Update (All good)

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.

Update (All good)

Postby MathewR » Sat Sep 09, 2017 9:06 am

Hi folks,

Recent posts by Brian and Celeste inspired me to post a brief update. Folks know my history (or can review it via my prior posts starting in August 2013). My most recent treatment following a challenging 2015 was ipi/nivo starting in early 2016. I had 3 of 4 of the combined infusions and ~20 nivo infusions in 2016. Towards the end of the year, I started to experience arthritis in a number of joints, but knees and ankles proved to be the most problematic. There was some discussion of stopping treatment altogether--scans showed stable disease and, to the extent I had occasional PET scans, no uptake. Instead, I opted for treatment every 12 weeks (following consultation with MSK)--on the theory that nivo's half-life in the body is around 12 weeks. I had 2 of those infusions (March and May) and have now paused treatment. In addition to the arthritis, which has now persisted for ~10 months, I developed pneumatosis (bubbles in the interior wall of the colon). The pnematosis is asymptomatic, but has increased from scan-to-scan. I've been on antibiotics for the past month and the hope is that they will knock out the pneumatosis. Not clear that the pneumatosis is related to treatment--neither Penn nor MSK are aware of it being a side effect. If things weren't going "well" from a melanoma standpoint, I probably would be continuing nivo (and may return to it in any event). So, at risk of jinxing myself, I've been stable or better as a result of ipi/nivo for more than 18 months. Otherwise, life is great. Recently, our washing machine flooded (and ruined) the first floor of our house. I immediately thought how great it is to be dealing with mundane problems like home repairs versus the life-threatening challenge of Stage IV melanoma. Don't know if my stability will last, but I'll continue to take it--and be grateful for it--one day at a time. Best, Mat
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Re: Update (All good)

Postby buffcody » Mon Sep 11, 2017 12:55 pm


Glad to hear that fundamentally all is good. "All" is never really all for us but it sure beats "not". Here's to even better days than good! Frank
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Re: Update (All good)

Postby Catherine Poole » Tue Sep 12, 2017 8:23 am

Thanks for sharing. I also wanted to share that Matt starred in our video found here: http://melanomainternational.org/events ... ence-video
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
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Joined: Wed Jan 02, 2008 12:09 am

Re: Update (All good)

Postby goldfidler » Wed Sep 13, 2017 10:20 am

Thanks for the update. Glad to hear things are going OK, you are still around to post the update, and we are all here to read it. Stories like yours gives hope to the newly-diagnosed.

Less than five years ago, our options were much more limited and definitely less effective. You could have Chemo or Chemo or, if not that, you could have Chemo. In a very short period of time, we have some real options. While they don't always give a long-time durable cure, they do extend life while maintaining a real quality of life.

We need to be grateful for the new therapies like the Ipi/Nivo combo, Keytruda first-line treatment, Opdivo, Gamma Knife, and targeted SRS. We also need to be hopeful for newer trial therapies like TILs and other programs at the NIH.

While we need to be strong for ourselves, we also need to recognize our contributions to the "next generation" of people diagnosed with melanoma. Others paved the way for us to be able to have these new therapies and our participation will enable the nextgen to have even better options.

We are happy for you, MattR. Stay strong and keep the fight.
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