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Debbiemartis

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      Debbiemartis
      Participant
      Thank you for posting this! I’ve gained so much weight since starting Opdivo and tried to manage it with exercise and diet but it doesn’t help. So far the doctors have no medical reason for it except for possibly inflammation. I would love to hear any ways to counter this side effect.

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      Debbiemartis
      Participant
      Hi Karen

      I’m sorry about your melanoma diagnosis. Hearing it for the first time is the hardest.

      Over the past 11 months I’ve had over 40 surgeries for many melanomas – on my arms, legs, face, etc.

      My dermatologist gives me the option to remove more than 1 at a time which I always do. I’ve had to have skin grafts and she did 2 of them at the same time. It can be a lot but I prefer to just do it. Also since I’ve had so many, she sometimes “stages” them and doesn’t close the excisions (since I’ve had several re-excisions due to positive margins). It helps preserve healthy skin and sometimes we just let them heal this way instead of stitching.

      I would recommend a dermatologist who specializes in melanoma if possible. They will take the minimal margins to see if they are clear. Regarding a skin graft it really depends on location and if they can close the excision.

      I just started Immunotherapy this week so there are great systemic treatments for melanoma now. It’s encouraging to see how much progress is being made in treating melanoma.

      I pray your surgeries go well,
      Debbie

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      Debbiemartis
      Participant
      I want to share an update on my first Immunotherapy treatment. The biggest side effect has been fatigue. I had some other side effects and contacted my doctor’s office. They prescribed antibiotics and Benedryl.
      The biggest thing for me is carving out time for rest which I’m not very good at.

      Thank you all for your posts and information. It was really helpful in preparing for treatment.
      All the best,
      Debbie

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      Debbiemartis
      Participant
      It is scary to get that first call and hear you or your spouse has cancer. Sorry to hear about your husband.
      Many doctors refer out to plastic surgeons as they have more experience.
      I would recommend going to a dermatologist who has experience with melanoma and an Oncologist who specializes in melanoma if there’s one in your area.

      My first melanoma diagnosis was in 2005 and I wish I would have done these two things. I was rediagnosed last year but my previous dermatologist missed several melanomas for years. She was not a melanoma dermatologist.

      Regarding the lab report, melanoma in Situ is the top layer of skin which requires surgery for removal. They take about 1/2” around the tumor to get clear margins. They are checking a lymph node to make sure it hasn’t spread. This is a conservative (good) approach. Breslow depth is the thickness of it. Clark’s level is rating its invaseness.
      If the staging stays 1b, they can completely remove the cancer by surgery which is good.

      There are some great people on this site who have articles with more info so hopefully others will respond.

      I want to encourage you as I’ve had over 40 surgeries in 10 months for many melanomas. My case is extremely rare though. The medical community has been advancing melanoma treatment since my first diagnosis in 2005 and it’s pretty awesome to see how far treatment has come.

      I pray your husband’s surgery goes well.
      Debbie

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      Debbiemartis
      Participant

      I’m so sorry. There are no other words. 

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      Debbiemartis
      Participant
      Awesome news about the clear nodes! I’ve had a few that had to be re-excised several times but eventually came back clear. I pray your surgeon gets it all on the next go around.
      Cheering for you and your healing!

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      Debbiemartis
      Participant
      Are you getting care at a cancer center?

      With your history, it seems like there would be benefit in going to a cancer center if possible.

      Hang in there!
      Debbie

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      Debbiemartis
      Participant
      Hi Karen

      I think as long as there’s someone on your medical team with melanoma expertise that’s great. I am blessed with a great team who have been thorough and advocate for me.

      On another note, they thought all of my melanomas could be primary tumors but it’s unusual to experience multiple primaries. So they looked at epidermitropic Metastatic melanoma which is extremely rare. This is likely my case due to the number of melanomas and that they spread to other areas of my skin.

      Thank you for praying. It’s good that we don’t have to be on the journey alone.

      Praying and cheering for you!
      Debbie

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      Debbiemartis
      Participant
      I understand the worrying part. My husband had stage 4 cancer in 2006 and I worried a lot until I prayed and finally had peace about it. He’s 13 years clear and going strong. :)

      Regarding the lab report, it looks like the 1b melanoma came out of the melanoma in Situ. I don’t know if they gave you the detailed lab report. Sometimes it helps bring clarity to what is going on. They give as much detail as possible so the doctors know how to treat it. The summary you shared seems to indicate that there was a melanoma in Situ (top layer of skin) that ended up going into the next layer of skin. The good news is that Monday is almost here. Hang in there!

      I hope his appointment goes well tomorrow and that surgery will take care of it.

      Blessings,
      Debbie

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      Debbiemartis
      Participant
      I understand the worrying part. My husband had stage 4 cancer in 2006 and I worried a lot until I prayed and finally had peace about it. He’s 13 years clear and going strong. :)

      Regarding the lab report, it looks like the 1b melanoma came out of the melanoma in Situ. I don’t know if they gave you the detailed lab report. Sometimes it helps bring clarity to what is going on. They give as much detail as possible so the doctors know how to treat it. The summary you shared seems to indicate that there was a melanoma in Situ (top layer of skin) that ended up going into the next layer of skin. The good news is that Monday is almost here. Hang in there!

      I hope his appointment goes well tomorrow and that surgery will take care of it.

      Blessings,
      Debbie

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      Debbiemartis
      Participant
      Thank you all for your posts. I’m sad I missed the cupcake post but will do that next time for sure!! :)

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      Debbiemartis
      Participant
      Thank you Ed. I appreciate your input and tips. It will help me in preparing for tomorrow.

      All the best
      Debbie

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      Debbiemartis
      Participant
      Thank you for sharing your experience. It’s really helpful and I appreciate all of the tips.
      I hope your medical team is able to come up with a good treatment plan for you.

      Debbie

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      Debbiemartis
      Participant

      Hi Bob 

      I spoke with my Oncologist and she would be happy to talk to you. She was surprised to hear someone else has what I have. 

      I can email you her contact info if you are interested. Please let me know. 

      take care

      Debbie

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      Debbiemartis
      Participant

      Multiple doctors have suggested the following for me and they are helping for sure:

      curcumin

      nicotinomide

      vitamin C

      There are medical studies that support each one of them. I’ve experienced a decrease in number of tumors. I’ve had over 20 primaries, many pre cancers, squamous cells, etc 

      My last 30 biopsies came back with about half of them positive as opposed to my normal 100% positive. 

      Hope this helps!

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