Good Morning All,
I receive my treatment and most all directives from my doctors at MD Anderson. I had finally been given the approval to go home and stay in-between appointments...woohoo!!! Finally left like I would have some normalcy in my life again.
This all started two weeks prior to my next appointment, which was scheduled July 7th with my Myeloma doctor and 8th with my transplant team.....thank goodness they have not graduated me from SCT. It's a frightening thought.
My symptoms were, sore throat, very, very sore throat and it was hard for me to swallow. No fever at this time. Then the nasal drainage and overall feeling of poor health and little tiny itchy spots on my chest and back. So took Benedryll that evening. When I had awoke, things had progressively gotten worse, I think this is Sunday. Sunday evening I called my PCP (I never know who to call when I am in town. My oncologist told the nurse to tell me to get OTC meds. My oncologist usually refers me onto my primary, who always tries his best, but honestly he is not familiar with Graft vs. Host Disease. I saw his intern got a z-pak and off I went. In the back of my mind I knew this was GVHD and figure more anti-biotics would not hurt. Now I am running a low-grade fever, just under 100 degrees. But that morning my face literally blew up. My lips were so huge as they began to heal, they were all split open and looked nasty. I also had this rash inside my mouth, which made it difficult to eat or drink. My pupils were dilated and non-reactive, I was a true mess.
Finally it's time for me to heard to Houston, it's around 4 hours, but a beautiful drive. However it was the hardest drive I've taken EVER! My body wanted to sleep. I had to focus on keeping my eyes open every single moment. Finally, home at my son's, I crash for the evening, get up and see my myeloma doctor, who skimmed through my case (he was in a hurry he was going on vacation) He had mentioned the rev/dex was not longer working, my IgA numbers had tripled and were would discuss the next step next week. He never got back to me, why, BECAUSE HE WAS NO VACATION! As it turns out I was too sick to continue with chemo.
Friday is when I saw my SCT doctor, she walked in and said OMG what has happened to you.?? Two hours later I was laying in a hospital bed getting two units of blood. My hemaglobin was at 7.
Point of this long drawn out post, before my Allogeneic SCT the concern over GVHD is so they said to catch it early. So now that it is gone, I take the sun seriously. I look a little like a freak, with my quirky hat, sun glasses, long sleeved shirt and dodging the sun. I am also getting my windows tinted.
Stay cool,
Tricia
Forums
Re: Rash and itch one year after sct
I just had a Stem Cell transplant on January 30, 2011. I too itch, no rash though and not too bad but I have my moments. I am dealing with it. Will bring to my doc's attention next visit
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djkvegas - Name: David Keegan
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: September 3 2010
- Age at diagnosis: 54
Re: Rash and itch one year after sct
I've been wondering if anyone else has had skin problems. Mine started before ST and continues still. It's been 18 months. I tried staying off Tylenol, Flexerol and the citrus fruits and tomatoes. But, mostly it's just a mystery what causes it.
Mine are patchy, eczema type spots, usually around 1/2 to one inch across, pinkish and ITCHY!
They are on my arms and legs only.
I use over-the-counter 1% hydrocortisone cream and Eucerin Aquaphor on top to the cream. Aquaphor is especially good and helps heal the itchy patches. I also smear it on the affected places before I shower. I really limit showering too. I also take Benedryl at night.
I' d appreciate any other tips.
Mine are patchy, eczema type spots, usually around 1/2 to one inch across, pinkish and ITCHY!
They are on my arms and legs only.
I use over-the-counter 1% hydrocortisone cream and Eucerin Aquaphor on top to the cream. Aquaphor is especially good and helps heal the itchy patches. I also smear it on the affected places before I shower. I really limit showering too. I also take Benedryl at night.
I' d appreciate any other tips.
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Rash and itch one year after sct
Hi I was treated with Thalidomide / Dex in 2004 and upon discontinueing treatment -
I'll quote a letter my Oncologist wrote- - -** Mr.- was treated extensively with Thalid. / Dex & had good results. unfortunately he developed lifelong complication from the Thalidmide-sensory neurophy in his feet, reducing sensation in his feet on both sides making it difficult for him to walk. He also developed lasting bullous changes in the skin of his hands & feet as a result of the Dex / Thalodimide treatment .** - - - THE Bullous changes he is referring to are bulges in the palms of my hands and soles of my feet they are made up of 2 spots of fatty materals on the palms of each my hands approvimately 1 in. across & about 1/4 in. in height , the ones on my feet are much larger and mostly consentrated on the ball of my feet extending up behind my toes , I realize I was treated with a slightly different chemical than you but I understand they are simular i n results so I'm thinking its possible the side effects could be the same. No Rash but I might suggest you try elemination foods from your diet one at a ttime as you may have become more sensitive to certain food , I found I have become sensitive to foods in the nightshade family -ie Potatoes & Tomatoes - the Potatoes in particular cause me to break out in hive like blisters mostly on my scalp , after discontuneing eating potatoes the problem pretty well went away ,if I eat a Lot of tomatoe product I get a very slight return of the problem . best regards -
I am new at this site & hope you folks can give me a little slack till I get accustomed to how it functions - I was actually trying to respond to jubyanns comment-
I'll quote a letter my Oncologist wrote- - -** Mr.- was treated extensively with Thalid. / Dex & had good results. unfortunately he developed lifelong complication from the Thalidmide-sensory neurophy in his feet, reducing sensation in his feet on both sides making it difficult for him to walk. He also developed lasting bullous changes in the skin of his hands & feet as a result of the Dex / Thalodimide treatment .** - - - THE Bullous changes he is referring to are bulges in the palms of my hands and soles of my feet they are made up of 2 spots of fatty materals on the palms of each my hands approvimately 1 in. across & about 1/4 in. in height , the ones on my feet are much larger and mostly consentrated on the ball of my feet extending up behind my toes , I realize I was treated with a slightly different chemical than you but I understand they are simular i n results so I'm thinking its possible the side effects could be the same. No Rash but I might suggest you try elemination foods from your diet one at a ttime as you may have become more sensitive to certain food , I found I have become sensitive to foods in the nightshade family -ie Potatoes & Tomatoes - the Potatoes in particular cause me to break out in hive like blisters mostly on my scalp , after discontuneing eating potatoes the problem pretty well went away ,if I eat a Lot of tomatoe product I get a very slight return of the problem . best regards -
I am new at this site & hope you folks can give me a little slack till I get accustomed to how it functions - I was actually trying to respond to jubyanns comment-
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Nipon Ginko - Name: NIPON GINKO
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Rash and itch one year after sct
A little update from here: John dermatologist gave up to find out what caused his troubles. BUT they have been solved with antihistamines. So far so good!
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