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 July 8th with my transplant team. Thank goodness they have not graduated me from stem cell transplant. 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 Benadryl 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 versus host disease (GVHD). I saw his intern, got a Z-Pak (azithromycin), and off I went. In the back of my mind I knew this was GVHD and figure more antibiotics would not hurt. Now I am running a low-grade fever, just under 100 degrees F (37.8 C). 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 Revlimid and dexamethasone was not longer working, my IgA numbers had tripled, and we 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 transplant doctor. She walked in and said OMG, what has happened to you? Two hours later I was lying in a hospital bed getting two units of blood. My hemoglobin was at 7.
Point of this long drawn out post, before my allogeneic stem cell transplant, 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 & itch one year after stem cell transplant
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 & itch one year after stem cell transplant
I've been wondering if anyone else has had skin problems. Mine started before my stem cell transplant and continues still. It's been 18 months. I tried staying off Tylenol, Flexeril (cyclobenzaprine) 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 Benadryl 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 Benadryl 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 & itch one year after stem cell transplant
Hi,
I was treated with thalidomide and dexamethasone in 2004. Upon discontinuing treatment, I got side effects which my my oncologist described in a letter as follows:
"lifelong complication from the thalidomide – sensory neuropathy in the 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 and feet as a result of the thalidomide and dexamethasone 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 materials on the palms of each my hands, approximately 1 inch (2.5 cm) across and about 1/4 inch in height. The ones on my feet are much larger and mostly concentrated on the balls 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 similar in results, so I'm thinking it's possible the side effects could be the same. No rash, but I might suggest you try eliminating foods from your diet one at a time, as you may have become more sensitive to certain food.
I found I have become sensitive to foods in the nightshade family, i.e., potatoes and tomatoes. The potatoes in particular cause me to break out in hive-like blisters, mostly on my scalp. After discontinuing eating potatoes, the problem pretty well went away. If I eat a lot of tomato products I get a very slight return of the problem.
Best regards.
I was treated with thalidomide and dexamethasone in 2004. Upon discontinuing treatment, I got side effects which my my oncologist described in a letter as follows:
"lifelong complication from the thalidomide – sensory neuropathy in the 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 and feet as a result of the thalidomide and dexamethasone 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 materials on the palms of each my hands, approximately 1 inch (2.5 cm) across and about 1/4 inch in height. The ones on my feet are much larger and mostly concentrated on the balls 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 similar in results, so I'm thinking it's possible the side effects could be the same. No rash, but I might suggest you try eliminating foods from your diet one at a time, as you may have become more sensitive to certain food.
I found I have become sensitive to foods in the nightshade family, i.e., potatoes and tomatoes. The potatoes in particular cause me to break out in hive-like blisters, mostly on my scalp. After discontinuing eating potatoes, the problem pretty well went away. If I eat a lot of tomato products I get a very slight return of the problem.
Best regards.
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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!
Re: Rash & itch one year after stem cell transplant
Hello all,
This is a few years later than many of these posts. I had tandem stem cell transplant 2 years ago. In stringent complete remission since first transplant. In the last month, I've developed a rash from my neck upward. My face is quite red with pimples that are very sore to the touch. At times small white spots appear and I'm able to wipe them off like a teenagers pimples. I'm 60 now so I'm quite removed from such issues, or so I thought.
I've tried Benadryl (diphenhydramine), various creams, peroxide and sunscreen. They seem to be drying up a bit today but my face looks awful right now. Flaky and dry with red splots on either side of my nose.
My myeloma specialist took me off Kyprolis (carfilzomib) and dex and left me on only Revlimid. This has been only a week so far. I've been feeling run down with no energy at all. Very unlike me. Always on the go, but the last month or more I've hit a wall and now the face rash.
Not sure if anyone has an idea, but I'm all ears.
Thank you for all the above posts and encouragement. We will win this multiple myeloma battle with the help of good researchers and doctors, of this I am certain. We just need to do our part and live long enough to benefit from the cure. Hang in there fellow multiple myeloma patients.
This is a few years later than many of these posts. I had tandem stem cell transplant 2 years ago. In stringent complete remission since first transplant. In the last month, I've developed a rash from my neck upward. My face is quite red with pimples that are very sore to the touch. At times small white spots appear and I'm able to wipe them off like a teenagers pimples. I'm 60 now so I'm quite removed from such issues, or so I thought.
I've tried Benadryl (diphenhydramine), various creams, peroxide and sunscreen. They seem to be drying up a bit today but my face looks awful right now. Flaky and dry with red splots on either side of my nose.
My myeloma specialist took me off Kyprolis (carfilzomib) and dex and left me on only Revlimid. This has been only a week so far. I've been feeling run down with no energy at all. Very unlike me. Always on the go, but the last month or more I've hit a wall and now the face rash.
Not sure if anyone has an idea, but I'm all ears.
Thank you for all the above posts and encouragement. We will win this multiple myeloma battle with the help of good researchers and doctors, of this I am certain. We just need to do our part and live long enough to benefit from the cure. Hang in there fellow multiple myeloma patients.
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tina0000
Re: Rash & itch one year after stem cell transplant
My mother had a stem cell transplant back in July and has been covered in a rash ever since. She feels like she is losing her mind. The rash gets really red and then her skin falls off. We have been to several different dermatologist because this is no way to live. We finally found one that saw how she was suffering and wanted to make her a priority. He said he was going to treat her as if she was his own mother.
He at first thought she had graft versus host disease and did 2 different biopsies to test. We did extensive blood work and chest x-ray. The pathology report came back negative for the GVHD and that she is having an allergic reaction to one of the medications she is on. Unfortunately, they can't tell you which, so we will have to do an elimination trial. She is very optimistic now and hopeful that there will be some resolution.
He at first thought she had graft versus host disease and did 2 different biopsies to test. We did extensive blood work and chest x-ray. The pathology report came back negative for the GVHD and that she is having an allergic reaction to one of the medications she is on. Unfortunately, they can't tell you which, so we will have to do an elimination trial. She is very optimistic now and hopeful that there will be some resolution.
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AnnieMac81
17 posts
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