Treatment for Brain Mets – Need some shared experiences please

I am sorry for what you and your husband are dealing with, Sandy.  I can personally relate to your ordeal in that I have had brain and lung mets due to melanoma (2010) after having been diagnosed with Stage III melanoma in 2003.  In 2018 I was diagnosed with a completely different cancer for which I underwent old school chemo and lots of surgery.  So – yeah.  That ALL sucks!  And melanoma in particular sucks great big green stinky hairy wizard balls for sure!

For my brain met in 2010 I had SRS (stereotactic radiation) followed by surgery to the tumor in my lung followed by a 2 1/2 year phase 1 trial of nivo.  Luckily, I have been NED for melanoma ever since.  But, to get to the information you need….

I did have dexamethasone for potential brain swelling post radiation.  I had no swelling.  I feel very tired when on prednisone.  Many peeps feel very energized, have trouble sleeping and increased appetite.  Other than that, dex is usually utilized for a limited time or at the very least weaned as soon as possible to a low maintenance dose and there are not usually any significant problems with that.

As to SRS – I had to have a halo placed due to the methods used by my radiologist.  If that is the method used, you are then bolted to the frame of the machine so that you hold completely still, ensuring that only the proper place can be zapped.  Many facilities create a mask of your face, rather than using the halo, that helps mark the position the patient needs to be in and is a bit less miserable.  SRS allows multiple beams of criss-crossing radiation to be directed via different directions – all intersecting at the lesion (or lesions) – so that you do not damage important brain tissue but do get rid of the met.  If you were to direct one beam at the lesion – you could zap the lesion but you would also zap the viable brain tissue that lays in that path.  Gamma knife works much the same.  Both of these can be used to address multiple lesions.  We have patients on the forum who have had as many as 13 lesions treated in this manner.  Though if the lesions are numerous, the process may be provided in multiple treatments, rather than one.  Further, this sort of radiation is preferred for the treatment of melanoma, as whole brain radiation causes more residual damage and diminished response for most.

While radiation has been found to be helpful for melanoma, it works far better when it is combined with systemic therapy.  We have learned that radiation COMBINED with systemic therapy works far better (in the brain and body – something that might be important to think about regarding the liver lesion) than either therapy alone.  I would think it would be very important to rapidly switch to a therapy like the ipi/nivo combo AND provide SRS to the brain lesions ASAP.  I realize your husband did not attain a complete response to nivo alone, but the addition of ipi may yeild a positive result.  It is clear that his targeted therapy is no longer effective, so switching quickly could make a world of difference.  After he has had his brain mets treated, there may be trials with systemic therapies that could be helpful.  Unfortunately, a trial is unlikely to accept him until the CNS lesions are addressed, but you could still ask your doc about that option.  It is also of supreme importance that he is being treated by a melanoma specialist – or at least an oncologist well versed in melanoma, its treatments and with access to trial options.

Here is a basic post I created about melanoma treatments generally (which may be of no help at this point given all you have already clearly dealt with) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

Here are a zillion articles and reports on the treatment and management of brain mets:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets

These reports cover many years, so scroll through to get to the latest data.

This post – and the link to more data/reports in it – is probably most important to you right now – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/the-ipinivo-combo-with-radiation-to.html

It specifically addresses brain mets, radiation and the improved results when radiation is combined with systemic therapy.

Something that comes up a lot with oncs not terribly familiar with melanoma – is a fear of combining radiation, immunotherapy AND prednisone.  The old mentality was that steroids would prevent a response to the immunotherapy.  However, many many melanoma ratties have taught us that is NOT true!  Many melanoma peeps require steroids due to brain mets or side effects and are still able to attain a response despite being on them.  Further, some fear using immunotherapy with radiation, thinking it may increase the problem of necrosis.  However, that too has been unfounded as this report indicates – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=necrosis

In thinking about what path to choose next – clinical trials may be a good option.  Looking through this site:  https://www.clinicaltrials.gov/  may be helpful.  You can narrow the search with diagnosis “stage IV melanoma” and “recruiting” trials.  Once you have that list up, you will see the drugs involved, the inclusion and exclusion criteria, and when you look on down – all the locations at which the trial is offered.  If the options are not feasible for melanoma, sometimes “solid tumors” can yield more results.   If you are remotely interested in any trial – CALL!!  The doc, institution, and/or clinical trial coordinator is usually listed.  In calling you may find that your husband may be able to participate, even if the exclusion criteria makes it seem as though he could not, as often there are many arms to a study.  Further, you may find out about another trial entirely that is even better for his needs.  That is what happened for me.  My husband was calling about one trial when his discussion led to the trial of nivo that I actually participated in.

I know this is a lot – but so is melanoma.  I hope this helps.  There are many smart caring peeps on this board who have been treated with radiation for brain mets, so I’m sure they will chime in.  Take care of you.  Your husband is lucky to have you in his corner.  Ask more questions as you have the need.  celeste

Just to give you some more stuff to read, a link to an interview Q and A with Dr. Tawbi of MD Anderson from Jan.2020. https://www.hematologyandoncology.net/archives/january-2020/the-standard-of-care-for-brain-metastases-in-melanoma/

I’m somewhat in your boat. Many brain mets after a bottom falling out. Taking the combo – it may be helping.

Just completed 10 factors of WBR over 2 weeks, I haven’t educated myself on the particulars.

I just really liked my brain guy’s attitude…”you know, we’re coming in with the wide brain, but if we don’t get it all we sometimes come back with the SRS”.

Just a trim and a shave. There is a waiting period for the return MRI due to “tough to tell the difference between dead and live melanoma on MRI”.

I had a mask, it took less than 20 minute a session, and have not had side effects other than I think “no sun” means “absolutely no sun” I got pretty red with very brief exposure by the end.

I’ve had brain radiation twice. The first to fry any scraps from my Schwannoma after two craniotomies. (Still stable) the second tie to fry any scraps after a Mel met craniotomies. I was tired, particularly the first time, but really just ended up with some grey hair. Most of what you read online about side effects and whatnot is really out of date. Sheesh. Boy I wish I had been able to get away with just having radiation instead of surgery.

But I really, really hate dex. I have no idea what level you are taking but I had to take 40 mg three different times. And the first time a mistake was made and I was on it for months. I was bat [ ] crazy and my family really suffered. I had every side effect listed. And when I got off it finally I was hospitalized for a week with sepsis. And also had to have my big toenail removed. It is a very powerful so please try and limit your time with it. It really helps to study drug interactions etc.

Your husband sounds a lot like me.  Early 2017 was my WLE and sentinel and then lymphectomy due to finding a small amount in the sentinel node.  Early 2020 recurrence in Lung, Spleen and Brain.  I had 2 small (about 1cm ea.)Brain mets that were handled with SRS radiation and went on Opdivo.  Showed progression elsewhere after 3 months of Opdivo and added targeted therapy (Not sure why your oncologist stopped Opdivo when they started targeted as it’s been shown the Trio can be good).  My most recent MRI and CT showed brain is clean (1 gone and the other just a scar at this point) and all other disease is stable or shrinking slightly.  I’ve reacted similarly as your husband to targeted.  Fevers originally on a 4-6 week basis but now they’re just sporadic.  Some fatigue and had a rash at one point but they think it was amoxicillin that caused it.

Hope this went well.  Was meaning to post my experiences, which were that the apprehension was much worse than the actual procedure.  There’s nasty junk where it shouldn’t be; burn it out.  The halo things was strange, but less painful than I expected.

9 months after my procedure, the spot is still there, but not growing.  Hoping that it’s dead, but we’ll see.

Hi Sandy – just wanted to share my husband’s experience with brain mets and treatments. He was initially diagnosed in 2012 with mets to neck lymph nodes and brain. Over the past 9 years, has had 7 gamma knife procedures and 4 craniotomies. Gamma knife experience has been pretty consistent with what others have shared – primary discomfort has been the placement of the frame with very little in the way of discomfort after the procedures were completed. Brain surgeries have also gone off without complications, thankfully. He’s been on dex a few times with brain swelling/edema and also had avastin to deal with a particularly persistent swelling issue. The taper off of dexamethasone has been troublesome for him and is done very slowly. His treatments over the years includes zelboraf (6-9 mos), ipi, Tafinlar & keytruda. He’s been on Tafinlar since 2013 with Keytruda added in 2018/19. Other than a few pesky brain mets, his tumor activity in the rest of his body has been pretty minimal. We haven’t quite hit on the magic combination to address the brain and his neuro continues to treat the brain mets as they show up. Keep on keepin on! Take care.

Ann

Hi there! I started getting the worst headaches I’d ever had and this is how my brain mets were diagnosed. I had 3, 1 very small, 1 medium sized, and 1 almost too big for the doctor to radiate. He did SRS back in July, and they’ve not recurred. And just had an MRI and it was all clear! Good luck and best to you and your husband.

 

Glad he is done with that ordeal!  I am sure that your onc will come up with a good plan for him.  Wishing you both my best.  celeste

Wow. You have been through a lot. I’m glad you gotten through the other size. Wishing you happy scans.

Oh Sandy.  I am so sorry – for all that the two of you endured and for the loss of your dear one.  How very unfair.  But, how incredibly blessed he was to have you there for him through all his difficulties and joys.  We cancer peeps need and appreciate our loved ones who fight our battles right along side us more than we can express.  Holding you and your boys in my heart.  yours, c

Dear Sandy,

My heart goes out to you and your family. Thank you for sharing your husband’s treatment pathway, as it helped me understand options as well as barriers to living with melanoma.

Sincerely,

Cindy

Sandy, I am so very sorry for your loss. May you can in some small way feel peace in the great comfort you provided your husband as caretaker. Big hugs to you and your family.