SBailey

There is a lot of research currently underway focusing on new treatments or melanoma vaccines. Some will never make it to clinical trials for a variety of reasons, mainly because they aren’t viable candidates to move forward. It is a long process.

Vitamin D is an important nutrient for everyone. It is not a proven treatment for melanoma, nor is it proven that in HUMANS it will reduce the aggressiveness of melanoma, but this is certainly a very interesting focus of research. If one day it is proven through clinical trials that it boosts effectiveness of immunotherapy, targeted therapy or whatever new treatments are developed, that’s great.

For now, it is just an important nutrient, like so many others that promote good health, and you’re right that the sun is a great (free) source. That’s it. The NIH has some very useful info on what vitamin D does and dosage recommendations: https://ods.od.nih.gov/factsheets/VitaminD-Consumer/

My husband had a somewhat similar situation:
First melanoma Fall 2007 on his upper back, WLE no other treatment (honestly, I didn’t go to the appointments and was very unaware of the details re melanoma). Mole appeared on his arm in Nov 2017 and hubby refused to deal with it until June 2018 because it started bleeding. Was 3.5mm transected, ulcerated, showed signs of regression. During SLNB they removed 10 lymph nodes and all were positive for melanoma. PET scan was clear except for area in arm where he was also recovering from surgery, so they could not rule out inflammation as being the cause of the lit up area. So, at that point he was IIIC and BRAF negative.

We were reading the same studies re CLND not contributing to the OS. Treatment recommendation was CLND, radiation therapy, and Opdivo every 2 weeks for a year. He chose not to do the CLND nor the radiation therapy, but agreed to the Opdivo. (he is very resistant to traditional medical approach to cancer treatment, also he uses his arms in his profession and didn’t want to risk lymphadema).

After 4 months on Opdivo (with mild side effects), the cancer spread into lymph nodes in his chest area (pectoralis area) and are large. He is now Stage IV. They switched him to Opdivo/Yervoy combo and he is tolerating it quite well. Two treatments in, third this week. Onc. wants a PET scan after third treatment to check on progress. We’ve had a surgical consult and depending on the results, surgery may be recommended for curative purposes or palliative/preventative purposes. He is still hesitant to have additional surgery, but because the tumor is now fungating (I’ll let you look that up, it’s gross), I think he has no choice imho.

So, do we regret not having the CLND? No, but it may have helped slow this down, no doubt about it. We were hoping the Opdivo would knock it out. Now, we are hoping the combo will reduce the tumor load and will show no further spread. Btw, he has not had lymphadema from the removal of the 10 lymph nodes, so if they do a CLND now, we are hoping that bodes well for his response, but there are no guarantees.

I am sorry you and your partner are going through this. It is really hard making these decisions when you want to balance quality of life vs impact of treatment vs. extending life by getting to NED.. Also, I understand what it is like to want to support your partner’s wishes. I must say that now that my husband is Stage IV, I am going to be much more forceful in my opinions about what he should do. The stakes are much higher and this disease has proven itself to be an aggressive opponent, so I feel as though we need to respond in kind.

Best of luck to you both!

Jackie was a big help to me sharing her insights and experience as spouse of patient who isn’t onboard with treatment, similar to my husband. I have found this board to provide more encouragement and hope than anything elsewhere. My husband started at Stage 3C but it has now progressed to Stage IV, he is also BRAF negative. This is a very strange and long ride as a spouse. I have found that once the initial shock starts to subside, you start to find a “new normal” but there are bumps in the road that can make you feel unsettled, anxious, etc., but then you adapt and reach homeostasis again. Our children are grown up (25 and 21), but I’m still concerned for their mental health since this worries them too, esp. with my husbands reluctance to stick with the treatment plan. Def find someone to talk to, stay in contact with this board. I take encouragement from the fact that the new treatments have been so revolutionary.

It is great that you and your husband are on the same page with regard to treatment–that’s huge. We’ve been lucky in that my husband hasn’t had any serious side effects, even with the ipi/nivo combo (2 treatments, and almost 6 weeks in) but you never know. I wish I had better words of encouragement, but you’ve definitely come to the right place to put all the information into perspective.

Hugs to you and your family!