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Newly diagnosed MDS-IB2 and vidaza
Blood Cancers & Disorders | Last Active: May 27 1:59pm | Replies (19)Comment receiving replies
Mom is still feeling great…just had 88th birthday…. I find she’s a little pale some days but basically no complaints… good appetite… still maintaining the basics of daily life as before.
She has complained of itching and I called her doctor (without her knowledge of course) to see what I should recommend to her… she was thinking something topical but I know this is part of disease process… they recommended pediatric Benadryl and to come in for bloodwork…. So I told her I had called and said she would try the Benadryl but no to more bloodwork.
She is beginning to have more purpura spots and petechiae spots…. Yesterday she thought one was a pimple and attempted to “pop” it with a needle….gahhhhhh
Mom… please don’t open your skin on purpose!!!! I think she must understand this is disease progression but we don’t mention “progression” just that she has a blood disease.
She isn’t scheduled for next bloodwork until the end of June and remains firm on no treatment.
We are about 6 months out from MDS diagnosis but she’s been anemic since March 2019… no one investigated further as it was assumed to be related to Covid that lingered for two weeks.
Is it reasonable to assume the itching and spots are disease progression? I wouldn’t be alarmist with her, just need to have a feel for what the possibilities may be…
Thanks for any advice
Replies to "Mom is still feeling great…just had 88th birthday…. I find she’s a little pale some days..."
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Hi @rjperk633 Such a lovely update about your mom! Wishing her a belated 88th birthday. I’m glad she’s continuing to feel well, eating normally and really, all things considered, not having any complaints!
The itching and the spots could be signs of progression. As her platelet levels drop, she may be more susceptible to brusing and more ‘dots’. Look for signs such as nosebleeds, or prolonged bleeding from cuts. There’s not much to be done if she’s electing not to have treatment but she’s doing great so far!
Also, keep an eye on her with the Benadryl. It is a first generation anti-histamine that can actually cross the blood/brain barrier. Recent studies have recommended reduced usage with older patients for risk of dementia symptoms. At least with children’s benadryl, it’s liquid so less than the recommended dosage can be used.
Her next blood work will be informative. She’s happy and comfortable…that’s the main thing! We may have talked about this before, but would she consider platelet or blood transfusions if the levels became seriously low?