› Forums › General Melanoma Community › Ipi Bad News for Me may be bad news for you…..
- This topic has 30 replies, 5 voices, and was last updated 10 years, 1 month ago by
Dave from Ormond.
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- February 24, 2014 at 2:25 pm
I have had conversations with multiple people who have had the Pituatary Gland swelling as a side effect on Yervoy/Ipi. I too had the swelling and we resumed dosage after the swelling was brought back down. Some of you had said that your doctor did not resume dosage because the swelling was an indicator that the Yervoy was working.
Here's my bad news. I finished my 4th dose on November 20, 2013. CT Scan on December 12, 2013 showed zero new growth. CT Scan on February 12, 2014 showed 11 new growths. Multiple spots in both lungs, liver, spine, vertebrae, stomach and two bone spots.
While they are saying that there is still a chance that the Yervoy will stop the growth and may even kill the cancer, we are going to Moffit in Tampa and start another treatment or go BRAF/MEK locally. Waiting for them to call me to set up the appointment.
Don't want to be the bearer of bad news or the squasher of hope, but I thought it was important that I share my experience. I truly hope that yours turns out better.
Good luck to all of you. I've got to get my boxing gloves back on and get ready for the next round!
Dave
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- February 24, 2014 at 2:45 pm
Unfortunate news – from what I have read here, swelling of the pituitary gland appears to be a pretty common problem with Yervoy. Hopefully, your next treatment offers better results. Good luck.
Kevin
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- February 24, 2014 at 2:45 pm
Unfortunate news – from what I have read here, swelling of the pituitary gland appears to be a pretty common problem with Yervoy. Hopefully, your next treatment offers better results. Good luck.
Kevin
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- February 24, 2014 at 2:45 pm
Unfortunate news – from what I have read here, swelling of the pituitary gland appears to be a pretty common problem with Yervoy. Hopefully, your next treatment offers better results. Good luck.
Kevin
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- February 24, 2014 at 5:34 pm
It really gets my goat when people, and especially doctors make a claim that a certain side effect, or particularly one of the more severe side effects (like pituitary swelling) means Ipi is working. There has never been ANY corolation or other connection between number, type, or severity of side effects of Ipi and response. There are just as many people who progress with pituitary swelling or severe colitis as there are people who get a long term response. Pretty much everyone has some side effects but that has nothing to do with whether or not the lymphocyes are attacking the right thing (i.e. the melanoma)! All it means is that the person has side effects. It's like saying if you get a fever with interferon it must be working. No it doesn't!
It just gives false hope to people and it's frustrating!
You're smart not wait around for the Ipi to start working and instead to get going on a backup plan. Good luck to you.
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- February 25, 2014 at 10:37 pm
Mr./Mrs. Anonymous,
This has certainly been a point of contention recently on this board. Can you site any recent studies that show there is no correlation between IRAEs (Immune Related Adverse Events) and disease progression/regression? The study below is from 2007 and certainly indicates that there potentially is a correlation. I'm surprised there isn't updated information on this front. Maybe there is and I just haven't seen it.
"Increasing evidence suggests that IRAEs may correlate with response to ipilimumab. Attia and colleagues reported that ipilimumab-treated patients experiencing grade III/IV IRAEs had a significantly higher rate of tumor regression than those without IRAEs (36% versus 5% of patients) [5]. As reported by Beck and associates, the objective response rate was significantly higher in ipilimumab-treated melanoma patients who developed enterocolitis compared with those who did not (36% versus 11%) [10]. Preliminary results also suggest that the association may hold true in the adjuvant setting [13]. Further studies will help to elucidate the relationship between IRAEs and response to ipilimumab treatment" -
- February 25, 2014 at 10:37 pm
Mr./Mrs. Anonymous,
This has certainly been a point of contention recently on this board. Can you site any recent studies that show there is no correlation between IRAEs (Immune Related Adverse Events) and disease progression/regression? The study below is from 2007 and certainly indicates that there potentially is a correlation. I'm surprised there isn't updated information on this front. Maybe there is and I just haven't seen it.
"Increasing evidence suggests that IRAEs may correlate with response to ipilimumab. Attia and colleagues reported that ipilimumab-treated patients experiencing grade III/IV IRAEs had a significantly higher rate of tumor regression than those without IRAEs (36% versus 5% of patients) [5]. As reported by Beck and associates, the objective response rate was significantly higher in ipilimumab-treated melanoma patients who developed enterocolitis compared with those who did not (36% versus 11%) [10]. Preliminary results also suggest that the association may hold true in the adjuvant setting [13]. Further studies will help to elucidate the relationship between IRAEs and response to ipilimumab treatment" -
- February 25, 2014 at 10:37 pm
Mr./Mrs. Anonymous,
This has certainly been a point of contention recently on this board. Can you site any recent studies that show there is no correlation between IRAEs (Immune Related Adverse Events) and disease progression/regression? The study below is from 2007 and certainly indicates that there potentially is a correlation. I'm surprised there isn't updated information on this front. Maybe there is and I just haven't seen it.
"Increasing evidence suggests that IRAEs may correlate with response to ipilimumab. Attia and colleagues reported that ipilimumab-treated patients experiencing grade III/IV IRAEs had a significantly higher rate of tumor regression than those without IRAEs (36% versus 5% of patients) [5]. As reported by Beck and associates, the objective response rate was significantly higher in ipilimumab-treated melanoma patients who developed enterocolitis compared with those who did not (36% versus 11%) [10]. Preliminary results also suggest that the association may hold true in the adjuvant setting [13]. Further studies will help to elucidate the relationship between IRAEs and response to ipilimumab treatment"
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- February 24, 2014 at 5:34 pm
It really gets my goat when people, and especially doctors make a claim that a certain side effect, or particularly one of the more severe side effects (like pituitary swelling) means Ipi is working. There has never been ANY corolation or other connection between number, type, or severity of side effects of Ipi and response. There are just as many people who progress with pituitary swelling or severe colitis as there are people who get a long term response. Pretty much everyone has some side effects but that has nothing to do with whether or not the lymphocyes are attacking the right thing (i.e. the melanoma)! All it means is that the person has side effects. It's like saying if you get a fever with interferon it must be working. No it doesn't!
It just gives false hope to people and it's frustrating!
You're smart not wait around for the Ipi to start working and instead to get going on a backup plan. Good luck to you.
-
- February 24, 2014 at 5:34 pm
It really gets my goat when people, and especially doctors make a claim that a certain side effect, or particularly one of the more severe side effects (like pituitary swelling) means Ipi is working. There has never been ANY corolation or other connection between number, type, or severity of side effects of Ipi and response. There are just as many people who progress with pituitary swelling or severe colitis as there are people who get a long term response. Pretty much everyone has some side effects but that has nothing to do with whether or not the lymphocyes are attacking the right thing (i.e. the melanoma)! All it means is that the person has side effects. It's like saying if you get a fever with interferon it must be working. No it doesn't!
It just gives false hope to people and it's frustrating!
You're smart not wait around for the Ipi to start working and instead to get going on a backup plan. Good luck to you.
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- February 25, 2014 at 2:13 am
Dave,
Sorry about your latest results. Thanks for posting the info. I hate posting that kind of news also but it's important to share it. Good luck at Moffitt. Will you be seeing Dr. Weber?
Brian
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- February 25, 2014 at 1:43 pm
Yes, I get to see Dr. Weber. Apparently he has some new trial going on that is getting excellent results.
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- March 5, 2014 at 1:47 pm
I didn't qualify for the new trial. Have to have mets bigger than 11 mm and easily extractable. My big one is in my hip bone and my other big one got radiated.
He's putting me on the BRAF/MEK combo for now. Sounds very promising with 76% success rate.
My wife took a bunch of notes on the other options. I'll let you know what they were as soon as she gives me her notes.
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- March 5, 2014 at 1:47 pm
I didn't qualify for the new trial. Have to have mets bigger than 11 mm and easily extractable. My big one is in my hip bone and my other big one got radiated.
He's putting me on the BRAF/MEK combo for now. Sounds very promising with 76% success rate.
My wife took a bunch of notes on the other options. I'll let you know what they were as soon as she gives me her notes.
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- March 5, 2014 at 6:51 pm
Thanks Dave,
Was curious if TIL options were talked about. I read recently they got a grant to start some TIL trials. I think most of the TIL trials they are doing require a resectable tumor but I wonder if they have any that don't require a resectable tumor. Glad the BRAF/MEK combo sound so promising.
Brian
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- March 5, 2014 at 6:51 pm
Thanks Dave,
Was curious if TIL options were talked about. I read recently they got a grant to start some TIL trials. I think most of the TIL trials they are doing require a resectable tumor but I wonder if they have any that don't require a resectable tumor. Glad the BRAF/MEK combo sound so promising.
Brian
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- March 11, 2014 at 5:42 pm
As a matter of fact, he spoke very highly of the TIL. My only problem was that I don't currently have anything large enough or easily resectable yet. Gives me hope though. You have to have mets that are greater than 11 mm. My biggest is in my lungs and is only 8 mm.
If I remember correctly, the stage IV trial for this is opening in a few weeks. He threw so much info at us that I may be confused as to which one, but I'm 90% sure it was TIL.
And on a sour note, they found 4 small mets in my brain last week. I have to get whole brain radiation prior to the BRAF/MEK. I start my 15 rounds of treatment tomorrow. Can't seem to get a break lately, but I'm sure things will turn around soon. I've switched to a new Radiology Oncologist as the last one was a jerk. I'm really happy with my initial meeting with the new one and I think he'll treat me like a patient, not a pain.
Take care.
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- March 11, 2014 at 5:42 pm
As a matter of fact, he spoke very highly of the TIL. My only problem was that I don't currently have anything large enough or easily resectable yet. Gives me hope though. You have to have mets that are greater than 11 mm. My biggest is in my lungs and is only 8 mm.
If I remember correctly, the stage IV trial for this is opening in a few weeks. He threw so much info at us that I may be confused as to which one, but I'm 90% sure it was TIL.
And on a sour note, they found 4 small mets in my brain last week. I have to get whole brain radiation prior to the BRAF/MEK. I start my 15 rounds of treatment tomorrow. Can't seem to get a break lately, but I'm sure things will turn around soon. I've switched to a new Radiology Oncologist as the last one was a jerk. I'm really happy with my initial meeting with the new one and I think he'll treat me like a patient, not a pain.
Take care.
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- March 11, 2014 at 5:42 pm
As a matter of fact, he spoke very highly of the TIL. My only problem was that I don't currently have anything large enough or easily resectable yet. Gives me hope though. You have to have mets that are greater than 11 mm. My biggest is in my lungs and is only 8 mm.
If I remember correctly, the stage IV trial for this is opening in a few weeks. He threw so much info at us that I may be confused as to which one, but I'm 90% sure it was TIL.
And on a sour note, they found 4 small mets in my brain last week. I have to get whole brain radiation prior to the BRAF/MEK. I start my 15 rounds of treatment tomorrow. Can't seem to get a break lately, but I'm sure things will turn around soon. I've switched to a new Radiology Oncologist as the last one was a jerk. I'm really happy with my initial meeting with the new one and I think he'll treat me like a patient, not a pain.
Take care.
-
- March 5, 2014 at 6:51 pm
Thanks Dave,
Was curious if TIL options were talked about. I read recently they got a grant to start some TIL trials. I think most of the TIL trials they are doing require a resectable tumor but I wonder if they have any that don't require a resectable tumor. Glad the BRAF/MEK combo sound so promising.
Brian
-
- March 5, 2014 at 1:47 pm
I didn't qualify for the new trial. Have to have mets bigger than 11 mm and easily extractable. My big one is in my hip bone and my other big one got radiated.
He's putting me on the BRAF/MEK combo for now. Sounds very promising with 76% success rate.
My wife took a bunch of notes on the other options. I'll let you know what they were as soon as she gives me her notes.
-
- February 25, 2014 at 1:43 pm
Yes, I get to see Dr. Weber. Apparently he has some new trial going on that is getting excellent results.
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- February 25, 2014 at 1:43 pm
Yes, I get to see Dr. Weber. Apparently he has some new trial going on that is getting excellent results.
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- February 25, 2014 at 5:34 am
My doctor has always said that things like swelling of glans…itchy skinetc.. is a reaction of drug from your body. Only real results is reaction or affect on tumor…I had thyroid issue and itchy skin with mild bouts of diarehha at times only after infusion. True test came near end of year when CT scan showed shrinkage of lung tumors and recent PET showed NED.
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- February 25, 2014 at 5:34 am
My doctor has always said that things like swelling of glans…itchy skinetc.. is a reaction of drug from your body. Only real results is reaction or affect on tumor…I had thyroid issue and itchy skin with mild bouts of diarehha at times only after infusion. True test came near end of year when CT scan showed shrinkage of lung tumors and recent PET showed NED.
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- February 25, 2014 at 5:34 am
My doctor has always said that things like swelling of glans…itchy skinetc.. is a reaction of drug from your body. Only real results is reaction or affect on tumor…I had thyroid issue and itchy skin with mild bouts of diarehha at times only after infusion. True test came near end of year when CT scan showed shrinkage of lung tumors and recent PET showed NED.
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