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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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Well piffle!!!!!!! I wrote the whole long story of the past few days----I heard the soup boiling on the stove and went to check it, and all by rambling disappeared! Oh, well, y'all are saved because I am not doing it all again---you will get a shortened version.
At the doc office Tuesday, Jerry felt really horrible---and they finally realized what eI had been saying about his low O2---It was 74! That got their attention and they got busy and got it ordered. It was delivered yesterday afternoon late. Home health was also ordered---the nurse was out this morning for the evaluation. Will try some physical therapy and see if he can handle it. The nurse was to come once a week, but we talked a little bit outside as she was leaving---she called back and said she thinks they need to check on him twice a week---I agreed. I explained the doc's attitude about how great and wonderful the treatment is and that he will be up and running races in no time. She agreed that it is not going to happen. She agrees with me that he is much worse than the doc is saying---which I have said all along.
I have the oxygen on 3 L to get him about 92% oxygen. Still low at that. I can increase if needed.
Jerry could hardly stay awake and comprehend what the nurse was saying/asking. As soon as she left he was sound asleep, and has been since then---about 2 hours. He woke up about 6 AM and has been awake no more than 2 1/2 hours since he got out of bed---(1:30 PM now) Hopefully, he is just extra tired due to the infusion yesterday, but I feel that he is going down hill rather quickly. He is not talking about it, so I don't know what he is thinking. However, he told the nurse that his goal was to make it to his birthday 11/01---and if he does that, he will try for Thanksgiving.
More another day. Thanks for the good thoughts and prayers.
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2 Reactions@texastribble Having small goals like that is a good thing to focus on. My dad did the same and it helped him. Very glad to hear you got the oxygen needed, and you will get support from the home health nurse! She will back you up on any issues you take to the doctor.
Are you getting any rest?
Ginger
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1 ReactionREST???? What is that???? Something foreign to me.
I do take a sleeping pill at night, otherwise, I would not sleep.
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1 ReactionJerry has been increasingly more short of breath today. He took a shower without wearing oxygen and had difficulty getting back to the living room. Just 2 weeks ago, he was fine without it. Physical Therapy came for the first visit today. Jerry, the guy that is always kidding around with whomever is around, was not kidding around today. He was very quiet--answered the questions that he had to, half heartedly did the exercises that she asked, but admitted that he did not want to. He was totally exhausted by the time she left. He admitted that his short term memory is gone. We did talk a little bit this evening---I have felt that the new doc is not being honest with us. He is painting a pretty picture of how everything is going to be fine and the cancer will stop. Jerry finally admitted that he agrees with me--the doc is not being honest with us. Jerry knows he is getting worse every day, and going down quickly.
His breathing is so shallow, that I have to look long and hard to even see that he is breathing. His lung capacity on the incentive spirometer has dropped from 2350 L to barely 1000 L. Just not enough space to move air.
No one knows how long this will go on. Maybe days, maybe weeks--maybe months--but that is not likely. We are just taking it a day at a time.
This is so difficult-----------
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2 ReactionsA few minutes ago, Jerry posted on FB "When driving your car you can read the fuel gauge. I’m gauging my time by what I could do a few days ago by what I can do today. It’s all downhill from here." He is a realist--
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1 Reaction@texastribble Being a realist is a blessing and curse, both. Have you contacted Hospice in your area, to have some support and education as to what you path will be, how they can help you? It is a hard and bitter pill to swallow, this reality thing. If you have a faith community, perhaps contacting them will be of comfort to you?
Ginger
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1 ReactionThe Home Health company that was sent by the doc office is also Hospice---so when that time comes, it will be an easy transition of the service.
He is tired. The grands and great-grand kids were coming over today, but he did not feel like seeing them. The littles are rambunctious and just too much. Girl friends came over this morning--he was not pleased, but did not say anything. One will be back later and bring dinner. He is quiet, just looking at his phone and I-pad between naps.
I have ordered from Amazon some shorter oxygen tubing. They brought a 30' tube, but it is too cumbersome. The shorter ones will be easier for him to move, go to the bathroom, etc.
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1 Reaction@texastribble We are here for you, please remember that..
Ginger
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1 ReactionHi Texastribble. Was wondering about you and Gerry because you haven’t posted I a few days. I wish you would reply with better, have had you on my prayers.
I was wondering what the doc was so positive about that he’s painting a rosy picture is once the cancer starts to recede. I forget what treatment he is on. Thinking about you and praying for your strength to get through this. Diane
Hi Diane and all----I really don't know what to say at this point. He is barely breathing---very shallow breaths. Lethargic. Home health nurse came just as I started writing this. We are now in the ER---did sonogram on legs for blood clots and not gone for CT scan. He just feels lousy--cannot get any air, etc. The ER doc has already said he will be admitted. More later