Journey with Melanoma

[Kimmi3e]

Hi, thank you for adding me. My name is Kim & I have been on this 13 month journey with my 49 year old husband Darren. He was diagnosed April 27th 2016 with Stage 4 Metastatic Melanoma in the lymph nodes with no primary found. He has had 2 Radical Neck Dissections with 120 lympnodes on each side removed as well as 1/2 his right thyroid. He has had 20 radiation treatments and has started on immunology treatment Intron A where he has had 20 treatment Mon - Fri and is now on a injectable pen of the Intron A Mon - Wed - Fri for 11 months. He sleeps all the time and is now having skin issues that we are treating. He had another CT scan Thurs and are waiting on results with the Oncologist next Thurs. His white counts have been an issue and they have had to lower dosages a few times. We are just taking everything one day at a time. Looking forward to hearing your journeys with this terrible disease and how you and your love ones are handling things.

[missyrand Ambassador]

You and your husband Kim are on a challenging journey.

I don’t have any personal experience with interferon as a treatment approach, but you may hear from other caregivers who can speak to the specifics of this protocol. It sounds like Darren is using all his energies to partner with this treatment. I think it is a common side-effect with all the immunologics to have skin challenges. We have been helped by our providers with both over the counter and prescription medications to address outbreaks. My husband has re-current peeling of his skin on his fingers, which makes playing his guitar/ bass/ mandolin unworkable at times.

He is 2 years into taking Keytruda every three weeks.

I support your approach to taking things one day at a time. It can feel very lonely and isolating when our partners feel really crummy. And I have experienced secondary Scanxiety awaiting news from tests, just as my husband has. What are things you do to manage staying present on this melanoma journey?

[Kimmi3e in reply to missyrand]

Hi, I too experience scan anxiety it's so hard trying to be positive while waiting for results. It seems Darren is having some sort of scan every 4-6 weeks. And the waiting seems to take forever. I have heard of Keytruda it just has recently been approved in Canada. I have been on a site called Malenoma Man where I have been getting a lot of useful information but some can be scary. My husbands toes have been peeling sounds like the same symptoms as your husbands hands. He too has been prescribed creams as well as over the counter ointments. Hopefully we will see some improvement soon. It sure does feel lonely at times especially when he sleeps 18+hours a day. Hopefully with the nicer weather coming he will feel like getting out more. Nice chatting with you I'm hoping this group will be a comfort for all of us on this journey 🌞

[missyrand Ambassador in reply to Kimmi3e]

Here are some scientific websites that I follow, if you like to track the research. Not everyone does. But I am an information hog. I also tolerate the research in doses: early on I read a lot to become informed and had to remember that a group of "melanoma cases" represents a group, and not my husband. It did help me to position my heart and mind for a tough battle, and allowed us to give serious discussion to our finances and to review our end of life documents (wills, types of treatments we would both want/ not want and under what conditions). We also then sent on to our young adult children documents we found helpful, although we know they each did their own kind of online googling. It was our way to provide guidance in what can be overwhelming, and a digitized world where there is also, let's say, items with a lack of fact underpinning it.

Here are some sites I found helpful:

melanoma.org/

melanomanewstoday.com/

melanoma.org/

cancer.ca/en/cancer-informa...

melanoma.org.au/understandi...

What have been other helpful online resources to other folks?

[Kimmi3e in reply to missyrand]

Thank you I will definitely check those sites out. I would rather be informed and be able to ask questions then be bombarded with things I havnt heard of. Have an amazing day.

[missyrand Ambassador in reply to Kimmi3e]

And I checked out your Melanomaman on Facebook. thanks for the lead. Peace Kimmi3e.

[missyrand Ambassador in reply to Kimmi3e]

Kimmi3e,

I was looking back in posts and came across yours again. How are you and Darren doing?