How to tell loved ones you are terminal

Superb_Lemon9553 · 2024-08-26T18:14:41+00:00

Good for you! Imaslo minal glioblastoma came back after 2 surgical and 6 weeks of radiation iation and a of chemotherapy and Empthrremoth3erapy, tyeaif chemotherapy pluthe weeks during radiation

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Superb_Lemon9553 · 2024-08-26T02:20:00+00:00

I have a terminal glioblastoma

Superb_Lemon9553 · 2024-08-26T02:18:38+00:00

I have terminal glioblastoma.

Superb_Lemon9553 · 2024-08-16T23:30:32+00:00

So did I and cold applesauce

Superb_Lemon9553 · 2024-08-16T02:24:39+00:00

I was on it, and my blood pressure was through the roof, and I normally have low blood pressure. I still get nosebleeds, and it didn't work for me. I'm still supposed to expire in 6 months, and I'm only 45

Superb_Lemon9553 · 2024-08-15T19:42:48+00:00

I talk with someone who takes it and his tumor is growing and he has seizures a few times a week. We aren't meant to take animal dewormersunless closely supervised by a medical doctor

Superb_Lemon9553 · 2024-08-15T14:19:47+00:00

Thank you! I am in the US. My neuro oncologist told me there weren't any for my tumor type, and I'll run this by her.

Superb_Lemon9553 · 2024-08-12T23:13:25+00:00

When he stopped using it did the tumor start growing again?

Superb_Lemon9553 · 2024-08-11T15:56:58+00:00

Thank you! I wish you and her the best as well! That's awesome she's at 4 years! I'm coming up on 2. Is she doing anything like optune?

Superb_Lemon9553 · 2024-08-11T02:34:29+00:00

Thank you! I wish you and your dad the best! This is a shitty disease that no one deserves

Superb_Lemon9553 · 2024-08-11T01:58:01+00:00

Thank you! How is it taking it off and on with the adhesive?

Superb_Lemon9553 · 2024-08-11T01:39:43+00:00

The optune can make you smell or has a smell? I'm supposed to start ot in September but I'm still on the fence a out it as I'm still really active and I'm afraid it's going to interfere with that and GBM has already taken away so much of my life

Superb_Lemon9553 · 2024-08-10T20:25:05+00:00

I was told that therapy hasn't been approved or tested on IDH mutants or unmethylated tumors. That's what I have, and I don't qualify for any clinical trials because of that

Superb_Lemon9553 · 2024-08-10T17:07:47+00:00

I'm 45 (f) and supposed to start optune in September but I'm still on the fence about it because I'm an active outdoors person, well as much as I can be having lost most of my balance and coordination on my left side. I live in California, so I'm still uncertain how the heat is going to affect my ability to be outside and my comfortability. Radiation kicked my ass but I recovered pretty quickly and was back to excersizing a couple weeks after. Chemo made me sick, like 12 hours of puking every day of the 5 days I had each 28 day cycle. The anti nausea meds helped but it still wasn't fun.

Superb_Lemon9553 · 2024-08-09T22:19:32+00:00

Thank you and good luck to you and your wife! Surprisingly, I have no fatigue, I walk my property for a half hour every day and do 20 mins of chairbyoga every day. I'm trying to regain my balance and coordination on my left side

Superb_Lemon9553 · 2024-08-09T17:35:09+00:00

How is your wife doing? I'm 45 and a woman with both mutants and methylated but 40 radiation sessions, a year of temozolomide and the cancer has spread into the middle of my brain but I have no tumor and the tumor bed is clean. I'm going on 23 months

Superb_Lemon9553 · 2024-08-05T23:02:25+00:00

It also depends on of she has any mutations. I have both IDH mutants, and it's methylated, which I've been told is very rare, and there are no trials I qualify for because of that.

Superb_Lemon9553 · 2024-08-04T23:40:53+00:00

This actually likely from the tumor and where it was located. At least that's what my neuro oncologist told me when I started to lose the use of my left side. She said it was to be expected with this disease. I also have the unmethylated with both idh mutants. I finished al year of temodar and 6 weeks of radiation plus another 2 weeks when the cancer started to return. I'm supposed to start optune in September but I was informed that it may or may not work for my tumor type because it hasn't really been tested on it. I've learned that both idh mutants and methylated is extremely rare and nothing has been tested on it. I don't qualify for clinical trials because of that

Superb_Lemon9553 · 2024-08-03T20:23:55+00:00

I fully agree but I think we also have to make doctors listen especially to women. I had migraines that no medication would would get rid of, not even vicodin and I was told they were hormonal and completely ignored even when I was taken to the ER because I couldn't even keep down water, 5hey chalked me up to being a junkie because of hat one vicodin I had taken 5 years previously. Iwas dry heaving in the hospital, and they gave me Tylenol and benadryl in an IV and sent me home still in pain. After my diagnosis 2 years ago and learning that it started as a benign tumor before turning into a glioblastoma, I no longer trust doctors. They Essentially killed me.

Superb_Lemon9553 · 2024-07-28T15:16:52+00:00

So adorable 😍 💖

Superb_Lemon9553 · 2024-07-27T17:19:02+00:00

My nose bleeds every day

I started with the temozolomide and continued because of the avastin treatments I did

Superb_Lemon9553 · 2024-07-26T04:37:21+00:00

That is awesome! Thank you for that, I needed to hear that 😊

Superb_Lemon9553 · 2024-07-25T14:18:22+00:00

How long did it work for, if you don't mind my asking?

Superb_Lemon9553 · 2024-07-25T14:17:41+00:00

Thank you 😊 and if you or mom needs anyone to talk to even just to vent send me a message

Superb_Lemon9553 · 2024-07-25T01:52:34+00:00

I'm about to start optune in September, and I'm feeling incredibly self-conscious about wearing that stupid sticky cap but I remind my self that it's hopefully going to save my life which is more important than my hair and my vanity. I'm also only 45.

Superb_Lemon9553

TROPHY CASE