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Denial

› Forums › General Melanoma Community › Denial

  • Post
    • July 11, 2017 at 12:22 am
    Oldwife
    Participant

      My husband has stage 4 melanoma, is BRAF + and on Taf/Mek for the last 3 months. At first he felt a lot better than he has in some years, but then got what he calls a virus. Recurring fevers, sweats, fatigue. Sound familiar here?

      He doesn't want to talk about the melanoma, and often procrastinates on diagnostics like the CT scan now due, or even getting his INR checked, since one of those drugs messes with his clotting time.

      How do I deal with procrastination and denial? I don't have much of anyone to talk to. Thanks.

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    • Replies
        • July 11, 2017 at 12:46 am
        MovingOn
        Participant

          As an 'old husband' I can relate to your situation. We all go through lots of moods during the journey.

          I've gone through phases when I wanted more from the medical community and phases when I've wanted less to do with them. The best advice I can think of is to try to make things positive with each activity (for example, go out to lunch whenever there is a medical action required, or after a medical visit give your husband some time to go do whatever he likes such as fishing or a project).

          • July 11, 2017 at 1:08 am
          Christine.P
          Participant

            I'm sorry about your husband's procrastination and denial. As a fellow stage 4 patient, I know that some days it just feels like too much and I retreat for a day or two. But then I know I have to fight and force myself to do what I'm supposed to do. I don't know if there is anything you can do or say to motivate him; just let him know you are there no matter what.

            I also just wanted to mention that I am on Taf/Mek, too, for about 6 weeks. Fevers, fatigue, and sweats are all actually side effects of the medicaions. If he ever has a fever higher than 100.4, you should call your oncologist. Usually, they will have the patient stop treatment for a few days until the fevers are gone. I've been told that if you don't stop temporarily, the fevers can just get worse which means the dosage of the meds will have to be decreased. 

            Best of luck to both of you. This is definitely a marathon and not a sprint. 

            • July 11, 2017 at 2:04 am
            Ridingaroundwith27Jennifers
            Participant

              It took me a long time to come to terms with being diagnosed.  I wish I had some words or wisdom to share with you.  Unfortunately I don't.  When I was first diagnosed I wasn't sure I wanted to deal with treatment.  My husband just looked at me and said "make the appointments and we'll deal with it".  He didn't give me the option of procrastinating.  He needs me and so I'm getting treatment and dealing with the stage IV diagnosis. Melanoma moves quickly and sometimes it's hard to keep up mentally.  I wish you and your husband all the best.

                • July 11, 2017 at 3:11 am
                Oldwife
                Participant

                  Thank you for answering me. As a lurker here until today, I/we have learned a lot. It can be difficult to 'come out' with the situation, but you have given me real experiences and info to think about since his most recent diagnosis of metastasis.

                  When we were dealing with the PMP cancer, the blog site there gave us the new treatment and recent protocols, when even our primary doc had not heard of it. It saved my husband's life.

                  Blessings to you all.

                   

                   

                  • July 11, 2017 at 3:29 am
                  momof4boys
                  Participant
                    One question, are you seeing a melanoma specialist? I just wondered since you mentioned your primary hadn’t heard of it. Mel specialist are up to date on all the new treatments. His side effects probably should be shared with his onc and he needs to be honest in order to have the best chance of beating this beast. I hope you stay around, its best to be on top of all the new treatments and what better way to weigh options than by hearing others stories. Plus its a place to vent a little to fellow mel warriors and caregivers!
                    • July 11, 2017 at 4:53 am
                    Oldwife
                    Participant

                      Yes, Dr. Mary Stewart in Anchorage is a specialist, and husband's dermatologist had melanoma himself and is very proactive in working on this.

                      When I was talking about our primary doc 9 years ago, he was a GP, and was willing to look at my research to refer for surgery out of state, on our insurance. With regards to the melanoma 9 years ago, as soon as he saw it, he sent DH to the surgeon the next day. That first melanoma was up in his (very thick) hair, and I happened to see it when he was crawling around on the floor with the dogs.

                    • July 11, 2017 at 12:55 pm
                    J.bun
                    Participant

                      When I was diagnosed,  I really did not want to "deal with it" – scheduling the dr appts, coordinating lab orders, etc.  I told me husband to do it, and I would just go through the motions (since even though I didn't want to "deal with it" – I did want to stay alive).  I am not sure if it would help, but if you can take the lead in this, your husband may open up more over time…

                      My mother had a different cancer and was in denial as well… my family tiptoed around her to not upset her, and I do not recommend this approach.  She was proactive in setting up dr appts, but not handling other aspects of her life.  If there is way to use your love, compassion, and support for your husband – and remind him you are doing it for these reasons, even though cancer and the future can be scary – both of you may actually wind up feeling better.

                      • July 11, 2017 at 1:23 pm
                      Hukill
                      Participant

                        As a person who ran fever for 6 straight weeks 24 hours a day I would tell your husband to appreciate these side effects as his immune system is reacting which is what he should want. I have had at least 5 side effects at the same time for 13 months. I was stage 4 with 7 tumors in my lungs but I have been in remission for a month. The ipi/nivo combo worked for me and is still giving me side effects but that is ok, I know it is working. I self medicated with motrin to control my fever, every 2 hours. If I waited longer than 2 hours I would have to go through the fever, chills and sweats cycle which was the worst chills and sweats I have ever had.

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