Bad News please advise

Hi – I’d check on gamma knife/SRS for the two new mets ( assume you’re talking about brain mets appearing on MRI). My husband has also been on tafinlar for 4+ years with brain mets as the only progression. He has had multiple gamma knife radiation treatments during this time period. Not the solution we want but better than the alternative. He’s back on Keytruda along with tafinlar and we hope he can tolerate it better this time. Hope you are able to find some options. Take care. 

Ann

Dear Macke,

I have been treated at Georgetown, not by Dr Atkins, but the team there is good. Just because he had to prescribe interferon in 2013 does not mean he will prescribe that now, he is smart (and is fully aware of the new options). And a lot has changed since then.

What is Dr. Atkins suggesting? I would guess immunotherapy, maybe SRS too if these are brain mets. I would wait and try to understand his proposal first, and use info from Celeste’s blog and this board to question it. Then ask for a second opinion. I went to Dr Lipson at Hopkins Sibley – they refer patients to each other, you may want to go for bigger stars. In my case Dr Lipson came back with a different approach, one my georgetown team had mentioned before but had leaned against I think becuase they assumed insurance would deny. BUt in the end insurance approved, unfortunately neither gtown nor hopkins could implement, and i am now at washington hospital centre.

my point is to check out what dr atkins thinks, think about it or post it here, then they should also be open to second opinions too. And as celeste will no doubt post soon, a lot has changed since 2013 and, while its still scary, very mich for the better!

good luck and keep us updated

i am in gtown every week for chapel and every two weeks for bloodwork!

Mark

Yes – I dont know him but I think he was good. While you should probably seek a second opinion anyway, I didnt want you to rush to a second opinion, because his first opinion might be pretty good. so i thought you should slow down a little. Find out how thnigs are,

both lesions seem small which is good, are they resectable? If so, then great. Is that it or can he offer adjuvant therapy now, such as nivo or keytruda?

Are they harder to remove? If so then can you try immunotherapy ipi/nivo or nivo or keytruda? Or does he have a clinical trial? If not, can he point you to a clinical trial? Others on the board may be able to help with this once you share more info and after your meeting with dr atkins

i think you just need to go to dr atkins with the right questoins. Others have better ones than mine. Even if you dont get it rioght, let the answers sink in, see him again for clarity, then maybe seek a second opinion. I did rhis twice – the first time it did not change my mind but made me aware of how carreful to be when on ipi; the second time it made us chanfe our minds and reconsider an option that we had implocotly discarded.

have a good meeting and hope that you have caught these early and he has sime good recommendatoins

good luck Mark

I second BrianP on Dr. Lipson. Have used him for second opinion twice!

First time we decided against his advice – even so, the talk we had was really useful, he was very clear and helpful, and his warning about watching carefully for possible side effects from ipi proved prescient and explained to me why overseas travel would be difficult. Hearing the same analysis a second time round but presented a little differently made it much easier to understand what i was doing.

Second time we ended up taking his advice and my doctors tried an option they had considered but put aside. i was a little reluctant to involve him again, but am very glad i did and would definitely seem him again if i have to face choices. Also Dr Lipson sees patients at Sibley once a week, so its really convenient.

Then, as Celeste mentions, you have the big dog (i hope not mad dog!) options too – but see Atkins and Lipson first, then see if the big dogs are needed.

Hope your consult tomorrow goes well

Mark