marta010

Hi – my husband was diagnosed in March 2012 with Stage 4 melanoma in his brain and cervical lymph nodes. 11 years, 8 gamma knife procedures, 5 craniotomies later, he’s still here! It has not been easy but he perseveres. His treatment started with Zelboraf and radiation to the neck mets, followed by Tafinlar/MEK (still on Tafinlar 10 years later) with Keytruda added in a few years ago after another brain met. No detectable cancer in his body – tumor burden was always pretty minimal there – and watching an area in his brain that has been previously treated so his oncologist and neuro surgeon are not convinced it’s an area of active cancer but likely necrosis. Take care!
Ann

Hi Judi – my husband is in year 10 of fighting brain mets. His neuro often has a different take on the scans than the radiologist does. It’s also difficult in some cases to accurately distinguish a melanoma tumor from necrosis. We’ve been watching an area (uncertain whether tumor or necrosis) in my husband’s brain for about a year now and as long as it doesn’t cause symptoms, his neuro is ok with waiting. Of course, while we were watching this one, another area snuck up on us between MRIs done every two months! We’ve been treating with the same neuro since 2012 and trust his instincts. In past brain necrosis situations, he’s had Avastin which worked extremely well and Dexamethasone which is the devil. Not sure if this helps with your question or not. Let me know if you have any questions. Take care!
Ann

Hi Jenn – my husband had a similar experience in May. Initially diagnoesd in 2012, he has a history of brain mets treated both by gamma knife(8) and surgery(5). The most recent brain hiccup in May also involved a seizure followed by MRI which showed a new mass in a previously treated (both gamma knife and craniotomy in 2016). Since this area had prior radiation treatment, his surgeon felt another craniotomy was needed. Also wasn’t sure if the mass was tumor regrowth or necrosis. The pathology showed mainly hemorrhagic material with a few rare melanoma cells. He has a follow up MRI this week to determine next steps, if any. During the past 10 years since his diagnosis, he’s had a few other incidents with radiation necrosis in his brain. A couple were treated with Dexamethasone – usually followed by surgery. He’s also had Avastin after one particularly large area just wouldn’t clear up with Dex. You might want to discuss this option with your neuro. Even with all the trauma to his brain, his only deficit is vision related due to the location of one of his tumors near the optic nerve. Honestly, his brain is sharper than mine! Keppra also makes him tired – dosage was increased after the seizure which is likely the cause of the fatigue. I don’t know if this info helps or not. I would like to think his long term survival would be encouraging. Take care.
Ann

Hi Gregg- my husband has his 50th Keytruda infusion at the end of January. He’s also been on Dabrafenib since 2014. Main side effects have been fatigue,muscle/joint aches and pains and recurrent adrenal insufficiency. Cancer status is pretty clear in his body but watching a stubborn area in his brain which his Neuro is pretty sure is necrosis from prior gamma knife treatments. All in all, he’s doing pretty good. Coming up on his 10 year diagnosis anniversary in March 2022. He is a remarkable fighter- had jaw reconstruction earlier this year which was due to radiation early in his journey. We’re thankful for every day! Happy holidays and prayers for a healthier 2022!

Ann

Hi Kathy- my husband has been dealing with brain mets since his initial diagnosis in 2012. Numerous gamma knife treatments and brain surgeries over the years and he still fights on. He has one pesky area that just won’t quit acting up – hope his mri next week is more definitive on whether it’s tumor or necrosis.
The remainder of his body is tumor free- been treating with Keytruda and Tafinlar for many years and it’s taken a long time to achieve that!  It’s not easy but he’s hanging in there one day at a time. I remember bursting into tears when I first read the survival statistics and thought he’d be gone in months but he’s still here!

ann

Hi Stefan – so sorry you and your mother are going through this.  My husband was diagnosed 9 1/2 years ago with brain mets, which have been treated and are still popping up so don’t lose faith.  You didn’t mention if she is currently on any treatment for her other tumors – both immunotherapy and Braf therapies can cause side effects, including vision issues unrelated to progression to the brain. If the brain MRI does find mets, there are treatment options for her.  Take care.

Ann

Dear Kerri – so sorry to see your news of Jake.  I’ve often looked for updates over the years and, like others, had hoped that Jake was enjoying a normal, cancer free life.  It breaks my heart that he was cheated by this horrible disease.  May your  memories of the happy days bring you comfort.  Take care.

Ann

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

Hey Mike- one day at a time. Once you get the pain under control you can take the next step! Sending extra prayers out to you and your team. Take care.
Ann

Hi Amanda -well that news does suck. For what it’s worth, my husband has been on a combo of Tafinlar and Keytruda for the past several years and has been mostly stable excluding a pesky, previously treated brain met and a new tumor in his spleen when we tried reducing the Tafinlar dosage. The spleen met is reducing now that he’s on a full dose of Tafinlar. I hope you experience the same success with your combo. Take care!

Ann

Julie – sounds like the trip was good for the soul. So glad you were able to enjoy your time on the road. The photos look amazing – I am in awe of our national parks and love traveling to see all the beauty. Take care.
Ann

Wow – that is fantastic news. What a great turn around! So happy for you – keep the good news coming!

Ann

Safe travels – have a wonderful trip!

Sorry to hear about the latest development in the brain. Re your question on fevers, initially my husband was on reduced dose (75%) of Tafinlar due to fevers and eventually increased to full dose. He continues to have a very positive response in his body even at the lower dose. Like your wife, he also developed brain mets while on Tafinlar. Each time, he had gamma knife/srs/brain surgery to treat the mets but continued on Tafinlar. He’s been on Tafinlar since 2013 and added Keytruda about 3 years ago after the most recent brain met. I hope your wife’s brain met is treated successfully and the Tafinlar/Mek kicks in to keep others from forming. Take Care.

Ann

Hi Jenn – my husband no longer drives due to the vision deficit caused by the brain tumor and has also developed macular degeneration in one eye. Unfortunately, he was unable to return to work about 4 months into his treatment and has been on long term disability since shortly after his diagnosis. He has had a host of treatment related side effects over the years that made it impossible to return to work. I know he would return in a minute if it was at all possible. His quality of life is pretty good when not dealing with a crisis – the last 18 mos were pretty tough with a couple of major surgeries and lengthy recoveries. He does have ongoing fatigue and has limited stamina so his physical activity is pretty minimal. He takes all the hassles in stride – never appears to be bothered by his situation. I feel like we’ve been robbed of what we envisioned our 50’s to be – but what can you do but take it one day at a time. I feel fortunate to have been able to work from home since COVID began so I can keep close tabs on him. I still get anxious around scan time but not nearly as bad as in the early days. I hope your brain settles down and you can move on to better times.
Ann