May need a new plan

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kylez
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May need a new plan

Post by kylez » Thu Mar 28, 2019 2:23 pm

I had another new brain met treated with Gamma Knife last week. After no brain mets since 2011, I've had 3 in the last year. Starting to worry that the treatment is no longer working, at least for brain mets. This one was sticking out into my left lateral ventricle and was 1.8cm the day of treatment.

I'm on the combo right now. Saw my oncologist yesterday. The next decision point is getting PET/CT results which will be next week. I have not had any mets in my body since 2015 or early 2016. If a new one is found in my body, that would open up a few treatment options. If not, less choices. Wondering what cancer center might be a good place to get another opinion on any additional possible treatments.

Thanks,
Kyle

Catherine Poole
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Joined: Wed Jan 02, 2008 12:09 am

Re: May need a new plan

Post by Catherine Poole » Fri Mar 29, 2019 7:42 am

Kyle,
I am so sorry to hear this. Where do you go now? I would head to where there is the highest activity of research. In my opinion that would be Mass General and its affiliates (Harvard, Brigham Womens) or to UCLA to see Toni Ribas. Keith Flaherty is quite brilliant at Mass General and definitely worth the trip. Then you may also want to check out Jedd Wolchok at Sloan Kettering.
I hope this helps you. I know many are trying the triple therapies. Are you BRAF positive or negative?
Catherine M. Poole, President/Founder
Melanoma International Foundation

kylez
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Joined: Sat Jul 16, 2011 1:10 am
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Re: May need a new plan

Post by kylez » Sat Mar 30, 2019 12:43 am

It's wild type BRAF. The mutations from long ago when this started in my lungs are NRAS G12A and wild-type BRAF G466E.

Re: triple therapy, my oncologist mentioned one possibility, adding a VEGF inhibitor whose goal is to inhibit new blood vessel formation. Might come with a lot of side effects. He said a lot more options would open up if there was an extracranial (my wording) met, which unless the PET scan next week says otherwise, there aren't. I guess if the most recent 2 brain mets have been helped along by my recent loss of cortisol production (on hydrocortisone now) then maybe something might spring up in the body too. On the other hand, that's dangerous too. My oncologist doesn't think taking HC as pills instead of my body producing is worse fo melanoma.

MDA is another possibility mentioned to me. I went there for a second opinion long ago. I had few options then and the visit didn't open any more up. They have a lot of oncologists, not sure I would know who to pick as best match for my situation. Boston, OTOH, would be convenient as it could be part of a family trip. I do know of one recommended oncologist at Beth Israel.

I'm a little nervous about the rock star physician -- how much time will they actually spend on my, and about trying to think about my case in novel ways? Also nervous about the non-rock star physician. How to get one that's a rock star, but isn't.

Thanks Catherine.

Catherine Poole
Posts: 11218
Joined: Wed Jan 02, 2008 12:09 am

Re: May need a new plan

Post by Catherine Poole » Sat Mar 30, 2019 6:45 am

You probably know my top picks for being on top of all therapies and research would be either Keith Flaherty at Mass General or Toni Ribas at UCLA. Both would spend decent time with you and discuss what they know. Think of doctors as consultants. You pay for their services. I hope this helps
Catherine M. Poole, President/Founder
Melanoma International Foundation

kylez
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Joined: Sat Jul 16, 2011 1:10 am
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Re: May need a new plan

Post by kylez » Sun Apr 14, 2019 11:40 am

Had my PET/CT which came back with no disease found. So nothing 'extracranial' that, per my oncologist, might bring additional treatment choices. Next stop should be my next MRI in a month or so. If no new disease on that, per my oncologist, just keep on as-is with current nivolumab-only phase of the combo. If something new on the MRI, then besides hopefully being treatable with radiation, ASCO with lots of new data would be the next stop. If there's something with new data, and that can he can obtain, either already approved/off-label or if there is some other way, the idea would be to add that to the current nivolumab.

I'm holding off on a second opinion for now, although I did call Dr. Ribas' UCLA practice and it seems he would have a two-week or so availability, at least right now. My next MRI should be the decision point on making that appointment, too.

So me -- low tumor burden, i.e. a new brain tumor then it's burned off by radiation combined with no extracranial disease. I even asked about low body-mass-index, he said they weren't sure why it seemingly corresponds to weaker immunotherapy response. And on hydrocortisone replacement therapy since October if that' a wild card -- he says that shouldn't make a difference though.

Catherine Poole
Posts: 11218
Joined: Wed Jan 02, 2008 12:09 am

Re: May need a new plan

Post by Catherine Poole » Mon Apr 15, 2019 1:23 pm

So it sounds like you are stable for now and that's a good place. I would forge ahead to have a plan B though. If Ribas is available, please take the appointment. I'll be thinking of you and hope you will keep in touch.
Catherine M. Poole, President/Founder
Melanoma International Foundation

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