Brain mets success stories

Hi Ashley,

Sadly this site is not as busy as it was. Though, perhaps, that is a good thing as there are ever so many more effective melanoma treatments than there once were – meaning any time before 2011!! At any rate, there are many brain met peeps here – still alive and kicking. I am one. Stage IIIB with cutaneous lesion to my back and positive nodes to my right axilla when I was 39 years old back in 2003. I had surgeries but not systemic treatment as there was none! I developed another primary to my left arm in 2007. Had that removed surgically, but again – no other effective treatment existed. In 2010 a routine chest x-ray showed “something” in my lungs. However, as an asthmatic, docs felt it was related to that rather than melanoma. We watched and waited for 6 months. It never worsened but never improved so a bronchoscopy and biopsy was done and yes – it was melanoma. After that, additional scans and MRI of my brain showed a brain met as well. In April of that year I had surgical removal of the right upper lobe of my lung and SRS (stereotactic radiation) to the brain met. Still, there were no FDA effective treatments available! Ipi was in trials – but they required measurable disease that I had just had removed and zapped! Finally, in December of the same year, I was admitted into a Nivolumab (now Opdivo) phase 1 trial with two arms (at that time). One with folks who had active disease. One with folks like me – Stage IV that had had their disease treated. Stories of my trial and Opdivo are on my blog. We didn’t know if it would kill us, if we would grow three heads, or if it would really prevent melanoma or not. However, we did well!!! We all took Opdivo as a single agent for 2 1/2 years. My last dose was in June of 2013 and I have been NED for melanoma ever since. (One point of interest is that on entrance to the trial, scans were done and another likely brain met was found. It resolved with the treatment. Luckily, I was never symptomatic with either met.)

So yes!!! Though, I am sorry you and your dear one are having to deal with this awful disease, there is hope!!!!!

Some articles/posts you might find interesting or helpful:
Love Potion…or Patient…#9!!!!!

Melanoma treatment primer and other melanoma reports, many addressing brain mets

Finally, back in the day, docs were scared to death (ironic when the folks at risk were us ratties!!!!) to combine immunotherapy with radiation. We have learned that the combo is much better than either alone. Here are a zillion reports specific to that topic: Radiation combined with immunotherapy for melanoma

As for my blog, articles are not mine but are from reputable journals and researchers (if not it is so noted) and are in quotes. May take/interpretation is written in red if you are interested. The search bubble can be helpful.

When looking at melanoma data – be sure you are looking at the latest stats – because before treatments noted in the primer the results were indeed dismal!!! Today, especially with the ipi/nivo combo outcomes are much, much better!!! I hope this helps. Hang in there. Your fiancé is lucky to have you.

Wishing you both my best. Celeste

There are very few studies that actually show that steroids while on immunotherapy diminish response. In fact, most studies conclude that folks on steroids can attain and maintain good responses while on immunotherapy AND steroids. Further, apart from brain met folks with the necessity for steroids – immunotherapy itself can cause side effects that necessitate steroids in order to deal with them. SO….if you were to stop taking immunotherapy you will have the absolute KNOWN side effect from melanoma (and it ain’t good) or you can deal with side effects as you must with steroids and studies show that those patients still survive melanoma!!! In a perfect world, might it be best to take immunotherapy with NO steroids? Sure. But we melanoma peeps deal with what we must. And sometimes, steroids are a must. And the data shows, we can STILL gain and maintain a response to immunotherapy while on steroids. Here are a zillion articles looking at all of that: Steroids and immunotherapy

Yes. There are those in data (and folks I know in real life) who responded well to immunotherapy. Stopped. But, later due to progression needed treatment and repeated ipi/nivo or nivo or pembro alone again and gained a good response. A lot of the data indicates that immunotherapy naïve patients gain the greatest response, but it is clear that patients taking another round (or 2) can gain a response as well. Articles – Immunotherapy after progression

Hope that helps. The search bubble can be helpful. Let me know if you have other questions. Hopefully other peeps will comment in the coming week. Yours, c

Bubbles:
There are very few studies that actually show that steroids while on immunotherapy diminish response. In fact, most studies conclude that folks on steroids can attain and maintain good responses while on immunotherapy AND steroids. Further, apart from brain met folks with the necessity for steroids – immunotherapy itself can cause side effects that necessitate steroids in order to deal with them. SO….if you were to stop taking immunotherapy you will have the absolute KNOWN side effect from melanoma (and it ain’t good) or you can deal with side effects as you must with steroids and studies show that those patients still survive melanoma!!! In a perfect world, might it be best to take immunotherapy with NO steroids? Sure. But we melanoma peeps deal with what we must. And sometimes, steroids are a must. And the data shows, we can STILL gain and maintain a response to immunotherapy while on steroids. Here are a zillion articles looking at all of that: Steroids and immunotherapy

Yes. There are those in data (and folks I know in real life) who responded well to immunotherapy. Stopped. But, later due to progression needed treatment and repeated ipi/nivo or nivo or pembro alone again and gained a good response. A lot of the data indicates that immunotherapy naïve patients gain the greatest response, but it is clear that patients taking another round (or 2) can gain a response as well. Articles – Immunotherapy after progression

Hope that helps. The search bubble can be helpful. Let me know if you have other questions. Hopefully other peeps will comment in the coming week. Yours, c

so good, i like it

My brain met was found within four months of its formation, because I was being monitored for an unrelated brain tumor. But it grew rapidly in that time and was nasty at the outset. I had very low tumor burden elsewhere. I had two round of combo, surgical removal, one round of radiation, two more rounds of combo immunotherapy and then completed immunotherapy over the next two years. I fared pretty well in immunotherapy and I have no detectable cancer right now. Low level steroids helped me get through immunotherapy. My oncologist is a big believer in starting immunotherapy first and then surgery if necessary and following up with radiation, using steroids to manage side effects. (I also previously had two craniotomies and two weeks of radiation for my original brain tumor, a Schwannoma.) I still have never really had symptoms from the cancer although I have a number of heath issues from my original tumor.

I did develop some minor radiation necrosis about 18 months later that was being watched but I was symptom free. When I finally caught Covid it immediately caused that area of my brain to have a seizure. It looks like quick medical treatment means no long term issues although the drugs right now awful, awful to manage my brain post seizure. I am taking steroids, anti-seizure medicine, and have three rounds of Avastin to try and heal-ish the little area of necrosis. My doctors are optimistic. Six months without driving is a PITA.

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

good