Post CK swelling-need support/info

[Mickey]

Hi Lorenzo, I`m about to go on a short course of steriods for a week 25mg two times a day . I see you took some and was wondering if you meant that you became constipated? Any othe rside affects? Thanks Mickey

[Tumbleweed]

Speaking of Led Zep, bring your favourite music to play while being zapped. Talking Heads would be good. You can listen to your own choice while encountering the alien. I was spared Christmas muzak as I had my own jazz CDs to listen to. CK is very quiet!

Oh, and eat lots and lots of vegetables and prunes, those steroids set me back for a good while because I didn't know!

Ciao, Lorenzo

Thanks for the advice, Lorenzo! I appreciate it and will certainly follow your recommendations.

Best,
Tumbleweed

[Lorenzo]

HI Tumbleweed and Mickey,

Indeed, it made constipated like nothing before in my life! Now, maybe I'm special, I don't know, but I know that I didn't have normality back for about two weeks. YIKES! I never forget it. Also, I ate like a horse if I didn't curb the hunger by ignoring it. Food went in, but stopped en route. Not good. Boy, that was NO FUN! So, eat light, greens, juices, lots of water and take anythign to help move things along.

Sleeping and lots of energy was another problem for me. I had more energy then then I have ever had! Shopping, sightseeing, touring, driving, visiting places, walking... did it all, and still didn't sleep!  I must have had a realy bad reaction to steroids. Oh boy. I'd naver taken them before that, in fact, I never took anything more than a few tylenols. It was all new to me!

This said, I know some people didn't have the problem. But, prevention is MUCH preferable than trying to cure it.

  caio, Lorenzo

[Sheryl]

Mickey - Were you prescribed something other than Decadron because 25 mg twice a day is an extremely high dose???  Maybe you meant 2.5 mg???
Sheryl

[Tumbleweed]

Hi, Lorenzo:

Thanks for the advice and warnings about steroids. I, too, very rarely take any drugs. It's not uncommon for me to have only one or two doses of ibuprofen in the span of a year or two, if that. I'm very sensitive to drugs, so I'll be preparing myself for the Decadron side effects. Great to know about them before hand so I know what to expect and how to counter it. BTW, psyllium seed powder mixed with water or juice is a great laxative, as long as you drink enough fluids (if you don't, it'll turn to cement in your intestines and make things even more plugged up!).

Best wishes,
Tumbleweed

[Lorenzo]

HI Tumbleweed,

Thanks for the plug, I mean, advice! I must take note of that, sounds interesting. I drink lots of water, which by itself helps prevent the problem normally anyway. Those pesky steroids though... Oh boy! Senna did nothing for me at the time, so gave up on that. On the plus side of steroids, I never felt so energetic! lol  PErfect for walking around and shopping.

Other effects I had: After each session I used to come out with 'Onion Bag Face' the mask pattern being imprinted on my face from 45 minutes of pressure. Used to vanish after about 30 minutes. Also, I used to turn an alarming shade of red, and then a moment later look like a blanched almond. Weird. Tinnitus used to get louder too after each session and then calm down after a while. So those and the steroids / food dilemma were about all I can remember in terms of effects.

Psyllium eh? Off to google that now. Thanks!

Ciao, Lorenzo

[Tumbleweed]

Thanks for relaying your post-CK experience, Lorenzo. That helps me mentally prepare for treatment and not get freaked out by these things if they also happen to me.

I believe psyllium is the main ingredient in Metamucil. Unlike senna, which "chemically" prompts peristalsis, psyllium prompts peristalsis mechanically -- by expanding into a mucillagenous mass when combined with water, and acting like a gentle broom for the intestines. It doesn't cause cramping. It's very gentle.

If I remember correctly, you mix about a teaspoon of the powder with an 8 oz glass of water or juice and drink it down quickly (before the psyllium settles in the glass). Then follow that with another 8 oz glass of fluids. Repeat as necessary. You can do a few psyllium drinks per day if needed. Just make sure you drink tons of fluids!

Best,
Tumbleweed

[Lorenzo]

...and thus turn into a cement mixer!  lol  Sounds good. Must see if I can get that stuff on this side of the Atlantic. Thanks for advice!!  When you say tons of water, is that a one litre bottle, two litres, drown in it? 

Sounds interesting. THANKS! 

Ciao

Lorenzo

[Tumbleweed]

Hi, Lorenzo:

Sorry for my delay in replying; clicking on the "Show new replies to your posts" link doesn't always show all replies, so I had no idea you had asked me a followup question until I wandered back to this topic. Perhaps the moderator could look into this ongoing technical problem with the Forum.

The answer to your question about psyllium is that you should drink at least a pint of liquid for each level teaspoon of psyllium powder you consume. That'll make it expand (like rice does when in water) and become gellatinous. Drinking less than a pint per teaspoon of powder will constipate even more. Drinking more than a pint is okay, but there's no need to go overboard.

I hope that helps.

Best wishes,
Tumbleweed

[Lorenzo]

Great, I'm a great water drinker anyway, so that will be like normal to me. thanks!

Ciao, Lorenzo

[mindyandy]

oh steroids....I was on 1mg then bumped up to 2mg....I ATE EVERYTHING!!!!!!!  I was always hungry and I ate whatever was in front of me. I didnt have any plugging problems.
I did however gain 10lbs in 2 weeks....

[Lorenzo]

Weird, the entire Ck period made me loose 10lbs, which I then proceeded to put back on post-CK. I guess I tried too many good restaurants in CA!  lol  No plug mindyandy? I knew I should have eaten more greens!!!

Ciao, Lorenzo

[jb]

Mindy,
I hope your swelling symptoms resolved since it cost you 10 lbs  .  I've been off Decadron for several weeks and no more headaches (or plugging).  So maybe the worst is over, knock on wood.  I'm at 10 mos. post-CK, but hopefully yours won't take that long.

[oregon]

to ppearl, I would very much like to contact you! I live in Portland, Maine and am interested in trying CK at Beth Israel for residual tumor post surgery which sounds like the path you took. My posting name is Oregon, jope to hear from you.

[ppearl214]

to ppearl, I would very much like to contact you! I live in Portland, Maine and am interested in trying CK at Beth Israel for residual tumor post surgery which sounds like the path you took. My posting name is Oregon, jope to hear from you.

Hi Oregon and welcome. You have a PM/email from me.....glad to answer any questions I can.

Phyl