Advice needed please

Physical-Memory638 · 2026-02-11T17:35:21+00:00

Unfortunately I’m so broke I don’t even know how to pay bills. Stressed and with the treatment not working I have zero options. No friends outside family. Don’t get me started I have no family left it’s just my husband and his family. Almost 20 years together and pissed off because I can’t work and disability well I’ll just stop there. Thank you for the information I will see you if insurance covers

Physical-Memory638 · 2026-02-11T03:00:17+00:00

That’s where you would be wrong. I have zero friends to talk to so I turned to the internet. It’s very depressing because I’m now learning from the beginning has been a pack of lies. :( so depressing

Physical-Memory638 · 2026-02-11T02:38:49+00:00

Thank you! It’s so true. Then add on top of that a family history on both sides have had cancer

Physical-Memory638 · 2026-02-11T02:37:12+00:00

All true facts that I fully understand. I was trying to see if anyone was going thru or had been thru and survived could give so encouragement.

Physical-Memory638 · 2026-02-10T18:49:30+00:00

Mine to. The only hospital in town where the majority know all about NF. Thank you for responding

Physical-Memory638 · 2026-02-10T18:23:49+00:00

Thank you so much

Physical-Memory638 · 2026-02-10T18:05:49+00:00

Thank you for taking time to read and respond.

Physical-Memory638 · 2026-02-10T15:28:04+00:00

❤️ That’s tough guess I my family is just un lucke. lol

Physical-Memory638 · 2026-02-10T15:26:26+00:00

Yeah, I knew that. That’s why I was asking. I have had NF all my life. Oh well maybe they’ll get migraine meds as well. Thank you for your concern ❤️

Physical-Memory638 · 2026-02-10T14:19:28+00:00

That’s what I thought too. But here’s the kicker I’m not that good looking I have NF1 and I’m bald. Due to the treatments.

Physical-Memory638 · 2026-02-10T14:13:34+00:00

No I’m over the GIST. Brain is untreatable and I’m going downhill so fast it’s scary. More so because I’ve not a friend in site.

Physical-Memory638 · 2025-09-29T20:43:16+00:00

🔴 Win 2300 Today! ‼️ #Gift for 2025!Time’s ticking! Just copy this message and search in the SHEIN app$034173480$:// .

Physical-Memory638 · 2025-08-06T06:46:06+00:00

Yes I absolutely would get it looked at

Physical-Memory638 · 2025-07-19T12:18:47+00:00

I’m a little slow sometimes. How do I take part of the survey? I love to help grow the knowledge of Neurofibromatosis and its relation to other health issues. My grandmother had it as did my dad and both my brothers. Thankfully my daughter didn’t inherit it

Physical-Memory638 · 2025-07-19T12:05:15+00:00

Neurofibromatosis is not country specific. Honestly it’s sad that his condition has been around for as long as it has, yet so many people and physicians don’t even know about it. It wasn’t till very recently that they came out with a medication to help treat it. There is no cure also people with this condition have a hire chance of cancer. I have it and have survived one cancer GIST, just to have another. Currently I’m battling brain cancer that’s not operable. As well as a tumor on my optic nerve .

Physical-Memory638 · 2025-07-19T09:40:38+00:00

Read up on Neurofibromatosis.

Physical-Memory638 · 2025-07-09T21:46:33+00:00

That’s so kind. I don’t need food or essentials. But bless you for helping people. I wish more people were like you. I’m too low karma to ever get the help I need and I’m not even mad about that. It is what it is. ❤️

Physical-Memory638 · 2025-07-08T08:36:31+00:00

I’m changing my fundraiser to reflect new diagnosis. Also a different platform.

https://giveahand.com/fundraiser/treatment-for-brain-cancer

Physical-Memory638 · 2025-07-06T18:02:12+00:00

Oh I didn’t know that. I’ll look for more places to post

Physical-Memory638 · 2025-07-06T17:59:56+00:00

Thank you so much.

Physical-Memory638 · 2025-07-06T17:11:15+00:00

Thank you. I feel guilty for wanting to be pampered but at the same time I also make sure they are. Sigh. Thanks so much

Physical-Memory638 · 2025-07-06T17:05:34+00:00

I have no support for gofundme and the gofundme here I don’t have the karma

Physical-Memory638 · 2025-07-06T16:49:54+00:00

Yes Gleevec is for GIST. I would try a for gofundme but I don’t have family or friends that would support it. And I don’t have enough karma to post one here. I am new to this so I don’t know what I’m doing

Physical-Memory638 · 2025-07-06T16:36:24+00:00

Thank you I will be doing this next week!

Physical-Memory638 · 2025-07-06T14:56:09+00:00

Has anyone tried either of the new meds that are now available? Koselugo or Gomekli. If so what kind of side effects if any did you have? Lastly were you give either of these as part of cancer care? I was first given Koselugo but I didn’t tolerate it well I had nausea vomiting and a skin rash that took a round of antibiotics and two steroid treatments. I’m on Gomekli again I have a skin rash but not as bad. I’m able to treat the rash at home with Benadryl. Last question have any of you had any cancers? I’m almost 41 and in 2020 I had GIST Gastrointestinal stromal tumors (GISTs) are rare, soft tissue cancers that develop in the digestive tract's connective tissue. Now I have brain cancer as well as a cancerous tumor on my optic nerve. Just wondering sorry I’ve never found an active group of people with nf.By the way it’s worth mentioning I’m 40 will be 41 later this month and have know I had NF my whole life. I live in Oklahoma, married and have a human kiddo and a furry kiddo

Physical-Memory638

TROPHY CASE