?Your Experience on Pembrolizumab treatment?

As you probably know the permanent tingling numbness to hands and feet is probably an indication of damage to the central nervous system of the spine probably the spinal cord. Very serious situation. I know cause that's what I have to deal with although my tingling and spasms come and go so not permanent yet. Also mine pretty much disappeared when I was on the taf/mek combo pills. Now that I've been on pembro since May 21st and especially now that I'm getting radiation again to the spine they are getting less often again.  My first known tumor was in the t10 although the first pet scan showed more. Currently I'm going through radiation to the t12 and l2. So I assume you also know he needs to be careful when he moves. Walking is great I was told. I just walk slow though cause any faster causes my back to hurt. Also be careful to get up properly, do not twist, turn or lift. Basically I can only lift about 2 pounds but that's cause of the spinal cord damage. But make sure to walk often. It is very good for the circulation and much needed. Couple miles or hours a day is enough just do it every day and break it up during the day. At least that is my opinion. But don't overexert just to get it in.

As far as the nutrition. Absolutely. Exactly what he needs to feed his body to fight this stupid disease. In my opinion anyway.

As far as PD1 yes it can cause the tumors to swell just like ipi. If you choose to do it make sure you get a scan before the 5th dose. This should be soon enough to prove if the pd1 pathway is working. I'm not sure how that swelling will affect his spine. For me the tumors are in the bone and some include soft tissue involvment. Yes last February they said if that t10 tumor grew a hairs breath in a certain direction I would be paralyzed. But that was from the disease not the ipi that I had completed. They also said all that twist, turn, lift stuff and I would be paralyzed. Anyone else with that much spinal cord damage all at once would already be paralyzed. 2nd radiation to the t10 shrank the soft tissue involvment enough so that didn't happen thank God.

So yes be very very careful. Wait and see is never a good option in my opinion but in this case I can see why the doc is saying it if the only treatment choice is immunotherapy. He basically needs a treatment that does not cause swelling otherwise he risks paralysis.

I assume he is BRAF negative? If not maybe the taf/mek combo would be better. It is my understanding they do not cause swelling.

Also I assume he is already on a bone strengthener like zometa or xgeva. If not he needs to be on at least xgeva immediately and get it every 4 to 5 weeks. zometa I think some have said is every 3 months but I only did it once cause of a bad reaction to it. What these do is strengthen the bone and can even rebuild it I've heard others say.

Dunno if any of that helps. Just my thoughts and experience so far. Good luck to you folks.

Artie

As you probably know the permanent tingling numbness to hands and feet is probably an indication of damage to the central nervous system of the spine probably the spinal cord. Very serious situation. I know cause that's what I have to deal with although my tingling and spasms come and go so not permanent yet. Also mine pretty much disappeared when I was on the taf/mek combo pills. Now that I've been on pembro since May 21st and especially now that I'm getting radiation again to the spine they are getting less often again.  My first known tumor was in the t10 although the first pet scan showed more. Currently I'm going through radiation to the t12 and l2. So I assume you also know he needs to be careful when he moves. Walking is great I was told. I just walk slow though cause any faster causes my back to hurt. Also be careful to get up properly, do not twist, turn or lift. Basically I can only lift about 2 pounds but that's cause of the spinal cord damage. But make sure to walk often. It is very good for the circulation and much needed. Couple miles or hours a day is enough just do it every day and break it up during the day. At least that is my opinion. But don't overexert just to get it in.

As far as the nutrition. Absolutely. Exactly what he needs to feed his body to fight this stupid disease. In my opinion anyway.

As far as PD1 yes it can cause the tumors to swell just like ipi. If you choose to do it make sure you get a scan before the 5th dose. This should be soon enough to prove if the pd1 pathway is working. I'm not sure how that swelling will affect his spine. For me the tumors are in the bone and some include soft tissue involvment. Yes last February they said if that t10 tumor grew a hairs breath in a certain direction I would be paralyzed. But that was from the disease not the ipi that I had completed. They also said all that twist, turn, lift stuff and I would be paralyzed. Anyone else with that much spinal cord damage all at once would already be paralyzed. 2nd radiation to the t10 shrank the soft tissue involvment enough so that didn't happen thank God.

So yes be very very careful. Wait and see is never a good option in my opinion but in this case I can see why the doc is saying it if the only treatment choice is immunotherapy. He basically needs a treatment that does not cause swelling otherwise he risks paralysis.

I assume he is BRAF negative? If not maybe the taf/mek combo would be better. It is my understanding they do not cause swelling.

Also I assume he is already on a bone strengthener like zometa or xgeva. If not he needs to be on at least xgeva immediately and get it every 4 to 5 weeks. zometa I think some have said is every 3 months but I only did it once cause of a bad reaction to it. What these do is strengthen the bone and can even rebuild it I've heard others say.

Dunno if any of that helps. Just my thoughts and experience so far. Good luck to you folks.

Artie

As you probably know the permanent tingling numbness to hands and feet is probably an indication of damage to the central nervous system of the spine probably the spinal cord. Very serious situation. I know cause that's what I have to deal with although my tingling and spasms come and go so not permanent yet. Also mine pretty much disappeared when I was on the taf/mek combo pills. Now that I've been on pembro since May 21st and especially now that I'm getting radiation again to the spine they are getting less often again.  My first known tumor was in the t10 although the first pet scan showed more. Currently I'm going through radiation to the t12 and l2. So I assume you also know he needs to be careful when he moves. Walking is great I was told. I just walk slow though cause any faster causes my back to hurt. Also be careful to get up properly, do not twist, turn or lift. Basically I can only lift about 2 pounds but that's cause of the spinal cord damage. But make sure to walk often. It is very good for the circulation and much needed. Couple miles or hours a day is enough just do it every day and break it up during the day. At least that is my opinion. But don't overexert just to get it in.

As far as the nutrition. Absolutely. Exactly what he needs to feed his body to fight this stupid disease. In my opinion anyway.

As far as PD1 yes it can cause the tumors to swell just like ipi. If you choose to do it make sure you get a scan before the 5th dose. This should be soon enough to prove if the pd1 pathway is working. I'm not sure how that swelling will affect his spine. For me the tumors are in the bone and some include soft tissue involvment. Yes last February they said if that t10 tumor grew a hairs breath in a certain direction I would be paralyzed. But that was from the disease not the ipi that I had completed. They also said all that twist, turn, lift stuff and I would be paralyzed. Anyone else with that much spinal cord damage all at once would already be paralyzed. 2nd radiation to the t10 shrank the soft tissue involvment enough so that didn't happen thank God.

So yes be very very careful. Wait and see is never a good option in my opinion but in this case I can see why the doc is saying it if the only treatment choice is immunotherapy. He basically needs a treatment that does not cause swelling otherwise he risks paralysis.

I assume he is BRAF negative? If not maybe the taf/mek combo would be better. It is my understanding they do not cause swelling.

Also I assume he is already on a bone strengthener like zometa or xgeva. If not he needs to be on at least xgeva immediately and get it every 4 to 5 weeks. zometa I think some have said is every 3 months but I only did it once cause of a bad reaction to it. What these do is strengthen the bone and can even rebuild it I've heard others say.

Dunno if any of that helps. Just my thoughts and experience so far. Good luck to you folks.

Artie

I'd definitely make an appointment to at least get a second opinion at UCSF. That's where I've been taking my father, and the doctors are fantastic. That said, under normal circumstances, I wouldn't hesitate to tell you to just start the Keytruda at Kaiser because from what they told us at UCSF, the side effects are very mild for most people, so most people would be fine on it with a regular oncologist; however, my father's tumors are on his legs, lungs and hipbone, not near the spine — in your shoes I'm sure I would also feel much safer at a melanoma clinic.

You are very lucky that the doctors at Kaiser are willing to forego the Ipi requirement because UCSF is requiring my dad to do the FDA-required two rounds before starting Keytruda. He was scheduled for one round of Ipi before starting Pembro, and then the FDA approval came in on the Thursday before his Monday infusion. Good news for the melanoma world, bad news for us.

Also, check to see if your insurance might cover you anyway at UCSF. I have Kaiser and know that they'll cover cardio surgeries at one of our local speciality hospitals with a referral. You might be able to make the argument that your husband needs a melanoma specialist. And you wouldn't have to do the clinical trial there; you could do Keytruda.

Hang in there. I know what a rollercoaster ride this is.

I'd definitely make an appointment to at least get a second opinion at UCSF. That's where I've been taking my father, and the doctors are fantastic. That said, under normal circumstances, I wouldn't hesitate to tell you to just start the Keytruda at Kaiser because from what they told us at UCSF, the side effects are very mild for most people, so most people would be fine on it with a regular oncologist; however, my father's tumors are on his legs, lungs and hipbone, not near the spine — in your shoes I'm sure I would also feel much safer at a melanoma clinic.

You are very lucky that the doctors at Kaiser are willing to forego the Ipi requirement because UCSF is requiring my dad to do the FDA-required two rounds before starting Keytruda. He was scheduled for one round of Ipi before starting Pembro, and then the FDA approval came in on the Thursday before his Monday infusion. Good news for the melanoma world, bad news for us.

Also, check to see if your insurance might cover you anyway at UCSF. I have Kaiser and know that they'll cover cardio surgeries at one of our local speciality hospitals with a referral. You might be able to make the argument that your husband needs a melanoma specialist. And you wouldn't have to do the clinical trial there; you could do Keytruda.

Hang in there. I know what a rollercoaster ride this is.

I'd definitely make an appointment to at least get a second opinion at UCSF. That's where I've been taking my father, and the doctors are fantastic. That said, under normal circumstances, I wouldn't hesitate to tell you to just start the Keytruda at Kaiser because from what they told us at UCSF, the side effects are very mild for most people, so most people would be fine on it with a regular oncologist; however, my father's tumors are on his legs, lungs and hipbone, not near the spine — in your shoes I'm sure I would also feel much safer at a melanoma clinic.

You are very lucky that the doctors at Kaiser are willing to forego the Ipi requirement because UCSF is requiring my dad to do the FDA-required two rounds before starting Keytruda. He was scheduled for one round of Ipi before starting Pembro, and then the FDA approval came in on the Thursday before his Monday infusion. Good news for the melanoma world, bad news for us.

Also, check to see if your insurance might cover you anyway at UCSF. I have Kaiser and know that they'll cover cardio surgeries at one of our local speciality hospitals with a referral. You might be able to make the argument that your husband needs a melanoma specialist. And you wouldn't have to do the clinical trial there; you could do Keytruda.

Hang in there. I know what a rollercoaster ride this is.