- October 23, 2018 at 1:42 am
So it seems I did jinx myself by reporting good news in recent posts. After no progression for 3 years and good scans in August, I have a spinal tumor and progression to CSF. Not good, I know. The good news is that I will have the spinal tumor surgical removed tomorrow followed by radiation for clean up. For CSF, plan A is the new Braf-Mek combo, which I understand is active in CSF. Personally, I had Braf-Mek shrink brain tumors, so this seems plausible. Any thought on other option? Has anyone reported success with the intracranial treatment at MDA? I haven’t heard any good outcomes here. Thanks.
- October 23, 2018 at 7:47 am
Well, shit, Mat. I am so sorry. We know absolutely that both targeted therapy and immunotherapy work in the brain/CNS. I have dear ones (not to mention myself!) who have had success with both in that area. Data seems to indicate that radiation seems to improve the effect of both, though I don't know if that is an option for your current circumstance. Here are some posts that might interest you:
This on the BRAFTOVI/MEKTOVI combo:
This on brain mets generally, with links, and specific info related to BRAFi and radiation that is a little confusing, but still: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/melanoma-brain-mets-respond-best-when.html
This on intrathecal infusions to treat LMD, which MD Anderson was doing last I knew: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/02/leptomeningeal-disease-in-melanoma-bit.html
Perhaps dear sweet Rob will chime in (adriana cooper). I know they had some success with BRAFi.
Again, so very sorry you are facing this. You have already dealt with more than your share. I know it sucks, but I think there is reason to hope. Hang in there and keep us posted with what you decide to do. Much love, celeste
- October 23, 2018 at 7:52 am
Shit. So sorry. Just wrote you a long post that got a response that is has been "qued for review by admin". Last time that happen no ADMINS knew anything about it!! So…I'll break it up and see if it will post.
We know that both immunotherapy and targeted therapy work in the brain/CNS. We know that for the most part, both have improved results when paired with radiation….though I don't know if that is an option in your current circumstance.
Here is a report on BRAFTOVI/MEKTOVI: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/well-okie-dokie-braftovimektovi.html
…to be continued…..
- October 23, 2018 at 8:08 am
I am so very, very sorry!!! This sucks. I have tried twice to respond…only to get this pop-up:
"Your comment has been queued for review by site administrators and will be published after approval."
I don't know it that is a real thing these days….last time it happened no admins knew anything about it! At any rate –
We know that immunotherapy and BRAFi work in the brain and CNS. We know that most of the time they do better when combined with radiation, though I don't know if that is an option in your current circumstance.
Here is a report on BRAFTOVI/MEKTOVI:
…to be continued….
- October 23, 2018 at 2:32 pm
Well, all my attempts to reply are now posted!! Looks a bit psycho…but whatev….
Been thinking about you buddy, since my 0230-0430 potty break…cause that's how I be rolling these days!! B just had a thought that I like…
If your spinal tumor is accessible, what about an intralesional like T-VEC or PV-10?
A bit out there, I realize. But, hey! I'd ask if it were me. Still thinking. Much love and hugs. celeste
- October 23, 2018 at 2:56 pm
Thanks Celeste—you’re the best! Spine tumor—L1 lapendectomy—requires surgery since they need to go through bone. The problem with radiation is that it takes several sessions and the normal rule is no meds during radiation. So I’m pushing hard for skipping radiation and letting the Braf-mek clean up the surgery site and my CSF. Will keep you posted. Expecting surgery in a few hours.
- October 24, 2018 at 1:23 am
I'm sorry Mat. I hate to hear this. Prayers for your surgery tomorrow.
- October 25, 2018 at 2:57 am
Hope the surgery went well. I saw my treating physician, Dr. Tawbi, today and asked him his thoughts on LMD and treatments available at MDA. He mentioned two but I could only find one of them on clinicaltrials.gov
The other trial he mentioned was a Braf/Mek + anti-pd1 which he said patients with LMD are eligible. I did not see a trial on clinicaltrials.gov which met that description.
Wishing you a speedy recovery from your surgery.
- October 25, 2018 at 12:45 pm
Celeste, Brian, all, thank you. Surgery was successful. Today is my first PT day. Need to recover strength in hips and legs. We’re skipping radiation to clean up surgery site. Going straight to original (not newer) Braf-Mek since I personally saw the benefits of that combo, including in brain, and was able to nicely tolerate. It has been almost 3 years since my last Braf-Mek, so we’re optimistic that it will work. At this point, I can’t comfortably travel, so MDA is out.
- October 25, 2018 at 1:58 pm
Oh, Mat!! Been watching for this. So glad you're done with surgery and it went as well as possible. Your plan sounds reasonable to me! Hang in there. Get strong. I'll think of you doing your PT and strength training as I make my own efforts in that regard!!! Love, c
- October 25, 2018 at 9:16 pm
i responded on Celeste's other post before I saw this post so a bit of a double post. I have LMD and I'm currently on BRAFTOV/MEKTOV. I just returned home to Chicago from MD Anderson after attempting the intrathecal trial. They've had very few people attempt it . I know they have had success with at least one person. I'm not sure yet if I got some benefit or not. It was much more difficult being away from home than I thought but I felt incredible lucky to try it.
MD Anderson offered me IL-2. Dr. Luke at U of C offered me to finish the IPI/NIVO I started before I left and some radiation to my spine tumors. Thank goodness for options. They both agreed I needed a month or the braf/mek to get stronger. I'm tolerating it well and will switch to IPI/Nivo soon. I've done nivo twice without good results but maybe the combo will prove better.
I hope your surgery went well. I'll be following what you plan on doing since I understand we just entered a new world of melanoma.
- October 26, 2018 at 3:56 pm
Thanks Caitlin. Sounds like you have a good plan too. We’ve started talking about next steps—similar to your next steps—once we see results from braf-mek. Like you, we eere originally considering the newer combo, but decided to go with the original since I already had some success with it and I haven’t used it for almost 3 years.
- October 27, 2018 at 1:05 pm
A quick update—CT scans show no other progression. So, in theory, Braf-Mek can focus on cleaning up CSF and surgical site (aka low tumor burden). Folks here know that I push for regular scans, including a Battle Royale to include brain MRI. I do that in an attempt to mitigate the possibility of an uncaught and dangerous progression. Yet, here I am. Not much we can control in this world despite best efforts. That said, I’m in a good spot mentally and up for this latest challenge. Thank G-d for strength of mind and direction and for the assistance of a top quality and open minded medical team.
- October 27, 2018 at 5:37 pm
Good for you, Mat! Clearly a positive attitude cannot prevent our maladies nor cure us of them. But it damn sure helps us get through what we must in order to live and enjoy life…in all its machinations!!! Hang tough. Glad you have a good medical team. You've certainly got all the support we can muster here!! Keep us posted!! love, c
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