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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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@texastribble Let me be the first to welcome you to Mayo Clinic Connect. We are a community of patients/family members/caregivers who share our common experiences and ideas, to help others' health journey a bit smoother. It is good to see you are going into this with your eyes open, and looking for information. For me, it is a measure of comfort to be informed, even if it's not what I want to hear!
You pose a very good question, but each patient responds differently to treatment, so I don't know how I can answer that. Have you spoken with Jerry's medical team, and gotten any idea what they say about it?
Here is an article from Cleveland Clinic about immunotherapy, that may give you some new information: https://my.clevelandclinic.org/health/treatments/11582-immunotherapy
Also, here is a link to the Keytruda website: https://www.keytruda.com/melanoma/
Please come back and let us know how Jerry is doing. This week you will be waiting for the first infusion to start, and perhaps pondering the whole situation. Talking it out with Jerry, and us here on Connect, ma go a long ways to ease your tension. Will you do that?
Ginger
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2 ReactionsThanks for the welcome, Ginger. I had many years in he medical field, so I am always reading and looking for answers. However, oncology is a whole new ball game for me. I really know nothing about it. This doc wants to play "God" and not explain nor seem receptive to questions---so far, I don't even know what the questions are! I did mention, while in the office, that I would prefer to go back to the melanoma specialist and got a questioning look! For Jerry--he is old school---all doctors walk on water and are not to be questioned. And, in the office when I mentioned going to the specialist, he replied that this doc knew just as much as the specialist--They all know the same thing! Of course, the doc has a smirk when he looked at me. We have not even been called about the appointments for Friday and the treatment next week. I read about it on the patient portal!! To put it mildly, I am not impressed!!! We have access to one of the best in the country---and we are going with a local-- I don't want to alienate them, but I cannot sit back and play stupid either.-Excuse my vent!!!!!!!!!!!!! We will see what happens next.
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2 Reactions@texastribble Venting is good for the soul, good for the nerves! Please, go right ahead and vent to me all you want.
I have been dealing with many drs since the 80s, and have been labeled a "difficult patient" by many, for my plethora of questions and refusal to treat the like MD stands for Master Deity! Some were "fired" by me, with accompanying papertrails to administrators, etc.
We learn to advocate for ourselves and our loved ones. It's how we get through this health minefield. Nothing wrong with that.
Ginger
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2 ReactionsDuring my "working years" the docs and I had great respect for each other. I called most of them by their first name rather than DR. The nurses were indignant and could not believe I was doing that. I said, I put my pants on one leg at a time just like they do. If they call me Mrs. I will call them DR. I got along with them much better than the nurses!!!
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2 ReactionsI’m so sorry - the love of my life passed away last week. Three immunotherapy treatments didn’t help but the side effects of those drugs were terrible. I pray that you have a better outcome
I fluctuate between anger and crying.
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1 Reaction@mlenney167 Annie, please accept my condolences for your sadness in losing someone so special in your life. To have your hopes bounce around on the roller coaster only chemo can offer is a ride beyond description. Your feelings of anger and sadness are recognized by many who have been where you are. Feelings don’t always make sense no matter how “normal” we are told they are. Your wish for Annie, that she has a better outcome, tells me that you understand there is no way to accurately predict an outcome for any of us. How kind of you to reach out to her even in your own time of grief. Please be kind to yourself in your time of healing. I hope that you will return here later and let me know how you are. Peace, Nancy
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3 ReactionsMy heart goes out to you. The hurt eases, but never stops. I have lost both of my children, and I understand. I am afraid we will have the same outcome because he waited so late. He still feels good--just returned from his morning walk. My fear is that when the treatment start the quality of life he now has will go out the window. A few good months would be better than several bad ones. Take care, my friend. Lean on your faith, us and family to carry you through this difficult time.
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4 ReactionsThe diagnosis was just in April - your comment about a few good months rather than more bad ones hits hone. Think if we knew we would’ve enjoyed our time together. I’m angry for many reasons and tried my best to help him but it didn’t work. There’s my guilt that is hard to ignore.
And I miss him so so much…
All the best for you and anyone else with this evil disease- the patients and their caregivers are in my prayers
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3 Reactions@mlenney167 Annie, allow me to also express my condolences on your loss. As @1nan said, reaching out like you have shows great compassion. There is a loss and grief discussion group that you may find some support https://connect.mayoclinic.org/group/loss-grief/ And of course, we are here for you. Pull up a chair, we'll pour a cuppa tea, and chat.
We never know the time we have left. Your anger will eventually simmer down, and the sadness will give way to a series of memories. Cherish those, and remember, we each grieve in our own way, no one way is "better" than another.
Ginger
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5 ReactionsIt seems each person reacts to some, none or all the side effects. I just finished 4 sessions, 3 weeks apart. First was 3 day fever, Second 10 day fever & flu like symptoms, third was smooth sailing, only the typical fatigue & rash, fourth was fine until I caught a bug my whole family had. PET SCAN showed amazing results in several places and some new problems. Waiting to consult with Dr.
FYI My initial diagnosis was TNBC. Weeks to Melanoma diagnosis, lung, liver, bone, small tissue, possible heart… First Oncologist denied additional tests, sent me to lumpectomy surgery. Thank God for the pre-surgery phone call with a PA who thought I should have a chest xray. My Angel.
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