Hello! I hope you are all having a happy and healthy day. This is my first post on any forum, and I guess I’m just looking for some hope at this point, or just someone that understands. In March 2021, I was diagnosed Stage 1B (1.8mm Breslow, negative sentinel lymph nodes) with the primary lesion on my right lower leg. I was then put on surveillance with my dermatologist and oncologist. A couple of months back I noticed a lump in my groin right near where they had done the SLNB. Fast forward to this week, after a groin ultrasound and biopsy, and sure enough the melanoma has returned. I am just devastated. I want to be positive and fight this thing head on, but I keep getting lost in thoughts of sadness and despair that are taking over my life. I have a wonderful wife and a just about to be 4 year old son, and I am just overwhelmed with thoughts that I will not be here for them. Next step is a PET scan and then likely a second opinion or two. Anyone else been in a similar boat and have a positive outcome? Thanks for reading, hope you all have a great day!
- May 11, 2022 at 12:17 pm
BubblesParticipantMost all of us here have been in your boat – in one way or another – sad to say! Sorry for what you are dealing with, Scout! But just as we are all in the same boat – we are here! LIVING with melanoma. You (and your doc) are right to take things step-by-step. There is much to learn when dealing with melanoma. I put this primer of current melanoma treatments together in 2017 and just updated it – Primer for Current Melanoma Treatments – New and Improved Version 2022!!!! It may help as a starting point in your treatment discussions with your oncologist.
- May 11, 2022 at 5:17 pm
While melanoma sucks great big green hairy stinky wizard balls – there is hope. I was diagnosed as Stage IIIb (a cutaneous primary with a positive node) in 2003 as a mom of a then 10 and 12 year old. Because there were no effective treatments at that time, I did advance to Stage IV with brain and lung mets in 2010. HOWEVER – after 2 1/2 years in a phase 1 immunotherapy trial with nivolumab – I have been NED (no evidence of disease) for melanoma ever since. My last treatment was in June of 2013. It won’t be fun or easy, but you can do this!! Hang tough. Ask more questions as you have the need. There are many smart and caring melanoma peeps on this board. I wish you my best. Celeste
- May 13, 2022 at 12:35 pm
Right Leg/Right Groin
As Celeste always informs, treatment has NEVER been better.
Are you seeing a Melanoma specialist??
They’ll have the absolute best treatment recommendations.
You’ll likely face a combination of treatments.
Neo Adjuvant (before any surgery)
Adjuvant (after any surgery)
My 2020 treatment plan
Neo Adjuvant — a few rounds of immunotherapy Opdivo/Yervoy (infusions)
Surgery (Removal of the lymph nodes)
(I did not receive additional treatments after the surgery)
In 2021, I did have a recurrence in an Adrenal Nodule
I’m BRAF+, so treatment plan has been:
6 months Braftovi/Mektovi Targeted Therapy (pills)
Surgery to remove Adrenal gland
6 months Braftovi/Mektovi
So far, grateful to say I’m doing well
No additional recurrences
Recovered well from BOTH surgeries
Please reach out if you have questions.
Sorry you’re having to add all of this to your “young mom” life — not fun — but you can do it. : )
JudiAUParticipantWhen my melanoma was found my youngest was 2 and stage IV was a death sentence. But when I progressed there was a world of new options. Immunotherapy is saving me and I am here. He is nine right now and I didn’t think I would live to see go to K. The advice on this board is really excellent so while some other places have a lot of traffic the knowledge and treatments discussed are not top notch. Make sure you see melanoma specialist, even just to help coordinate care. Treatments are evolving constantly.
- May 15, 2022 at 10:55 am
- May 16, 2022 at 1:50 am
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.
Thanks for all the responses and all the information! The doctor called this morning with PET/CT results and it appears that the spread is limited to the regional lymph nodes (2) at this time. I guess that is the best news I could have received today so I am thankful for that. I go in Friday to discuss the next steps which will likely be some form of immunotherapy to attempt at shrinking the nodes and seeing how my body responds. I think there will possibly be more surgery after that. For today I will try and celebrate this small victory!
- May 16, 2022 at 3:13 pm
chrispl1974ParticipantThats great news Scout. I vividly remember my negative CT & MRI scans, a week after getting told about the positive SLNs in my groin. Did BRAF/MEK for a year after that with hardly any side effects. I now in my 4th recurrent free year, although I had a scare about 2 months ago, when they found slightly swollen nodes in my groin. However, they returned to normal a couple of weeks later…. Hang in there and lets beat this nasty thing 🙂 VERY VERY HAPPY FOR YOU!
- May 16, 2022 at 6:54 pm
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+?
- May 17, 2022 at 12:30 am
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