Is 2 days after radiation too soon for an MRI and PET/CT scans?

I think the long distance onc doc talked to his colleauges and wanted to only allow 6 weeks to get the radiation done and then scan. I did not miss any doses of pd1 yet though. He continued with them. Just that if the scans on the 24th show it's in my brain then no pd1.

Yeah my local onc doc would need enough time to get it through the insurance. That's the only delay I could think of. I would pay for a dose myself though cause it is worth every penny to me but I'm not sure if the hospital would allow that although they might cause they mentioned it last year when I started zel about maybe buying a week or so of pills myself but the insurance went through in the same day so I didn't have to.

Hedge my bets and keep both options open. Hmm. Hadn't thought of that. Thanks kyle.

I think the long distance onc doc talked to his colleauges and wanted to only allow 6 weeks to get the radiation done and then scan. I did not miss any doses of pd1 yet though. He continued with them. Just that if the scans on the 24th show it's in my brain then no pd1.

Yeah my local onc doc would need enough time to get it through the insurance. That's the only delay I could think of. I would pay for a dose myself though cause it is worth every penny to me but I'm not sure if the hospital would allow that although they might cause they mentioned it last year when I started zel about maybe buying a week or so of pills myself but the insurance went through in the same day so I didn't have to.

Hedge my bets and keep both options open. Hmm. Hadn't thought of that. Thanks kyle.

I think the long distance onc doc talked to his colleauges and wanted to only allow 6 weeks to get the radiation done and then scan. I did not miss any doses of pd1 yet though. He continued with them. Just that if the scans on the 24th show it's in my brain then no pd1.

Yeah my local onc doc would need enough time to get it through the insurance. That's the only delay I could think of. I would pay for a dose myself though cause it is worth every penny to me but I'm not sure if the hospital would allow that although they might cause they mentioned it last year when I started zel about maybe buying a week or so of pills myself but the insurance went through in the same day so I didn't have to.

Hedge my bets and keep both options open. Hmm. Hadn't thought of that. Thanks kyle.

Thanks Joe. The PD1 trial is Merck's Extended Access Program which leaves all scans up to the doctor. Now it has been FDA approved I should be able to transition out of that trial I would think.

I'm also baffled why the long distance onc doc wants to scan so soon. It makes no sense to me. Basically all he told me is if the scans show anything in the brain he cannot continue with the PD1. His doctor's notes on 9/3 which was my latest PD1 dose say:

"He had an interval PET scan that was done earlier in August, and the concern was for a mixed response, which needed reevaluation which would be done after two subsequent cycles which would be after today's visit before the next cycle when he comes in. This would include a PET scan of his body including an MRI of his brain/skull given the increase in the size of the scalp metastases. Of note, we looked into the possibilities of different treatment options within the trial, and he could get palliative radiation to the skull lesion. He already had been seeing radiation oncology back at home so I recommended that he be seen by radiation oncology at home, for which he
is going to start radiation coming Monday. Additionally, the radiation oncologist back at home would also like to give radiation to one of the lesions in his spine which is very reasonable and is allowed per the protocol. We will look forward to the scans next visit to determine further treatment on the trial."

The notes also say:

"is in today for ongoing immunotherapy for the melanoma in the form of the anti-PD-1 immunotherapy. Overall, he is tolerating the therapy well and after four cycles of therapy, he had a mixed response and after extensive discussion with our melanoma colleagues, the plan was to do two more cycles with a close interval followup with another PET-CT scan; also in the meanwhile, get the parietal lesion on his scalp radiated given the close proximity to the brain parenchyma and also as allowed by the trial, he will also get palliative radiation to one of the spine lesions. We will have to decide on the next visit as to how
the scans look to determine further eligibility on the trial. If he were to come off the trial resuming the combination dabrafenib/trametinib would be one option. The other option would be to consider any other clinical trial as long as there are no brain metastases. Currently, there are no symptoms or anything suggesting as such, and we will have to see the follow-up interval imaging to see what the patient would be eligible for."

I also don't know what he meant by palliative. I don't give a care about the pain. I want the radiation to shrink the tumors and the pd1 to take over shrinking them which is what the radiation doc says his plan is. So that part of his report did not make sense to me either. Also it's really 2 spine spots instead of 1.

When I questioned him on the dafrabenib/trametinib combo idea he said well almost everything was shrinking when I was on it. That is not true so I had to refresh his memory. Almost everything stayed the same. The one in my shoulder grew by a huge amount. A brand new one in my collar showed up and grew a lot. Only 3 in my spine may have shrank by a small amount. So in my opinion PD1 has been way better for me than the combo pills. With it over a dozen are shrinking, 4 stayed the same, 5 grew. But of those 5 the left shoulder shows it is being destroyed from the inside out. 3 we are radiating. So that just leaves the left collar which visibily has stayed the same.

So I really can't understand why he wants to scan so soon. I hate scans anyway. They always seem to take a lot out of me probably because they do them too often. My local onc doc finally changed to pretty much do a every 3 month pet/ct which didn't bother me as much.

So if he does these scans so soon it sounds like he won't really be able to tell anything from the 3 radiated spots. He will see if the brain is still clear which it was on the 8/21 scan so why do it again just barely over a month later makes no sense to me.

I guess my biggest concern is I will already be weakened by the radiation, then the long trip up there, then weakened by the scans. then after all that he decides to quit the PD1 and puts me back on the combo pills. Then everything gets worse for me instead of better.

On the other hand I can call my local onc doc and get setup to get the PD1 here on 9/24 and from then on and maybe go to the long distance onc doc later if he will still see me that is. If it wasn't for the long distance onc doc I wouldn't even be getting the radiation which is a great thing. In my opinion it should have been done last spring when I was on the pills but that was with my local onc doc who never mentioned this head issue although his feb mri showed it pressing on the dura then too. I'm just really lucky it hasn't gone further.

With all that I'm still unclear why he wants to scan so soon and I'm not sure what to do.

Artie

Not sure I understood his answer but he was fine setting up the PD1 local. So that is already setup too except a day early on 9/23. He does want to make sure I get scans soon to make sure the tumors are not growing. He does not want to keep me on PD1 if tumors are growing was what he said. So when I talk to my radiation doc monday I'll ask him when would be the best time. Probably 2 months I guess would be a good answer. 6 weeks at the earliest from past radiation experience although they always decided not to rescan those 2 times.

So all is good. Radiation going on. I get a couple more doses of PD1 and voila scans are hopefully going to show for the first time ever that everything is shrinking. That's the plan anyway and God willing it will happen.

Thanks.

Artie

Not sure I understood his answer but he was fine setting up the PD1 local. So that is already setup too except a day early on 9/23. He does want to make sure I get scans soon to make sure the tumors are not growing. He does not want to keep me on PD1 if tumors are growing was what he said. So when I talk to my radiation doc monday I'll ask him when would be the best time. Probably 2 months I guess would be a good answer. 6 weeks at the earliest from past radiation experience although they always decided not to rescan those 2 times.

So all is good. Radiation going on. I get a couple more doses of PD1 and voila scans are hopefully going to show for the first time ever that everything is shrinking. That's the plan anyway and God willing it will happen.

Thanks.

Artie

Not sure I understood his answer but he was fine setting up the PD1 local. So that is already setup too except a day early on 9/23. He does want to make sure I get scans soon to make sure the tumors are not growing. He does not want to keep me on PD1 if tumors are growing was what he said. So when I talk to my radiation doc monday I'll ask him when would be the best time. Probably 2 months I guess would be a good answer. 6 weeks at the earliest from past radiation experience although they always decided not to rescan those 2 times.

So all is good. Radiation going on. I get a couple more doses of PD1 and voila scans are hopefully going to show for the first time ever that everything is shrinking. That's the plan anyway and God willing it will happen.

Thanks.

Artie

Thanks Joe. The PD1 trial is Merck's Extended Access Program which leaves all scans up to the doctor. Now it has been FDA approved I should be able to transition out of that trial I would think.

I'm also baffled why the long distance onc doc wants to scan so soon. It makes no sense to me. Basically all he told me is if the scans show anything in the brain he cannot continue with the PD1. His doctor's notes on 9/3 which was my latest PD1 dose say:

"He had an interval PET scan that was done earlier in August, and the concern was for a mixed response, which needed reevaluation which would be done after two subsequent cycles which would be after today's visit before the next cycle when he comes in. This would include a PET scan of his body including an MRI of his brain/skull given the increase in the size of the scalp metastases. Of note, we looked into the possibilities of different treatment options within the trial, and he could get palliative radiation to the skull lesion. He already had been seeing radiation oncology back at home so I recommended that he be seen by radiation oncology at home, for which he
is going to start radiation coming Monday. Additionally, the radiation oncologist back at home would also like to give radiation to one of the lesions in his spine which is very reasonable and is allowed per the protocol. We will look forward to the scans next visit to determine further treatment on the trial."

The notes also say:

"is in today for ongoing immunotherapy for the melanoma in the form of the anti-PD-1 immunotherapy. Overall, he is tolerating the therapy well and after four cycles of therapy, he had a mixed response and after extensive discussion with our melanoma colleagues, the plan was to do two more cycles with a close interval followup with another PET-CT scan; also in the meanwhile, get the parietal lesion on his scalp radiated given the close proximity to the brain parenchyma and also as allowed by the trial, he will also get palliative radiation to one of the spine lesions. We will have to decide on the next visit as to how
the scans look to determine further eligibility on the trial. If he were to come off the trial resuming the combination dabrafenib/trametinib would be one option. The other option would be to consider any other clinical trial as long as there are no brain metastases. Currently, there are no symptoms or anything suggesting as such, and we will have to see the follow-up interval imaging to see what the patient would be eligible for."

I also don't know what he meant by palliative. I don't give a care about the pain. I want the radiation to shrink the tumors and the pd1 to take over shrinking them which is what the radiation doc says his plan is. So that part of his report did not make sense to me either. Also it's really 2 spine spots instead of 1.

When I questioned him on the dafrabenib/trametinib combo idea he said well almost everything was shrinking when I was on it. That is not true so I had to refresh his memory. Almost everything stayed the same. The one in my shoulder grew by a huge amount. A brand new one in my collar showed up and grew a lot. Only 3 in my spine may have shrank by a small amount. So in my opinion PD1 has been way better for me than the combo pills. With it over a dozen are shrinking, 4 stayed the same, 5 grew. But of those 5 the left shoulder shows it is being destroyed from the inside out. 3 we are radiating. So that just leaves the left collar which visibily has stayed the same.

So I really can't understand why he wants to scan so soon. I hate scans anyway. They always seem to take a lot out of me probably because they do them too often. My local onc doc finally changed to pretty much do a every 3 month pet/ct which didn't bother me as much.

So if he does these scans so soon it sounds like he won't really be able to tell anything from the 3 radiated spots. He will see if the brain is still clear which it was on the 8/21 scan so why do it again just barely over a month later makes no sense to me.

I guess my biggest concern is I will already be weakened by the radiation, then the long trip up there, then weakened by the scans. then after all that he decides to quit the PD1 and puts me back on the combo pills. Then everything gets worse for me instead of better.

On the other hand I can call my local onc doc and get setup to get the PD1 here on 9/24 and from then on and maybe go to the long distance onc doc later if he will still see me that is. If it wasn't for the long distance onc doc I wouldn't even be getting the radiation which is a great thing. In my opinion it should have been done last spring when I was on the pills but that was with my local onc doc who never mentioned this head issue although his feb mri showed it pressing on the dura then too. I'm just really lucky it hasn't gone further.

With all that I'm still unclear why he wants to scan so soon and I'm not sure what to do.

Artie

Thanks Joe. The PD1 trial is Merck's Extended Access Program which leaves all scans up to the doctor. Now it has been FDA approved I should be able to transition out of that trial I would think.

I'm also baffled why the long distance onc doc wants to scan so soon. It makes no sense to me. Basically all he told me is if the scans show anything in the brain he cannot continue with the PD1. His doctor's notes on 9/3 which was my latest PD1 dose say:

"He had an interval PET scan that was done earlier in August, and the concern was for a mixed response, which needed reevaluation which would be done after two subsequent cycles which would be after today's visit before the next cycle when he comes in. This would include a PET scan of his body including an MRI of his brain/skull given the increase in the size of the scalp metastases. Of note, we looked into the possibilities of different treatment options within the trial, and he could get palliative radiation to the skull lesion. He already had been seeing radiation oncology back at home so I recommended that he be seen by radiation oncology at home, for which he
is going to start radiation coming Monday. Additionally, the radiation oncologist back at home would also like to give radiation to one of the lesions in his spine which is very reasonable and is allowed per the protocol. We will look forward to the scans next visit to determine further treatment on the trial."

The notes also say:

"is in today for ongoing immunotherapy for the melanoma in the form of the anti-PD-1 immunotherapy. Overall, he is tolerating the therapy well and after four cycles of therapy, he had a mixed response and after extensive discussion with our melanoma colleagues, the plan was to do two more cycles with a close interval followup with another PET-CT scan; also in the meanwhile, get the parietal lesion on his scalp radiated given the close proximity to the brain parenchyma and also as allowed by the trial, he will also get palliative radiation to one of the spine lesions. We will have to decide on the next visit as to how
the scans look to determine further eligibility on the trial. If he were to come off the trial resuming the combination dabrafenib/trametinib would be one option. The other option would be to consider any other clinical trial as long as there are no brain metastases. Currently, there are no symptoms or anything suggesting as such, and we will have to see the follow-up interval imaging to see what the patient would be eligible for."

I also don't know what he meant by palliative. I don't give a care about the pain. I want the radiation to shrink the tumors and the pd1 to take over shrinking them which is what the radiation doc says his plan is. So that part of his report did not make sense to me either. Also it's really 2 spine spots instead of 1.

When I questioned him on the dafrabenib/trametinib combo idea he said well almost everything was shrinking when I was on it. That is not true so I had to refresh his memory. Almost everything stayed the same. The one in my shoulder grew by a huge amount. A brand new one in my collar showed up and grew a lot. Only 3 in my spine may have shrank by a small amount. So in my opinion PD1 has been way better for me than the combo pills. With it over a dozen are shrinking, 4 stayed the same, 5 grew. But of those 5 the left shoulder shows it is being destroyed from the inside out. 3 we are radiating. So that just leaves the left collar which visibily has stayed the same.

So I really can't understand why he wants to scan so soon. I hate scans anyway. They always seem to take a lot out of me probably because they do them too often. My local onc doc finally changed to pretty much do a every 3 month pet/ct which didn't bother me as much.

So if he does these scans so soon it sounds like he won't really be able to tell anything from the 3 radiated spots. He will see if the brain is still clear which it was on the 8/21 scan so why do it again just barely over a month later makes no sense to me.

I guess my biggest concern is I will already be weakened by the radiation, then the long trip up there, then weakened by the scans. then after all that he decides to quit the PD1 and puts me back on the combo pills. Then everything gets worse for me instead of better.

On the other hand I can call my local onc doc and get setup to get the PD1 here on 9/24 and from then on and maybe go to the long distance onc doc later if he will still see me that is. If it wasn't for the long distance onc doc I wouldn't even be getting the radiation which is a great thing. In my opinion it should have been done last spring when I was on the pills but that was with my local onc doc who never mentioned this head issue although his feb mri showed it pressing on the dura then too. I'm just really lucky it hasn't gone further.

With all that I'm still unclear why he wants to scan so soon and I'm not sure what to do.

Artie