Comments for Sanders BLOG in English

Comment on Nightblog by Sid

Sid — Fri, 03 Sep 2010 21:05:59 +0000

One of the delights of Dexo for me is watching sport on TV.
Good stress release.
Sid

Comment on Nightblog by Sander

Sander — Fri, 03 Sep 2010 07:12:59 +0000

@Sandy Banks First of all: thanks for all your nice and uplifting comments. About support @home, I can say that I get tons of that so I never have to complain about that. My loved ones are very understanding and they know how to keep me in the right track. This is a great relief….

Comment on Nightblog by Sandy Banks

Sandy Banks — Fri, 03 Sep 2010 03:55:22 +0000

I hope someone who has had this situation can offer you some ways to get relief, Sander. When my relative was on Dex we all steered clear because it wasn’t really about having a conversation but about the opinion being expressed… so I can relate to that part of it. Good luck!

Comment on Checkup by JERRY MILLER

JERRY MILLER — Fri, 27 Aug 2010 13:35:17 +0000

I WAS DIAGNOSED IN JAN 03. HAD 2 STEM CELL TRANSPLANTS AT MASS. GENERAL HOSPITAL BOSTON. I TAKE THALIDOMIDE AND GET ZOMETA INFUSION ONCE A MONTH. IVE BEEN IN REMISSION SINCE THE TRANSPLANTS. EACH CASE IS SO DIFFERENT. I HEAR PF PEOPLE THAT GO SO FAST, YET OTHERS LIKE MYSELF THAT GO ON FOR YEARS.I HAVE ALOT OF BACK PAIN AND TAKE OXYCODONE FOR IT AND I GET ALOT OF NEAUROPATHY FROM THE THALIDOMIDE BUT OTHER THAN THESE THINGS I LIVE A NORMAL LIFE. GOOD LUCK IT SOUNDS LIKE YOU ARE ONE OF THE LUCKY ONES WHO BENEFIT FROM YOUR REGIMENT QUITE WELL.

Comment on Hard times (complaining blog) by Sid

Sid — Fri, 27 Aug 2010 07:27:47 +0000

Hang on in there, think of the big picture.
I am on a Rev-lite trial. Dexamethasone 20mg, Lenalidomide 15mg to find if the lower dosage is still effective and reduces side effects. After 5 cycles it has reduced my IgG from 35 down to 10, that’s effective.
First 2 cycles were rough then things got better. From Lenalidomide mainly fatigue, tiredness, furry mouth, sore lip and feeling off the pace. Dexo problems like yours. No sleep, verbally agressive, opinionated.
Ask the medics if you can reduce down to what I am on, that may help. Or at least lower the dexo.
My dexo is now 4 days a month, makes a big difference.
Sid

Comment on Hard times (complaining blog) by Sandy Banks

Sandy Banks — Thu, 26 Aug 2010 16:47:14 +0000

This is a sucky disease and I wish I could do more to ease the burden of it for you, like Lynn. But this is the place to drop some of the burden by expressing your feelings and no one will judge you and hopefully those reading will take even a small moment to write and let you know they are thinking about you.

Sending you energy through the ‘net…

Comment on Hard times (complaining blog) by Lynn

Lynn — Thu, 26 Aug 2010 14:08:59 +0000

It definitely does. If I could shoulder half your misery for you, I truly would.

Comment on Nasty medical tests by Sandy Banks

Sandy Banks — Sat, 21 Aug 2010 18:21:16 +0000

Ouch! and bigger Ouch! I am having sympathetic pain for your procedure. It looks like the guy in the drawing is waiting for a massage… hope he gets one after this!

Comment on Action by Sandy Banks

Sandy Banks — Wed, 18 Aug 2010 19:18:43 +0000

Sounds like you have a number of ‘dates’ with an intense crowd… Lena, Dexa, who are certainly a wild pair. We’ll be intending that the medical team gets to the bottom of your number changes and find ways to keep you comfortable.

Comment on Blob by Sid

Sid — Sun, 15 Aug 2010 01:47:02 +0000

I have had “blobs” on my skull.
Soft tissue plasmacytoma.
Cyclophosphomide plus dexamethasone got rid of them then they came back.
Radiotherapy was next, that worked, they are gone.
Sid