stage 3 melanoma diagnosis

This topic has 7 replies, 7 voices, and was last updated 3 years, 7 months ago by DebbieH.

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- July 19, 2020 at 12:47 pm
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Phyllisd
Participant
My husband is a newly diagnosised melanoma patient.. This is so very scary and I am having a hard time with this.. our lives have changed and i feel lost at times.. the cancer has spread to two lymph nodes which they removed.. he had his first of 12 treatments of Nivolumb. Im trying to be positive an strong for him . but my mind is constantly thinking of all the what ifs… just looking for support through these difficult ahead for us.. remaining hopeful but still so scared… are there any other newly diagnosised stage 3 melanoma people out there? my husband has a positive attitude but he really doesnt want me to talk to about it or ask too many questions..

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- - July 19, 2020 at 5:18 pm
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  caman
  Participant
  Hi, well feel blessed you took care of it right away. I was stage 2 not knowing I was actually stage 3 until two years later, and I’m lucky it still hasn’t spread. I’ve been very fortunate so far. Just regional, not distant. Immunotherapy is probably in the top 3 medicinal breakthroughs in the past 3 decades, if not number one. In your case I would recommend getting a Tempus Study done on the cancer. Gives you a wealth of information you and your doctor need to know. Expect him to be extra tired while on the Medication. I wish him well.
- - July 20, 2020 at 4:22 pm
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  tkoss
  Participant
  diaggnosed 3c last fall, i had 4 LN roemved and have been on nivo twice a moth for 6 month of 12. 240 mg.
  
  i have had no symptoms and no side-effects I. had my first CT scan and no recurrence in LN’s. I. had a another mole biopsied and is was non-cancerous
  
  its hard to figure out i even have cancer. the only reality check there is when i visit the infusion clinic or get a statement from the insurance reminding me how much they are spending on me.
  Discussion of survival rates are from statistical results and have little to do with the individual . i have no reason to think i won’t live dozens more years. I am 64.
  
  Although the info is not conclusive , I am much more worried about effect of Covid combined with immunotherapy. So i am abundantly cautious about contracting covid.
  
  Very likely your husband will have a very good outcome.
- - July 20, 2020 at 9:14 pm
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  SABKLYN
  Participant
  Hi Anon,
  Worst time is right after diagnosis. As you might know, Stage 3 melanoma covers a pretty wide range of disease. Do you have a more precise description of his diagnosis? I am not recent, but in 2011 I was diagnosed Stage 3A with two involved lymph nodes. I had a CLND to remove the remaining lymph nodes in that basin and have been NED since. I did participate in a clinical trial since at the time, adjuvant therapies were far more limited. Plenty of people on this great board who have had stage 3 disease for extended periods. I’m sure others will respond as well.
  
  Regards,
  
  SA
  - July 21, 2020 at 12:21 am
    
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    Mark_DC
    Participant
    
    Dear Anon
    
    I agree with the other posters (who are regulars here!) except I dont know what a Tempus Study is so not sure I would use it.
    Right after diagnosis is the worst time – you are recovering from surgery (I was on crutches hopelessly with a plastic surgery skin graft that took forever to heal ahd looked disgusting too!) and then blindsided with this diagnosis and all the uncertainties. And you read all the bad prognoses and many sad stories.
    
    Most important advice is to make sure your husband is seeing a melanoma specialist. And, if you can, to support him while not asking too many questions (if he does not want). I am not sure why he is on treatment if all removed – I guess this is adjuvant treatment to prevent a recurrence (this option only became available a year or two ago). If that is the case, then its a good sign – it shows he is making efforts, that you are probably already seeing a specialis, he will have regular scans and so he should be on top of this.
    
    He might find this board useful. There are many excellent people here who will try to help out. But if he is being seen by a specialist and has no evidence of disease and is on adjuvant nivo, then he does not have to come to this board either. It can be good to know you are doing the best option and then just to try to make it work. Only come here to help others or if there are difficulties.
    
    Good luck to both of you
    Mark
  - July 22, 2020 at 5:04 pm
    
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    ed williams
    Participant
    
    Hi Mark tempus is like foundation one gene test. Not sure if FDA has given approval yet, here is a link. https://medcitynews.com/2018/09/110m-fundraise-tempus-app/?utm_campaign=MCN%20Daily%20Top%20Stories&utm_source=hs_email&utm_medium=email&utm_content=66070805&_hsenc=p2ANqtz-9Q1-7M7tAtDlPYPTF3JJsVO77CtEgQV_5CI6BgjCc5_AjVY53RlZlz8AfEW_DgsqvS6PYYUp0BEXrcJSMW-Re-asIi9ISzWftxvA86t8zdObgCuwo&_hsmi=66070805&rf=1
- - July 22, 2020 at 1:46 am
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  texasgirl
  Participant
  Hugs to you and I know how scary this is. My mom was diagnosed stage IV 2 years ago. She’s been on Opdivo 2 years and most/all of her tumors have disappeared. On top of that she’s been lucky to have no side effects. I hope your husband is as lucky! Prayers for you both!
- - August 27, 2020 at 10:20 am
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  DebbieH
  Participant
  I remember well how terrified I was to find I went from stage 1a to 3c in six years. I had several positive nodes (axillary) and the melanoma also grew into a muscle in my back. This was in 2001. After treatment with high dose interferon (we didn’t have many options back then) I have been fine now for nearly 19 YEARS. There is always hope. Because I was so active in this melanoma community back then I met many other patients. We had get togethers. I know of several other people at my stage who are also still fine after all these years. Remember this. Good luck – take some deep breaths.