Jim Russel
Lord Nagafen Raider
- 509
- 50
Health Problems
- Thread starter Kuriin
- Start date
-
Guest, it's time once again for the massively important and exciting FoH Asshat Tournament!
Go here and give us your nominations!Who's been the biggest Asshat in the last year? Give us your worst ones!
Yeah I am doing 100 a day. Didn't seem to focus me at all but that might just be that I have nothing I can do right now. I don't get anxious no matter what, I am just not wired that way, but my wife has claimed I am a bit of a rage monster from time to time on it. Unlike me normally which is a pure peach!
Woefully Inept
Karazhan Raider
- 9,273
- 36,906
About to get my next dose of chemo soon as they bring the drug up from the pharmacy. After one dose of chemo last week I can definitely feel a difference in the shape of my tumor. It's pretty close to the skin so easily felt. The deeper side of it feels like it shrank some. Knock on wood this shit really is working and I'm not just imagining things.
Gravy
Bronze Squire
- 4,918
- 454
I hope it is working for you, too, Tred. Stay positive, I've heard that it helps.
I'm having trouble staying positive, my device went off twice this morning, and after a quick run to the cardiologist, it seems my atrial fibrillation is under control, but this time it was something called ventricular tachycardia. Basically, my heart is just short circuiting and they are trying to pinpoint a treatment.
I'm having trouble staying positive, my device went off twice this morning, and after a quick run to the cardiologist, it seems my atrial fibrillation is under control, but this time it was something called ventricular tachycardia. Basically, my heart is just short circuiting and they are trying to pinpoint a treatment.
Borzak
Bronze Baron of the Realm
- 25,463
- 33,218
A month ago I did 5 days of 1000mg a day tansfusion of prednisone (yes a 1,000) mixed in with some other stuff. My girlfriend of 19 years, my friends, and both parents said I talked more that week than I have int he last 25 years combined. They cut it off cold turkey with no taper and about a week later I couldn't move for about a week.
Xarpolis
Life's a Dream
- 14,655
- 16,345
It isn't prednisone, it's solumedrol. Same thing, basically. 1 gram. Every time my MS acts up, they have me go to the hospital for 3 days in a row to get a 1 gram solumedrol drip over the course of 5 hours. It always takes a lot longer than 5 hours (closer to 7 or 8 after waiting), but it works. It really "shocks" your system into working properly. The only down side is I have difficulty sleeping for a week or two after, there's just so much fucking steroid in my system. Another thing I noticed was when I do try to sleep, I randomly make noise when exhaling. Almost like I'm humming to myself, and that wakes me up quickly.
The 3 day treatment also makes you SUPER SUPER close to diabetic. From my memory, you're only supposed to have a blood sugar rating of about 100. After the first day, I'm around 150, day 2 is anywhere from 200-250 and day 3 I've been extremely close to 325. Those are seriously unsafe levels. Unfortunately, the steroids kill your taste. It makes everything (even your saliva) taste metallic. The ONLY way to feel "normal" is when eating something sweet, which is a double kick in the ass. I've found the best way around this is frozen yogurt. It tastes sweet, but isn't "sugar" sweet, so it doesn't mess with your levels.
Lastly, enjoy pissing every 10 minutes. I have to go CONSTANTLY when I'm doing the treatments. I don't even have much liquid, my body just creates urine to annoy me.
Xarpolis
Life's a Dream
- 14,655
- 16,345
Also, watch out for long term prednisone usage. It messes with your body in general. Like stripping calcium from your bones, enamel from your teeth. Can easily cause ulcers in your stomach. It also has the added effect of causing your body to no longer make its own steroids, so you become dependent upon the drug. Fortunately, this is typically only for people over 40mg a day useage. Unfortunately, you're at 100mg. I hope everything works out with you, but medicine really is a double edged sword.
Gravy
Bronze Squire
- 4,918
- 454
Borzak
Bronze Baron of the Realm
- 25,463
- 33,218
The label said prednosine and 250mg of potassium chloride. When I got it they had to call in each day and confirm it, because it wasn't the same they give for MS. 1g of it and 250 of the pottasium over 45 minutes for 5 days. Everywhere I looked mentioned the stuff you got for MS patients, but what I got definetly said prednisone because I looked at the label on the IV bag at the infusion center everyday to make sure it matched what I was supposed to get.
I am a diabetic which is why they put it off so long. Finally my Dr. said just push it and if you can keep it under 800 keep going or get as many days as you can. It never broke 250 because I got ahead of it.
What I had was related to MS but the big thing was the swelling of the brain and the things that went with it like impacting the optic nerve, extrexe dizziness and confusion. Basically for 4 months I walked around with a swollen brain.
Mine was a one time deal. Even my last MRI showed my previous lesions are nearly gone. It's like getting severe MS along with other stuff thrown in for free temporarily, then it's gone forever.
Let that be a lesson to you...shingles can kill you regardless of what someone says lol. I got what I had in response to an infection or virus, in my case I had shingles at the time. From what the Dr. gave me it's fatal in 8-10% of adults who get it but it's super rare in adults, I'm guessing most that die from it never knew what they had.
So I have an appointment on July 8th for my new stateside oncologist.
I called up yesterday to verify they had my German records and everything was ready to go. That was not the case ...
Basically they said since they have no tissue to work with they are going to basically start over from scratch with new PET/CT scans, new bloodwork, and find a good spot for a full biopsy .... not happy with that at all.
They were going to charge at least $1300 for the translation of the German records at a ridiculous rate of 30 cents a word. I told them no, I would get it translated and since we are starting over from scratch I am just going to have a friend do it for cheap.
My German doctors had made it sound like I have something aggressive and rare so I am a little concerned we aren't moving along quick enough. I think when I actually sit down with the doctor and it isn't just a phone conversation with the case manager who sounds like a 22 year old little girl we might make some progress.
On the prednisone it is just a stop gap solution since I wasn't going to start chemo until the first week or two of July. I am not planning on being on it full time. I am assuming after my doctor visit on Tuesday I will come off it.
I called up yesterday to verify they had my German records and everything was ready to go. That was not the case ...
Basically they said since they have no tissue to work with they are going to basically start over from scratch with new PET/CT scans, new bloodwork, and find a good spot for a full biopsy .... not happy with that at all.
They were going to charge at least $1300 for the translation of the German records at a ridiculous rate of 30 cents a word. I told them no, I would get it translated and since we are starting over from scratch I am just going to have a friend do it for cheap.
My German doctors had made it sound like I have something aggressive and rare so I am a little concerned we aren't moving along quick enough. I think when I actually sit down with the doctor and it isn't just a phone conversation with the case manager who sounds like a 22 year old little girl we might make some progress.
On the prednisone it is just a stop gap solution since I wasn't going to start chemo until the first week or two of July. I am not planning on being on it full time. I am assuming after my doctor visit on Tuesday I will come off it.
Woefully Inept
Karazhan Raider
- 9,273
- 36,906
I feel for you man. That wait between diagnosis and actual treatment is always an eternity. Good luck to you.
I think the worst part is that we don't have an "official" diagnosis. I mean we trust the Germans well enough but I need something concrete in English. There is nothing else we can do at this point but damn it's frustrating.
How did your port go? I am going that route myself. What is your treatment regimen?
Woefully Inept
Karazhan Raider
- 9,273
- 36,906
Port went in fine. Very sore and tender the first few days but it feels fine now. I have a dose of chemo every Wednesday for 3 weeks then I get 1 week off then back to 3 weeks of chemo again before another CT Scan. I can feel a difference in the tumor already. It definitely feels smaller. I'm a bit surprised to even be able to tell a difference this soon.
Sounds great. I don't have anything actually visible or that you can even palpate, I just have a bunch of lymph nodes all around that are infected.
Have you done a PET or just CT scans? This coming week will be my first PET scans, before all I did was CT scans.
Woefully Inept
Karazhan Raider
- 9,273
- 36,906
I always have CT scans done. For a little while there they switched me to a MRI because I am now allergic to the iv contrast for CT scans. I break out in hives. They tried dosing me with benadryl (the IV stuff rocks lol) and prednizone before the scan and that worked a couple times then the hives showed up again. They did switch me back to CT scans a little over a year ago with the contrast. Having a 10 minute CT scan beats the fuck out of a 90 minute MRI. I did have one PET scan done back in 2002'ish. I don't recall it showing them anything they couldn't see on a CT scan.