› Forums › Cutaneous Melanoma Community › SLNB Back Stage 3a
- This topic has 23 replies, 9 voices, and was last updated 5 years, 10 months ago by
Bubbles.
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- July 26, 2019 at 1:10 am
So if got my SLNB back and the surgeon sad that there was a “speck”as she called it in one lymph node. When they did my lymphatic mapping, the traser/dye went to both underarms so she took nodes from both. I had a 1 mm spot in the first node from the left side. No other (out of the 10 she took total…5 on each side) and margins were clear around mole biopsy area on my back. Next I’ll have a scan and then go to the oncologist. (Melanoma Oncologist). I’ve read several places that most do not take immunotherapy for stage 3 a. My original pathology was 1.5 mm no mitosis, no ulceration, no regression….it scares me to think of not taking some kind of treatment because I’ve read so much about it coming back and spreading. Thoughts? Questions to ask the oncologist?
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- July 26, 2019 at 3:16 am
Here is a link to ASCO series from June meetings 2019, series of 4 or five videos covering various aspects of stage 3 (adjuvant) treatment. Basic questions to ask would be is tissue being tested for Braf mutation? If you are going to just watch and wait then what kind of follow up will be offered and how often will scans(ultrasound) be done? Pembro adjuvant trial included 3a patients, so I would want to know what benefit did this specific group 3a have in the adjuvant keynote trial. What toxicity risk are you comfortable with is something you are going to have to come to terms with if you decide or are offered treatment! Here is the link to ONclive (which is worth joining, no cost!!!) https://www.onclive.com/peer-exchange/malignant-melanoma-management/stage-iii-melanoma-personalized-management -
- July 26, 2019 at 4:06 am
Sorry to hear about your results! I was hoping all your nodes would come back negative. I am stage 3. After my SLNB came back positive (2 out of the 3 nodes they took were positive, and I think my surgery was just as surprised about the results as I was) I met with my medical oncologist and he recommended I have a complete axillary lymph node removal. My surgically oncologist didn’t think that was necessary. He suggest just monitory that area with an ultrasound every 3 months. I wanted to be as aggressive as possible and after lots of thinking and prayers I decided to have the surgery and he removed a total of 17 nodes that all came back negative. Again, being as agresssive as possible I started immunotherapy therapy. I am in Opdivo and have treatment every four weeks. My big questions were what the side effects of the treatment would be. And before I started treatment I went to a ‘Opdivo teaching’ appointment with one of their nurse practitioners and she went over all the common and possible side effects and what they monitor in my blood work (thyroid function, liver enzymes, WBC count…) it’s a big decision to make and I think Ed’s link will help give you more info along with the info the oncologist gives you. Best of luck!-
- July 27, 2019 at 4:20 am
I just had my 5th treatment this week. I get an infusion every 4 weeks for a year. I’ve had very mild side effects so far- mild joint aches every now and then and mostly just tired (but nothing that is too extreme) and I’m not really sure if it was from the Opdivo or having a new born Ha! My liver enzymes went up before my 3rd treatment but not high enough for them to postpone the treatment. so a couple weeks later I had a pet scan and blood work again. My scan was clear and my liver enzymes were back down before my 4th treatment, but looks like they went back up before my 5th treatment. I’m still working and just living as normal as possible. This site and the members are amazing! It took me months after I found this site before I posted or replied but just reading other posts has increased my knowledge and helping me understand this whole new life of living with melanoma. -
- July 29, 2019 at 5:08 am
I do blood work before every treatment. They take my blood then if everything looks good (usually takes about an hour to get some of the results back) then I go to the infusion room and get treatment and that usually take about an hour. (The actually Opdivo drip lasts 30 minutes but by the time they get the IV in me and then get the Opdivo from the pharmacy and ask a bunch of routine questions it takes about an hour). I’ve had two scans. My first PET scan and MRI was after my SLNB came back positive. The doctor said I would have scans every 3 to 4 months once I started treatment, I just had my second scan several weeks ago (I was about due for a scan plus they wanted me to have one due to the increase in my liver enzymes) and that scan continued to show no disease! Please keep us updated!
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- July 26, 2019 at 12:01 pm
Sorry you are dealing with this, Momto3. You may be interested in this thread as it relates to 2 patients, one 3a and one 3b (though one has a pre-existing autoimmune diagnosis…so that complicates things and is not, as I understand it, part of your reality. The article linked in my post is pretty good as is the link I provided to adjuvant reports. Here is a link to a primer I put together that may be helpful when thinking about the various treatment options: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html Hope this helps. I wish you my best. Celeste-
- July 26, 2019 at 1:24 pm
Thanks for sharing that info! It’s a lot to take in. I feel like I would like to seriously consider adjuvant treatment. I’m not sure I could stand just waiting….feeling like a time bomb, but if I did some treatment, I would at least feel like I had done everything I could to prevent it from coming back. That phrase…until you reach toxicity…..freaks me out a bit! Lol….I picture someone getting their arm twisted until they cry UNCLE! I do need to continue to work! I have my scan Thursday and the I’ll get my oncologist appointment. I’m interested to see what they recommend. Thanks so much for sharing info! -
- July 27, 2019 at 5:25 pm
I was diagnosed with IIIa last year and just finished 26 treatments of opdivo. My oncologist said we could watch and wait or continue with immunotherapy as I had microscopic cells to one node insurance would cover it. There was no way I could watch and wait as I had a 6 month old at the time. Wanted to do everything and anything to prevent recurrence. I handled the treatment extremely well. Side effects mostly with my thyroid and a little rash. Let me know if you have any questions! -
- July 29, 2019 at 12:34 am
I am a worrier too which is why I had no doubt in my mind I would do the treatment. The immunotherapy caused me to have hypothyroidism so now I take thyroid medicine everyday. I’m not sure if this will be permanent or if my thyroid function will come back. They check bloodwork all the time and manage the medicine accordingly!
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- July 26, 2019 at 3:27 pm
Another ONclive video from 2018 on adjuvant treatment options and issues, this video features dr. Postow of NY. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-in-melanoma-safety-and-efficacy-
- July 26, 2019 at 7:27 pm
One last video that features 3a decision making from 5 different hospitals across US. Moffit, MD Anderson, Boston, Pittsburgh, New York. https://www.onclive.com/peer-exchange/malignant-melanoma-management/stage-iii-melanoma-changes-to-staging-system
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- July 28, 2019 at 12:01 am
This one hits one for me as I go was found to be stage 3a with SLNB in my neck. I opted for surgery with removal of an addition 8 lymph nodes which were all thankfully negative. I was not offered close observation and not immunotherapy. I get CT scans every 6 months and see my Derm every three and so far 18 months later I am clear with no recurrence. That said the thought often creeps into my head if I should have sought a second opinion because if I ever do have a recurrence did I do all I could have to prevent it. It is a hard choice and an educated decision. Good luck and let us know. Your in my thoughts and prayers -
- July 29, 2019 at 9:47 am
I find it very annoying that people always tend to ignore statistics and get recently diagnosed stage 3 patients more worried that they should be. If you are 3A you have on average a 63% chance that melanoma will never return (without treatment) and if your tumor load in you SLNs is very low *dwar, starz or Rotterdam model applied* you have an well above 80% chance of staying in remission.Even a stage 3b has on average a better than 50:50 chance of NON- RECURRENCE !
So please stop insinuating to newly diagnosed people that you are the fortunate ones, just because you are NED. You are the majority (in case of stage 3a). Besides, this forum is not representative at all, since people who are in remission long term tend to enjoy their lives and don’t bother visiting melanomg.org !!!
I hope this gives you a more positive perspective on the subject besides the tremendous advancements in melanoma treatment.
Chris-
- July 31, 2019 at 4:48 pm
Thank you Chrispl1974.,
I’m one of the people diagnosed with 3a from whim observation was recommended with an oncologist and a melanoma specialists at Sloan Kettering. Reading these posts is very scary. Thank you for bringing some light into it.. stay well. -
- July 31, 2019 at 6:08 pm
Actually, Chris, your numbers aren’t quite right. The data out of this June 2019 report (a link is provided in the thread), which I shared in some advice to some Stage III peeps a page ago in this thread: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/melanoma-stage-3bNotes: “In patients with stage IIIA disease, regardless of BRAF mutation status, the chance of disease recurrence is less than 20 percent, and therefore, observation should also be considered an option. This is particularly true for stage IIIA patients with sentinel lymph node tumor deposits <1 mm, where updated staging data suggest that this group has a five-year relapse-free survival rate of 91 percent."
So....the odds of recurrence are LESS - therefore BETTER - than you allude to!!! And that is good news!!!
Many of us melanoma peeps who are lucky enough to remain NED do stick around MRF, though clearly many do not...not to frighten people, but to lift them up. I don't think anybody diagnosed any kind a way with melanoma is "fortunate". But, you are correct that there are many positives in melanoma treatment today, no matter your stage, that didn't exists just a few short years ago. Wishing you all my best. Celeste
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