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Hi everyone, I’m new to this forumn. My name is Lee Parsons and I was diagnosed with Melanoma in summer 2019. In September 2019 I had a cancerous mole removed from my right lower leg. In April of this year, I had a second cancerous mole removed that was near the other removed mole. At that time the doctor recommended that I have a CT Scan. From that scan I found out that the melanoma had spread to the lymph nodes in my pelvis, as well as some other area in my body. Normally I would have had those lymph nodes removed, but because I have respiratory issues and lymphedema that wasn’t a possibility. Found out that the treatment for my melanoma would be immunotherapy called Pembrolizumab (Keytruda). It is risky for me because of the chance of severe side effects, and I’m already at a disadvantage because I’m immobile in a wheelchair with respiratory issues as well as liver issues. Has anybody with similar issues had this treatment and how were your side effects?
These days we know a great deal more about how to manage these drugs, including their side effects, than we did when they were first approved (nivo in 2011 and pembro in 2014). Most side effects can be managed with steroids and a drug holiday if needed. Be sure to report any untoward effects you may experience to your doc sooner rather than later as that is when such side effects are easier to manage.
For myself, having taken nivo for 2 1/2 years after advancing to Stage IV melanoma with brain and lung mets, I experienced itchy rashes and vitiligo, dry mouth with oral sores, joint pain, fatigue, and wheeze. (I have asthma.) It wasn’t the most fun ever, but it wasn’t the worst – HA! I continued to work full time, 12 hour shifts, missing only 3 days in those years. The best news is that I remain NED for melanoma with my last dose having been in June of 2013 with no further treatment.
I am sorry you must, but you can do this!!! Ask more questions as you have the need. This board is comprised of many amazing, smart and caring peeps. I wish you my best. Celeste
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