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Stage IV or more

Stage IV or more

Posted By
4/22/2019 2:22pm
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Replies: 1

Hello all

Sometimes I feel like there are not enough "stages" to adequately cover the variation of mets for melanoma patients. My husband is stage IV but the mets are spread throughout his body ( lung, pancreas,liver, kidney,bone), the main bulk in his brain. He is amazing. Recently just decreased Braf/MEK combo due to debilitating side effects and although he cannot walk very well ( combo caused extreme joint pain which left him with residual left leg weakness) he is sleeping and eating great and enjoying getting around with a walking frame and wheelchair ( he is 53). We feel very lucky to have some pain free, nausea free time to spend with family. I am now hopeful we will have lots of time with adjusted treatments and am very grateful for this support group that keeps me sane when things are bad in the middle of the night and I feel alone. Its funny how this roller coaster takes you from feeling helpless and desperate to hopeful and then you worry about being too hopeful. Crazy right? Seriously Im going with hopeful. Well anyway thank you everyone for sharing your journey. I feel like every week I am getting use to a new norm but really hope this one lasts a bit longer as its a pleasant relatively symptom free period and I wish the same fr you on your journey to recovery.

Bubbles - (4/23/2019 - 11:44am)

I am glad your husband is having some relief from pain and nausea.  Hopefully, other things will improve soon.  Yes, it is hard to know what to call melanoma awfulness.  However, as Emma Thompson's character in "Wit" noted....."There is no Stage V!"  (A truly wonderful and real story...if you can take it!) So...we roll with what we have though the many horrifying variables so many melanoma patients deal with daily seem woefully unaddressed by their 'stage'.  Hang in there.  Your husband is lucky to have you.  Wishing you both my best.  Celeste