Stage IV w/ Brain Mets-Best treatment options!

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5/12/2014 3:42pm
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Replies: 13

Hello-

My daughter-in-law was diagnosed with Metastatic Melanoma in January after monthes of headaches and the neurosurgeon was "pretty sure" it was NOT melanoma on the MRI but I had a feeling it was due to my DIL's past history of a melanoma lesion (left abdomen/3 yrs ago) excised and no follow up.  The neurosurgeon did brain surgery and removed "as much as she could" and found it was melanoma.  Megan started whole head radiation.  That has been over for 3 monthes and the tumor is re-growing, quickly.  It is already back up to 2.6 cm. What are the latest, most effective treatments for BRAIN mets. She has had 4 rounds of IPI for the one node that was positive but to my inderstanding, most IV therapies won't help the brain tumor.  There is SO MUCH INFO out there but none seem specific to her situation.  She is 26 yrs old. She is to start HD IL-2 soon, should this be postponed in light of the brain tumor re-growth? Is there a more DIRECT treatment for the brain tumor that should have/could be given/done/injected INTO the tumor DURING brain surgery? Sorry...lots of questions. Just want to help advocate for her. Thank you for ANY advice. If it is helpful, we live in the midwest (Iowa).

Chris

Chris,

is she BRAF positive? I am on BRAF /MEK inhibitors at the moment doing fine. No brains mets but mets in lots of places though. My onc is fascinated with this combo and told me that he is treating a woman who came with her brain full of mets in fall of last year, no way she would survive 3 months. They started the combo and she is now doing pretty fine with substantial tumor shrinkage.

Another option if you are in the US is the Merck early access program for anti PD1 thoough I am not sure wether she would be eligible given that she has an active brain met.

is gamma knife for this single met no option?

hope all the best and that you find a good solution for her being in a very difficult situation!

// Chris

I also had a small brain tumor (4-5mm) shrink by 50% in only 10 days or so on the GSK combo (BRAF/MEK) before I had it gamma-knifed.

Chris,
I am not sure if she is BRAF + or not. I asked my son and he was not sure either. Guess you have to know what to ask before you can ask it. Thank you for your response. Everything that is posted gives me mor paths to check on and I appreciate it! I will check on the things you have brought up. They sound hopeful!
God bless
Chris V

Sorry for everything you and your daughter in law have been and continue to go through.  Here are some posts that I have made that may be helpful.  More information should be coming out of ASCO in late May/June.  Wishing you my best.  Celeste

 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/brain-mets-in-melanomathe-latest-from.html

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/new-data-on-treatments-for-melanoma.html

chaoticallypreciselifeloveandmelanoma.blogspot.com

Celeste,
Thank you for all the info and links. I appreciate it very much and plan on reading up soon!
God bless
Chris V

Saw this post recently.  Don't know the specifics but might be worth researching.

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34968&hilit=pd1+and+brain+mets%E2%80%A6

Thank you. ..that was helpful. Meg has an appointment today with melanoma specialist and a new neurosurgeon. I now have some good questions to ask.
Thank you
Chris

Thank you. ..that was helpful. Meg has an appointment today with melanoma specialist and a new neurosurgeon. I now have some good questions to ask.
Thank you
Chris

Hi Chris,

There is some preliminary evidence that immune therapies like Yervoy can benefit patients with brain mets. The theory being that the immune cells boosted by IPI/Yervoy can/will cross to the brain,with the percentage of brain met patients benefiting is about the same as for patients without brain mets.

As far a second opinions, one way to find well-regarded Neurosurgery departments is from thist list, http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery. Your family can seek second opinions on developing the treatment plan from here forward. Ideally at a facility having both very good neurosurgery and very good melanoma practices. I have sought a second opinion before, in part involving brain mets, and found the second opinion very helpful.

Hi Chris,

I had my first brain tumor in June 2012.  We tried Gamma Knife radiation (a type of SRS) and eventually had a craniotomy.  A tumor returned to the same spot in April 2013 and I had craniotomy #2.  SInce the tumor was in the same spot my team decided to leave gliadel wafers in the cavity:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2002480/

They are meant for gliomas (a different type of tumor-but still in the brain).  My surgeon has used them many times (9-10??) on melanoma tumors. 

Please remember this is just my opinion ... but if another brain tumor shows up and they can get it through surgery then I will schedule criotomy #3 immediately and ask them to leave the wafers in the cavity.

One question: Is your DIL seeing a melanoma specialist (as opposed to an oncologist who has SOME experience with melanoma)?  I think I can speak for just about everyone on this board and recommend getting her to a specialist.  

My brain has been clear since last June's surgery (most recent MRI was in April).

Good luck!

Brendan

 

PS Can anyone recommend a PD-1 trial that allows brain mets?  

 

 

Hi Chris,

My husband has Stg. IV w/Brain mets (also lungs, subcutaneous, ? spleen). He had Gamma Knife x 3, then whole brain radiation. He rvcd. 2 rounds of Ipi (Yervoy). Awaiting to see if he will qualify for Anti PD-1. Thay CAN NOT have any non-responent tumors ( to radiation), or new lesions. We have been told there really isn't anything else for him if he can't get the PD-1. The brain trumps everything else!

We have been prepared for the worse. I'm sorry your daughter in law is going through this. Melanoma is just awful.

Virginia Washburn

Megan has had the Yervoy and it did nothing for the brain mets. They came back within 4 months post surgery while she was doing Ipilinumab treatments every 3 weeks.
Thank you for your post. I will check into the linked site you posted.
Thanks
Chris

Hi Chris,

I'm sorry that you are going through this and hope things turn around with your daughter inlaw.  When we started this journey we felt pretty confident with the doctor we had been referred to and were only seeking a second and then third opinion to determine which trial we could get her into. Both were PD1 trials. Getting other opinions saved us and my Mother a lot of grief.  She would have started a PD1 trial with brain mets and been kicked out of the trial on the first MRI of the brain during the trial and the brain mets would have been left untreated for at least 3 to 4 months, which would have been devastating.

What we discovered along the way was that the first radiologist missed 3 brain mets, which even I could see on the computer monitor when the 3rd doctor actually looked at the MRI of her brain.  My take away was to ensure that we would get second opinions on just about everything... Even if you are confident with your doctor because mistakes can always be made. And find a melanoma specialist they understand this disease in greater detail than a typical oncologist does.- Based on what you are saying, it sounds like you need access and information to physicians that are much more familiar with melanoma if they have not discussed if she has been tested for the BRAF gene or even discussed gamma knife vs whole brain radiation.

We found out in early April that my Mom had one new met that was about 3mm and even after I'd asked about treating it with Gamma Knife, moving to BRAF/MEK...we were told to just watch it.  I called the ordinal doctor who preformed gamma knife and her oncologist (Dr. Wong) had his radiologist (Dr. Chang) look at her MRI.  Dr. Chang found at least 5 in her prefrontal lobe and scheduled her for Gamma Knife treatment.  The day of the procedure they took care of 16.  - Total treated 24.

My Mom is on Yervoy and has done incredibly well (except for the colitis) and had 3 infusions. - She won't have the 4th. - All the of tumors on her head and neck are gone and we are waiting to find out the results of her trunk are.  We do know from CT scans that some tumors are smaller and some were larger in March.  )The scans they compared them to were from November of last year and she did not have treatment for one month because we were waiting for test results for the trials and the brain mets went from 3 to 9 during that time period.)

Of course she has not done well with regards to the brain mets, but our understanding is that the brain mets seem to be the last affected when using Yervoy/ipi. Our oncologist has also suggested using the BRAF/MEK combo and PD1s if the upcoming MRI of the brain (June 3rd) shows any brain mets.  He is far more concerned about this than the other spots because of her strong response, as are we.  

She has experienced no cognitive issues with the brain mets and is feeling much better now that the treatments have stopped.  She is a very active and physically strong 78 year old and in better shape than the vast majority her age. And her doctor said that she had the immune system of someone in their 30's, which she loved hearing, becuase she says she's only 39 :) -  We suspect that this played a huge role in the treatment with Yervoy.

I don't know where you are located, but I do recommend USC in Los Angeles (Dr. Wong and Dr. Chang) and Dr. Bosaberg (he found the brain mets the radiologist missed).  They are all at the top of their fields, very caring and all do clinical research, which make me more confident that they are up on the newest procedures, medications...

Good luck.