Update: Hello all, it has been a while... - Melanoma Caregivers

Melanoma Caregivers

Update

kellyOd profile image

Hello all, it has been a while. A lot has changed in a very short time per usual. At this time Ryan has had another mass spread. His right arm is literally covered. Two superficial tumors are now so big and bleeding to the point that we have to now radiate them to get them to stop bleeding. Tumors in both armpits, groin, leg, chest, and lower abdomen. All tumors we can feel.

We are making a decision on treatment on Friday. If anyone has anything for this let me know. We are struggling. We are essentially going to recycle treatment at this point? Is there anything new out there? We have “the right to try” act. If it is a promising trial I’m all ears. Please anyone have any advice right now?

13 Replies

Oh Kelly , this breaks my heart. We are in a similar place - sudden and extensive progression and we are making a treatment decision Friday. Both Ryan and my son are talented and kind young men who shouldn’t be experiencing this ! ( nobody should!) My heart is with you and I do understand what you are going through. I have been looking at trials for a couple of months. My son is in the hospital and I am with him but as soon as I go home I will review my notes . If you feel ok giving me your email in a private message , I can forward things to you tomorrow . Wishing you and Ryan all the best . My heart is with you. This is so so hard!

Wow we as well are making the decision on treatment Friday. I would love to send my email - I will do that! I am so sorry to hear you are all in the hospital currently.. is it complications?

fever pain nausea - rule out infection but they say it could just be related to the sudden growth of the cancer . There were some signs of infection ( high white count fever) but they didn’t really find a source of infection yet

Same happened to Ryan. But he had an ingrown toe nail that had got infected unbeknownst to us. Caused a long hospital stay and one less toe nail lol. But that is also correct - the sudden growth. His body naturally does WANT to fight it.. so elevated WBC. If you don’t mind me asking, where are the locations or extent of the spread?

Oh my dear Kelly, I am so sorry to hear this. Did you look into the relatlimab?

I am not researching trials at the moment since my husband is responding to de

Nivolumab. However… he recurred with a big tumor in his armpit and despite 4 infusions of ipi/nivo , it continued growing. Our oncologist had him do low intensity radiation to ‘break the tumor open’ so that the medication would work better. That did the trick. Just another thought for you.

I am sorry I cannot be of more use to you right now, but know that the 2 of you are always in my heart and prayers ❤️

Much love

Dorothe

kellyOd profile image
kellyOd in reply to doulagirl

He is currently on the relatimab and Nivo right? We are looking into that one as well! I am so glad to hear he is responding well that is so amazing! I am so happy for you all : )

doulagirl profile image
doulagirl in reply to kellyOd

Just Nivo right now. The relatlimab was his first line of treatment,he is currently on the second.

Hope you find something that he hasnt tried yet 🥰

yes i was going to suggest relatimab too

missyrand profile image
missyrandAmbassador

Kellly,I'm sorry you and Ryan are suffering so right now.

I would use the MRA Clinical Trials Finder curemelanoma.org/ or

MRF's melanoma.org/patients-careg... for getting quick help from someone skilled in matching your needs to what is available.

It's hard at the point Ryan and Carol's son are to find something unique that hasn't been tried yet.

We all are holding our breath, then releasing it with hope for options.

Missy

Kelly, you and Ryan are in my prayers 🙏

Kelly I’m so sorry to hear this. I echo these suggestions. And holding you both, and Carol, too, in my heart. I really hope you two are able to connect by phone /email. Xx Nadia

I am very sorry to read your news and wish I could help. Right now, my husband seems to be doing well on Opdivo. He had a stroke in September, but - except for tiredness - he feels normal.

Kelly, I am so sorry to hear about Ryan. He has been through so much it breaks my heart. I am sending lots of prayers your way. I wish I had answers, but you are amazing at doing your research, and I pray there is something new out there that will work for Ryan. Gods Blessings to you both

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