› Forums › Cutaneous Melanoma Community › Stage 3 Newly diagnosed
- This topic has 10 replies, 6 voices, and was last updated 5 years, 11 months ago by
Becky.
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- May 12, 2018 at 3:39 pm
My 17 year old son was diagnosed in February 2018 with 2.4mm malignant melanoma tumor when he had a mole removed from his scalp. We have since been through the surgical process, WLE, positive sentinel node biopsy for microscopic melanoma metastasis, and just last week he had his parotid gland removed and a neck dissection. We are awaiting the pathology results from surgery and we will be starting adjuvant immunotherapy, Opdivo infusions, regardless of the results in the next couple weeks. We are Stage 3, but no subclass yet, pending the surgical pathology reports. I am not a fan of the “wait and watch” approachand I feel the benefits of the immunotherapy definitely outcweigh the risks at this point. He is young and otherwise healthy and I am praying that will work in his favor. I am a nurse, a neonatal nurse. That is the farthest thing from an oncology nurse. I have submerged myself in research and have read and learned more about melanoma then I ever thought possible. I have read good and bad, and no matter what I read I find myself just completely overwhelmed at times. My son definitely handles this better than I do. He is a great patient and he amazes me everyday with his strength…one week post op and he is already ready to be back playing sports and leading a normal teenage life… The surgeon is confident with treatment my sons prognosis is “excellent” the oncology team is much more cautious when speaking with us. I just need to know I am making the right decisions for my child.
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- May 12, 2018 at 4:26 pm
Hi Anon "Nurse" mom, with Melanoma a couple of things are important. One, patients do better with small tumor loads, trial after trial have shown this data. Second, patients with higher levels of Pd-L1+ staining also do better as a general rule but I am getting pretty specific on that point. The pathology report should be able to give some data on Pd-L1+ staining if the hospital does the procedure. Now, with adjuvant treatment having two new options with both Pd-1 drugs now being available is really ground breaking. Less side effects, better progression free survival data, is the evidence for their approvals. Coming soon, targeted therapy and maybe even the combination of Ipi/nivo in the adjuvant setting, so all the treatments available to stage 4 will soon be available at stage 3. This should provide many with better outcomes and time. Time is a big factor with the pace of new approvals and new research, time might mean the difference from melanoma winning or patients winning. I know you said you have been doing some research, here is some more data, kind of a summary of what has been approved lately for adjuvant patients, plus a second link to Dr. Weber being interviewed about adjuvant treatments. Best Wishes!!! Ed https://www.onclive.com/web-exclusives/giant-of-cancer-care-shares-insights-on-adjuvant-therapy-in-melanoma http://www.cancernetwork.com/melanoma/adjuvant-immunotherapy-advanced-melanoma?elq_cid=11002&elq_mid=776&rememberme=1
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- May 12, 2018 at 4:27 pm
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- May 12, 2018 at 7:23 pm
Thank you for the links!!!! And thank you for your response!! I know In my research I had read the second article from Dr. Weber. Our pathology reports have not given me all the information you mentioned…this is one thing I have asked a few times…they seem vague to me…we do not have a mitotic rate other than >1 from the first surgery when the tumor was actually removed…and I do not know about the BRAF mutation either. The oncologist was supposed to be reevaluating the slides and requested certain characteristics to be added to the path reports from previous as well as the current path report we are waiting on. Again this is all so foreign to me and I am overwhelmed at times for sure. I just want to be asking the right questions and making sure we are leaving no stone unturned….
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- May 12, 2018 at 7:46 pm
I believe your son is on the correct path. I had a similar situation with primary in ear canal, removal of parotid and 4 levels of nodes (4 nodes micro-Stage 3C). I received 10 infusions of Nivo before adverse events forced me to stop. I had some of the worst ae's associated with the drug (heart, lung, diabetic issues, colitis) that only happens to about 2/1000 according to the doc. After one month I am able to walk 2 miles daily again and after 2 months feeling back to normal. If I happen to progress I will start the treatment again immediately with no hesitation. Scans next week will hopefully show 9 months NED since surgery.
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- May 12, 2018 at 11:56 pm
Hey read your post. I know you read a lot of bad stories on here but it’s skewed because most survivors don’t post anymore-they move on with their lives. I’m stage 3b-just had surgery and turned down everything else (radiation and interferon-all they had at the time). I’m cancer free since 2013 and I don’t have go back to the oncologist ever again after I had my 5 year cancer free PET. There is life after cancer! Your son will live to be an old man and talk about how he had a run in with cancer a long time ago.
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- May 13, 2018 at 12:36 am
Thank you so much for the positive words!!!!!! I am so trying to believe that and it helps more than you know to hear that from someone who has been through this!!!! How wonderful to hear you are a survivor and no longer need anymore treatment!!!!! That’s the best news!!!! I can’t wait to hear that news for my son!!!!!! He is supposed to grow old just like you said!!!! Thank you again!!!!!!
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- May 14, 2018 at 12:14 am
As a pediatric nurse practitioner, mom and Stage IV melanoma patient…I understand more than you think…but less than I can imagine because what happens to me is nothing…while my children are everything. Your boy sounds awesome as does his treatment plan. Here is a link that you may offer you no new info:
However, after initial diagnosis as Stage 3b in 2003 and progressing to Stage IV in 2010 with brain and lung mets. I remain NED after treatment with Opdivo via a trial from Dec 2010 to my last dose in June of 2013. Yes. There is hope. I wish you and your son my best. Celeste
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- May 14, 2018 at 12:37 am
Thank you Celeste!! I am so glad I decided to join the group…The more positive things I hear the more confident I am we are on the right path!!!! I am amazed everyday by my son..today 9 days after neck dissection he was back on the baseball field playing with his team…the best Mother’s Day gift ever!!!! I am thrilled to hear you are NED after taking Opdivo…I will definitely check out the link you gave me!!!! Good luck to you always!!!! And thank you so much!!! Kelly 🙂
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- May 18, 2018 at 4:36 pm
Kelly
My son was 20 when he was dx with stage 3 melanoma ( oral melanoma…talk about a shock) This was in 2009…this July he will be 30!! He also had a full neck dissection. He went thrugh a year of Interferon which is all they offered back then. He had to miss a semester of college, but went back and took a fulll load of classes, worked part time all while giving himslef injections 3 x a week. I think youth was on his side to get through this nd I am sure it will be the same with your son. Anyway…I hope this helps. I think of that first year as sooooo scary as well as every scan since then. Every Mothers Day feels like a gift. Hang in there!
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