Heart broken to be joining this group but also so grateful that this support group exists!!
My husband was diagnosed with desmoplastic melanoma in October. It is a very rare and aggressive form of melanoma. Went undiagnosed by his dermatologist for 6 months 😕. By the time the large lump on his neck was biopsied it had grown to a significant tumor. Surgery on Halloween to remove the tumor with clean margins and no lymph node spread. Subsequent skin graft and radiation to the neck.
We consulted with Moffitt Cancer Center in Tampa and due to the aggressive nature of this melanoma they suggested starting Opdivo to prevent any further recurrence.
Started Opdivo in January. At that time my husband pointed out a lump he had on his finger to the oncologist. They did a biopsy right there which showed spindle cells and the likelihood of it being another tumor. They took another sample that they were going to do a more in-depth biopsy of but apparent they did not get enough tissue for a conclusive diagnosis.
At this time they also sent him for a PET/CT scan. The scan showed something on the lymph node at his surgery site (possible inflammation from surgery or spread) but nothing on the finger. We are getting mixed information on whether this lump on his finger could be nothing or it could in fact be the melanoma spreading. Is it possible to have a tumor that doesn’t show up on the scan?
It seems important to know so my husband decided to have the lump surgically removed so when can get a definite answer. He has that surgery on Monday.
He is really in a very bad place. Very depressed and anxious and is also suffering from serious insomnia. It is just so hard right now and I don’t know how to help him. He started Ambien and Trazadone but neither seem to be working. He is working as much as he can but I worry that he may not be able to continue if his mental state stays this bad. He is self employed so unfortunately if he doesn’t work, we have no money coming in and I know that worries him more. I have a 13 yo daughter and 16 yo son. My daughter is having a lot of sadness and worry lately and my son just seems to keep it all in. I’ve tried to encourage him to talk but he just doesn’t open up much.
Trying to keep some sort of normalcy for my family but I admit I am really struggling.
Very grateful for this group!!
Tania
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Desmomelwife
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Welcome to the group, I do not have experience with the earlier stages of melanoma. Unfortunately have more experience with stage 4.. but I do have slight experience with PET and with my boyfriends cancer, it spread like wild fire through out his body, went to the brain, lung, and bones.. luckily stayed away for now from the internal organs thank god. But when we got a PET, it lit up like a Christmas tree; went on a target therapy, and got another one 2 1/2 months later; and by the grace of god; showed that all the cancer that had spread was virtually gone. His oncologist had said that although we don’t see any activity on the PET, that it could be nesting somewhere. At his stage, that is likely. PET can only pick up so much. Machines aren’t perfect. The fact your husband is on the immunotherapy is absolutely the right move. If there is anything, it will fight it. The drugs that they have for melanoma are nothing short of incredible; and for those who have it, are fortunate cause other cancers don’t have as many treatments. My boyfriends lymph nodes flare up all the time. Random ones. Then they go away. Then another one pops up, then goes away. Oncologist said that’s not concerning; so long as they go away. I suppose it may be normal given the aggressive meds he’s on. It is incredibly hard for anyone, spouse or children to internalize what is happening. It happened to me so fast I don’t even know if the situation caught up to me for months. When you see your oncologist and specialist, ask tons of questions. An awesome lady here, Missy, usually has good questions lined up. The insomnia could have a lot to do with the racing mind. My boyfriend has had to leave his job, and is now a home body. And he wishes so much he could work again. Work is a good distraction.. men are strange creatures. It could be good for him, but talking is good to know where his mind is. I hope this helped 😕 if you have any questions please please ask ❤️❤️
Thank you so much for your response! I’ve actually be a bit of a stalker over here and have read your story. You seem like an amazingly strong woman and I’m sure a huge support to your boyfriend! I’m so glad he is doing well. Amazing the response he has had and I pray that my husband also responds to his treatment!
I guess my concern is also with quality of life. Even though there are so many new treatments available, it seems they all come with so many side effects. I know my husband would not be able to handle it if he could no longer work. It also seems that at least with melanoma there are not that many people that stay NED for long without having to go on new treatment. I know I just need to take it one day at a time!
Welcome to HealthUnlocked. It sounds like your melanoma practice group is now tracking what your husband needs carefully. We have found that adjusting to living with melanoma is a bumpy ride. We still both go through stretches of insomnia, anxiety and depression. Ambien is a powerful sleep med. my husband has benefitted from a consult with a psychiatrist who specializes in cancer patients and takes an antidepressant which has helped. We both also have worked with a mental health therapist together and he also sees her alone. We also use online apps for mindfulness meditations (like CALM) as we are going to sleep which helps fall asleep.
With kids the ages of yours if they aren’t talking to parents directly that’s not hugely surprising to me. Sometimes asking them how they would like to receive information about Faf and his melanoma and treatment can be a pathway: with printed articles you search for? Verbally? In convo with you/ dad/ both of you? Would they prefer to read online (suggest specific and reliable sites and discuss why these are worthwhile and how to critically read and avoid blogs/ wild anecdotes). Some families write back and forth via texts, emails or I know one family that would leave notes/ questions on paper plates slipped under the door. Because sometimes breaking down conversations into smaller bits when you don’t have to be face to face is safer feeling and easier to manage. Sometimes it’s another trusted adult/ uncle/youth minister/ coach that is the good listener and support for a teen who also worries about adding to the stress and burden for parents
Hey folks, what are other successful ways you’ve walked through parental cancer with your kiddos?
Thank you Missy for your thoughtful response! I am researching therapists and hope to find a good match for my husband. Ironically my husband is a Psychologist but he does forensic work. I thought he would be very receptive to seeing one but he seems to have forget all he learned in graduate school 😉
Working hard to get resources set up for my kids too.
Sometimes therapists, because they know how the sausage is made, need an extra skillful therapist do respect and trust can occur
If you have a faith tradition it may also take an extra special minister to bring potential pastoral care. Therapists face existential stuff in particularly tricky ways. Good luck
Hello, and welcome, 1st take a deep breath, a lot of informtion is going to me coming at you all at once. All of your worries are valid, but don’t let them consume you. I am so glad you reached out to this group. They have all helped me so much, I hope we can be of some comfort and help to you.
It sounds like your doctors are on top of this and are doing all the right tests. Try to prepare as many questions as you can ahead of time. I made a big notebook separated with dividers, and I take it to every appointment and take notes and then go over them at home again to digest it all.
My husband does not have experience with earlier stages of melanoma, my husband was diagnosed with advanced stage IV melanoma in his lungs, bones, thyroid, paritoneal cavity, and his liver is full. My husband was diagnosed 17 months ago, and has been NED for almost a year.
He does have experience with Opdivo. He was started on Opdivo & Yervoy (He could only take 2 rounds of Yervoy) and has continued alone on the Opdivo still today. He was on Chemo Taf/Mek for 6 months as well. Everyone has different side effects to the drugs, and they have different medications to deal with a lot of those side effects, so don’t give up. When the medications work, they work, and it is a miracle, at least it was in my husbands case. My husbands 1st 3 months were very rough, he couldn’t do anything at all, and we weren’t sure how long he was going to live or if he would ever work again.
I understand his concern about work, and supporting his family. Our youngest is at a private university, and my husband worries about finances as well. I can tell you that my husband after the 1st 3 months started feeling so much better, so much so that he went back to work, and he now goes to work every day. His work is very understanding, and if he isn’t feeling well he can come home, but for the most part he does ok at work.
My husband does experience a lot of fatigue, and is always tired so we don’t have any experience with sleep medications, but I’m sure others on here have some information in that area to share with you. I do know some people have talked about CBD oil and saying it has worked for them for both sleep and anxiety as well.
The depression and anxiety are totally normal and expected, but they can be all consuming. When my husband was able to start walking and eat, we were out of the house whenever I could get him out. I google funny silly places to visit, different places to go out to eat, sit at the beach and watch the waves, go to the mountains look at the snow. Visit with his friends, Anything to get him out and keep his mind occupied with something other than this disease. We have gone to visit our grandchildren, and try to see our youngest who lives close by. We take it moment by moment. Every day is a blessing.
My husband has always been a very quiet and private person, so ever since his diagnosis he has never really wanted to talk about it at all. We are Christians and his faith has guided him. He is confident in where he is going. I will admit at 1st I didn’t want to hear hear this, but we now try to focus on the positive and live in the moment.
Our oldest daughter who was 32 when he was diagnosed, at 1st suffered much anxiety and depression thinking she was going to lose her father, she has been able to verbalize what she is feeling. Seeing her father return to work, and me getting him out enjoying life, has changed her outlook for the better. She feels blessed to have more time with her father. My youngest daughter was 19 when he was diagnosed and to this day does not talk about her fathers diagnosis. She acts as if it doesn’t exist at all. She doesn’t talk to us or anyone else about it. No matter how hard we try, she refuses to acknowledge it. Children deal with things differently. If your children will talk to a counselor, or a trusted family member, friend, or pastor I think that is a wonderful thing for them.
My husband is being screened every 3 months alternating, he has a PET Scan & Brain MRI every 6 months and CT Chest, Abdomin & Pelvis every 3 months as well. His Oncologist has told us that each test shows something a little different. It is very stressful when that 3 months comes around and he has to have scans, but so far the results have been good.
Let us know how his surgery goes on Monday. We are all here for you, any way we can help.
I will be praying for your husband and your family.
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