Rough First Week Home
But things are improving. GvHD and fatigue have been the main culprits.
The GvHD on the feet is much much better. My hands turned red, blistered, and are now peeling. Although tender, they at least don't hurt. My mouth is better, too. I'm finally able to eat some solid food, but I lost 7 pounds in a week. Talk about a diet.
I am tapering off the oral steroids. I'm on Medrol right now at 24 mg per day. If the GvHD continues to improve I'll taper down to 16 mg in a couple of days. Then we'll maintain at 16 mg per day until I see Hosing next.
The steroids help control GvHD along with Tacrolimus. If you come off oral steroids cold turkey, you can get a sudden flare up of GvHD, which is what happened after chemo a couple weeks ago. You can't adjust the Tacro blood stream levels very precisely, so steroids are the tool to use for immediate relief. Unfortunately, like everything else, steroids have their nasty down side, too. So I would like to get off them completely soon.
It sure is nice to be home for awhile.
posted by Max @ 8:26 PM
5 comments
5 Comments:
Max, good to know things are improving and now you can enjoy being home. H & A.
Glad you have been able to come home for a couple of weeks. We'd be over to see you, but know you need to keep the company down to a minimum.
Keep us updated on your progress when you get back to TX.
CC
Glad to hear you are home and able to eat some solid food Max.
Medrol does wonders for GvHD but is tough on muscle tissue.Try to keep your protein intake up to stay strong.Hoping they can taper down again.
Tyler
Max,
I am glad to hear you are home. It's always nice to sleep in your own bed.
Hang Tough.
John C
Max,
We had lunch with the Mattocks' for the first time in about 9 years and they told us of your struggle with Leukemia. Larry and I are praying for you and Linda and your family and will check your notes to keep up to date. When you get to where having new visitors is safe for you we'll come see you! In the meantime, know we're praying.
Larry and Gerry Sykora
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