Keytruda side effects… my body has gone crazy!

Hi Cathy! Tell your hubs to hang tough! Targeted brain radiation can clobber those mets, and the sooner he can get on Keytruda, the better.  It's a little terrifying that we stumble across brain lesions because of a seizure. Waiting for brain MRI results every few weeks can be crushing, because there seem to be little to no symptoms that those little creepers are lingering in your head! Well… until you have a seizure from the edema… yeeks!

Annie,

That sounds completely terrifying! Probably even more so for those of you witnessing it, than your dad. I had no idea when I had my first two seizures, but my husband and son remember them with perfect horrible clarity. The really crazy thing, is that my 3rd (and final to this point… knock on wood) seizure was only a partial, I was fully aware of what was going on, and remarkable calm, although frustrated at my inability to speak as the left side of my face was out of my control. I wonder if the severity of response depends upon the region of the brain affected. This is why it is difficult to not be on edge MRI to MRI. My initial seizure was the catalyst to my metastatic diagnosis. There was a 1.2 cm lesion in the left frontal lobe, surrounded by 4 cm of edema. It was enough to drop me to the floor, and followed by grand mal #2 at the ER. Oddly enough, 2 years later, the partial seizure was something I figured was eventually coming. We had been watching several gamma treated lesions for 4 months. Only ONE of them, in the right parietal, was continueously spewing more and more edema each MRI. With only very very minor neurological effects, and not at all a fan of how my body reacts to steriods, I was in hopeful "watch and wait" mode for it to go away. I was at 11 cm of edema with midline shift of the brain, 2 weeks before I lost control of the left side of my face. I ended up asking to have consult with my neurosurgeon to just take the little bugger out of my head. Edema went away rapidly, and there hasn't been a problem since. The unpredictability both frightens me and piques my curiosity of the "why and how". I've had 39 brain lesions total, covering every general location of the brain. Yet, I've only endured the few seizures. 

I hope that your family will soon be able to celebrate watching your dad's brain tumors melt away along with those nasty scary seizures. Any potential swelling coming from the immunotherapy would be a seriously mixed blessing for all of you. "Yay… it's working!" but "Wow… more swelling". Stable is good news. Perhaps all it will take is for one little culprit to disappear from the disabilitating area, and your dad will bounce back as if his brain is completely normal. I'm sure he must be frustrated with each occurrance. However, I often think that it seems more emotionally difficult to be on the "outside" watching as a caregiver than to be the patient. Hang in there! Best wishes for that immunotherapy to make quick work of destroying his spare brain bits!

Annie,

That sounds completely terrifying! Probably even more so for those of you witnessing it, than your dad. I had no idea when I had my first two seizures, but my husband and son remember them with perfect horrible clarity. The really crazy thing, is that my 3rd (and final to this point… knock on wood) seizure was only a partial, I was fully aware of what was going on, and remarkable calm, although frustrated at my inability to speak as the left side of my face was out of my control. I wonder if the severity of response depends upon the region of the brain affected. This is why it is difficult to not be on edge MRI to MRI. My initial seizure was the catalyst to my metastatic diagnosis. There was a 1.2 cm lesion in the left frontal lobe, surrounded by 4 cm of edema. It was enough to drop me to the floor, and followed by grand mal #2 at the ER. Oddly enough, 2 years later, the partial seizure was something I figured was eventually coming. We had been watching several gamma treated lesions for 4 months. Only ONE of them, in the right parietal, was continueously spewing more and more edema each MRI. With only very very minor neurological effects, and not at all a fan of how my body reacts to steriods, I was in hopeful "watch and wait" mode for it to go away. I was at 11 cm of edema with midline shift of the brain, 2 weeks before I lost control of the left side of my face. I ended up asking to have consult with my neurosurgeon to just take the little bugger out of my head. Edema went away rapidly, and there hasn't been a problem since. The unpredictability both frightens me and piques my curiosity of the "why and how". I've had 39 brain lesions total, covering every general location of the brain. Yet, I've only endured the few seizures. 

I hope that your family will soon be able to celebrate watching your dad's brain tumors melt away along with those nasty scary seizures. Any potential swelling coming from the immunotherapy would be a seriously mixed blessing for all of you. "Yay… it's working!" but "Wow… more swelling". Stable is good news. Perhaps all it will take is for one little culprit to disappear from the disabilitating area, and your dad will bounce back as if his brain is completely normal. I'm sure he must be frustrated with each occurrance. However, I often think that it seems more emotionally difficult to be on the "outside" watching as a caregiver than to be the patient. Hang in there! Best wishes for that immunotherapy to make quick work of destroying his spare brain bits!

Annie,

That sounds completely terrifying! Probably even more so for those of you witnessing it, than your dad. I had no idea when I had my first two seizures, but my husband and son remember them with perfect horrible clarity. The really crazy thing, is that my 3rd (and final to this point… knock on wood) seizure was only a partial, I was fully aware of what was going on, and remarkable calm, although frustrated at my inability to speak as the left side of my face was out of my control. I wonder if the severity of response depends upon the region of the brain affected. This is why it is difficult to not be on edge MRI to MRI. My initial seizure was the catalyst to my metastatic diagnosis. There was a 1.2 cm lesion in the left frontal lobe, surrounded by 4 cm of edema. It was enough to drop me to the floor, and followed by grand mal #2 at the ER. Oddly enough, 2 years later, the partial seizure was something I figured was eventually coming. We had been watching several gamma treated lesions for 4 months. Only ONE of them, in the right parietal, was continueously spewing more and more edema each MRI. With only very very minor neurological effects, and not at all a fan of how my body reacts to steriods, I was in hopeful "watch and wait" mode for it to go away. I was at 11 cm of edema with midline shift of the brain, 2 weeks before I lost control of the left side of my face. I ended up asking to have consult with my neurosurgeon to just take the little bugger out of my head. Edema went away rapidly, and there hasn't been a problem since. The unpredictability both frightens me and piques my curiosity of the "why and how". I've had 39 brain lesions total, covering every general location of the brain. Yet, I've only endured the few seizures. 

I hope that your family will soon be able to celebrate watching your dad's brain tumors melt away along with those nasty scary seizures. Any potential swelling coming from the immunotherapy would be a seriously mixed blessing for all of you. "Yay… it's working!" but "Wow… more swelling". Stable is good news. Perhaps all it will take is for one little culprit to disappear from the disabilitating area, and your dad will bounce back as if his brain is completely normal. I'm sure he must be frustrated with each occurrance. However, I often think that it seems more emotionally difficult to be on the "outside" watching as a caregiver than to be the patient. Hang in there! Best wishes for that immunotherapy to make quick work of destroying his spare brain bits!

Brain lesions are scary. Nobody likes to hear of anything growing in the "control center". Even wee little ones can cause big problems. Thankfully, those problems usually appear much worse than the threat of the little bugger in the head.

I've only had 2 gamma treatments since going on Pembro. One, was a week after the first infusion. Clearly, not having had enough time for it to start doing it's job. The other, wasn't until 15 months later. The Pembro definitely worked for my particular brain lesions. No question. I had 2 rounds of gamma in 2013 (initial diagnosis in April of that year), then the new lesions began cropping up MUCH faster, leading to an additional 7 rounds during 2014… 6 of them prior to the start of Pembro, then the one a week after the first infusion. My last round wasn't until early February of this year. Oddly enough, that last lesion treated was traced back to August of 2015 on the scans, but was so small and oddly shaped (not as rounded… more elongated), that it was masking itself as a blood vessel. Sneaky little hide and seek champ! That one is still on my MRI's, not growing, but shrinking as sloooooooooowly as it seemed to grow. The rest of my brain is clean and clear. We were thrilled when the MRI reports went from 4 pages down to 3… then 2… now finally all can be covered on a single page! HA!

We're not sure how that last little bugger found its way "around" the Keytruda. It sure struggled with it, yet somehow, seemed to find a way to grow… albeit VERY VERY slowly. I often wonder if it was always there, just mistaken as that blood vessel, or hiding between image slices. I did have live cells left behind after my second craniotomy in April 2015. This little lesion isn't too far from the area where those cells were left behind. We're quite hopeful and with each passing clean MRI… more comfortable… that Pembro and that final gamma round will have cleared any micrometastasis. That said, now that I've been off Pembro for almost 3 months, my scan anxiety levels are pretty high every 9 weeks. 

Needless to say, I was THRILLED when Pembro received FDA approval. The rampant brain metastasis kept me from being cleared for trials. I'm quite fortunate to have responded as completely as I did. And I'm SUUUUUPER fortunate to have been surrounded by so many brilliant doctors, who agreed to be as aggressive as I was pushing to be!

Question regarding your dad……… I'm assuming they have him on steroids as well as anti-seizure meds… yes? It may seem simplistic, and something the docs have likely already checked, but each time I was on dexamethazone (Decadron)… I developed a diabetic response. My nurses told me that this is not that unusual, but nothing was said until I finally questioned WHY I was having the issue. They looked at me as though this was something that everyone just automatically knows! Anything I would eat, would cause a fever spike. I learned that there is sugar in just about eeeeeeeverything we put into our faces. 

You're probably correct that his body will adjust to the anti-seiure med levels and he will have less fatigue. I went through the same thing. Although, a melanoma friend of mine ended up changing from Keppra to another med which he has less trouble with. Also…. steriods can make a person feel loopy. When I was first on steroids and new to the Keppra, I walked around feeling as if I had a STRONG buzz on. Like I had downed a bottle of wine all on my own. One would think that might be a fun feeling. HA! It's not so fun when it doesn't wear off and allow you a sense of control and being "with it" at your will. 

Brain lesions are scary. Nobody likes to hear of anything growing in the "control center". Even wee little ones can cause big problems. Thankfully, those problems usually appear much worse than the threat of the little bugger in the head.

I've only had 2 gamma treatments since going on Pembro. One, was a week after the first infusion. Clearly, not having had enough time for it to start doing it's job. The other, wasn't until 15 months later. The Pembro definitely worked for my particular brain lesions. No question. I had 2 rounds of gamma in 2013 (initial diagnosis in April of that year), then the new lesions began cropping up MUCH faster, leading to an additional 7 rounds during 2014… 6 of them prior to the start of Pembro, then the one a week after the first infusion. My last round wasn't until early February of this year. Oddly enough, that last lesion treated was traced back to August of 2015 on the scans, but was so small and oddly shaped (not as rounded… more elongated), that it was masking itself as a blood vessel. Sneaky little hide and seek champ! That one is still on my MRI's, not growing, but shrinking as sloooooooooowly as it seemed to grow. The rest of my brain is clean and clear. We were thrilled when the MRI reports went from 4 pages down to 3… then 2… now finally all can be covered on a single page! HA!

We're not sure how that last little bugger found its way "around" the Keytruda. It sure struggled with it, yet somehow, seemed to find a way to grow… albeit VERY VERY slowly. I often wonder if it was always there, just mistaken as that blood vessel, or hiding between image slices. I did have live cells left behind after my second craniotomy in April 2015. This little lesion isn't too far from the area where those cells were left behind. We're quite hopeful and with each passing clean MRI… more comfortable… that Pembro and that final gamma round will have cleared any micrometastasis. That said, now that I've been off Pembro for almost 3 months, my scan anxiety levels are pretty high every 9 weeks. 

Needless to say, I was THRILLED when Pembro received FDA approval. The rampant brain metastasis kept me from being cleared for trials. I'm quite fortunate to have responded as completely as I did. And I'm SUUUUUPER fortunate to have been surrounded by so many brilliant doctors, who agreed to be as aggressive as I was pushing to be!

Question regarding your dad……… I'm assuming they have him on steroids as well as anti-seizure meds… yes? It may seem simplistic, and something the docs have likely already checked, but each time I was on dexamethazone (Decadron)… I developed a diabetic response. My nurses told me that this is not that unusual, but nothing was said until I finally questioned WHY I was having the issue. They looked at me as though this was something that everyone just automatically knows! Anything I would eat, would cause a fever spike. I learned that there is sugar in just about eeeeeeeverything we put into our faces. 

You're probably correct that his body will adjust to the anti-seiure med levels and he will have less fatigue. I went through the same thing. Although, a melanoma friend of mine ended up changing from Keppra to another med which he has less trouble with. Also…. steriods can make a person feel loopy. When I was first on steroids and new to the Keppra, I walked around feeling as if I had a STRONG buzz on. Like I had downed a bottle of wine all on my own. One would think that might be a fun feeling. HA! It's not so fun when it doesn't wear off and allow you a sense of control and being "with it" at your will. 

Brain lesions are scary. Nobody likes to hear of anything growing in the "control center". Even wee little ones can cause big problems. Thankfully, those problems usually appear much worse than the threat of the little bugger in the head.

I've only had 2 gamma treatments since going on Pembro. One, was a week after the first infusion. Clearly, not having had enough time for it to start doing it's job. The other, wasn't until 15 months later. The Pembro definitely worked for my particular brain lesions. No question. I had 2 rounds of gamma in 2013 (initial diagnosis in April of that year), then the new lesions began cropping up MUCH faster, leading to an additional 7 rounds during 2014… 6 of them prior to the start of Pembro, then the one a week after the first infusion. My last round wasn't until early February of this year. Oddly enough, that last lesion treated was traced back to August of 2015 on the scans, but was so small and oddly shaped (not as rounded… more elongated), that it was masking itself as a blood vessel. Sneaky little hide and seek champ! That one is still on my MRI's, not growing, but shrinking as sloooooooooowly as it seemed to grow. The rest of my brain is clean and clear. We were thrilled when the MRI reports went from 4 pages down to 3… then 2… now finally all can be covered on a single page! HA!

We're not sure how that last little bugger found its way "around" the Keytruda. It sure struggled with it, yet somehow, seemed to find a way to grow… albeit VERY VERY slowly. I often wonder if it was always there, just mistaken as that blood vessel, or hiding between image slices. I did have live cells left behind after my second craniotomy in April 2015. This little lesion isn't too far from the area where those cells were left behind. We're quite hopeful and with each passing clean MRI… more comfortable… that Pembro and that final gamma round will have cleared any micrometastasis. That said, now that I've been off Pembro for almost 3 months, my scan anxiety levels are pretty high every 9 weeks. 

Needless to say, I was THRILLED when Pembro received FDA approval. The rampant brain metastasis kept me from being cleared for trials. I'm quite fortunate to have responded as completely as I did. And I'm SUUUUUPER fortunate to have been surrounded by so many brilliant doctors, who agreed to be as aggressive as I was pushing to be!

Question regarding your dad……… I'm assuming they have him on steroids as well as anti-seizure meds… yes? It may seem simplistic, and something the docs have likely already checked, but each time I was on dexamethazone (Decadron)… I developed a diabetic response. My nurses told me that this is not that unusual, but nothing was said until I finally questioned WHY I was having the issue. They looked at me as though this was something that everyone just automatically knows! Anything I would eat, would cause a fever spike. I learned that there is sugar in just about eeeeeeeverything we put into our faces. 

You're probably correct that his body will adjust to the anti-seiure med levels and he will have less fatigue. I went through the same thing. Although, a melanoma friend of mine ended up changing from Keppra to another med which he has less trouble with. Also…. steriods can make a person feel loopy. When I was first on steroids and new to the Keppra, I walked around feeling as if I had a STRONG buzz on. Like I had downed a bottle of wine all on my own. One would think that might be a fun feeling. HA! It's not so fun when it doesn't wear off and allow you a sense of control and being "with it" at your will. 

Whole Brain Radiation can also cause some neurological deficit. Hopefully with the passage of time, IF that is the case, he will be able to work through some recovery. It is good news that his follow up scans were stable! it takes many months for treated brain lesions to dissipate, and some of them may never go away, but will remain inactive.

I have a friend who had a brain lesion surgically removed, and then the resection area gamma radiated. They never put him on anti-seizure meds, until he had a seizure nearly 7 months later. His brain MRI post seizure showed that he had no new lesions. The brain is a bizarre place. This is the same gentleman who had to switch from Keppra to a different anti-seizure med due to the side effects (dizziness, lethargy, etc). 72 years old, a former oncological surgeon… he had metastasis to liver and brain. He had 2 years of Pembro, and is now 6 months off treatment, and doing exceptionally well. His story is quite different than mine, but with the same favorable outcome. There is so much hope out there with these new treatment options.  : )

Have I already asked you what his tumor load is, other than the mets in the brain?

From what I have read, most adverse side effects will happen within the first few months. HOWEVER, with more and more people on the drug outside of trial patients now, we seem to be hearing differently. There are more stories like mine cropping up, where there is a cumulative build up effect. I went through the full treatment (4 rounds) of Ipi first, with no issues at all… well… there was the loss of my thyroid function, but a regular pill handles that. My 72 year old buddy made it through 2 rounds of Ipi and had such horrible cholitis, he stopped treatment and moved onto Pembro. Ipi did little for me. Stablizied one very small tumor in my left lung, but one in the right lung continued to grow, and the brain kept cropping up lesions. Pembro worked really well, and I was fairly side effect free until my 29th infusion (20 months). I had some fatigue a day or two after the infusions, and there was always managable irritable bowel issues. The joint pain and pancreatitis didn't set in until much later. My 72 year old buddy… no real issues with Pembro. Some irratable bowels, and a bit of fatigue, but overall, the two of us were out enjoying life. He was golfing and swimming. I was still working and riding my bicycle regularly. I almost felt as though we weren't "suffering" like most cancer patients do. Never lost hair, no weight loss, no gaunt look. My worst issues were prior to getting on Pembro. 

I'll keep thinking positive vibes for your dad to bounce back enough to get him and your mom over here to the States, where they can enjoy a larger support network with you.

Whole Brain Radiation can also cause some neurological deficit. Hopefully with the passage of time, IF that is the case, he will be able to work through some recovery. It is good news that his follow up scans were stable! it takes many months for treated brain lesions to dissipate, and some of them may never go away, but will remain inactive.

I have a friend who had a brain lesion surgically removed, and then the resection area gamma radiated. They never put him on anti-seizure meds, until he had a seizure nearly 7 months later. His brain MRI post seizure showed that he had no new lesions. The brain is a bizarre place. This is the same gentleman who had to switch from Keppra to a different anti-seizure med due to the side effects (dizziness, lethargy, etc). 72 years old, a former oncological surgeon… he had metastasis to liver and brain. He had 2 years of Pembro, and is now 6 months off treatment, and doing exceptionally well. His story is quite different than mine, but with the same favorable outcome. There is so much hope out there with these new treatment options.  : )

Have I already asked you what his tumor load is, other than the mets in the brain?

From what I have read, most adverse side effects will happen within the first few months. HOWEVER, with more and more people on the drug outside of trial patients now, we seem to be hearing differently. There are more stories like mine cropping up, where there is a cumulative build up effect. I went through the full treatment (4 rounds) of Ipi first, with no issues at all… well… there was the loss of my thyroid function, but a regular pill handles that. My 72 year old buddy made it through 2 rounds of Ipi and had such horrible cholitis, he stopped treatment and moved onto Pembro. Ipi did little for me. Stablizied one very small tumor in my left lung, but one in the right lung continued to grow, and the brain kept cropping up lesions. Pembro worked really well, and I was fairly side effect free until my 29th infusion (20 months). I had some fatigue a day or two after the infusions, and there was always managable irritable bowel issues. The joint pain and pancreatitis didn't set in until much later. My 72 year old buddy… no real issues with Pembro. Some irratable bowels, and a bit of fatigue, but overall, the two of us were out enjoying life. He was golfing and swimming. I was still working and riding my bicycle regularly. I almost felt as though we weren't "suffering" like most cancer patients do. Never lost hair, no weight loss, no gaunt look. My worst issues were prior to getting on Pembro. 

I'll keep thinking positive vibes for your dad to bounce back enough to get him and your mom over here to the States, where they can enjoy a larger support network with you.

Whole Brain Radiation can also cause some neurological deficit. Hopefully with the passage of time, IF that is the case, he will be able to work through some recovery. It is good news that his follow up scans were stable! it takes many months for treated brain lesions to dissipate, and some of them may never go away, but will remain inactive.

I have a friend who had a brain lesion surgically removed, and then the resection area gamma radiated. They never put him on anti-seizure meds, until he had a seizure nearly 7 months later. His brain MRI post seizure showed that he had no new lesions. The brain is a bizarre place. This is the same gentleman who had to switch from Keppra to a different anti-seizure med due to the side effects (dizziness, lethargy, etc). 72 years old, a former oncological surgeon… he had metastasis to liver and brain. He had 2 years of Pembro, and is now 6 months off treatment, and doing exceptionally well. His story is quite different than mine, but with the same favorable outcome. There is so much hope out there with these new treatment options.  : )

Have I already asked you what his tumor load is, other than the mets in the brain?

From what I have read, most adverse side effects will happen within the first few months. HOWEVER, with more and more people on the drug outside of trial patients now, we seem to be hearing differently. There are more stories like mine cropping up, where there is a cumulative build up effect. I went through the full treatment (4 rounds) of Ipi first, with no issues at all… well… there was the loss of my thyroid function, but a regular pill handles that. My 72 year old buddy made it through 2 rounds of Ipi and had such horrible cholitis, he stopped treatment and moved onto Pembro. Ipi did little for me. Stablizied one very small tumor in my left lung, but one in the right lung continued to grow, and the brain kept cropping up lesions. Pembro worked really well, and I was fairly side effect free until my 29th infusion (20 months). I had some fatigue a day or two after the infusions, and there was always managable irritable bowel issues. The joint pain and pancreatitis didn't set in until much later. My 72 year old buddy… no real issues with Pembro. Some irratable bowels, and a bit of fatigue, but overall, the two of us were out enjoying life. He was golfing and swimming. I was still working and riding my bicycle regularly. I almost felt as though we weren't "suffering" like most cancer patients do. Never lost hair, no weight loss, no gaunt look. My worst issues were prior to getting on Pembro. 

I'll keep thinking positive vibes for your dad to bounce back enough to get him and your mom over here to the States, where they can enjoy a larger support network with you.

Very encouraging that his tumor load is pretty much zero (in the body), and that he's doing crosswords and getting outside! Walking no less! That requires neurological balance… which is not terribly easy when your head feels in the fog! It sounds like his side effects may be related in part to the seizure, but also in part by the effect of the drugs they gave him to control the seizures and possible edema. 

On a related note, Jimmy Carter celebrated his 92nd birthday at a baseball game… kissing his wife over the "kiss cam". HA! Pembro cleared him too. One of the guys from our cycling club inquired about my oncologist when his 90 year old mom was diagnosed with melanoma brain mets. The docs here in my local town told her to go home and get her things in order. She was wheelchair bound until they got her on immunotherapy and a round of brain radiation. She enjoyed two more years of life… OUT of the wheelchair, until she passed from other causes. There is always hope.  : ) Even for those who aren't helped by Pembro… others continue to succeed on even newer research coming out. 

Glad to hear he is sounding better and better! I've never heard of having blood levels checked for the anti-seizure med levels. It sounds like a very good idea, particularly given the fact that we have to have blood labs done (CBC, CMP… etc) prior to every immunotherapy infusion anyway. I might inquire with my doc about that at my next visit. They currently have me on 1000 mg twice per day. At one point, I was at 500 twice per day, until I had some odd lip tingling. Personally, I'd like to drop the dose back down. I'm also wondering if this is a "for the rest of my life" thing, even when the brain begins to show a track record of "no new lesions". I'm not a fan of pills and their effect on other bodily organs/function… but then… I'm not a fan of risking a seizure while driving my car… soooooooo….

Thanks for the info on the blood lab possibility. I am definitely going to inquire about it. I know the irritated bowels that come as a side effect of some immunotherapies will affect the absorption and/or conversion of T4 to T3 (thyroid hormones). It makes sense that people might have some issues absorbing Keppra too… or any medication… vitamins… food… for that matter!

Glad to hear he is sounding better and better! I've never heard of having blood levels checked for the anti-seizure med levels. It sounds like a very good idea, particularly given the fact that we have to have blood labs done (CBC, CMP… etc) prior to every immunotherapy infusion anyway. I might inquire with my doc about that at my next visit. They currently have me on 1000 mg twice per day. At one point, I was at 500 twice per day, until I had some odd lip tingling. Personally, I'd like to drop the dose back down. I'm also wondering if this is a "for the rest of my life" thing, even when the brain begins to show a track record of "no new lesions". I'm not a fan of pills and their effect on other bodily organs/function… but then… I'm not a fan of risking a seizure while driving my car… soooooooo….

Thanks for the info on the blood lab possibility. I am definitely going to inquire about it. I know the irritated bowels that come as a side effect of some immunotherapies will affect the absorption and/or conversion of T4 to T3 (thyroid hormones). It makes sense that people might have some issues absorbing Keppra too… or any medication… vitamins… food… for that matter!

Glad to hear he is sounding better and better! I've never heard of having blood levels checked for the anti-seizure med levels. It sounds like a very good idea, particularly given the fact that we have to have blood labs done (CBC, CMP… etc) prior to every immunotherapy infusion anyway. I might inquire with my doc about that at my next visit. They currently have me on 1000 mg twice per day. At one point, I was at 500 twice per day, until I had some odd lip tingling. Personally, I'd like to drop the dose back down. I'm also wondering if this is a "for the rest of my life" thing, even when the brain begins to show a track record of "no new lesions". I'm not a fan of pills and their effect on other bodily organs/function… but then… I'm not a fan of risking a seizure while driving my car… soooooooo….

Thanks for the info on the blood lab possibility. I am definitely going to inquire about it. I know the irritated bowels that come as a side effect of some immunotherapies will affect the absorption and/or conversion of T4 to T3 (thyroid hormones). It makes sense that people might have some issues absorbing Keppra too… or any medication… vitamins… food… for that matter!

Very encouraging that his tumor load is pretty much zero (in the body), and that he's doing crosswords and getting outside! Walking no less! That requires neurological balance… which is not terribly easy when your head feels in the fog! It sounds like his side effects may be related in part to the seizure, but also in part by the effect of the drugs they gave him to control the seizures and possible edema. 

On a related note, Jimmy Carter celebrated his 92nd birthday at a baseball game… kissing his wife over the "kiss cam". HA! Pembro cleared him too. One of the guys from our cycling club inquired about my oncologist when his 90 year old mom was diagnosed with melanoma brain mets. The docs here in my local town told her to go home and get her things in order. She was wheelchair bound until they got her on immunotherapy and a round of brain radiation. She enjoyed two more years of life… OUT of the wheelchair, until she passed from other causes. There is always hope.  : ) Even for those who aren't helped by Pembro… others continue to succeed on even newer research coming out. 

Very encouraging that his tumor load is pretty much zero (in the body), and that he's doing crosswords and getting outside! Walking no less! That requires neurological balance… which is not terribly easy when your head feels in the fog! It sounds like his side effects may be related in part to the seizure, but also in part by the effect of the drugs they gave him to control the seizures and possible edema. 

On a related note, Jimmy Carter celebrated his 92nd birthday at a baseball game… kissing his wife over the "kiss cam". HA! Pembro cleared him too. One of the guys from our cycling club inquired about my oncologist when his 90 year old mom was diagnosed with melanoma brain mets. The docs here in my local town told her to go home and get her things in order. She was wheelchair bound until they got her on immunotherapy and a round of brain radiation. She enjoyed two more years of life… OUT of the wheelchair, until she passed from other causes. There is always hope.  : ) Even for those who aren't helped by Pembro… others continue to succeed on even newer research coming out. 

Hi Cathy! Tell your hubs to hang tough! Targeted brain radiation can clobber those mets, and the sooner he can get on Keytruda, the better.  It's a little terrifying that we stumble across brain lesions because of a seizure. Waiting for brain MRI results every few weeks can be crushing, because there seem to be little to no symptoms that those little creepers are lingering in your head! Well… until you have a seizure from the edema… yeeks!

Hi Cathy! Tell your hubs to hang tough! Targeted brain radiation can clobber those mets, and the sooner he can get on Keytruda, the better.  It's a little terrifying that we stumble across brain lesions because of a seizure. Waiting for brain MRI results every few weeks can be crushing, because there seem to be little to no symptoms that those little creepers are lingering in your head! Well… until you have a seizure from the edema… yeeks!

Thanks Katie!

I went on a round of antibiotics for the nose in August, but to no avail. It did make me feel better that I could rule out bacterial infection though. So, for now, I'm just diligently flushing my nose clean, to avoid any future bacterial issue from happening. If it's swollen nasal tissue, I don't want to leave any trapped fluids in there that will eventually infect. Yuck!

Funny thing… my right knee is also the one that has gone whack! My oncologist has put in for a referral to Rheum, we're just awaiting insurance approval. Thankfully, one of my best bicycling buddies has his own Physical Therapy office… sooooooo… compression wrap and edema massage are gratis! 😉  With your hubs and I following the same side effect patterns, I'll keep an eye on my left ankle next. HA!

Has he had any patches of vitiligo? I'm a pasty white woman to begin with, so seeing the even whiter areas is tough, but they're there. 

Thanks Katie!

I went on a round of antibiotics for the nose in August, but to no avail. It did make me feel better that I could rule out bacterial infection though. So, for now, I'm just diligently flushing my nose clean, to avoid any future bacterial issue from happening. If it's swollen nasal tissue, I don't want to leave any trapped fluids in there that will eventually infect. Yuck!

Funny thing… my right knee is also the one that has gone whack! My oncologist has put in for a referral to Rheum, we're just awaiting insurance approval. Thankfully, one of my best bicycling buddies has his own Physical Therapy office… sooooooo… compression wrap and edema massage are gratis! 😉  With your hubs and I following the same side effect patterns, I'll keep an eye on my left ankle next. HA!

Has he had any patches of vitiligo? I'm a pasty white woman to begin with, so seeing the even whiter areas is tough, but they're there. 

Thanks Katie!

I went on a round of antibiotics for the nose in August, but to no avail. It did make me feel better that I could rule out bacterial infection though. So, for now, I'm just diligently flushing my nose clean, to avoid any future bacterial issue from happening. If it's swollen nasal tissue, I don't want to leave any trapped fluids in there that will eventually infect. Yuck!

Funny thing… my right knee is also the one that has gone whack! My oncologist has put in for a referral to Rheum, we're just awaiting insurance approval. Thankfully, one of my best bicycling buddies has his own Physical Therapy office… sooooooo… compression wrap and edema massage are gratis! 😉  With your hubs and I following the same side effect patterns, I'll keep an eye on my left ankle next. HA!

Has he had any patches of vitiligo? I'm a pasty white woman to begin with, so seeing the even whiter areas is tough, but they're there. 

Ugh… progression… and not in the good sense. Sorry to hear that. I have read some reports that steroids don't have any impact on patient outcome percentages with Keytruda, but I'm still leary of them. 

Did you continue getting infusions while taking the pred?

Ugh… progression… and not in the good sense. Sorry to hear that. I have read some reports that steroids don't have any impact on patient outcome percentages with Keytruda, but I'm still leary of them. 

Did you continue getting infusions while taking the pred?

Ugh… progression… and not in the good sense. Sorry to hear that. I have read some reports that steroids don't have any impact on patient outcome percentages with Keytruda, but I'm still leary of them. 

Did you continue getting infusions while taking the pred?

Thanks Paul,

Yeah… I'm definitely a little on edge about systemic steroids, as is my oncologist. I did really well with very few and managable symptoms for the first 18 months on Keytruda… and then… the downhill slide. I know that the immune system response isn't as strong in the brain as the body. It is our own self defense mechanism to avoid brain swelling in a confined area. That makes me extra nervous about steroids, because my disease progression was primarily brain centric. I am not a fan of being risky with an area already lower on immune function. 

From what I have heard from yourself and others, it sounds like I'm probably going to try to work around the joint pain and swelling with local treatments. Systemic steroids may come into play if these autoimmune responses begin to threaten my life… but until then… I'd rather live at this level of discomfort than to begin the popcorn pattern of brain tumors cropping up….. pop pop pop… pop pop! **yikes**

Thanks Paul,

Yeah… I'm definitely a little on edge about systemic steroids, as is my oncologist. I did really well with very few and managable symptoms for the first 18 months on Keytruda… and then… the downhill slide. I know that the immune system response isn't as strong in the brain as the body. It is our own self defense mechanism to avoid brain swelling in a confined area. That makes me extra nervous about steroids, because my disease progression was primarily brain centric. I am not a fan of being risky with an area already lower on immune function. 

From what I have heard from yourself and others, it sounds like I'm probably going to try to work around the joint pain and swelling with local treatments. Systemic steroids may come into play if these autoimmune responses begin to threaten my life… but until then… I'd rather live at this level of discomfort than to begin the popcorn pattern of brain tumors cropping up….. pop pop pop… pop pop! **yikes**

Thanks Paul,

Yeah… I'm definitely a little on edge about systemic steroids, as is my oncologist. I did really well with very few and managable symptoms for the first 18 months on Keytruda… and then… the downhill slide. I know that the immune system response isn't as strong in the brain as the body. It is our own self defense mechanism to avoid brain swelling in a confined area. That makes me extra nervous about steroids, because my disease progression was primarily brain centric. I am not a fan of being risky with an area already lower on immune function. 

From what I have heard from yourself and others, it sounds like I'm probably going to try to work around the joint pain and swelling with local treatments. Systemic steroids may come into play if these autoimmune responses begin to threaten my life… but until then… I'd rather live at this level of discomfort than to begin the popcorn pattern of brain tumors cropping up….. pop pop pop… pop pop! **yikes**

Thanks for the info. I'll look into the nasal irrigation! If I can get some sleep again, that'd be worth every penny! Although the nasal inflammation isn't the most painful side effect, it is certainly the most annoying, affecting the taste of food, the ability to breath… and even swallow! There are times that my nose is so sealed off, no air can go in other than through my mouth. Soooooo… when I try to swallow, it's like attempting to pour water out of a bottle without an air intake vent. Argh!

Maybe I should be using this as an excuse to get to the beach more often. ha! 😉  I could inhale salt air for free, and the ice cold water we have here would serve nicely for some "cryotherapy" on the swollen knee. Hmmmmmm.

Thanks for the info. I'll look into the nasal irrigation! If I can get some sleep again, that'd be worth every penny! Although the nasal inflammation isn't the most painful side effect, it is certainly the most annoying, affecting the taste of food, the ability to breath… and even swallow! There are times that my nose is so sealed off, no air can go in other than through my mouth. Soooooo… when I try to swallow, it's like attempting to pour water out of a bottle without an air intake vent. Argh!

Maybe I should be using this as an excuse to get to the beach more often. ha! 😉  I could inhale salt air for free, and the ice cold water we have here would serve nicely for some "cryotherapy" on the swollen knee. Hmmmmmm.

Thanks for the info. I'll look into the nasal irrigation! If I can get some sleep again, that'd be worth every penny! Although the nasal inflammation isn't the most painful side effect, it is certainly the most annoying, affecting the taste of food, the ability to breath… and even swallow! There are times that my nose is so sealed off, no air can go in other than through my mouth. Soooooo… when I try to swallow, it's like attempting to pour water out of a bottle without an air intake vent. Argh!

Maybe I should be using this as an excuse to get to the beach more often. ha! 😉  I could inhale salt air for free, and the ice cold water we have here would serve nicely for some "cryotherapy" on the swollen knee. Hmmmmmm.

Thanks Celeste,

I'll check for posts by Jubes. I have had the pancreatic issue. Thankfully, with cessation of the infusions, my enzymes balanced out on their own again. My thyroid is long shot. I have Ipi to thank for that, although Pembro did further the issue, and my synthroid dosage was on constant rise until last month! That may have been more of a conversion problem from T3 to T4 due to the irritated bowels. It's been almost two years of researching as new issues cropped up. 

I was on pembro since the first week of Nov 2014 (immediately following FDA approval). I made it 20 months (29 rounds) before the pancreatic problems had me wanting to take a break. My CT's show that my body has been NED since January 2015. My brain has one 5mm lesion remaining…. it has been treated with gamma, we're just waiting for it to melt away. Basically, I have no reason to continue pembro infusions unless my brain crops up any unwanted new meat. Having had my last infusion in early July, I was hoping to see these autoimmune side effects taper away… and they just aren't. 

I'm in uncharted territory. Now we have to find my individual balance of what my body can handle in adverse immuno effects, versus my brain's need for control… which (in my personal case) pembro has done quite well. 

Thanks for the blog link! I love new reading material!  : )

Thanks Celeste,

I'll check for posts by Jubes. I have had the pancreatic issue. Thankfully, with cessation of the infusions, my enzymes balanced out on their own again. My thyroid is long shot. I have Ipi to thank for that, although Pembro did further the issue, and my synthroid dosage was on constant rise until last month! That may have been more of a conversion problem from T3 to T4 due to the irritated bowels. It's been almost two years of researching as new issues cropped up. 

I was on pembro since the first week of Nov 2014 (immediately following FDA approval). I made it 20 months (29 rounds) before the pancreatic problems had me wanting to take a break. My CT's show that my body has been NED since January 2015. My brain has one 5mm lesion remaining…. it has been treated with gamma, we're just waiting for it to melt away. Basically, I have no reason to continue pembro infusions unless my brain crops up any unwanted new meat. Having had my last infusion in early July, I was hoping to see these autoimmune side effects taper away… and they just aren't. 

I'm in uncharted territory. Now we have to find my individual balance of what my body can handle in adverse immuno effects, versus my brain's need for control… which (in my personal case) pembro has done quite well. 

Thanks for the blog link! I love new reading material!  : )

Thanks Celeste,

I'll check for posts by Jubes. I have had the pancreatic issue. Thankfully, with cessation of the infusions, my enzymes balanced out on their own again. My thyroid is long shot. I have Ipi to thank for that, although Pembro did further the issue, and my synthroid dosage was on constant rise until last month! That may have been more of a conversion problem from T3 to T4 due to the irritated bowels. It's been almost two years of researching as new issues cropped up. 

I was on pembro since the first week of Nov 2014 (immediately following FDA approval). I made it 20 months (29 rounds) before the pancreatic problems had me wanting to take a break. My CT's show that my body has been NED since January 2015. My brain has one 5mm lesion remaining…. it has been treated with gamma, we're just waiting for it to melt away. Basically, I have no reason to continue pembro infusions unless my brain crops up any unwanted new meat. Having had my last infusion in early July, I was hoping to see these autoimmune side effects taper away… and they just aren't. 

I'm in uncharted territory. Now we have to find my individual balance of what my body can handle in adverse immuno effects, versus my brain's need for control… which (in my personal case) pembro has done quite well. 

Thanks for the blog link! I love new reading material!  : )

Yes! It is definitely worse at night! apo-mometasone…… I will be looking into that!

Thanks Ed!

Yes! It is definitely worse at night! apo-mometasone…… I will be looking into that!

Thanks Ed!

Yes! It is definitely worse at night! apo-mometasone…… I will be looking into that!

Thanks Ed!