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Need some clarification

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Need some clarification

Posted By
5/22/2020 12:52am
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Replies: 5

I am stage 4 metastatic melanoma being treated with Nivo. I have had 9 treatments. I have been very fortunate to have experienced very few side effects: varying degrees of exhaustion, occasional rash, some gut pain, and that’s about it. I have read other patient entries and I am fully aware how luckyI have been in my treatment. I had an original mole on my upper back that was excised five years ago and I thought it was resolved. About two years ago a tumor was discovered in my back and a biopsy confirmed subcutaneous metastatic melanoma and it was excised. About six months later a small amount of bone cancer was discovered in my right scapula and this was diagnosed as a further metastasis. It responded well to radiation. During my 9 months of Nivo there has been no further metastases— no tumors, no obvious spread of cancer. Here is my question: Because my melanoma is subcutaneous with cancer cells flowing through my lymph system or fatty tissue undetected, am I at risk of dying within the time estimates on the longevity charts even though there are no positive cat scan or pet scan results of new tumors or organ involvement. I do not feel well and can’t point to any new event that explains my rundown condition. I am a young 75 year old experiencing a lifestyle change that is very frustrating. It clearly is not age that is causing this. When cancer takes a victim, can it include someone who has no persistent tumor growth or organ deterioration? The doctors tell me my scans and bloodwork are ok My body says otherwise. What do you think?
(I know many of you have experienced significant medical challenges with your melanoma treatment and may view my concerns as trivial. I do respect your courage. I am trying to formulate some end of life plans, but I simply cannot understand my true status given the subcutaneous nature of my melanoma..) I look forward to your views.

Edwin - (5/22/2020 - 10:16am)

Your health problem may not be due to cancer. If you have not seen your primary care doctor recently, you should meet with him or her.

PET scans always show the brain and the excretory system active. An MRI can show brain cancer that a PET scan has missed. You might discuss a brain MRI with your oncologist.

Have you been exercising less due to COVID-19 stay at home directives? If so, try bicycling, running or walking outside.

studiodad - (5/22/2020 - 5:03pm)

Thank you. I will try and get some exercise. I do see a primary care doctor regularly.

MelMel - (5/23/2020 - 1:38am)

You keep mentioning subcutaneous nature of your melanoma. I just want you to understand that all melanoma is subcutaneous. There are cancer cells in our bloodstream throughout our bodies, it's just that some are turned on at some point and then it's "Huston we have a problem." So I do not think you have a higher chance of dying then any other melanoma patient in your stage. We are all unique, even within identical melanoma stages. Furthermore even within the same body, some tumors respond and some don't. I would count your lucky stars and not find fault when there isn't any. Instead get your affairs in order to have a peace of mind but above all, enjoy your days when you have no real issues to obsess with. Dealing with cancer is as much of a mental game as anything else. Find a hobby you enjoy, connect with loved ones and friends, eat healthy and excercise. Daily walks and spending time in nature do wonders for both body and soul. Listen to happy and uplifting music, read, meditate. Do whatever you like and what makes you happy.
Hope you are feeling better.

studiodad - (5/24/2020 - 12:01am)

Thank you, Melanie. That was very sweet and uplifting. You have some great ideas.

BrianP - (5/24/2020 - 10:39pm)

Hey Studiodad,

Sorry you are not feeling up to your normal self. Exercise does sound like a good option. I would definitely talk to your oncologist and primary care physician and describe your symptoms as accurately as possible. These powerful drugs have been known to alter one's endocrine system which really can throw you into a tailspin. It may be worth asking your oncologist next time you are in for lab work to ask for some additional endocrine work. Maybe they are already being done but it would be worth asking about.