Seeking Help for Severe Skin Reactions to Lung Cancer Treatment

I'm on amivantamab and pemetrexed now for maintenance. When I was on the carboplatin/pemetrexed/amivantamab for 6 cycles (amivantamab for only 1/2 the time because severe break out with lip soreness and swelling and bleeding lesions on my face and just inside my nose [luckily not inside the mouth!]. On indirect suggestion from drug rep, I looked into zinc. If zinc level is low, zinc supplement helped with skin issues. If zinc level is normal, then supplementation did not help. Amivantamab was restarted when I went on pemetrexed at reduced dose with zinc supplement and no skin issues almost a year in. Article us medical but: Zinc deficiency with cutaneous toxicities induced by epidermal growth factor receptor tyrosine kinase inhibitor therapy in patients with lung adenocarcinoma. Journal of the European Academy of Dermatology and Venereology, Nov 2022, 37(2): 328-339. Sorry not to post a link, but article is on my laptop and app is on my phone. When I was on higher dose supplement, after several months, it affected my taste. When I stopped, taste gradually went back to normal, but then lip started feeling weird and had some blood crusting just inside nose again, so back on zinc but just 1 a day. We have not rechecked zinc level. I go by symptoms. Hope this is some help. Tagrisso made my nails very brittle. On amivantamab nails back to normal, but I have recurrent problems with recurrent/chronic paronychia (an infection in skin around the nails) and something called pyogenic granuloma. Also had paronychia with Tagrisso. Skin is epithelium, so anti-EGFR ("epithelial growth factor receptor") drugs would be expected to affect skin, lining of nose and mouth (also epithelial), etc.

I also am on Amivantimab and it has caused me to break out with seborrheic dermatitis on my scalp. I am losing quite a bit of hair, although that could also be due to the stereotactic radiation I had done in July to my brain. I'm on a reduced dose of amivantimab, I believe that helps mitigate my symptoms. I, too, have a nail bed infection on my left big toe and they have me on Cetflex antibiotics. It doesn't look like it's going to take care of it, and I hate the damage antibiotics do to my microbiome! I have had 36 rounds of stereotactic radiation in my brain and fear I will have to have more. My oncologist Advised me to have whole brain radiation Which is something I would only consider if I were Absolutely at death's door. I am so thankful that I have had very little pain during my six year ordeal.

Dealing with severe skin reactions during cancer treatment can be incredibly challenging, and it sounds like you're both working hard to find solutions despite trying multiple approaches. Many community members have shared experiences with similar treatment-related skin issues, and connecting with others who understand these specific side effects might provide helpful insights and emotional support during this difficult time.