[ThunderPoit]

I should clarify, I have only been on Prednisone for a week. My prescription bottle says 2 weeks and then taper down after that as recommended by the dr. My follow up appt is on the 10th, so its not that big of a wait.

[Mugge]

Originally Posted by Schnauzer ThunderPoit, Prednisone is the worst drug ever. When I first was diagnosed with leukemia and they put me on it for 29 days taking 100mg a day, that really sucked! Then when I stopped they just dropped me from 100mg to 0mg, that really sucked! I fucking hate Prednisone so much, I never want to take that shit again.

Leukemia?! I hope you are allright?

Originally Posted by zippy The reason dairy is a problem is that it is notoriously hard to digest the proteins. And things that don't get broken down properly tend to be treated as unfriendly by the digestive system - or so I've read. As for gluten - including all wheat, barley and oat products - I think this one sometimes is a bit assuming. I know that there are many people who are allergic, and I know there is a lot of anecdotal evidence at least that shows gluten to be a problem for things like autism, and supposedly crohns and colitis. What I don't know is whether someone who has say colitis, but is definitely not allergic to gluten, should really still have a problem with it. And in my experience, the recommendations to eliminate these things come mostly from holistic practitioners and other sufferers, and not from your standard medical doctors. Personally, I think there is an alternative to eliminating them that seems reasonable: enzyme therapy. This would entail taking some supplemental digestive enzymes before you eat that would help to break down the food and allow it to be digested properly. That way you can still eat the things you like, and hopefully not suffer any consequences. I'm debating trying this method at some point.

I see, that makes a lot of sense. It just feels so weird compared to my own situation, as I always resort to milk, yoghurt and white wheat bread when I can't stomach anything else.

[Schnauzer]

Originally Posted by zippy WTF?? Dropping from 100 all the way to 0 on prednisone sounds like absolute hell - and terribly irresponsible of your doctor. Damn. I went from 40 to 20 to 10 and will now go to 5 then 4,3,2,1. Everything I've read about Prednisone stresses how important it is to gradually wean off - the longer you are on it, the slower the weaning. 29 days at 100 Mg seems sufficient to require some kind of taper.

Yeah, I thought I should taper off as well (They really don't give a shit about your side effects- they just want kill cancer) But I guess they don't do it because I have a calendar of drugs and they stick to it pretty strictly. He said it would take a week to get over the "withdraws" from it, but dam, the first four days were hell. Then it started to get better.

Originally Posted by Mugge Leukemia?! I hope you are allright?

Well. Chemo is hell. I was diagnosed just about over two months ago.

[Brad]

Since we're still talking about prednisone, I guess I'll throw in my 2¢.

Back before I had endoscopic surgery on my sinuses, I was off-and-on a prednisone regimen for about a year, at times as high as 60 mg/day, tapering down to 5 mg/day. It certainly increased my appetite, but I had no other noticeable negative side-effects at the time. Yes, there are long-term usage risks such as osteoporosis, but in the short-term, it was absolutely worth it to me.

In my case, I had severe sinus polyps (associated with a condition called Samter's Triad) that were completely filling and blocking my nasal passages such that I could only breathe through my mouth. We tried a few medicinal alternatives including aspirin desensitization and pulsed prednisone doses before resorting to surgery.

That said, I'm glad to see you got a diagnosis and a path to treatment, ThunderPoit.

[Brad]

Originally Posted by ThunderPoit Also, as if the side effects weren't bad enough, the pills taste like crap and leave a horrid aftertaste

I had three different types (brands?) of prednisone pills over my course of usage and all of them tasted like horrid chalky crap. Just be sure to take time to brush your teeth and tongue and swish with mouthwash afterwards.

[Schnauzer]

Originally Posted by ThunderPoit Also, as if the side effects weren't bad enough, the pills taste like crap and leave a horrid aftertaste

OH. DEAR. GOD. Tell me about it, that stuff tastes like shit! I found that following it with some apple sauce really helped take the taste away.

[Capella]

I've been suffering some GI issues myself lately. I finally went to a GI doctor, who said "it definitely isn't just lactose intolerance" and checked me for gluten intolerance. It wasn't celiac or gluten (biopsies were negative), but he saw some signs that indicates I have IBS. I haven't been given a full-time set of drugs, just Symax to take to counteract the occasional flareups, but I'm worried that that won't be sufficient to manage it. In the meantime, I can't have any more tests to narrow down exactly what it is, because student health insurance doesn't pay for specialized testing, so I need to save up to pay out-of-pocket.

I agree about drugs often being worse than the illness; my mother has autoimmune conditions as well as epilepsy, and some days, the drug cocktails make her feel crappier than the conditions themselves do.

[ThunderPoit]

lol, i found out something kinda neat about the prednisone, it makes me immune to onions :P

[Windswept]

Originally Posted by Schnauzer . Well. Chemo is hell. I was diagnosed just about over two months ago.

Schnauzer, I am so *very* sorry to hear about this.

How long does the chemotherapy process last? Has it made you feel pretty ill, or has it not been too bad?

[Schnauzer]

Originally Posted by Windswept Schnauzer, I am so *very* sorry to hear about this. How long does the chemotherapy process last? Has it made you feel pretty ill, or has it not been too bad?

I believe it is somewhere in the ballpark of three and half years, but most of that is just what they call the maintenance phase (Once a month Chemo with oral drugs) Right now I just finished the first month and it was really intense. If I had to list all the drugs I was given it would at least be a good 20 or so things. The worst part is the vin christine. After three doses of that my legs locked up and a couldn't walk for two weeks, after a shit load of physical therapy I was able to start to walk again. One day I was able to walk perfectly and I felt so great like I wasn't even sick. But then they gave me more vin christine and took me off the prednisone and I fucking crashed. I had to go in for a bone marrow bio the next day and I was in so much pain. Anyways, today I start the next phase of chemo and it looks like it is going to be a bitch, four strait days of "treatment" to start it off. My legs still don't fucking work and I am in wheel chair now. Sorry for the rant......

[Mac+]

TP & zippy - I'm sorry to hear your news, but damn, Schnauzer, that is really intense. Mate, I seriously hope you manage to beat that shit. I don't know what else to say, but my thoughts are with you.

[AWR]

Schnauzer, sorry to hear that news. Sounds like you're getting some pretty solid care (and toxic treatment!). All the best. AWR

[zippy]

Holy crap Schnauzer, that does sound like hell. I'm sorry to hear about your diagnosis. I'd have to admit that one thing that has kept my condition in perspective has been a friend who was diagnosed with breast cancer about the same time I found out about my colitis. If I ever started feeling too sorry for myself, I'd just have to remember her. Colitis can definitely affect quality of life, but at least it doesn't threaten my life.

I wish you the best of luck in fighting off the leukemia. And as one of (it would seem) the few members here who still has faith , I'll drop some prayers for you (and Thuderpoit - you too).

I know it may seem hard some times, but keep your chin up, you can beat this.

[ThunderPoit]

ummm, zippy? when did your title get changed to "King of the rotting colon"?

[zippy]

Originally Posted by ThunderPoit ummm, zippy? when did your title get changed to "King of the rotting colon"?

About 3 weeks ago actually.

[thegeriatric]

ThunderPoit, Zippy & Schnauzer. My best wishes go out to you all.

[Windswept]

Originally Posted by Schnauzer I believe it is somewhere in the ballpark of three and half years, but most of that is just what they call the maintenance phase (Once a month Chemo with oral drugs) Right now I just finished the first month and it was really intense. If I had to list all the drugs I was given it would at least be a good 20 or so things. The worst part is the vin christine. After three doses of that my legs locked up and a couldn't walk for two weeks, after a shit load of physical therapy I was able to start to walk again. One day I was able to walk perfectly and I felt so great like I wasn't even sick. But then they gave me more vin christine and took me off the prednisone and I fucking crashed. I had to go in for a bone marrow bio the next day and I was in so much pain. Anyways, today I start the next phase of chemo and it looks like it is going to be a bitch, four strait days of "treatment" to start it off. My legs still don't fucking work and I am in wheel chair now. Sorry for the rant......

I am just so shocked to hear about all this, Schnauzer. I feel absolutely terrible for what you are going through. The fact that you are only 18 should help you fight this off, I would imagine, and should help you recover from the harsh regimens they are putting you through.

I hope you have confidence in your doctors and feel that you are getting the best care possible. I'm afraid I have a fairly ambivalent view of the medical/pharmaceutical establishment. If you have a chance, I hope you will read up on any natural/herbal and alternative treatments that might be available.

I know nothing about any of this, but I feel there must be something. I used to see a tv commercial about cancer treatment centers that seemed to use a combination of medical and alternative treatments, apparently with good results. Of course, that was a commercial, but still, there must be some truth in it.

I do wish you the very best with all this. I hope you will try to keep a positive outlook, and keep in mind that many hundreds of thousands of people are in remission all across the globe. If they can be, so can you. Right?

It may seem silly to mention this, but many people use visualization techniques to focus the powers of the mind on healing. It does seem to work in many cases. I don't know if you are familiar with any of that, but it might be worth looking into. A big hug to you, Schnauzer.

[Kickaha]

Holy crap, I just wandered in here.

Guys... sheesh. All three of you... my best to you, and fight that crap back.

[Schnauzer]

Originally Posted by AWR Schnauzer, sorry to hear that news. Sounds like you're getting some pretty solid care (and toxic treatment!). All the best. AWR

Thanks, haha, yeah the stuff they give me is pretty messed up... one nurse that was pregnant wasn't allowed to give me chemo because of the toxic properties.

Originally Posted by zippy Holy crap Schnauzer, that does sound like hell. I'm sorry to hear about your diagnosis. .... I wish you the best of luck in fighting off the leukemia. And as one of (it would seem) the few members here who still has faith , I'll drop some prayers for you (and Thuderpoit - you too). I know it may seem hard some times, but keep your chin up, you can beat this.

Thanks, the mental part has been one of the hardest, I have been pretty depressed lately, but I do look for the positives.

Originally Posted by Mac+ Schnauzer, that is really intense. Mate, I seriously hope you manage to beat that shit. I don't know what else to say, but my thoughts are with you.

Thanks

Originally Posted by thegeriatric ThunderPoit, Zippy & Schnauzer. My best wishes go out to you all.

Thank you

Originally Posted by Windswept The fact that you are only 18 should help you fight this off, I would imagine, and should help you recover from the harsh regimens they are putting you through.

Yeah, thats why they have put me on such an intense course..... What sucks the most is that I was all set to go off to college and start living on my own and now and stuck at home/hos in bed most of the day. The lack of freedom and now be treated like a five year old had really taken a toll on me. I just feel trapped sometimes.

Originally Posted by Windswept I hope you have confidence in your doctors and feel that you are getting the best care possible. I'm afraid I have a fairly ambivalent view of the medical/pharmaceutical establishment. If you have a chance, I hope you will read up on any natural/herbal and alternative treatments that might be available.

Yeah, they basically are really really really good at killing the cancer using the .50 cals of chemos, but the doctors seems to overlook the side effects and just say "it will get better" and throw me more pain drugs.......... The loss of the use of my legs is the most frustrating.

Originally Posted by Windswept It may seem silly to mention this, but many people use visualization techniques to focus the powers of the mind on healing. It does seem to work in many cases. I don't know if you are familiar with any of that, but it might be worth looking into. A big hug to you, Schnauzer.

Yeah, I have actually.... I tried doing it the first few days in the hos... maybe I should start again Anyways thanks Windswept for all the care and support. *Hugs back*

[Mugge]

Broccoli sprouts should also be very good. They taste better than broccoli and contains some stuff that helps fight cancer.

[Schnauzer]

I just thought I would update you guys to where I have been this past month. I was in the hospital for about 3 weeks. They did lots of scans of my body trying to search for what was wrong with my legs. They found lumps in my legs, and then they poked them with needles and tried to drain them and see what was in them. I was also running fever like every 6 hours. Then they put me on like all these IV antibiotics but nothing ever grew in the stuff they took from my legs. Then they did a bronc and tried to see what was in my lungs. But nothing grew from that, so they thought it would be a good idea to stick a tube in each side of my chest to drain fluid from my lungs. That sucked and hurt very bad. Then they couldn't find anything wrong with me and loaded me up with chemo.... and now I am at home just taking the side effects from that day by day.

[AWR]

Sorry about all that shit, Schnauzer.

That sounds terrible.

Hoping that you have some better news soon. All the best, AWR

[zippy]

That sucks man. I'm sorry to hear that you are having such problems. Hopefully the chemo will wipe it out, but it's a tough road to have to travel.

Keep us posted, and let us know when you need a good cheering up - I'm sure Drew would volunteer to toss a few back and write poems for you or something.

[alcimedes]

So they don't know what's going on? Yikes. That's always disconcerting, but your youth is your big advantage.

I'll pour an extra one for you tonight.

[Schnauzer]

Thanks guys. Yeah it is fucking pissing me off. I have cancer they know that, but they don't know what is causing all this other stuff. They took me off chemo for a week to try and find out, but they failed. Next week I have four days in a row of chemo as pay back. HAHA. Oh well, bring it on!!!!!

[Windswept]

Schnauzer, I think about you often and wonder how you are doing. I guess it's good that no infections are showing up, so that your body doesn't have more stuff to fight.

If they are loading you up with antibiotics, I think you should be eating yogurt that has active cultures in it to keep the good bacteria alive in your intestinal tract. I know they advertise Activia yogurt for keeping one's system in balance, but I don't know if there are other brands with active cultures that might be better.

I do pray for you, though I'm not a religious person. I send the odd prayer up whenever I think of you, and hope that your youth will get you through these terrible times. If this had to happen in your life, better that it happen now when you are at a high point of youthful strength and physical recuperative possibilities.

Try not to dwell on how terrible this all is, but instead make a list of all the many things that you have to be grateful for. Then read the list, or go over it from memory, at least five times per day. Concentrating on the positive should work to keep your hope up, and, in turn, your hope should help you heal.

Find humorous stuff to entertain yourself. A website, book, or whatever, that makes you laugh will help you stay positive. I hope this doesn't sound preachy; but I've read so often how positive states of mind can contribute to healing the body.

Again, all these weeks I have been thinking about you and wishing you well. I feel certain in my heart that you will get through this and come out in good shape in the course of time.

[Mac+]

Schnauzer - that is some... I don't know how to say it - just reading it gives me the chills. I hope they damn well find out what is going on so you can damn well beat it and show it who is boss. I'm thinking of you mate and, like Carol, will be saying some prayers for you. Keep fighting the good fight.

[Schnauzer]

(please bear with my spelling)well........ I have been in the house now for 5 months. My intestine and stomach got infected and huge holes were put in them. They didn't think I would make it, but here i am. i cant eat and i get food in a tube. just update i am not dead.

[Kickaha]

Originally Posted by Schnauzer (please bare with my spelling)well........ I have been in the hos now for 5 months now. My intestin and stumach got infected and huge holes were put in them. They didnt think I would make it, but here i am. i cant eat and i get food in a tube. just update i am not dead.

!!!!!

Dude.

Um... good to see you. Wow.

[Dorian Gray]

Way to go, Schnauzer! It must be pure hell at times, but hang in there!