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mmbraddock

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      mmbraddock
      Participant
        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!
        mmbraddock
        Participant
          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!
          mmbraddock
          Participant
            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
            mmbraddock
            Participant
              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!
              mmbraddock
              Participant
                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.
                mmbraddock
                Participant
                  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.
                  mmbraddock
                  Participant
                    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+?
                    mmbraddock
                    Participant
                      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.
                      mmbraddock
                      Participant
                        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.
                        mmbraddock
                        Participant
                          Hi!
                          I was disagnosed 3b in January. Are they testing for Braf+? If so that is probably to see if you are a candidate for targeted therapy. I had an ultrasound biopsy after the needle biopsy to check for braf+. I was Braf+ and doing targeted therapy w/ Braf/Mek. I would be interested if it is another type of genetic testing. Hang in there.
                          MM
                          mmbraddock
                          Participant
                            Hi!
                            I am on Braf/Mec 12 a day. I had symptoms first day. I couldn’t believe it. I had severe muscle and join pain and unable to take more than a few step by the late afternoon and had diarrhea and vomiting through out the night. My liver enzymes spiked and they took me off of treatment plan for one week. I went back on my body somehow adjusted to the meds. Only symptom I have now is fatigue in the afternoon/early evenly and mild muscle and a joint aches. My liver enzymes were normal after week back on meds so I was able to stay on the full does. I take 3 mek am and 6 braf/3 mek at night. I also take a zofran at night. I initially took the higher dose in the morning but found sleeping through the higher does worked better for me. Hope she is adjusting and it is melting the tumors away.
                            We are all here b/c we are looking for some type of support. Cancer is not easy.
                            Hang in there.
                            MM
                            mmbraddock
                            Participant
                              Hi Brain,

                              I had a wide excision removed on the back of my leg 1/5/16 It was stage 1B. I was 40. Assumed after 6 years was in the clear from that sight….I have been seen at Moffitt for my skin checks since 2016. My last apt was September and all good. I felt a swollen lymph node in my groin on 1/6/22. I was diagnosed on 1/12/22 with a reassurance in the lymph node so now stage 3b. I started treatment on 1/29/22 in a clinical trail at Moffitt. I was very lucky I was already in the system so things moved very fast. I am doing Braf/Mek 12 pill combo neo adjunct. I have been every week for blood work since starting b/c my liver enzymes jumped up from dosage. Initially had a lot of side effects but my body seems to be adjusting. Will know more tomorrow re liver if I have to cut dose or stay on the initial dose.

                              I am just over a month over diagnosis and I feel very isolated in my experience as well. I posted about the trial on here a couple of weeks ago and found someone else participating in the same trial at Moffitt. We both had appointments last Thursday and were able to meet up. It’s great having someone to text and chat with who can relate since on the same plan. Also super lucky b/c she is very upbeat and positive. Hasn’t been an easy month but glad I joined the forum b/c it has given me someone else who understands the entire process and the heartache of it all.

                              Hang in there. Happy to chat offline if you want.

                              MM

                              mmbraddock
                              Participant
                                Hi Jenn,

                                I am sorry to hear that you are undergoing another treatment and the brain met. You sound tough but it’s a lot, for anyone. I am still in a fog phase so thanks for responding. Feeling pretty isolated.

                                I was in a ton of pain first week. Couldn’t walk after 4pm, throwing up all night, so tired but then symptoms improved after a week and mostly just fatigue. I was shocked by liver numbers today. In my head, I don’t want them to lower the dose b/c it will make it less effective but I can’t damage my organs. UGH. How did we end up on this roller coaster?! Stupid genetics.

                                Hang in there Jenn.
                                MM

                                mmbraddock
                                Participant
                                  Hi Max,

                                  I had another oncologist suggest I have the lymph nodes removed ASAP once confirmed Melanoma and do the Targeted Therapy/Immunotherapy after the surgery. My oncologist at Moffitt believes the targeted therapy prior to the lymph node removal significantly lowers chance of it returning as stage 4.

                                  Feel free to ask any questions. Try to remember online stats don’t include the latest data b/c new treatments are making melanoma curable! We can’t control what happens only how we respond. Hold on to hope.

                                  MM

                                  mmbraddock
                                  Participant
                                    Thanks for sharing! I think with this trial they do targeted therapy or immunotherapy after the surgery. Whatever it takes, I am all in! I have three teenagers who are having a tough time with all of this…hope you are doing well!
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