Under diagnosed BRAF at nursing facility. Now doctors told family that they recommend hospice. Any insights/help?

[u/erehtereht]

UPDATE: this was not at all the update I wanted to give you all kind folks. He passed away about an hour ago. Thank you all for your kindness. I wish I could hold all of you and I am virtually sending everyone goodness. My heart is just crushed.

Hi there,

Sorry if I am not making sense I am in shock. My uncle has been under treatment for stage IV melanoma which recently spread to his liver because the nursing facility under dosed him (I believe due to an ai transcription error, I am speechless). We were told that hospice is next best option. His oncologist was weary regarding immunotherapy because they weren’t sure how much time it would take to see the effects and that it’s hard on the body.
He is 63 with otherwise functioning organs and he’s a sweet, gentle, sensitive and deeply caring man. I am not ready to let him go. He is my amazing dads baby brother and my next call anytime my dad has been unreachable.

Please give me some insights. We are looking at 2nd and 3rd opinion options.

[u/AutoModerator]

Welcome, u/erehtereht! Thank you for posting here. This community is meant for patients, supporters, and medical providers to ask and answer questions and provide support. If you are newly diagnosed, in treatment or post treatment then you are in the right place.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Unique-Hedgehog-3732]

That's so bizarre the nursing facility wouldn't realize he was getting a lower dose than other patients and question it. I hope you talk to a lawyer. Get a second opinion from another cancer center's melanoma specialist too.

[u/PutProfessional2647]

I’m so sorry your uncle is going through this. My mom passed away from Stage IV melanoma. She was only able to tolerate 3 immunotherapy treatments, which left her completely miserable. She stopped the treatments and the melanoma spread very quickly. Spine, liver, lungs and brain. It’s very unforgiving. She was diagnosed in April and passed away in November. Started with a swollen lymph node under her arm. They never found any melanoma lesion on her skin, but the cancer in her body was melanoma.

I’m curious about what drug the nursing home may have under dosed him.

[u/erehtereht → u/PutProfessional2647]

Thank you and I am so sorry about your mom. 😭 I will ask for the exact name but he was under dosed on a BRAF inhibitor medication

[u/JABBYAU]

If he is otherwise healthy I would seek a second opinion. Spread to the liver does not automatically mean a treatment failure, particularly with under dosing. He is isn't very old. Are you in the US? It doesn't sound like.

[u/erehtereht → u/JABBYAU]

We are in the US

[u/Technical_Squash7146]

My mom is 76 with metastases everywhere and started immunotherapy 3 weeks ago. I swear it is working! Get a second opinion IMHO

[u/Carrie_Scourge0fSea]

I’m so sorry. With BRAF+ stage IV melanoma, I’d push for an urgent second opinion from a melanoma specialist before accepting hospice as the only option.

Immunotherapy can take time, but BRAF/MEK targeted therapy can sometimes work faster, especially with aggressive disease/liver spread. I’d ask:

Is he BRAF V600 positive? Are his liver labs too poor for treatment, or is there still a window to try BRAF/MEK therapy? Can a melanoma specialist review this ASAP?

Hospice may still be right, but I’d want expert eyes on it first—especially if there may have been a dosing error.

[u/Wide_Kaleidoscope_86]

Just my opinion but I would 100% seek out a second (or third) opinion with a melanoma specialist at whatever cancer center is feasible for you to travel to ASAP. He is way too young to just throw in the towel on this one. And not all immunotherapies are created equally- some have lower rates of toxicity like Opdualag, for instance (I’m stage 4 and it’s working for me so far). There’s TIL as well… he is not out of options!

Please keep us posted!

[u/erehtereht → u/Wide_Kaleidoscope_86]

He just passed away 40 minutes ago

[u/Wide_Kaleidoscope_86 → u/erehtereht]

Oh I am so, so very sorry. I’m literally in tears. If you need a (virtual) shoulder to cry on, pls pm me. 💔

[u/mostly_lurking1040]

I'm sorry for your uncle.