› Forums › General Melanoma Community › PD-1 (or keppra) and Tingling?
- This topic has 48 replies, 6 voices, and was last updated 8 years, 9 months ago by
Brendan.
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- July 11, 2015 at 9:49 pm
Hi Everyone,
I have been on PD-1 for about 18 months now. The melanoma has been behaving as my single,defiant, 5mm met in my left lung has been stable for over a year. I have recently had a tingling sensation in my left leg and sometimes my left foot seems to be 'heavy' when I walk to the bathroom in the middle of the night (which is all the time!!). I had a seizure in June and my keppra was upped to 2000 mg/daily.
Anyone experience have a similar sensation?
Thanks!
Brendan
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- July 12, 2015 at 12:14 am
Brendan: Read your bio. I'm sorry, you've been thru a lot already. My husband's only symptom 2 yrs ago was acute onset of moderate numbness & tingling in his fingers, unchanging for ~2 mo before he checked it out with his primary doc. MRI of neck: mass in cervical spine. Resected as much as possible. Radiation to residual tumor & Keytruda X 10 mo. Whatever's left of the melanoma is stable. While it worries me you may have a cervical spine met, I want you to know that my husband has survived thx to a very good Kaiser neurosurgeon & the spirit to keep fighting. You are probably headed for an MRI/PET very shortly and I wish you good results, at least something easy to deal with. Please keep us posted. You're on my prayer list. A.L.
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- July 12, 2015 at 12:14 am
Brendan: Read your bio. I'm sorry, you've been thru a lot already. My husband's only symptom 2 yrs ago was acute onset of moderate numbness & tingling in his fingers, unchanging for ~2 mo before he checked it out with his primary doc. MRI of neck: mass in cervical spine. Resected as much as possible. Radiation to residual tumor & Keytruda X 10 mo. Whatever's left of the melanoma is stable. While it worries me you may have a cervical spine met, I want you to know that my husband has survived thx to a very good Kaiser neurosurgeon & the spirit to keep fighting. You are probably headed for an MRI/PET very shortly and I wish you good results, at least something easy to deal with. Please keep us posted. You're on my prayer list. A.L.
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- July 12, 2015 at 12:14 am
Brendan: Read your bio. I'm sorry, you've been thru a lot already. My husband's only symptom 2 yrs ago was acute onset of moderate numbness & tingling in his fingers, unchanging for ~2 mo before he checked it out with his primary doc. MRI of neck: mass in cervical spine. Resected as much as possible. Radiation to residual tumor & Keytruda X 10 mo. Whatever's left of the melanoma is stable. While it worries me you may have a cervical spine met, I want you to know that my husband has survived thx to a very good Kaiser neurosurgeon & the spirit to keep fighting. You are probably headed for an MRI/PET very shortly and I wish you good results, at least something easy to deal with. Please keep us posted. You're on my prayer list. A.L.
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- July 12, 2015 at 12:37 am
Hi Brendan, have you told your neural surgeon of this symptom? They might do your next Mri earlier if you let them know how you are feeling. I am part of the BMS checkmate 67 trial also. I have not heard of the symptom you have, being associated with the study, but you never know, they keep adding new disclaimers when they find out new side effects. Wishing you the best!!!! Ed
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- July 12, 2015 at 12:37 am
Hi Brendan, have you told your neural surgeon of this symptom? They might do your next Mri earlier if you let them know how you are feeling. I am part of the BMS checkmate 67 trial also. I have not heard of the symptom you have, being associated with the study, but you never know, they keep adding new disclaimers when they find out new side effects. Wishing you the best!!!! Ed
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- July 12, 2015 at 12:37 am
Hi Brendan, have you told your neural surgeon of this symptom? They might do your next Mri earlier if you let them know how you are feeling. I am part of the BMS checkmate 67 trial also. I have not heard of the symptom you have, being associated with the study, but you never know, they keep adding new disclaimers when they find out new side effects. Wishing you the best!!!! Ed
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- July 12, 2015 at 4:20 am
Hey Brendan,
I looked at your bio to remind myself of your treatments. I know you took ipi a while back. Given the study you are in, are you sure you are getting only anti-PD1? Not that it matters too much. There is documentation that ipi can cause paresthesias. We do not have that documentation for anti-PD1….not that that is an absolute reality at this time….but that is where the side effect profile stands currently. I am also convinced that side effects can occur some distance from administration of medications. That is partly from personal experience but also seems to be showing up in more and more case reports as well. On the good side of that long term side effect scenario, it would indicate that positive effects could be long term (ie "durable") as well, no?! So….I think you could be experiencing paresthesias due to your treatments, but talking about the symptoms with your onc and neurology team is certainly warranted. Wishing you well. C
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- July 12, 2015 at 4:20 am
Hey Brendan,
I looked at your bio to remind myself of your treatments. I know you took ipi a while back. Given the study you are in, are you sure you are getting only anti-PD1? Not that it matters too much. There is documentation that ipi can cause paresthesias. We do not have that documentation for anti-PD1….not that that is an absolute reality at this time….but that is where the side effect profile stands currently. I am also convinced that side effects can occur some distance from administration of medications. That is partly from personal experience but also seems to be showing up in more and more case reports as well. On the good side of that long term side effect scenario, it would indicate that positive effects could be long term (ie "durable") as well, no?! So….I think you could be experiencing paresthesias due to your treatments, but talking about the symptoms with your onc and neurology team is certainly warranted. Wishing you well. C
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- July 12, 2015 at 4:20 am
Hey Brendan,
I looked at your bio to remind myself of your treatments. I know you took ipi a while back. Given the study you are in, are you sure you are getting only anti-PD1? Not that it matters too much. There is documentation that ipi can cause paresthesias. We do not have that documentation for anti-PD1….not that that is an absolute reality at this time….but that is where the side effect profile stands currently. I am also convinced that side effects can occur some distance from administration of medications. That is partly from personal experience but also seems to be showing up in more and more case reports as well. On the good side of that long term side effect scenario, it would indicate that positive effects could be long term (ie "durable") as well, no?! So….I think you could be experiencing paresthesias due to your treatments, but talking about the symptoms with your onc and neurology team is certainly warranted. Wishing you well. C
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- July 12, 2015 at 4:09 pm
Hi Brendan,
Good to hear things are stable and behaving. I've been on a PD1 combo trial for 16 months now. I have not experienced those symptoms/sensations. As an aside on seizure meds, my neurologist tapered me up on Lamictal to 350mg / day for seizure control and then dropped me off the Keppra completely. Not a quick experiment to try because it took 3 months to taper up. But I like Lamictal for the other effects like you mention in your profile. For me it's to control 'epileptoform' brain waves/partial seizure focused in one location, haven't had any full seizures.
– Kyle
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- July 12, 2015 at 4:09 pm
Hi Brendan,
Good to hear things are stable and behaving. I've been on a PD1 combo trial for 16 months now. I have not experienced those symptoms/sensations. As an aside on seizure meds, my neurologist tapered me up on Lamictal to 350mg / day for seizure control and then dropped me off the Keppra completely. Not a quick experiment to try because it took 3 months to taper up. But I like Lamictal for the other effects like you mention in your profile. For me it's to control 'epileptoform' brain waves/partial seizure focused in one location, haven't had any full seizures.
– Kyle
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- July 12, 2015 at 4:09 pm
Hi Brendan,
Good to hear things are stable and behaving. I've been on a PD1 combo trial for 16 months now. I have not experienced those symptoms/sensations. As an aside on seizure meds, my neurologist tapered me up on Lamictal to 350mg / day for seizure control and then dropped me off the Keppra completely. Not a quick experiment to try because it took 3 months to taper up. But I like Lamictal for the other effects like you mention in your profile. For me it's to control 'epileptoform' brain waves/partial seizure focused in one location, haven't had any full seizures.
– Kyle
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- July 17, 2015 at 1:03 am
Brendan, I hope that things went well for,you today. Glad to hear that PD-1 is continuing to work for you.
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- July 21, 2015 at 6:22 pm
Hi Everyone,
Thanks for the support. My radiation oncologist just called. The radiologist report says there is a 'suspicious' mass [I didn't read report yet-she just told me about it]. She called to tell me that she does not see what they are seeing. It looks to her to be swelling. In the past three years I've had two rounds of radiation and two rcraniotomies. The second cranitiotomy was in June 2013 and the surgeon left gliadel wafers in the cavity. My rad onc told me that I am she thinks it's just normal post treatment changes and that the timeline.
The MRI will be presented next Monday at "Tumor Board' meeting and my rad onc, med onc, endocrinologist, neurologist, and neurosurgeon will review as a team.
In the meantime my rad onc told me to just sit tight, which is rather easy by this point. I'll post results next week.
Thanks!
Brendan
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- July 21, 2015 at 6:22 pm
Hi Everyone,
Thanks for the support. My radiation oncologist just called. The radiologist report says there is a 'suspicious' mass [I didn't read report yet-she just told me about it]. She called to tell me that she does not see what they are seeing. It looks to her to be swelling. In the past three years I've had two rounds of radiation and two rcraniotomies. The second cranitiotomy was in June 2013 and the surgeon left gliadel wafers in the cavity. My rad onc told me that I am she thinks it's just normal post treatment changes and that the timeline.
The MRI will be presented next Monday at "Tumor Board' meeting and my rad onc, med onc, endocrinologist, neurologist, and neurosurgeon will review as a team.
In the meantime my rad onc told me to just sit tight, which is rather easy by this point. I'll post results next week.
Thanks!
Brendan
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- July 21, 2015 at 6:22 pm
Hi Everyone,
Thanks for the support. My radiation oncologist just called. The radiologist report says there is a 'suspicious' mass [I didn't read report yet-she just told me about it]. She called to tell me that she does not see what they are seeing. It looks to her to be swelling. In the past three years I've had two rounds of radiation and two rcraniotomies. The second cranitiotomy was in June 2013 and the surgeon left gliadel wafers in the cavity. My rad onc told me that I am she thinks it's just normal post treatment changes and that the timeline.
The MRI will be presented next Monday at "Tumor Board' meeting and my rad onc, med onc, endocrinologist, neurologist, and neurosurgeon will review as a team.
In the meantime my rad onc told me to just sit tight, which is rather easy by this point. I'll post results next week.
Thanks!
Brendan
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- July 26, 2015 at 5:47 pm
Hi Brendan,
I know there was some changes seen on my MRI in 2012, 6-10 months post-radiation/post-IPI. They did 4 MRIs over 14 weeks, including 2 with special "perfusion studies" to try to distinguish whether radiation effect, recurrence and/or IPI swelling was the most likely cause of whatever they were seeing on the scans. They (don't remember if there was a tumor board) eventually felt what they were seeing was most likely radiation effect. Whatever it was has not been an issue since.
I hope the results from the tumor board are encouraging.
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- July 27, 2015 at 5:28 pm
Hi Everyone,
Thanks for the sipporrt. My rad onc called today after tumor board. Everyone on the board agreed with her initial assessmne that it looks like postsurgical changes. She intentionally went to a different tumor board so the docs who were looking at the scans were not familiar with my entire history. She rcommends another MRI in two months and she will order different images (to get different looks at the exact spot).
Still waiting on tingles. It doesn't seem to be a met of any sort because I can go a couple days without the tingly feeling. I will see my med onc (melanoma specialist) next week for bloodwork, etc.
Thanks everyone! Good luck to you all.
Brendan
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- July 27, 2015 at 5:28 pm
Hi Everyone,
Thanks for the sipporrt. My rad onc called today after tumor board. Everyone on the board agreed with her initial assessmne that it looks like postsurgical changes. She intentionally went to a different tumor board so the docs who were looking at the scans were not familiar with my entire history. She rcommends another MRI in two months and she will order different images (to get different looks at the exact spot).
Still waiting on tingles. It doesn't seem to be a met of any sort because I can go a couple days without the tingly feeling. I will see my med onc (melanoma specialist) next week for bloodwork, etc.
Thanks everyone! Good luck to you all.
Brendan
-
- July 27, 2015 at 5:28 pm
Hi Everyone,
Thanks for the sipporrt. My rad onc called today after tumor board. Everyone on the board agreed with her initial assessmne that it looks like postsurgical changes. She intentionally went to a different tumor board so the docs who were looking at the scans were not familiar with my entire history. She rcommends another MRI in two months and she will order different images (to get different looks at the exact spot).
Still waiting on tingles. It doesn't seem to be a met of any sort because I can go a couple days without the tingly feeling. I will see my med onc (melanoma specialist) next week for bloodwork, etc.
Thanks everyone! Good luck to you all.
Brendan
-
- July 26, 2015 at 5:47 pm
Hi Brendan,
I know there was some changes seen on my MRI in 2012, 6-10 months post-radiation/post-IPI. They did 4 MRIs over 14 weeks, including 2 with special "perfusion studies" to try to distinguish whether radiation effect, recurrence and/or IPI swelling was the most likely cause of whatever they were seeing on the scans. They (don't remember if there was a tumor board) eventually felt what they were seeing was most likely radiation effect. Whatever it was has not been an issue since.
I hope the results from the tumor board are encouraging.
-
- July 26, 2015 at 5:47 pm
Hi Brendan,
I know there was some changes seen on my MRI in 2012, 6-10 months post-radiation/post-IPI. They did 4 MRIs over 14 weeks, including 2 with special "perfusion studies" to try to distinguish whether radiation effect, recurrence and/or IPI swelling was the most likely cause of whatever they were seeing on the scans. They (don't remember if there was a tumor board) eventually felt what they were seeing was most likely radiation effect. Whatever it was has not been an issue since.
I hope the results from the tumor board are encouraging.
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