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Tips for dealing with double whammy of melanoma & lupus?

Forums Cutaneous Melanoma Community Tips for dealing with double whammy of melanoma & lupus?

  • Post
    murnaloo
    Participant

      Hi all,

      This is my first post here, although I have been reading the posts since my Stage 1B diagnosis in April 2016. No other forum has had such kind, practical and authentic posts, in my opinion.

      I was just wondering how those of you diagnosed with stage 1 have carried on with your daily lives. How do you balance your diagnosis with sun safety? How do you keep from living like a vampire? How do you live with the fear of another primary or a recurrence? And, what do you do when you get really down about the diagnosis and how it has changed your life?

      I was diagnosed with systemic lupus in 1982, when I was 12, so I hardly went in the sun for years. In my late 20s, I did start going in the sun more, as that no longer seemed to trigger my lupus, but I never layed out by the pool or got heavy burns. I lived in Texas, so avoiding the sun is essentially impossible, especially in the heat of summer when you want as little clothes on as possible. But, I hate hot weather, so I am not inclined to seek out the sun even without the lupus factor.

      Since 2010, I have lived in London, where we don't see the sun that often, although when we do it is glorious! I had a mole on my right calf that caught my eye – I don't really recall why, but it was enough to make me go to my GP three times to ask about it. Each time I was reassured, including by one doctor who told me the mole was "cute and heartshaped." While I was visiting my parents in the U.S, I went to the dermo, who took one look at it and said it wasn't fine. I had the WLE within a week — with no health insurance. Ouch.

      Because I have lupus, the one thing I did NOT worry about was melanoma. No family history and I've never been a sun worshipper. Given my experience with the British health system, plus my concern that any day now I'll lose the health insurance I got in the U.S. after my diagnosis (it's through the ACA), I feel like a ticking time bomb, and I can't live like this. The short, grey winter days in London used to make me blue, but now my mood dips when the sun comes out.

      I thought as time went on I'd get better, but I am getting more scared and anxious. I know we are all different people, but I wondered if you have any tips for dealing. This Saturday is an annual boat trip down the Thames with friends. It used to be the highlight of my summer, but now I'm hoping it rains and the trip gets canceled. I'll be coated in sunscreen, with clothes covering almost every inch, but the joy of the day is gone. This is just no way to go through life.

      Thoughts?

       

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    • Replies
        Janner
        Participant

          There is/was a link between a lupus medication and melanoma.  One of my friends had lupus for years and took this drug.  Later developed melanoma.  She was very aware of melanoma because her husband was battling stage 4 disease.  Don't have time to search at this moment and I don't remember the drug name. But I'm sure you can search and find that association to see if it is something you have taken.

          Gene_S
          Participant

            I wouldn't totally stress out about it as stress is bad for your health as well.  You caught yours early.  Some get melanoma where the sun doesn't shine (in the groin, bottoms of feet, under long hair while sunscreen has chemicals and you have to think about what they can do to your body or your health as well.  If you lather it on and then are in the sun for long periods you are baking the chemicals into your body.  I say be sun smart.  As your body needs Vitamin D3 and the best place to get it is from the sun.  Don't bake in it but a few minutes 10-15 probably wouldn't hurt you either.

            First and foremost live you life.  Don't let Melanoma ruin it.  I know someone who got melanoma after working 40 years in a plant working shifts and she got it in one of those places where the sun doesn't shine.

              sholmdahl
              Participant

                Hi, I can understand your point of view only too well.  I also have an autoimmune disease along with stage 1a melanoma.  I was diagnosed about three months after you were, in July 2016.  How have I coped?  I try to get on with life and living it to the fullest.  I run  a lot of miles to help with stress.

                Since on of my primary treatments is with narrow band UVB light I have been researching other treatments and trying to find a dermatologist I can trust, not easy.  Original derm gave me a lecture during WLE excision surgery, that sure did a number on my alreay fragile emotional state.

                I tryi ignoring the problem as much as possible, which is hard because I am constantly llooking at my skin in order to treat the psoriasis, or at least access how my treatments are going.

                Another commenter alluded to the fact that some drugs may give you a slightly higher chance of melanoma.  White this is true, it doesn't increase your chances too much.  I take a drug called methotrexate weekly to hlep with my psoriasis.  I have asked doctors how much this raises my risk, they feel like since at my dosage it is not an immunosupressant, not much.

                Instead of sunscreen I am using a lot oif the sun protective clothing like rash guards to protect myself from further UVA/UVB exposure.  I live in California, here you do not avoid the sun because there are a lot of cloudy days.

                I try to take control, and be as knowlegable and informed as possible.  Some days are better than others.

                Try to enjoy your trip down the river, dont avoid life, your chances of further melanoma are low.  I keep telling myself that and get on with life.Some days are easier than other, but I keep trying to move on.

                My biggest problem is stiff finding a dermatologist I fell that I can completely trust.

                You have my support and feel free to teach out to me.

                sholmdahl
                Participant

                  Hi, I can understand your point of view only too well.  I also have an autoimmune disease along with stage 1a melanoma.  I was diagnosed about three months after you were, in July 2016.  How have I coped?  I try to get on with life and living it to the fullest.  I run  a lot of miles to help with stress.

                  Since on of my primary treatments is with narrow band UVB light I have been researching other treatments and trying to find a dermatologist I can trust, not easy.  Original derm gave me a lecture during WLE excision surgery, that sure did a number on my alreay fragile emotional state.

                  I tryi ignoring the problem as much as possible, which is hard because I am constantly llooking at my skin in order to treat the psoriasis, or at least access how my treatments are going.

                  Another commenter alluded to the fact that some drugs may give you a slightly higher chance of melanoma.  White this is true, it doesn't increase your chances too much.  I take a drug called methotrexate weekly to hlep with my psoriasis.  I have asked doctors how much this raises my risk, they feel like since at my dosage it is not an immunosupressant, not much.

                  Instead of sunscreen I am using a lot oif the sun protective clothing like rash guards to protect myself from further UVA/UVB exposure.  I live in California, here you do not avoid the sun because there are a lot of cloudy days.

                  I try to take control, and be as knowlegable and informed as possible.  Some days are better than others.

                  Try to enjoy your trip down the river, dont avoid life, your chances of further melanoma are low.  I keep telling myself that and get on with life.Some days are easier than other, but I keep trying to move on.

                  My biggest problem is still finding a dermatologist I fell that I can completely trust.

                  You have my support and feel free to teach out to me.

                  slholmdahl
                  Participant

                    The questions that you ask in your first paragraph are those I am very familiar with and try to conquer.

                    It has been a year since my stage 1a diagnosis.  I too have the added complexity of managing a autoimmune diseases, on top of the the melanoma issues.

                    I have worked to make some changes to manage my psoriasis in a different, way ,a new drubg that attacks the problem differently, and does not suppress the immune system.  I still take methotrexate weekly at a very low dose, immunologist says it is not an immunosuppressant at this level but only an anti-inflammatory.  I have researched solar radiation and melanoma.  In my case one of my treatments is narrow band UVB, the literature can find no links to melanoma from this treatment.  Yet I am moderating its use and perhaps will be able to not use it at all.

                    I think taking control of the things you can do something about helps.  I run, any kind of exercise can help with anxiety.  I try not to research too much and reach out for support whereever I can find it.  I posted on this message board for the first time yesterday, stating some of my concerns.

                    White being sun smart is important, all the derms I have consulted have said you dont have to live like a vampire.  I don't like sunscrenn so at least on my top half I wear a rash guard or sun protective running top.  I use sunscreen on my legs and face.  I do run outside, and I live in the UV capital of California.

                    Keep doing things, even if you dont want to because a lot of the time normalcy then takes over.  It becomes a muich better situation that worrying about everything all the time.

                    I'm at a low point today, so I'm reaching out trying to tell you what works for me and that you are not alone.

                    One thing that helped me  was to visualize how small my melanoma was, I converted the 0.2MM into inches.  I found all the posiitives in my lab work, I had a reported micotic rte of zero.

                    I try to keep telling myself it is very possible I wont ever have another melanoma, given the statistics and the early nature of my disease.

                    I keep on living and doing everything I did before diagnosis, you cant let worrry of more melanoma become the entire focus of your life.

                    There are a lot of our here, that have the same fears.  My diagnosis was almost a year ago, and I think the anniversay of it has triggered some of my anxiety today.  Talk to someone your trust, and try to keep perspective.  Worrying about something that hasn't happened yet is counterproductive and emotionally harmful.

                    Am I always sucessful?  Not but I keepliving my life and I'm not going to let the fear and anxiety run my life.

                    murnaloo
                    Participant

                      Hi! I am so sorry for not replying after your thoughtful message! But, I wanted to let you know — better late than never — that it was incredibly helpful and I have re-read it several times when my melanoma anxiety kicks in. So, thank you again! I hope you are doing well and enjoying the holiday season in California! (BTW, I grew up in Texas, so I am familiar with the inability to live like a vampire! Now I live in London, where I fit in amongst all the other pale people.)

                       

                      slholmdahl
                      Participant
                        I’m glad it helped! I am well and less bothered by all this most of the time. Still living in California, but have resumed vacationing in Maui, with all the necessary precautions. I hope you are doing well too. London sounds like a nice place to live and I hope you are continuing to enjoy it. There is an author who lives in Texas but writes about England, but has never lived there. Her name is Deborah Crombie and her books are really good. They are mystery, crime thrillers.

                        Sue

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