Ipi working after first dose

This topic has 30 replies, 7 voices, and was last updated 10 years, 6 months ago by RJoeyB.

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- August 16, 2014 at 10:27 am
- Quote
angtom
Participant
I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

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- - August 16, 2014 at 1:31 pm
  - Quote
  WITom
  Participant
  I am a stage 4 responder to iPi including lung/liver lesions – in my case my initial CT scan – I believe after only my 1st infusion – read "significant interval improvement " with most of my many lesions. I am now NED nearly 2 yrs.
- - August 16, 2014 at 1:31 pm
  - Quote
  WITom
  Participant
  I am a stage 4 responder to iPi including lung/liver lesions – in my case my initial CT scan – I believe after only my 1st infusion – read "significant interval improvement " with most of my many lesions. I am now NED nearly 2 yrs.
- - August 16, 2014 at 1:31 pm
  - Quote
  WITom
  Participant
  I am a stage 4 responder to iPi including lung/liver lesions – in my case my initial CT scan – I believe after only my 1st infusion – read "significant interval improvement " with most of my many lesions. I am now NED nearly 2 yrs.
  - August 16, 2014 at 2:48 pm
    
    Quote
    angtom
    Participant
    
    That is wonderful news and we can all use some good news once in a while. I do know everyone is different but just so happy at any glimmer of hope and congrats to you keep on fighting best wishes.
  - August 16, 2014 at 2:48 pm
    
    Quote
    angtom
    Participant
    
    That is wonderful news and we can all use some good news once in a while. I do know everyone is different but just so happy at any glimmer of hope and congrats to you keep on fighting best wishes.
  - August 16, 2014 at 2:48 pm
    
    Quote
    angtom
    Participant
    
    That is wonderful news and we can all use some good news once in a while. I do know everyone is different but just so happy at any glimmer of hope and congrats to you keep on fighting best wishes.
  - November 6, 2014 at 5:25 pm
    
    Quote
    MelanomaAnkara
    Participant
    
    Hi, how was their size? Could you please give more information. My moter will start ipi tomorrow and I want to hear positive stories. Thanks in advance.
  - November 6, 2014 at 5:25 pm
    
    Quote
    MelanomaAnkara
    Participant
    
    Hi, how was their size? Could you please give more information. My moter will start ipi tomorrow and I want to hear positive stories. Thanks in advance.
  - November 6, 2014 at 5:25 pm
    
    Quote
    MelanomaAnkara
    Participant
    
    Hi, how was their size? Could you please give more information. My moter will start ipi tomorrow and I want to hear positive stories. Thanks in advance.
- - August 16, 2014 at 1:32 pm
  - Quote
  ecc26
  Participant
  You should be THRILLED by this result, I'm rather jealous. I did Ipi last summer and failed miserably. by the end of the 4 doses and follow up scans I was in real trouble with my tumor burden. I am BRAF+ so they put me on the BRAF/MEK combo in December. Those began to fail in the spring (late April/early May). I've been enrolled in the Merk PD-1 EAP since June and just had my 4th dose last week. I'll have scans on Sept 2 to see where I am, but my response pattern with PD-1 sounds like your husbands response to Ipi.
  
  Congratulations! enjoy the good news and celebrate- you deserve some good, happy times
  
  Best of luck as you continue
- - August 16, 2014 at 1:32 pm
  - Quote
  ecc26
  Participant
  You should be THRILLED by this result, I'm rather jealous. I did Ipi last summer and failed miserably. by the end of the 4 doses and follow up scans I was in real trouble with my tumor burden. I am BRAF+ so they put me on the BRAF/MEK combo in December. Those began to fail in the spring (late April/early May). I've been enrolled in the Merk PD-1 EAP since June and just had my 4th dose last week. I'll have scans on Sept 2 to see where I am, but my response pattern with PD-1 sounds like your husbands response to Ipi.
  
  Congratulations! enjoy the good news and celebrate- you deserve some good, happy times
  
  Best of luck as you continue
- - August 16, 2014 at 1:32 pm
  - Quote
  ecc26
  Participant
  You should be THRILLED by this result, I'm rather jealous. I did Ipi last summer and failed miserably. by the end of the 4 doses and follow up scans I was in real trouble with my tumor burden. I am BRAF+ so they put me on the BRAF/MEK combo in December. Those began to fail in the spring (late April/early May). I've been enrolled in the Merk PD-1 EAP since June and just had my 4th dose last week. I'll have scans on Sept 2 to see where I am, but my response pattern with PD-1 sounds like your husbands response to Ipi.
  
  Congratulations! enjoy the good news and celebrate- you deserve some good, happy times
  
  Best of luck as you continue
  - August 16, 2014 at 2:50 pm
    
    Quote
    angtom
    Participant
    
    Thank you so much and I am sorry about your results with ipi but they have so many more trials now I read pd-1 was awesome I have been looking as back up plans. Good luck on your scans would love to hear how you do.
  - August 16, 2014 at 2:50 pm
    
    Quote
    angtom
    Participant
    
    Thank you so much and I am sorry about your results with ipi but they have so many more trials now I read pd-1 was awesome I have been looking as back up plans. Good luck on your scans would love to hear how you do.
  - August 16, 2014 at 2:50 pm
    
    Quote
    angtom
    Participant
    
    Thank you so much and I am sorry about your results with ipi but they have so many more trials now I read pd-1 was awesome I have been looking as back up plans. Good luck on your scans would love to hear how you do.
  - November 13, 2014 at 8:15 pm
    
    Quote
    sis1971
    Participant
    
    Has anyone heard of melanoma in the heart?My husbands heart is full of tumors just had 2nd dose of keytruda but really the doctors thought he wouldnt have made it this far .Tumors are all over more than 140.any help would be much appreciated .Hes getting so weak now he hasnt ate in a week tomorrow im getting really worried dont know what to watch for hes also really confused our kids are 9&12 i think hes suffering how do we know when enough is enough I love him so much 16 years together i dont know what to do to help him
  - November 13, 2014 at 8:15 pm
    
    Quote
    sis1971
    Participant
    
    Has anyone heard of melanoma in the heart?My husbands heart is full of tumors just had 2nd dose of keytruda but really the doctors thought he wouldnt have made it this far .Tumors are all over more than 140.any help would be much appreciated .Hes getting so weak now he hasnt ate in a week tomorrow im getting really worried dont know what to watch for hes also really confused our kids are 9&12 i think hes suffering how do we know when enough is enough I love him so much 16 years together i dont know what to do to help him
  - November 13, 2014 at 8:15 pm
    
    Quote
    sis1971
    Participant
    
    Has anyone heard of melanoma in the heart?My husbands heart is full of tumors just had 2nd dose of keytruda but really the doctors thought he wouldnt have made it this far .Tumors are all over more than 140.any help would be much appreciated .Hes getting so weak now he hasnt ate in a week tomorrow im getting really worried dont know what to watch for hes also really confused our kids are 9&12 i think hes suffering how do we know when enough is enough I love him so much 16 years together i dont know what to do to help him
  - November 13, 2014 at 8:32 pm
    
    Quote
    sis1971
    Participant
    
    Has anyone heard of melanoma in the heart?My husbands heart is full of tumors just had 2nd dose of keytruda but really the doctors thought he wouldnt have made it this far .Tumors are all over more than 140.any help would be much appreciated .Hes getting so weak now he hasnt ate in a week tomorrow im getting really worried dont know what to watch for hes also really confused our kids are 9&12 i think hes suffering how do we know when enough is enough I love him so much 16 years together i dont know what to do to help him.
    
    He was first diagnosed in january of 2012 a mole on his back said they got it all and was clear (we thought)this march went in for a pet scan to find out it was back never left just went into hiding !!!we were then told he had six months to a year to live.
    
    We got in to see a melanoma specialist with only three small tumors one only a 3cm the others a 1.she started him on yervoy and all the waiting to find out yervoy did nothing for us .Now after two hospital visits the last being icu we were sent home with hospice then had to stop that to have second dose of keytruda now everyday he keeps getting worse eight more tumors have appeared in the last week these are on his neck in his head i dont know if were doing the right thing we said if its Gods will he will let us keep him longer if not he will take him home if anyone has heard of this any help would be so appreciated
  - November 15, 2014 at 7:56 am
    
    Quote
    RJoeyB
    Participant
    
    sis1971, I'm sorry to,hear that you, your husband, and children are facing the brutality of this disease. My understanding is that melanoma or any cancer in the heart muscle is rare but not impossible, if that is what you're asking. From a quick Google search, it looks like your doctor is at university-related cancer hospital and does have some amount of experience with melanoma at UAMS, but have you sought out the opinion of any other melanoma specialists in Texas, Missouri, or Tennessee? I know they are a distance, but seem to be the next closest areas to you with well-known practices for melanoma, and others here can make recommendations on specifics, like Vanderbilt, Sarah Cannon, or MD Anderson. Has your current doctor discussed the BRAF mutation? I would hope that if they have some melanoma experience, they would, but so you know, it's a gene mutation in about 50% of melanoma patients. If it's present, it makes your husband eligible for a class of drugs called BRAF and MEK inhibitors that can quickly act to reduce tumors and give drugs such as Yervoy and Keytruda more time to work. The larger hospitals I mentioned may have trials for other drugs, too. Keytruda is the gold standard right now, but unfortunately it can sometimes take a little while to start working, longer than 2 doses, and there's no guarantee that it will work at all. Finally, you mention that he seems confused at times. Has he had a brain scan to determine if there's been any spread to the brain? It is scary to consider, but can be treatable, too.
    
    Wishing courage, strength, and comfort for your family.
    
    Best, Joe
  - November 15, 2014 at 7:56 am
    
    Quote
    RJoeyB
    Participant
    
    sis1971, I'm sorry to,hear that you, your husband, and children are facing the brutality of this disease. My understanding is that melanoma or any cancer in the heart muscle is rare but not impossible, if that is what you're asking. From a quick Google search, it looks like your doctor is at university-related cancer hospital and does have some amount of experience with melanoma at UAMS, but have you sought out the opinion of any other melanoma specialists in Texas, Missouri, or Tennessee? I know they are a distance, but seem to be the next closest areas to you with well-known practices for melanoma, and others here can make recommendations on specifics, like Vanderbilt, Sarah Cannon, or MD Anderson. Has your current doctor discussed the BRAF mutation? I would hope that if they have some melanoma experience, they would, but so you know, it's a gene mutation in about 50% of melanoma patients. If it's present, it makes your husband eligible for a class of drugs called BRAF and MEK inhibitors that can quickly act to reduce tumors and give drugs such as Yervoy and Keytruda more time to work. The larger hospitals I mentioned may have trials for other drugs, too. Keytruda is the gold standard right now, but unfortunately it can sometimes take a little while to start working, longer than 2 doses, and there's no guarantee that it will work at all. Finally, you mention that he seems confused at times. Has he had a brain scan to determine if there's been any spread to the brain? It is scary to consider, but can be treatable, too.
    
    Wishing courage, strength, and comfort for your family.
    
    Best, Joe
  - November 15, 2014 at 7:56 am
    
    Quote
    RJoeyB
    Participant
    
    sis1971, I'm sorry to,hear that you, your husband, and children are facing the brutality of this disease. My understanding is that melanoma or any cancer in the heart muscle is rare but not impossible, if that is what you're asking. From a quick Google search, it looks like your doctor is at university-related cancer hospital and does have some amount of experience with melanoma at UAMS, but have you sought out the opinion of any other melanoma specialists in Texas, Missouri, or Tennessee? I know they are a distance, but seem to be the next closest areas to you with well-known practices for melanoma, and others here can make recommendations on specifics, like Vanderbilt, Sarah Cannon, or MD Anderson. Has your current doctor discussed the BRAF mutation? I would hope that if they have some melanoma experience, they would, but so you know, it's a gene mutation in about 50% of melanoma patients. If it's present, it makes your husband eligible for a class of drugs called BRAF and MEK inhibitors that can quickly act to reduce tumors and give drugs such as Yervoy and Keytruda more time to work. The larger hospitals I mentioned may have trials for other drugs, too. Keytruda is the gold standard right now, but unfortunately it can sometimes take a little while to start working, longer than 2 doses, and there's no guarantee that it will work at all. Finally, you mention that he seems confused at times. Has he had a brain scan to determine if there's been any spread to the brain? It is scary to consider, but can be treatable, too.
    
    Wishing courage, strength, and comfort for your family.
    
    Best, Joe
  - November 13, 2014 at 8:32 pm
    
    Quote
    sis1971
    Participant
    
    Has anyone heard of melanoma in the heart?My husbands heart is full of tumors just had 2nd dose of keytruda but really the doctors thought he wouldnt have made it this far .Tumors are all over more than 140.any help would be much appreciated .Hes getting so weak now he hasnt ate in a week tomorrow im getting really worried dont know what to watch for hes also really confused our kids are 9&12 i think hes suffering how do we know when enough is enough I love him so much 16 years together i dont know what to do to help him.
    
    He was first diagnosed in january of 2012 a mole on his back said they got it all and was clear (we thought)this march went in for a pet scan to find out it was back never left just went into hiding !!!we were then told he had six months to a year to live.
    
    We got in to see a melanoma specialist with only three small tumors one only a 3cm the others a 1.she started him on yervoy and all the waiting to find out yervoy did nothing for us .Now after two hospital visits the last being icu we were sent home with hospice then had to stop that to have second dose of keytruda now everyday he keeps getting worse eight more tumors have appeared in the last week these are on his neck in his head i dont know if were doing the right thing we said if its Gods will he will let us keep him longer if not he will take him home if anyone has heard of this any help would be so appreciated
  - November 13, 2014 at 8:32 pm
    
    Quote
    sis1971
    Participant
    
    Has anyone heard of melanoma in the heart?My husbands heart is full of tumors just had 2nd dose of keytruda but really the doctors thought he wouldnt have made it this far .Tumors are all over more than 140.any help would be much appreciated .Hes getting so weak now he hasnt ate in a week tomorrow im getting really worried dont know what to watch for hes also really confused our kids are 9&12 i think hes suffering how do we know when enough is enough I love him so much 16 years together i dont know what to do to help him.
    
    He was first diagnosed in january of 2012 a mole on his back said they got it all and was clear (we thought)this march went in for a pet scan to find out it was back never left just went into hiding !!!we were then told he had six months to a year to live.
    
    We got in to see a melanoma specialist with only three small tumors one only a 3cm the others a 1.she started him on yervoy and all the waiting to find out yervoy did nothing for us .Now after two hospital visits the last being icu we were sent home with hospice then had to stop that to have second dose of keytruda now everyday he keeps getting worse eight more tumors have appeared in the last week these are on his neck in his head i dont know if were doing the right thing we said if its Gods will he will let us keep him longer if not he will take him home if anyone has heard of this any help would be so appreciated
- - August 16, 2014 at 7:46 pm
  - Quote
  Patina
  Participant
  Hi,
  
  My Mom has had a similar experience with ipi/Yervoy. She had tumors on her scalp and neck that were very visible. Her tumors started to feel strange (pins & needles) about 4 days after her first infusion and they got very firm before the 2nd infusion. Within 2 weeks the tumors started to shrink and by the time she was suppose to have her 3rd infusion you could not find the large tumor that had been on her neck and many on her head were much much smaller. (The large lump on her neck was the size of the first joint of her big thumb before.)
  
  Her first treatment was on December 12, 2013 and today the tumors on her scalp can't be found. The blue "stains" where the tumors were (and very visible) are pretty much gone too. I would estimate that the volume of tumors on her head was about 1/6 of a cup (maybe more) and there are just 3 dots of blue on her head now. The lump on her neck comes and goes. Still much smaller, but they they think it is just inflammation now.
  
  She did get colitis, which is something to watch for. Ask your doctor about modium and as strange as it sounds if he gets colitis and its in the lower bowel ask about a steroid enema. My Mom had colitis twice and was only able to have 3 infusions. She went through month + of problems, including 3 hospital stays, and the enema worked 24 to 48 hours.
  
  She was diagnosed at stage IV and today her doctors say she is headed toward a long term response. Everyone is different, but it looks like it is having a positive effect with your husband.
  
  Good luck.
  - August 19, 2014 at 5:49 am
    
    Quote
    angtom
    Participant
    
    So happy to hear about your mom I am always happy to hear good news from people it gives us hope. I have done research on the side effects to come and I have learned much from patient # 1 TJ who has gone through so much, I did not know about steroid enema thanks so much for that info will write that down to keep handy. I have already bought a cookbook for colitis just in case. Much luck to your mom and to you and again thank you so much for the encouragment and information.
    
    good luck
  - August 19, 2014 at 5:49 am
    
    Quote
    angtom
    Participant
    
    So happy to hear about your mom I am always happy to hear good news from people it gives us hope. I have done research on the side effects to come and I have learned much from patient # 1 TJ who has gone through so much, I did not know about steroid enema thanks so much for that info will write that down to keep handy. I have already bought a cookbook for colitis just in case. Much luck to your mom and to you and again thank you so much for the encouragment and information.
    
    good luck
  - August 19, 2014 at 5:49 am
    
    Quote
    angtom
    Participant
    
    So happy to hear about your mom I am always happy to hear good news from people it gives us hope. I have done research on the side effects to come and I have learned much from patient # 1 TJ who has gone through so much, I did not know about steroid enema thanks so much for that info will write that down to keep handy. I have already bought a cookbook for colitis just in case. Much luck to your mom and to you and again thank you so much for the encouragment and information.
    
    good luck
- - August 16, 2014 at 7:46 pm
  - Quote
  Patina
  Participant
  Hi,
  
  My Mom has had a similar experience with ipi/Yervoy. She had tumors on her scalp and neck that were very visible. Her tumors started to feel strange (pins & needles) about 4 days after her first infusion and they got very firm before the 2nd infusion. Within 2 weeks the tumors started to shrink and by the time she was suppose to have her 3rd infusion you could not find the large tumor that had been on her neck and many on her head were much much smaller. (The large lump on her neck was the size of the first joint of her big thumb before.)
  
  Her first treatment was on December 12, 2013 and today the tumors on her scalp can't be found. The blue "stains" where the tumors were (and very visible) are pretty much gone too. I would estimate that the volume of tumors on her head was about 1/6 of a cup (maybe more) and there are just 3 dots of blue on her head now. The lump on her neck comes and goes. Still much smaller, but they they think it is just inflammation now.
  
  She did get colitis, which is something to watch for. Ask your doctor about modium and as strange as it sounds if he gets colitis and its in the lower bowel ask about a steroid enema. My Mom had colitis twice and was only able to have 3 infusions. She went through month + of problems, including 3 hospital stays, and the enema worked 24 to 48 hours.
  
  She was diagnosed at stage IV and today her doctors say she is headed toward a long term response. Everyone is different, but it looks like it is having a positive effect with your husband.
  
  Good luck.
- - August 16, 2014 at 7:46 pm
  - Quote
  Patina
  Participant
  Hi,
  
  My Mom has had a similar experience with ipi/Yervoy. She had tumors on her scalp and neck that were very visible. Her tumors started to feel strange (pins & needles) about 4 days after her first infusion and they got very firm before the 2nd infusion. Within 2 weeks the tumors started to shrink and by the time she was suppose to have her 3rd infusion you could not find the large tumor that had been on her neck and many on her head were much much smaller. (The large lump on her neck was the size of the first joint of her big thumb before.)
  
  Her first treatment was on December 12, 2013 and today the tumors on her scalp can't be found. The blue "stains" where the tumors were (and very visible) are pretty much gone too. I would estimate that the volume of tumors on her head was about 1/6 of a cup (maybe more) and there are just 3 dots of blue on her head now. The lump on her neck comes and goes. Still much smaller, but they they think it is just inflammation now.
  
  She did get colitis, which is something to watch for. Ask your doctor about modium and as strange as it sounds if he gets colitis and its in the lower bowel ask about a steroid enema. My Mom had colitis twice and was only able to have 3 infusions. She went through month + of problems, including 3 hospital stays, and the enema worked 24 to 48 hours.
  
  She was diagnosed at stage IV and today her doctors say she is headed toward a long term response. Everyone is different, but it looks like it is having a positive effect with your husband.
  
  Good luck.