Connect
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???
Like
Helpful
HugInterested in more discussions like this? Go to the Cancer Support Group.
Connect
@taxastribble Be gentle on yourself. A cuppa tea, a remembrance of things that made you and your daughter smile and laugh, if that was the nature of your relationship.
Glad to hear Jerry had a good day. That helped you, didn't it?
Ginger
-
Like -
Helpful -
Hug
1 ReactionJerry is just so tired. His routine lately has been---shower at 7:30--take his little walk outside--eat breakfast if stomach not too upset, then back to bed by 9:30. He gets up and tries to eat a little lunch, then it is not long and he is back to sleep. Up to eat a little dinner, then back to bed. I actually took him some pudding in bed yesterday evening because he was too tired to come to the kitchen.
He had his second Keytruda infusion this morning. We stopped on the way home to get lunch to bring home to eat. By the time we got home, he could not stay awake to eat. He was hungry, but could not stay awake. I helped him get his clothes off and he could not even hold his eyes open to undress.
When he is awake, he feels okay---but then he just cannot stay awake for long.
Is this "normal"----what ever normal is these days!
When he got up to eat, I asked if he thought the treatment was making him so sleepy--he said no--he was hungry because he did not have but a few bites of breakfast and because he missed his nap. So, he ate a little bit, went back to bed for another nap. Now, 3 PM, he gets up and seems to feel okay for the moment. But he will probably have another nap before dinner---
@texastribble Going under treatment for anything can take quite a toll on the body. Physical, mental, emotional. Have you reached out to the social worker where Jerry gets his treatment, to ask your own questions about responding to his change in activity level? For me, I am in my second round of chemo now, an oral medication, and find myself with large clumps of time where I am fatigued, and cannot seem to get any energy up. I am learning to not beat myself up about it, and try to turn to activities that will not collapse if I don't finish them, or cannot concentrate. I am also making sure I keep getting my vitamins and nutritious food into me, even if it is a little bit. Have you tried any of the liquid meal replacements/supplements to give him a boost?
Ginger
Update time!
Friday I finally got him some nausea medication----he took one pill--the nausea went away and has not returned!! Strange---but he has felt so much better being able to eat---he has always been a big eater--and he would be so hungry, but sit down to eat and just couldn't do it. So far, he is not losing weight and I am grateful for that. During the time he was so nauseated he ate a lot of Jello and pudding--empty calories, but at least calories. Now I am back to regular meals that he likes, thankfully.
He is also not spending as much time in bed sleeping---he is not so sleepy all the time. Perhaps fighting the nausea was wearing him out. Also, he has been able to stop the pain medication. That also makes him feel better.
Saturday morning he got up very short of breath---that is the first time for this. I have been monitoring his o2 and is is dropping. Sunday morning he said another night like last and he would be asking for some oxygen while he sleeps! A while back when I took him to the ER they prescribed an inhaler, but he just cannot use it effectively so I have been giving him breathing treatments with a nebulizer. He has a spirometer to encourage deep breaths and measure his volume. I noticed yesterday the volume he is able to reach has decreased significantly the past few days. All this is definitely not good! As a retired Respiratory Therapist, this is all stuff that I am familiar with and worked with for over 20 years. I am documenting all of this and if the o2 levels get to the point that oxygen would be prescribed, I will have some documentation.
I am very concerned with this decline. However, for the most part, he still feels pretty good. He just returned from his morning walk around the block (very short blocks)---he is faithful about getting that much in. He is in good spirits with a good attitude. He realizes the position he is in and is accepting whatever happens---or I should say, whenever it happens.
-
Like -
Helpful -
Hug
2 Reactions@texastribble That's great to read your husband's nausea issue is held at bay right now! What medication was it that he took, and only one dose! Yeah! Isn't it amazing how such a small thing like that can change the way we feel so much?
I wonder if the decrease in breath is due to muscle soreness/discomfort in the chest cavity area? But then, you're the expert in all that type of thing...
Do you ever join him on his walks? A chance to just get out and enjoy some fresh air, perhaps nothing needs to be said. Or some bits of time and space, alone.
Ginger
-
Like -
Helpful -
Hug
1 ReactionGinger the medication that stopped the nausea is prochlorper--that is the generic for compazine. 10 mg tablet to take as needed---after the first one he has not needed! It was amazing.
Hopefully we will get in tomorrow to see the PA about his low o2 levels and get some oxygen for him at least when he sleeps.
When I talked to the nurse about this earlier today, she asked if he is ready to stop treatments. I said he would have to talk to the doctor about it. I am so concerned. As fast as this has grown--from NED in April, to lungs full of nodules 1.7 cm in July, then to 7-8 cm by August. I don't see how the treatments could have stopped it with growing so quickly. And, then from Aug, to the end of Sept. for him to start having trouble breathing. And, the cancer is in other areas as well-----
-
Like -
Helpful -
Hug
1 Reaction@texastribble Prochlorper csn certainly be a life-saver for many people, as your husband found out! My neighbor has to resort to that every so often, also.
I will be thinking of you and your husband tomorrow, and hope you have time in the next few days to let me know what he decides.
Ginger
I took Jerry to the ER Saturday. His O2 was going lower and lower, and his lung volume decreasing drastically. He has pneumonia--the doc is not sure if it is caused by the cancer or side effect of the Keytruda---I don't know if it really matters. The doc is still optimistic that the Keytruda is going to work---they are paid to be optimistic! I am a realist and I see the changes in him daily.
@texastribble Oh, you must be exhausted. Is Jerry still in the hospital? Are you able to get any rest for yourself tonight? I'm here for you as you need.
Ginger