- February 27, 2019 at 12:40 am
i have been lurking for a while and figured it was time to introduce myself.
My name is Tania and my husband was diagnosed with desmoplastic melanoma in October. It is such a rare melanoma that even his own dermatologist misdiagnosed it for 6 months. Needless to say, what started as a small lump on his neck developed into a large lump. He had surgery on 10/31 to remove it. Margins and lymph nodes where clear but it was a very aggressive tumor that had infiltrated his muscle.
clark level V
breslow thickness 20mm
mitotic rate 8mm
We live in Orlando but ended up traveling to Tampa to meet with Dr. Grossman at the Moffitt clinic as we were unable to find a melanoma oncologist in Florida that had any clue about this rare melanoma. He recommended starting immunotherapy.
My husband started his first round of Opdivo in January. At this time he was also concerned about a growth that had appeared on his finger. The did a needle biopsy while we were there and the initial findings looked suspicious. They took more tissue to grow in the lab but apparently they did not get enough of a sample so they were not able to determine if this was a metastasis or not. He did get a full PET/CT scan. He had one lymph node next to the surgery site that lit up but we understand this could be inflammation from the surgery. He did have targeted radiation to his neck to hopefully catch anything in that area.
Nothing on his finger lit up on the scan but we were told that it was possibly too small to be caught on the scan. The oncologist thought we should just wait and see but as my husband had been exceedingly anxious we decided to go ahead and have it removed. Surgery was last Monday with clear margins. We get pathology results this Wednesday. Hand surgeon was 99% sure it was “nothing”. I really wish they wouldn’t say such things. This is exactly what my husband was told for 6 months prior to getting a correct diagnosis. DM does not present as typical melanoma and most doctors have no clue about it’s presentation.
i remain very optimistic and grateful that we are at least at a time when there have been so many advances with treatment for melanoma.
My husband, however is not. He is extremely anxious, depressed and having a hard time functioning. We have two children; 13 yo daughter and 16 yo son. I am trying to keep things as normal as possible for them but it is hard.
The biggest problem my husband is having right now is severe insomnia. It started about 3 weeks ago. He was getting maybe a couple hours of sleep a night. This obviously impacts his state of mind. His doctors have tried him on everything….ambien, Ativan, Trazadone, melatonin…. I have done quite a bit of research in Opdivo but insomnia does not seem to be a side effect. We’ve done everything we can to try and help him sleep….dark room, cool temp, diffusing lavender essential oil, meditation… but bothering seems to work. Not quite sure what to do. He is mostly worried about not being able to work if he continues to not sleep. He is self employed so he is not eligible for short term disability. Has anyone experienced insomnia with immunotherapy?
I have found this forum to be so inspiring!
Wish I didn’t have to be here but grateful that this community exists!!
Peace + love,
- February 27, 2019 at 12:50 am
I am sorry for what you and your husband, as well as your children, are dealing with. I do not know of any data demonstrating that insomnia is related to opdivo. However, the diagnosis of melanoma can certainly cause stress leading to insomnia. Perhaps some counseling to help deal with anxiety might be the most helpful approach.
Also…while melanoma of any sort at any time sucks great big green hairy stinky wizard balls!!!!…focusing on positive outcomes rather than strictly negative ones may be helpful. I am a person who has been dealing with melanoma since 2003, having been diagnosed with Stage IIIb melanoma at the age of 39 with a 10 and 12 year old. Back in those dark ages of melanoma care, there was no treatment option other than interferon and removal for folks like me, who at diagnosis had a skin lesion and a postive sentinel node. Thus, I watched and waited as I advanced to Stage IV with melanoma brain and lung mets in 2010! BUT!!!!!!!!!!!!!!!! Even as a Stage IV patient – after 2 1/2 years of opdivo at Moffitt in Tampa….I remain NED…having no evidence of disease….STILL….with no further treatment. There is hope.
I wish you both my best. Celeste
- February 27, 2019 at 4:56 am
Cancer is really stressful. So is uncertainty. It sounds like your husband is experiencing a lot of anxiety over this. Has he considered seeing a counsellor or therapist? Medication can help, too, but you've said he hasn't found one that works for him yet, so a counsellor might be the next step. A counsellor will give him a place to talk about all of his fears and practice mindfulness to learn to live with the uncertainty and fear. My husband finds a great deal of relief from talking to his counsellor every two weeks.
Also, there's cannabis! Not sure if your husband has tried that. Puts my husband and I right to sleep.
- February 27, 2019 at 2:37 pm
The funny thing is that my husband is a Psychologist. He does forensic work and not typical therapy but you would still think that he would know better! I think I am getting closer at convincing him to go see someone.
He has a medical marijuana license to deal with the pain from his hips. He has had five hip surgeries. His last two replacements seemed to be working and we thought he could finally get back to a normal life and bang…..hit with the big C. His anxiety has been through the roof and he believes there is a fine line with him for the cannabis and that it can actually make him more anxious so he has stopped doing that. I hear that it is really helpful for a lot of people though!
- February 27, 2019 at 5:31 pm
Yeah, there is definitely a point where cannabis is no longer helpful for anxiety…!! Just a tiny bit takes the edge off for me! I've never hit the point where it makes me paranoid but I've definitely heard that happens a lot.
I can relate to your husband's reluctance to talk to a therapist. My husband is totally fine with it and goes regularly and benefits, but I just can't bring myself to go. I'm not sure why. But after a couple months, I was able to handle the stress using other coping strategies pretty well, so it worked out for me. Maybe your husband will hit a tipping point — either the anxiety gets so bad that he really decides to start talking to somebody, or he will learn to deal with the anxiety in a way that works for him.
Part of it might just be time … I think everybody really spins and struggles in the first several months after diagnosis. Only really stable, calm, mindful people cope through that time well (I am not those any of tohse things). That doesn't help your husband with the lack of sleep, so I hope he can find something that works for him. But I also think that to some extent there is no way to fast-forward through intense grief and fear — grief for the future you thought you had, fear for the future you might end up with. These feelings just suck and the shock takes a long time to wear off before you start accepting the way things are and stop trying to predict the future. At least that was my experience.
- March 2, 2019 at 1:18 am
Yes, I truly hope that in time we will both learn how to live in this new reality! I see a therapist and find it very helpful. Planning on making an appointment for my husband and dragging him there if I have to.
Your description of the grief and fear is so spot on!! There is definitely a lot of grieving the life that you thought you had in front of you!
I will stand firm in my belief that we can find a way to make the best of this.
One day at a time!!
Thank you so much for your thoughtful words x
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