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Metastatic Melanoma

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What was your experience with treatment for metastatic melanoma? Submit Your Comment

Comment from: Keith , 55-64 Male (Patient) Published: May 29

Three and half years I had Opdivo and T-VEC immunotherapy for metastatic melanoma. It started off good progress for the first two years. Then relapsed and started spreading into more lymph nodes and lung. It started in left foot and lymph nodes in the thigh. Now Opdivo and T-VEC are not working. Where do I go from here! My doctor wants me to go back to Opdivo. Wondering if l should plan my cremation now or should ask for straight up chemotherapy.

Comment from: DonnainRI, 65-74 Female (Patient) Published: September 17

I was diagnosed with stage III melanoma in 1976. It was on the back of my left thigh. I underwent wide excision of the lesion with in-continuity node dissection. They removed 18 nodes and one was positive. In 2015 I discovered a mole near my scar had changed and was diagnosed stage 2B, progressed to 3C then 4 last year. The checkpoint inhibitors were a disaster and my kidneys started to fail. I did ok for a year but scan in May showed many metastatic melanoma. I started on Tafinlar/Mekinist and scan in July was much improved.

Comment from: Lesley, 55-64 Female (Patient) Published: April 20

I had a lesion removed on my left shoulder in 2013 and informed at that time that it was 99 percent sure to be a basal cell carcinoma (BCC). It was scraped off and the cells around it burnt. I went back for the results and informed that no cancerous cells were seen on biopsy. I was discharged and my file closed. In late 2014 I found a large lump under my arm. I had a sentinel node biopsy which came back as malignant melanoma. I then had all the lymph nodes from my arm removed by block dissection. I then had a radical course of radiotherapy. However the hospital will not acknowledge that the lesion removed from arm in 2013 was the metastatic melanoma but have not found anything else on me to account for it, choosing to believe that the melanoma regressed and the body took care of itself. I am so angry; now 5 years since the lesion was removed and wondering how long I have left. In my favor so far it is not in my main organs.

Comment from: Holly, 55-64 Male (Caregiver) Published: March 20

My husband had a melanoma mole removed in 1999 and was told they'd got it all. No follow-up was advised other than 3-yearly skin checks which came back fine each time. Then in May 2014 he started feeling very ill, especially after eating. Turned out he had stage 4 metastatic melanoma in liver, adrenal glands, spleen and pelvis. It was a terminal diagnosis, and he quickly became very ill, dropping 12 kg in a matter of weeks. Because he had BRAF gene, he was able to have trametinib and dabrafenib combo, and this improved things remarkably for 8 or 9 months (they always said it would eventually fail as the cancer developed ways around the barrier). He was then started on immunotherapy treatment ipilimumab and it appeared to work for about 3 weeks, then failed as the cancer really geared up. At this stage the biggest tumor on his liver was over 6 inches across! His oncologist quickly stopped ipilimumab and started him on pembrolizumab (Keytruda), and within a few weeks (3 or 4) he began to start feeling better, much better. Sure enough CT scans showed the tumors shrinking. This continued for about 4 months after which his side-effects (severe back pain and loss of balance due to inflammation of spinal fluid) meant the treatment had to be stopped. We were devastated, but the professor said not to worry, as pembrolizumab had done its job, and sure enough, even though immunotherapy was stopped in November 2015, the tumors continued to shrink at every 3 or 4 monthly CT scan. It's now March 2018 and he continues to be totally well and on no treatment whatsoever (other than his usual blood pressure medicines), and the biggest tumor is about half an inch across. We know this is remarkable, and some of the medics are calling him a miracle man. We were also told that because he was 60 when starting immunotherapy, this may have helped in his response; apparently not so good on younger people unfortunately. A few months ago, the professor said that with such a good response as his, he has a 90 percent or more chance of a full life-expectancy, which is brilliant.

Comment from: LAURA, 55-64 Female (Patient) Published: March 01

I have been living with stage 3 metastatic melanoma for 13 years. I had noticed a mole on my left leg that looked funny to me and I had asked the doctor to remove it. It had turned very dark. It was removed in 1997 and the doctor said it is all fine. Two years later, I noticed it returned and it looked blue and black. I was sent to a plastic surgeon to remove it and take wider margins. It was sent off to pathology and I got the call it was all clear. Then I noticed a lump in my left groin. I had also had a sinus infection that I just could not seem to get rid of. I had been to the doctor a few times complaining of this lump in my groin, fatigue, and a sinus infection that I had tried 3 antibiotics that would not seem to clear it up. My sinus infection eventually cleared up but I was always tired. It hurt to lie on the bench on my stomach, my groin would hurt, and finally a locum sent me for an ultrasound. It came back as lipoma. Another 6 months passed and I could feel it getting bigger. I was sent for another ultrasound. It's a hernia possibly. In the mean time I had noticed a mole on my youngest son's foot that looked funny and went to a dermatologist, and that is when my life changed! He asked if anyone had melanoma in the family and I said no. But I have had tons of moles taken off, he noticed the large scar on my leg and asked if he could read the pathology report! It had been misread and that was melanoma in my leg. I told him about the lump in my groin, and he referred me to a surgeon for biopsy. It came back as melanoma in my groin. It had spread to the lymph nodes and indeed I also had a hernia. I had a radical groin dissection done, I had 18 lymph nodes taken out of my groin and well as a 2.5 mm tumor. I had a drain tube in my leg for 6 weeks and could not walk or sit. I got a bit of infection in the site where the drain tube was so they took it out early and gave me antibiotics. My chances of beating this was 50/50. I started interferon 3 weeks later every day at the cancer clinic for a month then I was to do home injections for a year. It was to increase my survival rate 11 percent. I was having every side effect from interferon on my kidneys and liver, as well as severe depression and I was taken off it. I tried to resume my life after 3 months and the swelling in my leg and pain was getting crazy! One evening I started feeling ill and called an ambulance. By the time I got to the hospital my leg was bright red and it was spreading, my fever was 109. I had septicemia. I was put in an ice bath, and hooked up to IVS, vomiting and feeling on fire and barely conscious. I was in Intensive care for 14 days on every cocktail to save my life and limbs. After getting out of the hospital and recovery time in 2007 my body has never healed. The cancer has returned in my breast 3 times and again I am scheduled for more surgery but I am scared I will not make it this time, I am so full of edema and muscle waste and tearing.

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