mmbraddock

I am 49 and just did two rounds of ipi/nivo and felt like I had acute early onset dementia. I was always searching for words. Off treatment and cognitively back to my 40-something self. These drugs are no joke. Hope it gets better!

I agree. Sounds inconclusive, seems like you should have had an FNA? Did I miss that? So sorry you are having to deal with this nasty disease. It’s tough. Hope, courage and grace to you on your journey, Hope it gets easier.

Thank you for sharing. I was diagnosed stage 1b at 40 in 2016. Stage 3b 1/12/24. 5 months braf/mek. Preadjuct. Grade 3 Adverse Event. Severe Colitis. Two month delay in between treatment and lumpectomy, Almost complete responder. 9 months steroids. 6 colonoscopies and dialations. 6 hospitalizations. 6 months enyvio which induced severe chronic back pain. Finally feel good in 8/23. 11/23 local relapse 3 more lymphnodes removed in groin. Increasing back pain. Start Gapepbtin. 4/24 severe adverse event to gapepentin which creates accute stiff person syndrome, resolved with abrupt use of Gabelentin. 7/24 in transit tumor near scar from lymphdecyomy. All local reccurances so still stage 3b. Spent this summer on ipi/nivo preadjunct. Six weeks to the day of first infusion. Rapidly spreading rash by 1:30 am fever, labored breathing, rash all over body, admitted inpatient at Moffitt with protectial DReSS syndrome not classified severe side effects. Jusr got of steroids. Surgery postponed. Was planned for 9/6. Rescheduled for this past Thursday. Saw surgeon and oncologist derm on Wednesday. Thursday Helene hits Tampa! My hometown hit, so much suffering and distruction. Surgery now to remove tumor which has shrunk but really need a break. Thank you for HOPE! I pray for hope, courage and grace every night. I am 49 and hope to be on your side of “the statistics!” Thanks for the reminder!

I was stage 1b and it came back stage 3b in 2016. My suggestion is do it! It could stop you from having to ever deal with progression. If it’s a single agent it should be bearable but again you never know. They beauty of doing it proactively is you can stop if it’s too much. I did end up having an adverse reaction when I was on full dose of braf mek. Caused severe colitis, two perforations, 40 days in patients, six hospital stays. Entyvio for colitis for six months after nine months of 30mg steroids everyday, six colonoscopies and dialation. Surgery to remove 16 lymphnodes. 15 months later another surgery for additional lymphnode 2023, Drug reaction to gabepentin in April 24, needed for nerve damage from back to back surgeries. Now on ipi nivo for satellite tumor in same region. Will have another surgery, I am praying this treatment will work and keep it at bay but the last two and half years have been HARD. If you can try to ensure it won’t come back do it!!! You don’t want to be in a position where you know the outcome if you don’t do it! Good luck to you! Not trying to scare you but progression can happen so being proactive would be no brainer for me! Good luck and whatever you decide, realize it’s all a dance. Nobody really knows, we are all just hedging our bets!

My son is 16 and has probably had six biopsies. I have stage 3b melanoma. From my understanding, Melanoma is actually more linked to skin characteristics, although genetics can play a role. My son has my characteristics, strawberry blonde hair, freckles as a kid, more than 50 moles. Only difference is he didn’t get sunburned except one time (I was horrified) as a kid. I did have a genetic test done at Moffitt that tests for Genetic Markers for cancer links. I do not carry a genetic link, which is great. My dermatologist and his said he cuts everything off bc better to get anything concerning biopsied now so as he ages the concerning moles will be gone bc statistically kids go less in college and in their early 20’s for skin checks. So cut away! There has been some precious evidence that a shave is more high risk than a punch in the case that it was something you are more likely to get it all with a punch where as with a shave it could potentially not go deep enough. Not sure if this is valid but heard it years ago. Just a few thoughts as another teen mom.

Hope it all turned out well! I actually google search melanoma but only the news section! There are a lot of exciting advances rolling out. Silver linings everyplace!

I did targeted therapy and had terrible side effects during treatment but after the drugs braf/mek where out of my system the side effects of the medication disappeared. Although they did cause a grade 3 adverse event but my lymphnode went from 1.6cm to .4mm in 5 months!

Hi Jeff!
I was diagnosed stage 1b at 40 and had wide exicision surgery at Moffitt Cancer Center. Followed up every three months for five years and all good. Two years ago, I felt a swollen lymphnode in my groin. They biopsied it that day and I started a trial at Moffitt within two weeks. Everyone has a different take on trials but I get very consistent close care and cutting edge treatment. I was braf+ and did preadjunt treatment (targeted therapy before my lymnohnode dissection. I jusr suggest looking into options rather than standard of care, if possible. I am lucky I live near one of the best cancer centers. Feel free to message me directly with any questions. The waiting is the hardest part, treatment is not a breeze but at least you are “fighting it.” All the best. MM

I am so happy for you! Thanks for sharing your positive news! For those of us still in the trenches it’s great to hear long term NED. Whoo hoo!

I am sorry to hear about your experience. It is very frustrating when communication is not clear. I am fortunate to live in Tampa so have access to oncologists who work specifically in skin cancers. I would suggest seeing if there is anyone local that specializes specifically in melanoma. I have found it helpful to email and send messages through the patient portal to clarify questions are concerns. Hopefully, they will be responsive and give you the answers you need quickly. Advocating for yourself is key! Hang in there, it’s tough.

Hi,
It is a scary thing to even think about. Hopefully, it is not Melanoma but IF it is the biopsy will help identify possible treatment options. I was 1b in 2016 on my thigh. Swollen lymphnode in groin in 1/22 biopsy confirmed melanoma. If you contain a BRAF mutation your treatment might include targeted therapy. There is research indicating targeted therapy prior to node dissection increases chances of overall survival. I started targeted therapy in Jan and had my lymphnode dissection in August after the lymphode had considerable shrinkage. Hope tomorrow goes well and you get speedy results. Will be thinking of you.

Yea, yea, yea! I remember my husband and I drank champagne when we found out no mets and then looked at each other and i said “oh yea it’s still stage 3, why are we celebrating”, then started laughing. The little victories make a bad situation a little better. It isn’t an easy road but you will persevere and learn a lot, about melanoma and yourself. Did they check to see if you are braf+?

Hi!
I am so sorry to hear about your diagnosis. I am 46 with three teenagers, 18,17 and 14. I had stage 1B wide incision at Moffitt Cancer Center 1/5/16. Followed up 3 months with derm at MCC also established with derm at Mayo Clinic in Jacksonville as part of an executive physical program. Felt lump in right groin (while I had Covid) and biopsy proved to be melanoma. The time waiting to find out staging was the worst for me and then waiting for treatment. I was super lucky because I live in Tampa and was already established at MCC. I started a trial on 1/28/23. I go in for my 4 month appointment on Wednesday. I am on 6 months of braf/mek and have been able to tolerate full dose. Harder than I expected physically BUT it is working! My lymphnode went from 1.5 cm to .6cm in three months which is considered an excellent response. I will have surgery July or August. Feel free to reach out directly. I had heavy sadness after starting treatment BUT it’s gotten easier as time goes by and closer to the finish line with this treatment.

Hi! I was diagnosed stage 3b in January 2022. I am on my fourth round of Braf/Mek. I have been able to tolerate the full dose. I am 46 with no other health issues. I have extreme fatigue that comes in waves and joint muscle pain that limits activity in the late afternoon and evening. I was sick the first two weeks and had yo take one week of bc of high liver numbers but after the week off bloodwork has been good. I take 3 pills 8am and 9 at 8pm. I also take zofran with night dose. My right groin lymphnode went from 1.5cm to .6 in three months. Next scan July.