New to this

[roachj12]

So, I am beginning a new journey. My partner was just diagnosed with metastatic melanoma which was ocular in origination. Just beginning to look at options but I have to admit I am scared and can't shake this deep, sinking feeling. I am hoping to find a local support group and may explore some counseling, but I am hoping this forum will be some means of support. Thanks for reading.

[missyrand Ambassador]

Roachj12,

I'm sorry you have entered this club where no one chooses to join, but we are here for you; you belong. There are many resources now for living with melanoma. The Melanoma Research Foundation is an excellent resource, and has also a constituency that focuses on ocular melanoma. They also have a listing of local support groups as well as "buddy" resources for patient and careprovider if you want a 1:1 contact at some point.

Everyone is different in terms of how they manage anxiety and negotiate the phases of "shock and awe" to living with melanoma as a chronic illness. If you can tolerate it, there are lots of good postings and resources throughout this site. One tip: read only the supported, evidence based science websites.

My husband and I facilitate a support group in Alexandria, VA that meets monthly. We were trained by MRF.

Peace to you even in the midst of this frightening time.

Missy

[roachj12 in reply to missyrand]

Thanks Missy. I have found that each day brings a different set of emotions. Today is a better day (at least so far). I tend to be a "fixer" so I have been doing a lot of research. I appreciate the tip on evidence based articles.

We don't know what tomorrow brings so I have to keep telling myself to just take one day at a time and to be thankful for that day.

Jeff

[missyrand Ambassador in reply to roachj12]

I’ve heard the first months of a diagnosis described as a roller coaster. This was consistent with our experience but then it became less harrowing.

Use your safety devices Jeff like pacing, gratitude, and love and support from meaningful people, places and things. , Jeff.

I continue to try to adhere to this practice.

Missy

[strawberryjam in reply to missyrand]

missyrand

Do you know if any other support groups similar to the one you run in Alexandria ? I live in California and would love to attend a group specific for people facing melanoma . Thanks

[missyrand Ambassador in reply to strawberryjam]

Strawberry jam,

I recommend contacting the Melanoma Research Foundation who has trained support facilitators and may be able to help you find a group in your California area. Let me know if you need more help connecting to them. Missy

[Crycleo]

Doctors who treat melanoma are notorious for keeping information from you. Decide how much you want to know about your illness,. Let them know that under no circumstances are they to decide how much they are going to tell you about your illness and treatment without your input. They cannot honor those wishes unless they keep you informed.

[roachj12 in reply to Crycleo]

Thanks Crycleo. So far the doctors have been pretty forthcoming in their information. Even though the prognosis is not the best, I don't feel like they have hidden anything. Fortunately, the last PET scan and MRI shows no further mets, only a very small suspicious spot on a lymph node but the oncologist was pretty convinced it was nothing. Uveal melanoma typically spreads through the blood stream so hopefully that is the case. There are no clinical trials where we live in Indiana, so flying to NYC this week to meet with a Dr. Carvajal at Columbia University. If anyone has any experience in working with him, your thoughts would be greatly appreciated. Supposedly he is highly recommended with his work on uveal melanoma and other uncommon cancers.

Glad I have found this site and the support I have found.

[roachj12]

I am looking back and can't believe it has been 3 months since I posted on this site. I will have to say that for right now, the emotions have settled a bit and now it is a matter of making the most of each day. As of now my partner is classified as NED, no evidence of disease, but we also know that there is no cure for uveal melanoma that has metastasized. (spots on the lung were removed). CT scans again next week to see if anything has progressed and if so, will explore treatment options leading up to a clinical trial that he would be eligible for. I keep everyone in here on my prayers as this is not a fun journey but I still believe in staying positive and being thankful for each day!

[Tmd5 in reply to roachj12]

What treatment,if any, did y’all do?

[roachj12 in reply to Tmd5]

Tmd5,

He had 2 mets (6 mm) removed from his lung and that has been the extent of treatment thus far. We flew to NYC to meet with an uveal melanoma specialist and he said there is nothing else to be done until additional growths occur. The plan would be (if/when growths happen) to go the traditional route of Keytruda for two rounds of treatments and then if no progress, enroll in a clinical trial. The oncologist identified two trials taking place that have shown good progress; Chicago and St. Louis. It is a waiting game for each round of CT scans to see if there is any progression.

Thanks for asking.

[roachj12 in reply to roachj12]

Well, haven't posted on here in a while as we went 4 months with no progression of the disease. Now, additional mets on the lung, growth on the liver and suspicious lesions on the T10, 11, and 12 vertabrae. Starting Opdivo and Yervoy this week as of right now. We want to verify that this combination won't eliminate him from a perspective clinical trial before agreeing to this drug combo.

It is so odd, as everything seems to go along like normal and you settle into "life" again and then it takes a turn. I think we both knew that this day would come, but have also been blessed that the only treatment he has had to receive was the lung wedges that were removed 6 months ago. Hoping this drug regimen produces some results; if not, then a clinical trial. Working on a fundraiser in his name for the Melanoma foundation in September!

Thanks,

Jeff

[strawberryjam in reply to roachj12]

I sincerely hope your partner gets an excellent response to the meds. It’s quite a journey but I often tell myself that at least there are drugs and clinical trials available to us. May the researchers keep making progress