PET Scans Tomorrow / ipi trial

This topic has 40 replies, 14 voices, and was last updated 13 years, 6 months ago by jim Breitfeller.

Post

- September 22, 2010 at 7:06 pm
- Quote
Bruce in NH
Participant
Hi Friends,

Hi Friends,

I haven't posted for a while but have kept up with those of you like me who are participating in the compassionate use ipi trial program (10 weeks of 4 ipi infusions every 3 weeks). I've completed the first 10 weeks and my CT scans showed slight reduction in tumor size for two tumors in my left lung and center chest. I have been trying to get rid of these sites since diagnosed Stage IV back in December, 2008. You can get more details by clicking on my profile. In any case, I hope my PET scans tomorrow show some reduction in activity level within the nodes.

My options going forward would be a repeat of the ipi 10 week trial; surgery to remove the nodes (very high risk due to placement in the chest) and BRAF testing/trial. Hoping for the best, and my thoughts and prayers continue for all who fight this disease, especially for those caregivers who recently posted after losing their loved ones. Collectively we will continue the fight for you and for our children and grandchildren.

Hope and peace to all,

Bruce in NH

Viewing 23 reply threads

Replies

- - September 22, 2010 at 7:44 pm
  - Quote
  patobs01
  Participant
  Bruce,
  
  I will keep you in my prayers that your scans bring good news.
  
  Take care,
  
  Pat O. – IIIA
- - September 22, 2010 at 7:44 pm
  - Quote
  patobs01
  Participant
  Bruce,
  
  I will keep you in my prayers that your scans bring good news.
  
  Take care,
  
  Pat O. – IIIA
- - September 22, 2010 at 10:59 pm
  - Quote
  killmel
  Participant
  Hi Bruce,
  
  I am thinking about IPI.I am stage 3. Please tell me what side effects did you have & how did you resolve them. What was the worst part of doing IPI. Thanks for your reply to my questions. I will hope for good results for you.
  - September 23, 2010 at 11:16 am
    
    Quote
    Bruce in NH
    Participant
    
    The ipi side effects I experienced were minimal compared to IL-2 and other bio/chemo treatments I have experienced. After the first two or three infusions I had several bouts of colitus that were calmed with Imodium. I also had a slight rash on my face and upper body that eventually disappeared but really that was about it. I would recommend ipi to anyone who has the opportunity to try it. Keeping my fingers crossed today. All the best to you on your decision.
  - September 23, 2010 at 11:16 am
    
    Quote
    Bruce in NH
    Participant
    
    The ipi side effects I experienced were minimal compared to IL-2 and other bio/chemo treatments I have experienced. After the first two or three infusions I had several bouts of colitus that were calmed with Imodium. I also had a slight rash on my face and upper body that eventually disappeared but really that was about it. I would recommend ipi to anyone who has the opportunity to try it. Keeping my fingers crossed today. All the best to you on your decision.
- - September 22, 2010 at 10:59 pm
  - Quote
  killmel
  Participant
  Hi Bruce,
  
  I am thinking about IPI.I am stage 3. Please tell me what side effects did you have & how did you resolve them. What was the worst part of doing IPI. Thanks for your reply to my questions. I will hope for good results for you.
- - September 23, 2010 at 12:09 am
  - Quote
  Rocco
  Participant
  Bruce,
  
  Glad to hear there was some shrinkage. How soon do you have to make your choice out of the 3 options you noted? I'll keep you in my prayers.
  
  Rocco – Stage IV – Nashua
- - September 23, 2010 at 12:09 am
  - Quote
  Rocco
  Participant
  Bruce,
  
  Glad to hear there was some shrinkage. How soon do you have to make your choice out of the 3 options you noted? I'll keep you in my prayers.
  
  Rocco – Stage IV – Nashua
  - September 23, 2010 at 11:23 am
    
    Quote
    Bruce in NH
    Participant
    
    Hi Rocco, I don't think there is any hurry on a decision. I'll speak with my oncologist on Friday for results of the PET scans. I consider myself fortunate to have these oprions after almost two years in Stage IV. I'll keep you posted. Best of luck with you as well as I read your posts too. Bruce
  - September 23, 2010 at 11:23 am
    
    Quote
    Bruce in NH
    Participant
    
    Hi Rocco, I don't think there is any hurry on a decision. I'll speak with my oncologist on Friday for results of the PET scans. I consider myself fortunate to have these oprions after almost two years in Stage IV. I'll keep you posted. Best of luck with you as well as I read your posts too. Bruce
- - September 23, 2010 at 1:59 am
  - Quote
  King
  Participant
  Bruce,
  
  I'll keep you in my thoughts and prayers. Please let us know how you do. It's always good to have options.
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - September 23, 2010 at 1:59 am
  - Quote
  King
  Participant
  Bruce,
  
  I'll keep you in my thoughts and prayers. Please let us know how you do. It's always good to have options.
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - September 23, 2010 at 2:59 am
  - Quote
  yensidw
  Participant
  Will keep you in my prayers.
  
  God bless,
  
  Janis
- - September 23, 2010 at 2:59 am
  - Quote
  yensidw
  Participant
  Will keep you in my prayers.
  
  God bless,
  
  Janis
- - September 23, 2010 at 12:24 pm
  - Quote
  jag
  Participant
  Will keep you in my prayers Bruce. Here is to ipi doing it's job!!!!!
- - September 23, 2010 at 12:24 pm
  - Quote
  jag
  Participant
  Will keep you in my prayers Bruce. Here is to ipi doing it's job!!!!!
- - September 23, 2010 at 12:38 pm
  - Quote
  Lori C
  Participant
  I am glad there was some reduction and will be praying for your future treatment success.
- - September 23, 2010 at 12:38 pm
  - Quote
  Lori C
  Participant
  I am glad there was some reduction and will be praying for your future treatment success.
- - September 23, 2010 at 12:51 pm
  - Quote
  bill58
  Participant
  When you are on Compassionate use Ipi, how long do the treatments last? only 10 Weeks? How many times can you extend that?
  
  Bill
  - September 24, 2010 at 12:46 am
    
    Quote
    Bruce in NH
    Participant
    
    Hi Bill, the 10 week period consists of 4 infusions of ipi, each infusion lasting about 90 minutes (administered in weeks 1, 4, 7 and 10). Following this, I had a CT scan 2 weeks after the last infusion. My tumors showed no change in size and no additional active sites, so my oncologist ordered a PET scan to assess the level of activity within the two active tumors. I completed the PET scans today and should have the results on Friday or early next week. Bristol/Meyers/Squib is the drug manufacturer, and they will allow a second 10 week infusion program if I have shown progress in tumor reduction and/or activity. I assume this would be a discussion between BMS and my oncologist as to whether I continue with ipi or another treatment program. So now just waiting for results – always the hardest part in the scan process. Good luck and best wishes on starting your B-RAF trial. Bruce
  - September 26, 2010 at 10:14 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Bruce,
    
    We have corresponded before…we share the same melanoma oncologist and oncology surgeon. I am hoping and praying that IPI works for you, or something else, and soon! I do feel in competant hands with our providers and feel I can talk to them about anything.
    
    Keep in touch,
    
    Vermont _Donna, stage 3a
  - September 26, 2010 at 10:14 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Bruce,
    
    We have corresponded before…we share the same melanoma oncologist and oncology surgeon. I am hoping and praying that IPI works for you, or something else, and soon! I do feel in competant hands with our providers and feel I can talk to them about anything.
    
    Keep in touch,
    
    Vermont _Donna, stage 3a
  - September 24, 2010 at 12:46 am
    
    Quote
    Bruce in NH
    Participant
    
    Hi Bill, the 10 week period consists of 4 infusions of ipi, each infusion lasting about 90 minutes (administered in weeks 1, 4, 7 and 10). Following this, I had a CT scan 2 weeks after the last infusion. My tumors showed no change in size and no additional active sites, so my oncologist ordered a PET scan to assess the level of activity within the two active tumors. I completed the PET scans today and should have the results on Friday or early next week. Bristol/Meyers/Squib is the drug manufacturer, and they will allow a second 10 week infusion program if I have shown progress in tumor reduction and/or activity. I assume this would be a discussion between BMS and my oncologist as to whether I continue with ipi or another treatment program. So now just waiting for results – always the hardest part in the scan process. Good luck and best wishes on starting your B-RAF trial. Bruce
- - September 23, 2010 at 12:51 pm
  - Quote
  bill58
  Participant
  When you are on Compassionate use Ipi, how long do the treatments last? only 10 Weeks? How many times can you extend that?
  
  Bill
- - September 30, 2010 at 6:00 pm
  - Quote
  Bruce in NH
  Participant
  Hello again,
  
  I promised you all an update after my CT and PET scans following the ipi trial completion, phase one. Thanks to those of you who responded to my original post.
  
  Both the CT and PET scans show the two active tumors in my chest and left lung remain unchanged or stable. There are no new sites showing up which is wonderful. My concern is that ipi does not seem to impact these two pesky tumors that have been hanging around for almost two years now. I found out this week I test negative fior the BRAF gene, so that option does not exist for me. Going forward my game plan is to repeat the ipi trial in hopes the second round will be the charm. In the meantime I'll seriously consider surgery if the second ipi trial fails.
  
  I just responded to a post by Diana where Steve was seeing success in tumor reduction taking 5 biochemo drugs following one round of ipi. I will ask my oncologist if this is also an option for me (although I did not respond to these 5 drugs last year). So many questions, so few answers. But thanks to everyone who posts their status on this board. It helps all of us make more intelligent choices for treatment.
  
  Best wishes to all and continue the fight,
  
  Bruce in NH
  - September 30, 2010 at 6:58 pm
    
    Quote
    Jocelyn
    Participant
    
    i am sorry the chest tumors didn't reduce, but glad to hear that you are stable with no new mets. It's still early, for this particular trial drug, so I hope you soon see some reduction.
    
    I was wondering what the conditions are for a repeat of the trial. The trial description was vague about this. One patient whose story i read thought that the trial coud be repeated for patients who showed initial response to IPI, and then later progressed. My brother did respond to ipi, and his doctors told him he would only repeat it if subsequent scans showed progression. His response was not complete, so anything could happen.
    
    Still, I don't really know if the decision they made in my brother's case is the rule. Perhaps whether or not to complete the trial is actually made on a case by case basis? That would make sense. It bothers me that there is no maintenance phase on this trial.
    
    Best of luck to you. I hope you start seeing those mets fade away.
  - October 2, 2010 at 12:24 pm
    
    Quote
    Bruce in NH
    Participant
    
    Hi Jocelyn,
    
    My consent form says that the decision to enter the second phase of ipi infusions is between my doctor and the drug manufacturer. That sounds like a case to case basis to me. I hope to hear more next week on my case. My doctor stated that if I restart ipi, it would begin Thanksgiving week with a PET scan the week before to set a baseline. That's all I know at this time. I'll post again when I have more details. I hope your brother is doing well.
    
    Best regards,
    
    Bruce in NH
  - October 2, 2010 at 12:24 pm
    
    Quote
    Bruce in NH
    Participant
    
    Hi Jocelyn,
    
    My consent form says that the decision to enter the second phase of ipi infusions is between my doctor and the drug manufacturer. That sounds like a case to case basis to me. I hope to hear more next week on my case. My doctor stated that if I restart ipi, it would begin Thanksgiving week with a PET scan the week before to set a baseline. That's all I know at this time. I'll post again when I have more details. I hope your brother is doing well.
    
    Best regards,
    
    Bruce in NH
  - September 30, 2010 at 6:58 pm
    
    Quote
    Jocelyn
    Participant
    
    i am sorry the chest tumors didn't reduce, but glad to hear that you are stable with no new mets. It's still early, for this particular trial drug, so I hope you soon see some reduction.
    
    I was wondering what the conditions are for a repeat of the trial. The trial description was vague about this. One patient whose story i read thought that the trial coud be repeated for patients who showed initial response to IPI, and then later progressed. My brother did respond to ipi, and his doctors told him he would only repeat it if subsequent scans showed progression. His response was not complete, so anything could happen.
    
    Still, I don't really know if the decision they made in my brother's case is the rule. Perhaps whether or not to complete the trial is actually made on a case by case basis? That would make sense. It bothers me that there is no maintenance phase on this trial.
    
    Best of luck to you. I hope you start seeing those mets fade away.
  - September 30, 2010 at 8:40 pm
    
    Quote
    lhaley
    Participant
    
    Bruce,
    
    I do realize that you wanted the 2 active tumors to shrink, but no growth and no new sites is really great news!! I hope they let you continue!!
    
    Linda
  - September 30, 2010 at 8:40 pm
    
    Quote
    lhaley
    Participant
    
    Bruce,
    
    I do realize that you wanted the 2 active tumors to shrink, but no growth and no new sites is really great news!! I hope they let you continue!!
    
    Linda
  - October 2, 2010 at 10:49 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Bruce ,you may want to try IL-2 or BioChemo to start the cytokine storm that jump starts your immune system
  - October 2, 2010 at 10:49 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Bruce ,you may want to try IL-2 or BioChemo to start the cytokine storm that jump starts your immune system
- - September 30, 2010 at 6:00 pm
  - Quote
  Bruce in NH
  Participant
  Hello again,
  
  I promised you all an update after my CT and PET scans following the ipi trial completion, phase one. Thanks to those of you who responded to my original post.
  
  Both the CT and PET scans show the two active tumors in my chest and left lung remain unchanged or stable. There are no new sites showing up which is wonderful. My concern is that ipi does not seem to impact these two pesky tumors that have been hanging around for almost two years now. I found out this week I test negative fior the BRAF gene, so that option does not exist for me. Going forward my game plan is to repeat the ipi trial in hopes the second round will be the charm. In the meantime I'll seriously consider surgery if the second ipi trial fails.
  
  I just responded to a post by Diana where Steve was seeing success in tumor reduction taking 5 biochemo drugs following one round of ipi. I will ask my oncologist if this is also an option for me (although I did not respond to these 5 drugs last year). So many questions, so few answers. But thanks to everyone who posts their status on this board. It helps all of us make more intelligent choices for treatment.
  
  Best wishes to all and continue the fight,
  
  Bruce in NH
- - September 30, 2010 at 7:17 pm
  - Quote
  molly
  Participant
  Bruce,
  
  Thinking of you and wishing you great scans tomorrow!
  
  molly
- - September 30, 2010 at 7:17 pm
  - Quote
  molly
  Participant
  Bruce,
  
  Thinking of you and wishing you great scans tomorrow!
  
  molly
- - September 30, 2010 at 11:54 pm
  - Quote
  Rocco
  Participant
  Hey Bruce,
  
  Glad to hear nothing new and nothing grew – things are stable….stable is good. Repeating ipi sounds like a good approach. Hang in there!
  
  Rocco in NH
- - September 30, 2010 at 11:54 pm
  - Quote
  Rocco
  Participant
  Hey Bruce,
  
  Glad to hear nothing new and nothing grew – things are stable….stable is good. Repeating ipi sounds like a good approach. Hang in there!
  
  Rocco in NH
- - October 2, 2010 at 4:25 pm
  - Quote
  bill58
  Participant
  Bruce,
  
  Since you are negative for BRAF, did they test you for the CKIT/MEK ( I think that is what it is) mutation. My understanding from the webinar the other night was you cannot have both mutations and there are targeted therapies for people with both mutations.
  
  Were you tested for the HLA-A2 in your blood? There are other trials out there for that one.
  
  There are probably other tests out there, but these are the ones I have had and know about.
  
  Good luck on your journey.
  
  BIll
- - October 2, 2010 at 4:25 pm
  - Quote
  bill58
  Participant
  Bruce,
  
  Since you are negative for BRAF, did they test you for the CKIT/MEK ( I think that is what it is) mutation. My understanding from the webinar the other night was you cannot have both mutations and there are targeted therapies for people with both mutations.
  
  Were you tested for the HLA-A2 in your blood? There are other trials out there for that one.
  
  There are probably other tests out there, but these are the ones I have had and know about.
  
  Good luck on your journey.
  
  BIll