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MDS Myelodysplastic syndromes

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  #1  
Old Sun May 24, 2015, 09:34 PM
Ann C Ann C is offline
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Join Date: Nov 2012
Location: Kingsville, Ontario
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Facial and neck welts

My husband was diagnosed with RAEB1 in April 2012 and is still watch and wait. In the last year he has had outbreaks of cold sores on his lip. Now they are occurring more frequently - once a month. This week he has broken out with welts on the face and neck. We have no idea if the welts outbreak is related to the MDS. We would appreciate any insight that someone may have on this. Thank-you kindly.
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Ann, wife of David age 74, dx RAEB-1 in April 2012, cytogenetics - good (no detected mutations), 6% blasts in bone marrow, hemoglobin - 12.1 WBC - 1.7; platelet count - 98; ANC - 0.5, watch and wait diagnosis
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  #2  
Old Sun May 24, 2015, 11:53 PM
Cheryl C Cheryl C is offline
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Hi Ann C

Have you tried L-Lysine for the cold sores? I can recommend this natural remedy which you should be able to access from health stores. If your husband can swallow or better still chew these tablets as soon as he feels soreness or tingling it should bring some quick relief and reduce the severity of the outbreak.

When my blasts were up at 10% I used to get hive-like welts on my torso and I've read other posts which report these for MDS so they could be symptomatic. Has he had a recent biopsy?
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Mon May 25, 2015, 10:27 AM
Marlene Marlene is offline
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In addition to the lysine, consider vitamin D3, zinc, c and the B vitamins. Lemon Balm is very helpful for cold sores. I've used the essential oil diluted in a fatty oil and applied it to John's shingles. If they are too problematic, ask your doctor about an anti-viral med like acyclovir (sp).

Regarding the welts.....John would get hives/welts when his platelets were low. Cold, friction and alcohol would bring them out. He would have to take Zyrtec about an hour before doing any exercise in the winter to avoid a break out of massive hives.

What advice does your doctor have at this point?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #4  
Old Mon May 25, 2015, 06:24 PM
rar rar is offline
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The standard treatment for herpes (cold sores, fever blisters, etc.) is acyclovir 800mg. (anti viral) I have been on this for almost a year with no ill effects.

Ray
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  #5  
Old Tue May 26, 2015, 10:49 PM
Ann C Ann C is offline
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Join Date: Nov 2012
Location: Kingsville, Ontario
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Thanks for the responses. I really appreciate marrow forums!
Today my husband saw his family doctor for the rash. He prescribed an antibiotic cream - Fucidin which contains fusodic acid. The condition may be folliculitis - infected hair follicules. My husband's low white blood count is probably the reason for the infection. Hopefully it will clear up quickly.
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Ann, wife of David age 74, dx RAEB-1 in April 2012, cytogenetics - good (no detected mutations), 6% blasts in bone marrow, hemoglobin - 12.1 WBC - 1.7; platelet count - 98; ANC - 0.5, watch and wait diagnosis
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