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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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Home from the hospital today---very tired, but glad to be home. Fortunately, when the pneumonia cleared up, his O2 came back as well and he did not need to have O2 at home! But, really know nothing else at this time.
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1 ReactionWe have both had our immunizations, but this has nothing to do with COVID----
Sorry about the incorrect diversion off-topic @texastribble. Nancy thought she was responding to another discussion and asked me to remove her post.
So back to you and back on topic. I’m thrilled to hear that Jerry is back from the hospital and that the pneumonia has cleared up and he no longer needs supplementary oxygen. I’m sure he’s glad to be home and resting.
What are next steps at this point? Are you able to get some rest too?
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1 ReactionI am at my wit's end!!! He woke up this morning with an O2 of 81. He woke me up for a breathing treatment. He is having some pain in his back rib (where there apparently some bone cancer-- area and just generally feels crappy. I called the Oncology office----nothing they can do since they got a satisfactory O2 reading at the hospital. She suggested calling the cardiologist since the low oxygen will affect his heart. Cardiologist office said they don't order oxygen, I should call the primary doc. Primary doc says call 911 or go to the ER. Well---been there done that----they can't order it---they will put some on him and send him back home. I went to the sport's store and got a can of Oxygen that athletes and people at high altitudes use. I know it is not intended for medical use, but I had to do something. It did raise his oxygen for a while and he felt better---finally got a nice nap-------but as he slept, the O2 dropped back-eventually to 89. New Medicare guidelines say they don't prescribe home oxygen unless it is 88 or below. That is because of COVID changes. He does feel better after his nap so will see how he does through the night, I guess. I really don't know which way to turn.
Thankfully, today has been a much better day!!!!!!!!!!! Jerry's O2 goes between 88 & 91 when awake--he uses the canned oxygen to keep it at that point. I have not checked it today while sleeping. I got a call from the cardiologist office and they recommend a pulmonary consult. I told her that he was using the canned O2, she said do was was necessary to keep him comfortable for now. I was surprised---I expected a lecture about OH NO you cannot do that. Hopefully, we will see the oncology doc on Tuesday prior to his infusion, and can talk about a referral.
We went out for lunch and he ate part of his hamburger. He has been hungry for "real" fried chicken---so tomorrow I guess I will go by chicken and a can of Crisco-----I have not done fried chicken in 35-40 years, but I will see if I can remember how!!!!!!!
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1 Reaction@texastribble You surely are at your wit's end! Are you getting any rest for yourself, at all? And remember, renewing your fried chicken skills is like riding a bike, just over a stove!
Jerry hopefully understands what a treasure he has in you. Fortunately you have your medical background to fall back on, otherwise it might be a rough time for you. Advocate for yourself, and for Jerry. Your notes and lists of symptoms will surely make an impact on Tues to get that referral.
Ginger
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1 ReactionThe fried chicken did not go over too well. He sat down to eat, but after just a few bites, he could not eat any more---not even mashed taters and gravy. There was one container of jello left--so that is what he had. He said since it is slippery, it goes down easy! I did use the chicken and made some soup today--it was really good and he enjoyed a good size bowl of it.
He is still struggling with his oxygen level. Rarely hits 90---has not been over 92 since he came home from the hospital except when he takes a breath of the canned that I got.
Hopefully I can get a pulmonary referral this week and be able to get some oxygen for him. I am concerned about his heart and other organs with the low O2.
Forgot to mention the pecan pie!!! He did eat a very small piece yesterday and one today!!! Calories count, even bad calories!
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1 ReactionYOu are certainly are his hero. Prayers for him and for you.
But those few bites of chicken made you feel good he had some, and it stirred his taste buds, right? If his throat and esophagus are giving him fits, his desire for foods may be there, but physically unable to enjoy them. Although it's not the same thing, long ago a friend of mine was going through cancer, and enjoyed smelling the food being prepared, even though he could not eat it.
And you're right, calories are calories, even if they are "bad". Have you tried any meal replacement drinks? Perhaps making a shake type thing with protein drink or powder, some frozen yogurt or ice cream, something that might get some calories and slide down pretty easy.
Ginger
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3 ReactionsHe is so blessed to have a caregiver like you. Prayers to you both. Hope he gets the pulmonary appointment very soon.
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