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Penile melanoma --Melanoma is NOT just skin cancer!
April, 2020 my “Significant Other” (Jerry-- Age 82) discovered a small black spot on his penis. It was biopsied and confirmed to be melanoma. He had a partial penectomy. March, 2021 he had another partial penectomy with lymph nodes biopsied. Melanoma was in one node which was removed and he was classed at stage 4.
Each PET scan showed numerous small nodules in his lungs that were too small to identify, but with each PET scan, they were a little larger. In April, 2021, he was considered NED (No evidence of disease). We were seeing a well known melanoma specialist in Dallas. The side effects of immunotherapy were discussed, and Jerry decided to decline treatment. The doctor agreed with his decision, based on his age and the side effects of treatment. . He asked about the recurrence and was told---it WILL come back, it is just a matter of when and where.
He was very sick and I took him to the ER on July 12, 2021, and had to cancel the routine PET and brain MRI scheduled for July 14. During the ER and hospital admission, a lung CT was done. The doc told me at that time that his lungs were full of cancer—he considered him terminal and said I would be looking at hospice very soon. Jerry hated the trips to Dallas, so I finally gave in and agreed to request an appointment with the local oncology group.
The doctor was pleasant and friendly, but I am not sure how much he knows about melanoma! He admitted that he had not read all the reports and that this was a difficult and unusual case. PET and brain MRI were scheduled. Results showed widespread mets—Lungs, thorax, mammary glands, possible colon, and started to spread to the bones. The nodules in his lungs had grown from 1.7 cm to 8 & 10 cm in 4 weeks time! The doc recommended Keytruda. He made immunotherapy seem like a walk in the park. Jerry had the port placed yesterday and will have his first treatment on Tuesday Aug. 31. He will have treatments every 3 weeks times 6—then go for another PET.
Strangely enough, Jerry still feels good. He does get tired easily and takes naps---not unusual at age 82. His appetite comes and goes, but he is maintaining his weight.
I think that if he experiences much in the way of side effects, that he will stop—he says he will not give up, but on the other hand, he will prefer quality of life over quantity.
My question is----what are the odds that this treatment will stop the spread???
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He takes a short walk almost every day. The only times he did not were when the pain was so bad. Now i he could just get over the nausea!!! It is ongoing.
Have you tried anything like peppermint tea or ginger chews? Might it be he is not chewing the food enough for it to be broken down, and gets further into his digestive tract and just "balls up and sits"? Has he been checked for a stomach ulcer or not enough digestive juices, perhaps not drinking enough fluid to help with digestion? Just thinking out loud here....
Ginger
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1 ReactionHe does not drink enough water! I try to get him to, but he just won't---I put a pitcher out, but he will not use it to monitor. He drinks a little off and on during the day--but not enough. He is also constipated---he said today that I need to call the doc. I said---I talked to the office and they said what to do---now you have to do it!!! He has no medical knowledge and does not understand how stuff works! And does not care to learn or listen to me. Stubborn male!!!!!!! I just took him a glass with miralax in it and said he had to finish it before he goes to sleep!
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2 ReactionsWill he drink more fluid if you infuse some orange or lemon or cucumber into it? Maybe he just needs a bit of taste?
Ginger
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1 ReactionWishful thinking---but no, he is not going to even try. He refuses to acknowledge the importance. His problem!!! All I can do it offer.
Jerry has been having some good days lately---tired, but managing the pain and being up and about. I am afraid the good days are coming to an end.
When Jerry's pain started suddenly on 8/27 it was intense--I took him to the ER the next day for pain meds. His doc ordered medication and he finally got the pain under control and has been able to manage it. This morning he said that when it started, the pain was one little spot around his lower rib. Now, the pain has spread over a larger area of his back. He feels really lousy today. After he told me that, he told me to arrange his cremation so that I would not have to deal with it later.
I will hope for a better day tomorrow.
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2 ReactionsThank goodness----I am grateful that he feels much better today!!!!!!!! Took a little walk earlier and resting more comfortably.
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1 ReactionGood to hear. Now, how are you doing, and what are you doing to care for yourself? Have you checked in to a social worker who could assist you as a family member, to deal with all this?
Ginger
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1 ReactionNo---I am not sure what anyone would do at this time. At some point, I will probably need Hospice. There are several Hospice companies available---how do I know which one is best?
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1 ReactionA very long and difficult day---while the rest of the country remembers 9/22.2001 ( and I do as well) ------I remember 9/11/17---that is the day, after 30 long days in ICU on life support that we removed it, and let my daughter pass peacefully. I tried to stay busy---but I am now totally exhausted.
Jerry has had a good day. He went to a "men's salon" for a long needed hair cut and toe nail cut!
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