WBR vs. SRS – I would so appreciate your input

Oh my goodness, Diane.  ASAP is what I feel I should say first!!!  Making sure your husband is being seen by a melanoma specialist, second.  And – ipi/nivo….which is the immunotherapy combo that gets the best results, third…but…immunotherapy takes time…so back to ASAP!!!!

Yes, I think that if there is still a question about the femur, etc…additional scans are needed…also ASAP!!!  But, mostly…whether brain and/or elsewhere…a systemic therapy that is working!!  And yes…immunotherapy works in both the brain and body. Targeted therapy can be incredibly effective.  However, melanoma is very sinister and can develop tumor work-around.  Sadly, this happens in most melanoma patients at about the 6-9 month mark.

Here are a zillion reports on brain mets (this post has links within): 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/melanoma-brain-mets-things-are-getting.html  

Overall, though there are those who have done it for various reasons….WBR is not very effective in melanoma.  SRS or gamma knife are much preferred and there are those here who have had brain mets that number in the teens done in one go.  Additionally, it can be done sequentially if need be.   

No, sugar intake is not going to affect your husband's melanoma one way or the other.  He needs effective treatment NOW!  This shit don't play.  I understand feeling well and the incredible disconnect you feel when your doc and scans tell you about the horror that is going on in your body.  However, everyday you let melanoma have its way…the harder it is to get a hold on it's pervasive nature.  It sounds as though you are doing all you can to encourage your husband to attain the care he needs.  Hang in there.  Ask more questions should you have the need.  I wish you both my best.  Celeste

Listen to Celeste – she’s the pro. He very well may tolerate radiation/treatment well and interview throughout the process. I stayed home with my two kids and finished grad school while on treatment. 

Best of luck,

Ashley

Celeste has given you great advice.  As someone who has had brain tumors (and is also a "knowledge worker"), I would personally seek out every alternative before WBR and would (and do) view WBR as the last and least preferred option.

Hi Diane, just to add to what has been already given, here are two links!!! https://m.youtube.com/watch?v=X5xGQpdp9OA and a second from MD Anderson, https://www.mdanderson.org/newsroom/2017/06/two-combination-therapies-shrink-melanoma-brain-metastases.html  Just a thought, try to get your husband on the forum if possible!!! There is data out there as well on SRS vs whole brain radiation and cognitive effects. Best Wishes!!!Ed

Hi Diane – As everyone else has already said – please listen to Celeste – the time to act is ASAP!!!!

I'll tell you a bit about my sister – she had a clear brain MRI in Jan. 2016 but had multi-organ and bone mets – went on Taf/Mek combo in Feb. but couldn't tolerate it and even though it seemed to "melt" away her mets, she was still progressing. By May she had developed brain mets – more than could be counted. Luckily that same month, she started Ipi/Nivo combo infusions – had two before brain mets were discovered. In her case, she had too many mets for any kind of SRS and had no choice but to undergo WBR. (We fought like crazy for SRS – went to a top-notch US neuro-radio-oncologist who also concurred that WBR was the only option).

She had the max rads they could give and yep, there's a small amount of permanent damage but NOTHING that does not allow her to live a normal life. She's a teacher and went back to work last Sept. Basically, her short term memory was affected but it was no more than little things like walking into a room and forgetting what she went for – starting to say something and then missing a word. This seemed to peak at around a year after WBR and then got better. She coped with it by writing lots of little notes to herself, post-its, etc. … A year and half later now and there's barely any sign – she doesn't "miss a beat."

I say "luckily" she had two combo infusions before the radiation because, received in close proximity ("in concert" as you've said and Celeste's material makes very clear) seems to be the most effective treatment. After a course of hi-dose steroids following the WBR, my sister went on Nivo-only infusions and is now NED. Without both treatments, I don't believe she would've made it.

If it was me, I would be pressing the docs for this kind of treatment – even one combo infusion before the radiation (and definitely SRS if possible) and then back on to immunotherapy asap after that.

As for your husband's belief in diet is "everything" – I have a friend just diagnosed with breast cancer – it's her 2nd cancer (already a lung cancer survivor) – she has always eaten really well, has great energy, she looks like a million bucks for her age and after her 1st cancer, she "doubled down" on her "healthy diet" (no sugar, lots of salads, the right amounts of everything – proteins, carbs, etc….)  Now she's in absolute disbelief and feeling quite betrayed … wondering how this could have possibly happened to her …

I sincerely hope this helps and I wish you and Brian the best possible outcomes!!!!

Barb

Diane, I echo Celeste and Barb. A couple things, first make sure radiation oncologist and melanoma oncologist are talking to each other and are on the same page and in agreement. Sometimes the various departments say they are in communication but they really are not. Ask radiation oncologist specifically why WBRT over GK. I would not necessarily accept number as being a reason. In Adriana's case it was the size and location of her three mets that was the issue and GK being more prone to short term swelling which had the potential to stop her heart and lungs. My understanding that WBRT is a one time (although several sessions) deal but you can have GK  multiple times if necessary (although not the same spots I think?? even after WBRT we were told.) As Barb noted WBRT does work for some and doesn't necessarily mean the end of your brain so do it if there is good reason. 

Above all please don't wait.

I say ASAP GK and some immuno therapy as close together as they will let you (they will probably recommend a couple days break between them, don't accept weeks of time between them without really good reasoning such as indication of brain bleed, etc.) 

Drs. know a lot (most assuredly more than most of us, well maybe except Celeste :->) but they have a lot of patients and honestly aren't always up on everything. Be tough with them. Your husbands life doesn't mean more to anyone except he and you. Sorry if this sounds bad on my part, I don't mean it to. 

Barb, Thanks for sharing that success story of your sister I am so happy for her.

Rob

HI Diane – my husband has had 2 crainiotomies and 5 gamma knife procedures over the past 6 years  I would STONGLY urge you not to delay in pursuing treatment for his brain mets.  I completely understand the concerns about cognitive impairment associated with the treatment options – my husband experienced radiation necrosis and brain edema several times and has bounced back to full brain strength (and more!) after each incident.  Recovery from cognitive issues is a short term proposition….not treating the brain mets will eventually have catastrophic consequences with no recovery.  I hate to put it in such dire terms but watching and waiting is the WORST approach for his situation.  Put the job interviews on hold and pursue the appropriate treatment(s).  I can't comment personally on the WBR vs GK as my husband only had one met treatated at a time with GK so we didn't have to consider WBR.  I know that research has shown that WBR is not very effective for melanoma – Celeste has provided much information on this topic and I have nothing to add.  Please, please, please – do whatever it takes to convince him to act aggressively in getting treatment.  

Ann