE! You go girl! You are doing great! Keep marching forward and dancing. The angels are swirling with you.
  
  Continuing to surround you witth love, light, and peace.
  
  Shelly
- - May 12, 2011 at 7:17 pm
  - Quote
  Shelly in Switzerland
  Participant
  YAHOO! and YIPPEE SKIPPEE! You go girl! You are doing great! Keep marching forward and dancing. The angels are swirling with you.
  
  Continuing to surround you witth love, light, and peace.
  
  Shelly
- - May 12, 2011 at 7:17 pm
  - Quote
  Shelly in Switzerland
  Participant
  YAHOO! and YIPPEE SKIPPEE! You go girl! You are doing great! Keep marching forward and dancing. The angels are swirling with you.
  
  Continuing to surround you witth love, light, and peace.
  
  Shelly
- - May 12, 2011 at 7:27 pm
  - Quote
  ValinMtl
  Participant
  Hi Donna
  
  I'm so happy for you! This is good news. As for myself…I just had a very bad response to an antibiotic..spent 5 days in the hospital (now allergic to sulphur!!). High fevers, chills, rash like a lobster….as you know I was 1/2 way through second treatment of ipi…it had to be put on hold, They had been very worried it was an immune response by ipi but 'no', it was the antibiotic for sore on my leg that caused it all (they believe). I'll be meeting with doctor in 2 weeks to see what the next step is…worry worry time….I was hoping my 3rd treatment would make the difference but now I don't know what will happen…lump on left groin is still VERY large and sub-qs are popping up on right leg still. Val
- - May 12, 2011 at 7:27 pm
  - Quote
  ValinMtl
  Participant
  Hi Donna
  
  I'm so happy for you! This is good news. As for myself…I just had a very bad response to an antibiotic..spent 5 days in the hospital (now allergic to sulphur!!). High fevers, chills, rash like a lobster….as you know I was 1/2 way through second treatment of ipi…it had to be put on hold, They had been very worried it was an immune response by ipi but 'no', it was the antibiotic for sore on my leg that caused it all (they believe). I'll be meeting with doctor in 2 weeks to see what the next step is…worry worry time….I was hoping my 3rd treatment would make the difference but now I don't know what will happen…lump on left groin is still VERY large and sub-qs are popping up on right leg still. Val
- - May 12, 2011 at 7:59 pm
  - Quote
  nicoli
  Participant
  Thanks for posting, this is so encouraging!! BTW, what is the percentage of those who do respond to ipi? Nicki
  - May 12, 2011 at 8:46 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Nicoli,
    
    Here's an except from an article on response rates that I found in the following article
    
    Ipilimumab and Beyond: New Therapies Imminent in Melanoma
    
    By: SUSAN LONDON, Internal Medicine News Digital Network:
    
    The drug achieves durable responses or stable disease in 20%-30% of patients, and the responses last not weeks or months, but years. An additional 10% of patients have a durable delayed response, characterized by early tumor progression on imaging (which biopsies suggest may actually be tumor flare) followed by regression, even to complete remission in some cases.
    
    Hope this helps!
    
    Vermont_Donna, stage 3a
  - May 12, 2011 at 8:46 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Nicoli,
    
    Here's an except from an article on response rates that I found in the following article
    
    Ipilimumab and Beyond: New Therapies Imminent in Melanoma
    
    By: SUSAN LONDON, Internal Medicine News Digital Network:
    
    The drug achieves durable responses or stable disease in 20%-30% of patients, and the responses last not weeks or months, but years. An additional 10% of patients have a durable delayed response, characterized by early tumor progression on imaging (which biopsies suggest may actually be tumor flare) followed by regression, even to complete remission in some cases.
    
    Hope this helps!
    
    Vermont_Donna, stage 3a
- - May 12, 2011 at 7:59 pm
  - Quote
  nicoli
  Participant
  Thanks for posting, this is so encouraging!! BTW, what is the percentage of those who do respond to ipi? Nicki
- - May 13, 2011 at 6:57 pm
  - Quote
  deirgey
  Participant
  That is FANTASTIC! Very happy for you. It must be nice to not have so much worry and unrest. Congrats and enjoy!
  
  My father is now on his second infusion of Ipi. He is expericing stomach pain and loose stools. They told him this was not associated with the IPI but we find that hard to believe b/c he never has trouble with his stomach. He got a colonoscopy and it was clear. Just wondering if you had similar symptoms.
  
  Deidre – Father Stage IV
- - May 13, 2011 at 6:57 pm
  - Quote
  deirgey
  Participant
  That is FANTASTIC! Very happy for you. It must be nice to not have so much worry and unrest. Congrats and enjoy!
  
  My father is now on his second infusion of Ipi. He is expericing stomach pain and loose stools. They told him this was not associated with the IPI but we find that hard to believe b/c he never has trouble with his stomach. He got a colonoscopy and it was clear. Just wondering if you had similar symptoms.
  
  Deidre – Father Stage IV
  - May 13, 2011 at 7:18 pm
    
    Quote
    ValinMtl
    Participant
    
    Hi
    
    I have have two rounds of ipilimumab treatments..September to November 2010 and now started April..was to have my 3rd treatment but alas..had taken an antibiotic with sulphur…(see above)…hopefully, will have another treatment in the near future. Anyways…just to say, I am rather surprised that they said your symptoms are not associated with ipi…I can guarantee you loose stools are quite common…keep ahead of them by taking immodium whenever necessary, one or two tablets should do the trick…you want to avoid further complications like colitis so important. Val
  - May 13, 2011 at 7:18 pm
    
    Quote
    ValinMtl
    Participant
    
    Hi
    
    I have have two rounds of ipilimumab treatments..September to November 2010 and now started April..was to have my 3rd treatment but alas..had taken an antibiotic with sulphur…(see above)…hopefully, will have another treatment in the near future. Anyways…just to say, I am rather surprised that they said your symptoms are not associated with ipi…I can guarantee you loose stools are quite common…keep ahead of them by taking immodium whenever necessary, one or two tablets should do the trick…you want to avoid further complications like colitis so important. Val
  - May 13, 2011 at 8:05 pm
    
    Quote
    Lisa13
    Participant
    
    I spoke to the ipi trial Dr regarding all the symptoms associated wiith this drug and loose stools was one of them. Infact, they said to notify them of any symptoms as it can become life threatening if you're up to 7 bowel movements a day. I'm sure most people know this, but I wanted to make sure your Dr is aware of your symptoms so that they can keep them in check. I'm so happy this treatment is working for so many people. Due to suspicious activity in my lungs, I was denied access to to the trial.
    
    Best of luck to everyone and thank God for the smarty pants that are making these wonderful drugs for us 🙂
    
    Lisa
  - May 15, 2011 at 3:29 am
    
    Quote
    deirgey
    Participant
    
    Thanks for the info Lisa. We weren't aware of the "7" bowel movements a day so that is good to keep track of but yes my dad has been very mindful of it.
  - May 15, 2011 at 3:29 am
    
    Quote
    deirgey
    Participant
    
    Thanks for the info Lisa. We weren't aware of the "7" bowel movements a day so that is good to keep track of but yes my dad has been very mindful of it.
  - May 13, 2011 at 8:05 pm
    
    Quote
    Lisa13
    Participant
    
    I spoke to the ipi trial Dr regarding all the symptoms associated wiith this drug and loose stools was one of them. Infact, they said to notify them of any symptoms as it can become life threatening if you're up to 7 bowel movements a day. I'm sure most people know this, but I wanted to make sure your Dr is aware of your symptoms so that they can keep them in check. I'm so happy this treatment is working for so many people. Due to suspicious activity in my lungs, I was denied access to to the trial.
    
    Best of luck to everyone and thank God for the smarty pants that are making these wonderful drugs for us 🙂
    
    Lisa
  - May 15, 2011 at 3:24 am
    
    Quote
    deirgey
    Participant
    
    Thanks Val. Yeah we thought for sure the loose stools were from the Ipi but the doctor said it was too soon for that to happen??? Anyway, my dad got a colonoscopy and at first glance it looked clear but they wouldn't give him his second infusion of Ipi until all the results got back (probably Tuesday next week). He was disappointed but we are hopeful everything will come back clear and he can proceed with the treatment. Thanks for the tips! I hope you will be able to continue your treatments as well and SOON! Keep us updated.
    
    Deidre
  - May 15, 2011 at 3:24 am
    
    Quote
    deirgey
    Participant
    
    Thanks Val. Yeah we thought for sure the loose stools were from the Ipi but the doctor said it was too soon for that to happen??? Anyway, my dad got a colonoscopy and at first glance it looked clear but they wouldn't give him his second infusion of Ipi until all the results got back (probably Tuesday next week). He was disappointed but we are hopeful everything will come back clear and he can proceed with the treatment. Thanks for the tips! I hope you will be able to continue your treatments as well and SOON! Keep us updated.
    
    Deidre
- - May 14, 2011 at 12:39 am
  - Quote
  Jim M.
  Participant
  From one Ipi responder to another: That is such awesome news! I pray you have a long life of NED!!
  
  God Bless,
  
  Jim M.
- - May 14, 2011 at 12:39 am
  - Quote
  Jim M.
  Participant
  From one Ipi responder to another: That is such awesome news! I pray you have a long life of NED!!
  
  God Bless,
  
  Jim M.
- - May 15, 2011 at 2:11 pm
  - Quote
  rainsberger.tony
  Participant
  Wonderful news! Thanks for sharing it.
- - May 15, 2011 at 2:11 pm
  - Quote
  rainsberger.tony
  Participant
  Wonderful news! Thanks for sharing it.