› Forums › General Melanoma Community › Update (All good)
- This topic has 9 replies, 9 voices, and was last updated 5 years, 8 months ago by WithinMySkin.
- September 9, 2017 at 2:03 pm
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
- September 9, 2017 at 2:29 pm
Great news Mat! I recently had washing machine trouble myself, oh how nice it is to be frustrated with a home appliance and not worrying about stuff going haywire in my body!
- September 9, 2017 at 2:33 pm
Oh, Mat!!! That is great news!!! I'm still hoping the pneumatosis is just a fluke you wouldn't know you even had were you not being scanned regularly!!! I am sorry about your house though. However, for most of us, melanoma has a way of putting things in perspective, doesn't it? The sister who traveled with me for many of my treatments had flooding in her house TWICE!!!, while we were doing all that. Simultaneously, another relative with no flooding OR melanoma regaled us with how they stayed awake at night worrying about much lesser things. We managed to remain silent…though later my sister said, "I might stay awake if my kids are hurt or my sister is dying of melanoma. But, for a flooded house, or something that injures no one…NEVER!!!" I try to live with that perspective daily…even when the mudane **** hits the fan! Hang in there!!! I have my fingers and toes crossed for you every day!!! love, c
- September 9, 2017 at 5:53 pm
Hi Mat, glad to here the good news. Stable for 18 months is great, I like the idea of spreading out the treatments of nivo, makes sense to me!!! Take care!!!Ed
- September 9, 2017 at 7:03 pm
That's great news Mat! 18 months! I totally agree with you. Dealing with regular life happenings appear to be a no brainer when battling a disease like melanoma. Puts things into perspective.
One day at a time. Wishing you the best.
- September 9, 2017 at 9:22 pm
Great news Mat! I too think its important to chill (thats what i learn from reading Celeste's blog though I dont think i am ever going to take up sewing!). I do wish someone very close to me would do the same. real things to worry about are stuff like melanoma and hurricanes. the rest is fine. having melanoma does give a sense of perspective on life and what is valuable and great about life. and also that most things are not crises.
- September 10, 2017 at 1:41 am
Great to read your update and hear about your 18 month run. Sorry about the washing machine.
As everyone has said, melanoma certainly does give you perspective. I find myself daily trying to remind me of that. It's only magnified now as the random patient story at the right of the text box is from Artie Vangampler. Every day's a blessing.
- September 11, 2017 at 2:07 pm
Congrats brother! Hopefully you can get a handle on all the other issues. Your story still inspires.
- September 14, 2017 at 9:23 pm
Hey Mat! I'm sorry to hear about your side effects – I hope things get back on track soon! It IS amazing the change in perspective, isn't it? I feel like I'm a whole different person now that life's given me a great big shake to get with the program. I've adopted the saying "Don't sweat the small stuff. And it's all small stuff!" Wishing you another stable 18 months ahead!!
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