› Forums › General Melanoma Community › What to make of significant side effects?
- This topic has 21 replies, 4 voices, and was last updated 8 years, 9 months ago by
davidstewart.
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- November 8, 2016 at 4:29 pm
I have metastatic melanoma, treated with 2 infusions of ipi/nivo last fall. Recently experienced inflammation of the meninges of my brain, causing significant neurological impairment; was hospitalized; experienced a major seizure and was placed on anticonvulsant medication (KEPPRA). Treatment with high dose steroids brought the swelling in the brain down and is allowing return of functioning. They do not think it is metastatic cancer, nor sarcoidosis, but a delayed side effect of ipi/nivo treatment. Hopefully as steroids are tapered the swelling will stay down and I will return to normal.
Questions: Has anyone else had this? What treatments were used? What was the outcome? Does it have any significance for prognosis?
History:
I was diagnosed with metastasized melanoma August 31, 2015.The PET scan showed cancer in lymph nodes, bilateral pulmonary nodules and a right adrenal lesion. The brain was negative for intracranial metastases. I had my first infusion of ipi/nivo on October 2, 2015. Colitis was addressed with low dose steroids. Second infusion was December 4, 2015. Colitis was treated with high dose steroids. High fever and disorientation led to hospitalization for a few days at the beginning of January, treated with high dose steroids. At the end of January I came off the steroids and was feeling much better. There was only a small nodule in one lymph node.
PET/CT scan on January 28, 2016 revealed findings of concerns in the lungs. . A pulmonologist performed a biopsy and diagnosed it sarcoidosis, mild and no treatment necessary. Some problems with kidney functioning resolved on their own as well.
At the end of this past summer I began having visual anomalies such as small illuminated letters that when I examined them would persist and I eventually got used to them. More recently I was frightened by driving and not seeing a truck in the right-hand lane. I was having a medium range constant headache that lasted about ten days. When I began having difficulty finding words and doing routine tasks, I went to the ER. They checked for strokes/tumors did not find anything and released me with the tentative diagnosis of TIAs, small strokes that leave no permanent damage. Two days later my symptoms became worse, went back to the ER and was admitted.
I had multiple neurological problems – not being able to understand or comply with instructions about touching my nose, moving my foot in a certain way; could not understand questions like “how many pennies in a dime”; difficulty forming sentences, finding words; identifying common objects and the peripheral vision in my right eye was virtually gone. Possible diagnoses: leptomemingeal carcinomatosis, sarcoidosis or inflammation as a side effect of ipi/nivo.
High dose steroids brought a beginning decrease of symptoms but then I had a major seizure and have been placed on antiseizure meds (Kepra). Am home and am continuing to improve but still not back to the mental acuity before this episode. (My wife is helping me compose this.)
Thanks for any information…..David
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- November 8, 2016 at 9:06 pm
When was your last MRI and have you gotten a second or third opinion from anyone who looked at the MRI?
Not to scare you, but I will… My Mom got the all clear for her brain MRI 3 years ago tomorrow and the radiation oncologist MISSED 3 brain mets! Only at our 3rd opinion did anyone look at the MRI and find out that she had brain mets! – Even I saw the the big white spots on the MRI!
By the time she had gamma knife radiation she had 9 brain mets. And the first radiation oncologist missed 1! (Said one was a blood vessel!) We finally found a awesome radiation oncologist that we completely trust (Dr. Eric Chang, USC, Los Angeles) and things turned out great for my Mom, but they could have easily gone South.
I allways recommend getting more than one opinion because of the issues we had and would recommend that you get one. You may not have brain mets, but you might find that someone else has another opinion for you and has treated this before successfully.
On another note, you should probably stop driving and talk to your doctor. Your car insurnce coverage could very well be useless until you get a re-exam by the DMV and your doctor clears you.
Good luck!
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- November 8, 2016 at 9:06 pm
When was your last MRI and have you gotten a second or third opinion from anyone who looked at the MRI?
Not to scare you, but I will… My Mom got the all clear for her brain MRI 3 years ago tomorrow and the radiation oncologist MISSED 3 brain mets! Only at our 3rd opinion did anyone look at the MRI and find out that she had brain mets! – Even I saw the the big white spots on the MRI!
By the time she had gamma knife radiation she had 9 brain mets. And the first radiation oncologist missed 1! (Said one was a blood vessel!) We finally found a awesome radiation oncologist that we completely trust (Dr. Eric Chang, USC, Los Angeles) and things turned out great for my Mom, but they could have easily gone South.
I allways recommend getting more than one opinion because of the issues we had and would recommend that you get one. You may not have brain mets, but you might find that someone else has another opinion for you and has treated this before successfully.
On another note, you should probably stop driving and talk to your doctor. Your car insurnce coverage could very well be useless until you get a re-exam by the DMV and your doctor clears you.
Good luck!
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- November 14, 2016 at 3:31 pm
Patina… I had the SAME issues with a local MRI and a radiologist who missed 2 brain lesions! That is how we too ended up with Dr. Eric Chang! : ) The man is brilliant, and surrounded by a quality team in the gamma unit and at tumor boards!
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- November 14, 2016 at 3:31 pm
Patina… I had the SAME issues with a local MRI and a radiologist who missed 2 brain lesions! That is how we too ended up with Dr. Eric Chang! : ) The man is brilliant, and surrounded by a quality team in the gamma unit and at tumor boards!
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- November 14, 2016 at 3:31 pm
Patina… I had the SAME issues with a local MRI and a radiologist who missed 2 brain lesions! That is how we too ended up with Dr. Eric Chang! : ) The man is brilliant, and surrounded by a quality team in the gamma unit and at tumor boards!
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- November 18, 2016 at 12:53 pm
Thank you Patina for your concern, response and inspiring history.
I had a brain MRI August 2015,reviewed by two radioloists and concluding no mets.
My most recent was with this hospitalization (3 weeks ago) where the first radiolist that that what he saw was age related. A second review revealed "subtle" signs of inflammation. I've been treated with high dose steriods and antiseizure meds since that time. Met with a neuro-immunologist this past Monday and he scheduled another high constrast brain MRI December 7 so we should know more by then. Yesterday I got a call from Dr. Steve Hodi's office at Dana Farber re: release of the most recent MRI for his purusal. I had started out on his ipi/nivo study and have maintained a relationship. My Duke oncologist is connected with him as well.
Since I had a seizure NC State laws do not allow me to drive for six months. I am getting my eyes examined by a neuro opthalogist next week. I'm not working until my concentration improves more. Quite an adjustment.
We have a friend who work does research into immunotherapy at UNC to suggest a person for a second opinion. If there is no improvement with the third brain MRI I will likely continue with these high dose steriods and add Remikon infusions every other week. Given that I had a biopsy-based pulmonary sarcoidosis diagnosis in June that resolved without steriods we are hopeful that the same course could manifest for this. The alternatives are not good.
Thank you again,
David
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- November 18, 2016 at 12:53 pm
Thank you Patina for your concern, response and inspiring history.
I had a brain MRI August 2015,reviewed by two radioloists and concluding no mets.
My most recent was with this hospitalization (3 weeks ago) where the first radiolist that that what he saw was age related. A second review revealed "subtle" signs of inflammation. I've been treated with high dose steriods and antiseizure meds since that time. Met with a neuro-immunologist this past Monday and he scheduled another high constrast brain MRI December 7 so we should know more by then. Yesterday I got a call from Dr. Steve Hodi's office at Dana Farber re: release of the most recent MRI for his purusal. I had started out on his ipi/nivo study and have maintained a relationship. My Duke oncologist is connected with him as well.
Since I had a seizure NC State laws do not allow me to drive for six months. I am getting my eyes examined by a neuro opthalogist next week. I'm not working until my concentration improves more. Quite an adjustment.
We have a friend who work does research into immunotherapy at UNC to suggest a person for a second opinion. If there is no improvement with the third brain MRI I will likely continue with these high dose steriods and add Remikon infusions every other week. Given that I had a biopsy-based pulmonary sarcoidosis diagnosis in June that resolved without steriods we are hopeful that the same course could manifest for this. The alternatives are not good.
Thank you again,
David
-
- November 18, 2016 at 12:53 pm
Thank you Patina for your concern, response and inspiring history.
I had a brain MRI August 2015,reviewed by two radioloists and concluding no mets.
My most recent was with this hospitalization (3 weeks ago) where the first radiolist that that what he saw was age related. A second review revealed "subtle" signs of inflammation. I've been treated with high dose steriods and antiseizure meds since that time. Met with a neuro-immunologist this past Monday and he scheduled another high constrast brain MRI December 7 so we should know more by then. Yesterday I got a call from Dr. Steve Hodi's office at Dana Farber re: release of the most recent MRI for his purusal. I had started out on his ipi/nivo study and have maintained a relationship. My Duke oncologist is connected with him as well.
Since I had a seizure NC State laws do not allow me to drive for six months. I am getting my eyes examined by a neuro opthalogist next week. I'm not working until my concentration improves more. Quite an adjustment.
We have a friend who work does research into immunotherapy at UNC to suggest a person for a second opinion. If there is no improvement with the third brain MRI I will likely continue with these high dose steriods and add Remikon infusions every other week. Given that I had a biopsy-based pulmonary sarcoidosis diagnosis in June that resolved without steriods we are hopeful that the same course could manifest for this. The alternatives are not good.
Thank you again,
David
-
- November 8, 2016 at 9:06 pm
When was your last MRI and have you gotten a second or third opinion from anyone who looked at the MRI?
Not to scare you, but I will… My Mom got the all clear for her brain MRI 3 years ago tomorrow and the radiation oncologist MISSED 3 brain mets! Only at our 3rd opinion did anyone look at the MRI and find out that she had brain mets! – Even I saw the the big white spots on the MRI!
By the time she had gamma knife radiation she had 9 brain mets. And the first radiation oncologist missed 1! (Said one was a blood vessel!) We finally found a awesome radiation oncologist that we completely trust (Dr. Eric Chang, USC, Los Angeles) and things turned out great for my Mom, but they could have easily gone South.
I allways recommend getting more than one opinion because of the issues we had and would recommend that you get one. You may not have brain mets, but you might find that someone else has another opinion for you and has treated this before successfully.
On another note, you should probably stop driving and talk to your doctor. Your car insurnce coverage could very well be useless until you get a re-exam by the DMV and your doctor clears you.
Good luck!
-
- November 8, 2016 at 10:05 pm
Hi,
This goes through a lot of the ipi nivo side effects.
Some of the side effects can have late onset-but a second opinion might be worth seking out. Steroids working indicate inflammation playing a part… but exactly the cause of this is unclear. Have they done pituitary hormone tests…..
have they done a brain MRI ?Was it recent ? Sorry more questions than answers…
Hope things will keep on improving…
Deb
-
- November 8, 2016 at 10:05 pm
Hi,
This goes through a lot of the ipi nivo side effects.
Some of the side effects can have late onset-but a second opinion might be worth seking out. Steroids working indicate inflammation playing a part… but exactly the cause of this is unclear. Have they done pituitary hormone tests…..
have they done a brain MRI ?Was it recent ? Sorry more questions than answers…
Hope things will keep on improving…
Deb
-
- November 18, 2016 at 12:58 pm
Hi Deb,
Thank you for your concern.
We share the concern about the cause of the inflammation. Docs are pleased that high dose steroids are reducing neurological symptoms well but as I am weaned we will see.
A brain MRI is scheduled for December 7 and we will know more then.
Currenly we are looking for a second opinion from an experienced immunotherapy neurologist. Any suggestion?
Thanks, David
-
- November 18, 2016 at 12:58 pm
Hi Deb,
Thank you for your concern.
We share the concern about the cause of the inflammation. Docs are pleased that high dose steroids are reducing neurological symptoms well but as I am weaned we will see.
A brain MRI is scheduled for December 7 and we will know more then.
Currenly we are looking for a second opinion from an experienced immunotherapy neurologist. Any suggestion?
Thanks, David
-
- November 18, 2016 at 12:58 pm
Hi Deb,
Thank you for your concern.
We share the concern about the cause of the inflammation. Docs are pleased that high dose steroids are reducing neurological symptoms well but as I am weaned we will see.
A brain MRI is scheduled for December 7 and we will know more then.
Currenly we are looking for a second opinion from an experienced immunotherapy neurologist. Any suggestion?
Thanks, David
-
- November 8, 2016 at 10:05 pm
Hi,
This goes through a lot of the ipi nivo side effects.
Some of the side effects can have late onset-but a second opinion might be worth seking out. Steroids working indicate inflammation playing a part… but exactly the cause of this is unclear. Have they done pituitary hormone tests…..
have they done a brain MRI ?Was it recent ? Sorry more questions than answers…
Hope things will keep on improving…
Deb
-
- November 14, 2016 at 3:26 pm
David (and wife)… I know this reply comes in 6 days beyond your initial post, so hopefully you are still on the rebound and have already booked an appointment with a Neuro Oncologist and/or Radiation Oncologist. What ever became of the small nodule in one lymph node? And where was this node located? Did you have any further treatment beyond your Ipi/Nivo infusion in Dec 2015? As Patina mentioned, a brain MRI should be done….. and not of the low resolution nature that you will get from a local ER. The steroids and Keppra will help with brain inflammation and seizures, although people have been known to have "breakthrough" seizures even while on these meds. The reallllllly important answer you need is the cause of the inflammation. While there is a chance that it could be delayed onset side effects of the ipi/nivo, given the history you've posted, the alternative diagnosis is something that should be addressed immediately.
-
- November 14, 2016 at 3:26 pm
David (and wife)… I know this reply comes in 6 days beyond your initial post, so hopefully you are still on the rebound and have already booked an appointment with a Neuro Oncologist and/or Radiation Oncologist. What ever became of the small nodule in one lymph node? And where was this node located? Did you have any further treatment beyond your Ipi/Nivo infusion in Dec 2015? As Patina mentioned, a brain MRI should be done….. and not of the low resolution nature that you will get from a local ER. The steroids and Keppra will help with brain inflammation and seizures, although people have been known to have "breakthrough" seizures even while on these meds. The reallllllly important answer you need is the cause of the inflammation. While there is a chance that it could be delayed onset side effects of the ipi/nivo, given the history you've posted, the alternative diagnosis is something that should be addressed immediately.
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- November 18, 2016 at 1:17 pm
Hi Niki,
Thanks for your interest and concern! We definitely feel out of the crisis but not by any means out of the woods.
To your questions: The remaining node was what was left from the enlargement of lymph nodes summer 2015 that alerted me to the possibility that my skin cancer had traveled on. I had only two treatments of ipi/nivo but the other mets disappeared. Toxicity eliminated any further immunotherapy so Dec was my last infusion. June biopsy on lungs confirmed sarcoidosis which appeared to disappear on the next PET scan. Without a brain biopsy they cannot elminate cancer.
So we are awaiting the results from this coming third MRI and looking for a second opinion from an immuno-neurolosit. Life feesmore out of control for me as we were doing well with the response to immunotherapy for months and then got blindsided–almost died. No driving for six weeks and no work until I get my full concentration back. At least it beats the alternative.
Thanks for your website.
David
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- November 18, 2016 at 1:17 pm
Hi Niki,
Thanks for your interest and concern! We definitely feel out of the crisis but not by any means out of the woods.
To your questions: The remaining node was what was left from the enlargement of lymph nodes summer 2015 that alerted me to the possibility that my skin cancer had traveled on. I had only two treatments of ipi/nivo but the other mets disappeared. Toxicity eliminated any further immunotherapy so Dec was my last infusion. June biopsy on lungs confirmed sarcoidosis which appeared to disappear on the next PET scan. Without a brain biopsy they cannot elminate cancer.
So we are awaiting the results from this coming third MRI and looking for a second opinion from an immuno-neurolosit. Life feesmore out of control for me as we were doing well with the response to immunotherapy for months and then got blindsided–almost died. No driving for six weeks and no work until I get my full concentration back. At least it beats the alternative.
Thanks for your website.
David
-
- November 18, 2016 at 1:17 pm
Hi Niki,
Thanks for your interest and concern! We definitely feel out of the crisis but not by any means out of the woods.
To your questions: The remaining node was what was left from the enlargement of lymph nodes summer 2015 that alerted me to the possibility that my skin cancer had traveled on. I had only two treatments of ipi/nivo but the other mets disappeared. Toxicity eliminated any further immunotherapy so Dec was my last infusion. June biopsy on lungs confirmed sarcoidosis which appeared to disappear on the next PET scan. Without a brain biopsy they cannot elminate cancer.
So we are awaiting the results from this coming third MRI and looking for a second opinion from an immuno-neurolosit. Life feesmore out of control for me as we were doing well with the response to immunotherapy for months and then got blindsided–almost died. No driving for six weeks and no work until I get my full concentration back. At least it beats the alternative.
Thanks for your website.
David
-
- November 14, 2016 at 3:26 pm
David (and wife)… I know this reply comes in 6 days beyond your initial post, so hopefully you are still on the rebound and have already booked an appointment with a Neuro Oncologist and/or Radiation Oncologist. What ever became of the small nodule in one lymph node? And where was this node located? Did you have any further treatment beyond your Ipi/Nivo infusion in Dec 2015? As Patina mentioned, a brain MRI should be done….. and not of the low resolution nature that you will get from a local ER. The steroids and Keppra will help with brain inflammation and seizures, although people have been known to have "breakthrough" seizures even while on these meds. The reallllllly important answer you need is the cause of the inflammation. While there is a chance that it could be delayed onset side effects of the ipi/nivo, given the history you've posted, the alternative diagnosis is something that should be addressed immediately.
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