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Posted By
5/12/2019 12:47am
Replies: 6

Hello all,

I haven’t posted since my initial 2a diagnosis in 2016. Since then I had a local deep recurrence and was put on Opdivo. Unfortunately, Opdivo didn’t work and recently 2 lymph nodes have come back s/p FNA + for melanoma. I was put on braf/mek in March, but after having a lot of bleeding and every other side effect in the book have only really been able to complete 2 weeks off and on. Has anyone had experience with Braf/mek? Did it help? Currently on a lower dose, but I can’t help but to be anxious about the outcome. Part of me wants to have to surgery to get the cancer out, most are saying to look into other treatment options. Also, would this put me at stage 3b or 3c? I’m 30 & a single mom to a 3 year old. Any positivity and advice is welcome. I go to Moffitt just not always confident in my care upon leaving my visits. Sending love and prayers to everyone ❤️.

Nympha - (5/12/2019 - 3:03pm)

Hello there :o)

My farher was diagnosed with III C stage on april 2018. He had reoccurence after 3 months after first melanoma removal. He was on Keytruda (similar to Opdivo) for 6 dosages, but it didn't work for him, too. Imunotherapy failed.. We were absolutely desperate, because his skin arround initial melanoma scar was full of big tumors (tenis and golf balls) .. Cancer was spreading.. Into his lungs.. He was laying in hospital, lost 30 kg.. I was crying everyday, had feeling he could die everyday there.. He looked soo poor.. So weak.. UNTIL.... They put him on TAF/MEK treatment..
From about 40 skin ball tumors, he has only two of them now!!! His lungs are clear!! His lymph node shrinked, and is clear now..
It's a kind of a mirracle! He is BRAF positive.. And it worked perfectly..
I wish you had so great response to this treatment, too!!
Wish you all the best!
Hope sharing our story will fill your heart with hope.. My father is 68 yo.

Dreaf01 - (5/12/2019 - 9:59pm)

Thank you! This is exactly what I needed to hear. My joints are swollen today and my mood is up and down. I really appreciate you sharing. Thoughts and prayers for continued positive progress. I have my three month PET scan Thursday and am terrified as usual. - (5/17/2019 - 9:25am)

thanks for sharing your story... very happy to hear that the result with TAF/MEK can be so incredible.
I was 3 C about 21 months ago but now I am facing progessiong on several zone on my body and do not know what to do exactly...
will meet onco soon to take a decision....
my brain is totally lost just right now...

Northern Son - (5/12/2019 - 5:58pm)

I was diagnosied with recurrance melanoma stage 4 2 years ago and surgury was not possible i was told ,large tumor in neck. I was put on Roche combo and was on just 11 days had bad skin reaction so stopped treatment. Over next 3 months tumour shrank away and PET SCAN then showed NED.I then started Novartis combo and have erytha nodosum like leasion as side effect that clear up when off Dabrafeneb and Meck. So am off and on drugs every 3 weeks even though i am on lowest dose.Iam still NED 21 months later. I hope this gives you hope as even at low doses and sometimes short time frame they can work wonders.Sending love and prayers to you,try to keep positive outlook i know that has helped me i hope it will help you as well.

Dreaf01 - (5/12/2019 - 10:01pm)

This is great news! I have my 3 month PET on Thursday and I have been feeling so crappy that I’m scared to even hear the results. I really appreciate your post. Prayers to you for continued NED status. I’m ready to get my life back ❤️

Dympsd - (5/15/2019 - 7:12pm)

My husband is stage IV has had surgery, cyberknife then immunotherapy which did not help as tumor spread. Started Bref/Mek January. Has had pretty awful side effects with temperatures, vomiting and joint pain so reduced to half dose for 4 weeks. Repeat brain MRI has shown tumor shrinking ( assuming his liver, pancreas and kidney ones are too) starting back on full dose this week again with good indication that the suffering has been worth it and hoping for more progress. Good luck to you