#ogsiveo

[coldau]

More medical bullshit:

I'm 99% sure i've been going through withdrawal symptoms from Ogsiveo, which results in me being... CONSTANTLY nauseous. I'm in hell.

[coldau]

medical update about ogsiveo (blogging for anyone else who gets on it in the future and wants to see how other people's experience was)

After 2 months of being on the drug and having symptoms every day, my doctor is having me detox for a month and is going to start me on a lower dose later on.

My symptoms on 3 tablets 2 times a day were Diarrhea, mouth sores, and a constant relapsing cycle where I'd get a sore throat that'd turn into a dry cough then would turn into acute bronchitis. I'd often get upset stomach, too.

In general the drug made me really sleepy, too.

Honestly, despite all of that? I'd take it over the drug cocktail I was on before. Extremely high dosage Tamoxifen/Sulindac for 5 years hurt my body big time. I currently have a fatty liver from tamoxifen, it's kind of awful because I have to completely change my diet- but at the same time... I already needed to change my diet so now I have an excuse lmfao.

Desmoid tumor doesn't hurt as much these days, notably. Because I would constantly get a stabby-pinching pain where it was on my chest, like someone was shoving a tiny knife in me. I think I haven't felt it for over 2 weeks now. Which is nice. It wasn't unbearable in the slightest, just annoying.

[coldau]

Ogsiveo stuff

What is this, week three? something like that. Symptoms have been getting more harsh. I've been getting mouth sores every other day, which is annoying. But not the worst.

The worse part is the sickness like symptoms I'm having. Today I thought I was coming down with something. Nausea, fatigue, sore throat, cough, and general near pants shitting lol

I had no fever though, at all. I took a nap after feeling like putting in my AC wrung me out so thoroughly that I wanted to collapse, and suddenly half the symptoms were gone.

So I looked up the side effects, and all the shit I was experiencing, including the SORE THROAT (upper respiratory infection!!) was documented as a common side effect.

This drug is gonna put me through the wringer. I bought some potassium pills too because I think the dry mouth i was experiencing was from a lack of electrolytes, and I know I've been getting enough salt (I eat a lot of cheese lol)

[coldau]

Ogsiveo update: I have two mouth sores now on my tongue.

One of them is on the base underneath, the other is on the side touching my teeth. Talking hurts u_u

[coldau]

So a weekish into taking Ogsiveo, my symptoms have been heart burn or upset tummy on the occasion. But I did get my first mouth sore only a few days in- it was tiny and went away quick, and didn't hurt but was annoying!

My tumor hurts sometimes. But that's... normal. So I'm not thinking its the drug.

[coldau]

Talking more about desmoid tumors

So like, on the website for my medicine I've seen 2 videos from other women who had it, and both of them were horror stories.

One of them was about a lady who was older, and it was from before desmoid tumors were well understood so they super fucked up on it. It ended up regrowing inside her hip after they amputated her LEG!

The other was another horror story from a woman who was around my age, but she got it in her collarbone and her first doctors were fucking dumbasses and immediately operated on it to take it out. Which is a BIG no no as we know, but the thing is- they didn't even fucking do any biopsies to test out what it was? They just said "Lol lipoma" and sent her to surgery?! Like!? Oh my god???

It made me realize how fucking LUCKY i was. My diagnosis only took a couple months because I had to wait for my biopsy to get read. Maybe it was because mine was in my lower breast and I have a history of breast cancer in the family, but even in the ultrasound they were like "This doesn't look good..."

Goddamn. That girl got the short end of the fucking stick. I hope you're alright these days and that your tumor is shrinking now because of the drug we're both on, lady.

[coldau]

Started a drug called "Ogsiveo," Since no one else is talking about it on here I'll talk about it. I'm taking it for my Desmoid tumor that ate some of my breast.

First day they sent me a huge care package with my pills via mail, it came with 2 packs of anti-diarrhea pills, hand cream, hydrocortizone, lip balm, and stomach ache suckers. The pills came in a "HAZARDOUS" bag which is wild to me. I'm like 80% sure its not radiation or anything but guess this shows they really are heavy duty.

Its been an hour and a half and I took a walk immediately after taking my pills. My insides hurt a little, but I have no other symptoms as of yet. It is only the first day though...