Progression of brain Mets and whole brain radiation

Oh, Hollie.  I am so sorry.  Hopefully folks more knowledgeable than I will be able to give you some perspective.  I suspect it varies a lot, but still I am sure there are many who can share tips and wisdom.  I just wanted to let you know that I am thinking of you and yours.  Hang in there.  celeste

So sorry to hear about the progression. Does he have any other symptoms? Seizures, lack of brain functioning?
My dad had 13 brain Mets. He did WBR radiation and five infusions of immunotherapy. He had numerous major seizures through the whole process and with each one he seemed to lose some of his brain functioning. They switched him to BRAF Inhibitors and right before he passed away half of the tumors in his brain were actually gone and half had shrunk by about half. But the damage to the brain was too much. Within 4 months he went from being able to walk to pretty much being completely incapable of communicating and not moving at all. He actually passed away from sepsis. What I’m trying to say is situation with his brain tumors actually improved significantly so there is hope. I think what killed him was the damage done by all the seizures. We don’t think it was the radiation because the damage happened to quickly.

Annie

Hi Hollie – I'm so sorry about everything that you, your father and family are going through!! I looked back at previous posts to see if your dad's age was shown, only because I suspect such treatments are even harder on older folks than younger. Regardless, I want you to know that my sister underwent WBR nearly two years ago and definitely did "come back from it" – in fact, she's NED.

In Jan. 2016, her brain was clear but mel was breaking through her spine and she had a massive tumour burden throughout her body. She was also treated with taf/mek, though she couldn't tolerate it and it was stopped after only a few weeks. It still did great damage to existing mets – killed some outright, halted growth in others. There were some new mets too though but taf/mek did enough good to allow her to proceed with immunotherapy. In April she started ipi/nivo combo but only had two infusions – 2 days after 2nd infusion (May), her brain mets were found.  

SRS was not an option – docs repeatedly told us she had too many mets, though refused to say how many was "too many" – there were 12 of them (I think) that they did measure and discuss and by the time WBR took place (June), 3 were bleeding. While nobody said it out loud, we all knew the WBR was regarded as mostly a palliative measure – everyone treated her as though she was going to die. What we didn't know (for about 9 months) was that the "too many mets to count" was actually hundreds of them – micromets that showed up as all these tiny white specs. Probably it's a good thing that we didn't know!

Soooo – WBR is NEVER the preferred option but I believe (or prefer to believe) that, when combined with immunotherapy, the synergistic response (abscopal effect) can be as great as that demonstrated by SRS and immunotherapy. I believe that this IS what happened for my sister. 

She resumed nivo-only infusions in July 2016 and scan by scan, we watched her tumours disappear – it took a year but a scan last summer finally showed up clear and every one since has shown the same.

The first six months following WBR were not easy – the swelling in the brain was very slow to ease and caused various problems (drop attacks, scary). She had a few rounds of increased steroids (hence, missed treatments). The fatigue it causes is also pretty extreme, at its worse she could barely stand let alone walk. She asked for Ritalin and it worked very well for that, so well that it masked "nivo fatigue" too!!

The first scan after WBR (Sept.) showed no change in the brain mets other than nothing bleeding and nothing new. The next scan (Dec.) showed just about everything gone but remnants and areas they were "watching." However, the doc warned then that there were "still hundreds" of microscopic lesions they had to keep an eye on. What she didn't explain at the time was that these tiny white specs could've been new mel mets coming OR they could've been the damage that WBR causes – which is what she suspected but didn't want to discuss at that point … but that's exactly what it was. There was more of it in scans last Spring (2017), which she expected and confirmed to us then as radiation damage. The good and best news though, of course, was no mel!!!

For my sister, the WBR damage seems to affect her short term memory but it's not much more than walking into a room and then forgetting what she went there for – losing a word mid-sentence – forgetting momentarily how to do a simple task. But, it's not all the time nor even every day, just every 'once-in-a-while'. She's a school teacher and went back to work last fall, allbeit part-time but she's managing. 

It's my sincere hope for your father that he can get back onto immunotherapy as soon as possible following the WBR, without his doctors rejecting the idea that it will do any good. I don't believe anyone can say, with certainty, at this point, what will happen. He may shock the heck out of all of them – I hope he does!!! Time will tell – that's what's needed!!

I remember saying to my sister, during one of our "blackest hours," that I realized that I had no right to say such a thing but was going to say it anyway – that, despite what we were about to hear, there was nothing "written in stone" – that anything could happen.

I still believe this Hollie and with all the hope I can send, I will hold out this belief for your father as well. I wish all of you the best possible outcomes!!

Barb