Paradigm Shift in Thinking: Living with metastatic melanoma

Posted by grammato3 @grammato3, Mar 1 10:16am

I attended a full day Melanoma Excange Patient Forum webinar this past Wednesday that offered some encouraging as well as sobering facts. Such as advances in OS (overall survival) has improved enormously from 2011 when prognosis was approximately 6 months for metastatic melanoma to greater than 6 years - or more - today. I also learned that melanoma has the greatest risk of metastasis to the central nervous system than any other cancer, but that is why ongoing surveillance is so vital.

In any event, I came away with a profound shift in my way of thinking. That is: I don't view myself as HAVING metastatic melanoma, I am LIVING with metastatic melanoma. To some that may sound like a subtle difference in semantics, but it's big shift in perspective of dealing with a chronic condition. The former may tend to weigh one down, define who we are. I refuse to be defined by a disease process. I am still who I am, enjoying activies that make me happy and whole, interacting with people I enjoy being with. I am living my life and even if side effects or adverse effects interfere on occasion, I will not dwell on them - I am grateful for the medical advances that have been made to allow me to contine to thrive. That is my focus and for that I am grateful.

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

isadora2021 | @isadora2021 | Mar 14 6:20pm

In reply to @grammato3 "That is a great way to frame it: different life, but one well lived. Would you..." + (show)

@grammato3 Please do ❤️‍🩹

grammato3 | @grammato3 | Mar 17 1:10pm

So a little postscript to my living my life with metastatic melanoma: I realized the symptoms I'd started to develop that worsened after my increased dosage of Keytruda last Wednesday as I was starting my 6 week protocol were likely due to an enlarged thyroid (swelling, tenderness, difficulty swallowing). I made the right decision to call after hours RN triage line at Mayo and was seen by an onc PA yesterday who agreed it was likely acute thyroiditis so she sent me to the ER that was the only way to get into radiology. I'd never had an issue with CT dye before but first time for everything; suffice to say I'm glad I was there and had the expert care of the Mayo team who not only confirmed the thyroiditis diagnosis but stabilized me promptly and provided excellent management.

I'm going to request going back on the reduced dose 200 mg/3 wk schedule for at least the next few infusions especially as we're headed out of the country after one I'd scheduled and my husband is getting nervous. I think I'd better look into medical coverage while traveling also. Curious if anyone has had to do that?

vic83 | @vic83 | Mar 18 9:49am

In reply to @grammato3 "So a little postscript to my living my life with metastatic melanoma: I realized the symptoms..." + (show)

I went to Italy two years ago and I bought medical coverage for international travel. Even though my insurance said it covered some things. I wanted to be sure of no problems.
It cost me about $400 (I was gone a month). I didn't get travel insurance for cancelled flight etc. since I could reschedule with no problem if that happened.