› Forums › General Melanoma Community › ipi side effects or LM disease progression?
- This topic has 9 replies, 2 voices, and was last updated 8 years, 11 months ago by
debwray.
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- October 9, 2016 at 10:48 am
Hello,
as I've posted before, my wife was diagnosed with leptomeningeal melanoma (LM) on Sept 1st.
Before that she had lung tumors which have resolved with Braf inhibitors then Gamma-knife for 1 brain met and then Gann-knife for onother 8 brain mets. During last half a year she had pembro+dabra+tram which didn't safe her from last 8 brain mets and LM progression.
Nevertheless we've stopped all medications and started ipilimumab with minor hope for sucess.She had 2 ipi infusions (second delayed for 1 week). After first infusion she started experiencing serve headaches which were managed with pain killers and diuretics (Diacarb- Acetazolamidum). After 2nd infusion headaches became more serve and frequent and vomiting appeared.
Now she has a constant vomiting and can't eat or drink. Neverheless MRI didn't reveal any progression in brain or remarkable symptmos of high intracranial pressure (like hydrocephalus).
No signs of Ipilimumab-Induced Hypophysitis also.
I wonder if there can be ipilimumab side effect of disease progression?
I'm trying to find any doctor who can answer this question but here they are not familiar with ipilimumab drug.
If there any possibility to show MRI scans distanly to any expert? Kind of remote second opinion?
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- October 9, 2016 at 12:06 pm
Hey Mikers. Sorry you and your wife are deal with this on top of everything else. Vomiting is a very broad symptom of many things, but this is what comes to my mind:
Obviously, especially if combined with headache, it can be a sign of increased intracranial pressure. (Though with stable MRI that may not be it.) Vomiting can also occur with an intestinal blockage, pancreatitis, or decreased liver function. Some pretty routine blood work may help shed light regarding the last two. A scan would probably be required to check the intestine…though somtimes a scope is needed as well.
Sorry. Probably not bery helpful. I hope she gets some relief soon. Celeste
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- October 9, 2016 at 12:06 pm
Hey Mikers. Sorry you and your wife are deal with this on top of everything else. Vomiting is a very broad symptom of many things, but this is what comes to my mind:
Obviously, especially if combined with headache, it can be a sign of increased intracranial pressure. (Though with stable MRI that may not be it.) Vomiting can also occur with an intestinal blockage, pancreatitis, or decreased liver function. Some pretty routine blood work may help shed light regarding the last two. A scan would probably be required to check the intestine…though somtimes a scope is needed as well.
Sorry. Probably not bery helpful. I hope she gets some relief soon. Celeste
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- October 9, 2016 at 12:06 pm
Hey Mikers. Sorry you and your wife are deal with this on top of everything else. Vomiting is a very broad symptom of many things, but this is what comes to my mind:
Obviously, especially if combined with headache, it can be a sign of increased intracranial pressure. (Though with stable MRI that may not be it.) Vomiting can also occur with an intestinal blockage, pancreatitis, or decreased liver function. Some pretty routine blood work may help shed light regarding the last two. A scan would probably be required to check the intestine…though somtimes a scope is needed as well.
Sorry. Probably not bery helpful. I hope she gets some relief soon. Celeste
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- October 9, 2016 at 9:34 pm
Hi Mikers,
Nausea sounds likely to be ipi related.The headaches increasing in severity /intensity with the cummulative dose of ipi might be a coincidence but seems to be a regular report from those with pituitary problems.and the MRI findings can be subtle- from a lay persons reading of a few papers. Also, it seems normal mri does not exclude exclude it in some instances. Have they run endocrine tests alongside the MRI ?
Think your questioning attitude is spot on. Just a selection of reports below- Would the doctors consider looking at your wifes symptoms again if you gave them some evidence for your concerns ?
http://www.eje-online.org/content/172/2/195.full.pdf
http://www.endocrine-abstracts.org/ea/0041/ea0041GP164.htm
http://www.ajnr.org/content/30/9/1751.full
Not sure how you get a remote second opinion- but can understand why you are seeking reassurance on this.
Sorry no answers but hypopysitis seems to hit roughly 5% on Ipi…and may even show up with pembro and there was prior exposure to this drug..
Wishing you both the best
Deb
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- October 9, 2016 at 9:34 pm
Hi Mikers,
Nausea sounds likely to be ipi related.The headaches increasing in severity /intensity with the cummulative dose of ipi might be a coincidence but seems to be a regular report from those with pituitary problems.and the MRI findings can be subtle- from a lay persons reading of a few papers. Also, it seems normal mri does not exclude exclude it in some instances. Have they run endocrine tests alongside the MRI ?
Think your questioning attitude is spot on. Just a selection of reports below- Would the doctors consider looking at your wifes symptoms again if you gave them some evidence for your concerns ?
http://www.eje-online.org/content/172/2/195.full.pdf
http://www.endocrine-abstracts.org/ea/0041/ea0041GP164.htm
http://www.ajnr.org/content/30/9/1751.full
Not sure how you get a remote second opinion- but can understand why you are seeking reassurance on this.
Sorry no answers but hypopysitis seems to hit roughly 5% on Ipi…and may even show up with pembro and there was prior exposure to this drug..
Wishing you both the best
Deb
-
- October 9, 2016 at 9:34 pm
Hi Mikers,
Nausea sounds likely to be ipi related.The headaches increasing in severity /intensity with the cummulative dose of ipi might be a coincidence but seems to be a regular report from those with pituitary problems.and the MRI findings can be subtle- from a lay persons reading of a few papers. Also, it seems normal mri does not exclude exclude it in some instances. Have they run endocrine tests alongside the MRI ?
Think your questioning attitude is spot on. Just a selection of reports below- Would the doctors consider looking at your wifes symptoms again if you gave them some evidence for your concerns ?
http://www.eje-online.org/content/172/2/195.full.pdf
http://www.endocrine-abstracts.org/ea/0041/ea0041GP164.htm
http://www.ajnr.org/content/30/9/1751.full
Not sure how you get a remote second opinion- but can understand why you are seeking reassurance on this.
Sorry no answers but hypopysitis seems to hit roughly 5% on Ipi…and may even show up with pembro and there was prior exposure to this drug..
Wishing you both the best
Deb
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- October 10, 2016 at 4:19 pm
Hi Mikers,
Reached out to MoiraM who had problems with her pituatary whilst on ipi… This is how she deacribes the symptoms.If you have a look on this thread Ed has posted a link to a video on IPI side effects which might also be worth a look.
Deb
My anterior pituitary gland gave out after my fourth infusion of Ipi. It was not diagnosed by an MRI at that time but by a blood test after I could no longer climb stairs.
The headaches were bad but not blinding. It turns out that I have a high tolerance to headache pain. I had no appetite. I remember a little nausea but mostly I did not eat. It turned out that I had lost over 30 lbs but I such terrible fluid retention that it was not obvious. At that stage my gut was behaving very differently. The diarrhoea has stopped! That turned out to be because I had such low levels of thyroxine.
The diarrhoea came back, with the 'ipi rash', two months after my final infusion. It was after that that I had the 42 days of diarrhoea and wind.
Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy
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- October 10, 2016 at 4:19 pm
Hi Mikers,
Reached out to MoiraM who had problems with her pituatary whilst on ipi… This is how she deacribes the symptoms.If you have a look on this thread Ed has posted a link to a video on IPI side effects which might also be worth a look.
Deb
Re: ipi side effects or "maybe" c. diff or "maybe" colitis???
MoiraM – (10/10/2016 – 11:48am)
My anterior pituitary gland gave out after my fourth infusion of Ipi. It was not diagnosed by an MRI at that time but by a blood test after I could no longer climb stairs.
The headaches were bad but not blinding. It turns out that I have a high tolerance to headache pain. I had no appetite. I remember a little nausea but mostly I did not eat. It turned out that I had lost over 30 lbs but I such terrible fluid retention that it was not obvious. At that stage my gut was behaving very differently. The diarrhoea has stopped! That turned out to be because I had such low levels of thyroxine.
The diarrhoea came back, with the 'ipi rash', two months after my final infusion. It was after that that I had the 42 days of diarrhoea and wind.
Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy
-
- October 10, 2016 at 4:19 pm
Hi Mikers,
Reached out to MoiraM who had problems with her pituatary whilst on ipi… This is how she deacribes the symptoms.If you have a look on this thread Ed has posted a link to a video on IPI side effects which might also be worth a look.
Deb
Re: ipi side effects or "maybe" c. diff or "maybe" colitis???
MoiraM – (10/10/2016 – 11:48am)
My anterior pituitary gland gave out after my fourth infusion of Ipi. It was not diagnosed by an MRI at that time but by a blood test after I could no longer climb stairs.
The headaches were bad but not blinding. It turns out that I have a high tolerance to headache pain. I had no appetite. I remember a little nausea but mostly I did not eat. It turned out that I had lost over 30 lbs but I such terrible fluid retention that it was not obvious. At that stage my gut was behaving very differently. The diarrhoea has stopped! That turned out to be because I had such low levels of thyroxine.
The diarrhoea came back, with the 'ipi rash', two months after my final infusion. It was after that that I had the 42 days of diarrhoea and wind.
Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy
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Re: ipi side effects or "maybe" c. diff or "maybe" colitis???
MoiraM – (10/10/2016 – 11:48am)