Newly diagnosed MDS-IB2 and vidaza
Mom is 87, newly diagnosed MDS… initially she agreed to Vidaza but now she is looking for first hand information on its side effects.. She is happy to let this run its course but I would like her to take the vidaza injections until it either proves to not be of help to her or the side effects to be unpleasant….so at least one round of 5 injections.
She is having zero issues like fatigue or whatnot and has zero complaints. Her anemia was discovered after having afib post covid. Yesterday’s bloodwork showed platelets are 47, RBC 4.2, hemoglobin 12.3, hct 37.7, wbc 3.5
Bone marrow testing is 10% blasts
Molecular eval found mutations at DNMT3A, PHF6, and TET2.
Trying to learn as much as I can as quick as I can to help her with her decision-making.
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Blasts immature white blood cells waiting to develop into specialized cells. They’re generally only found inside the bone marrow though it’s not to say there won’t be a couple floated around in the blood stream. When they appear in the peripheral blood in greater volumes it can be an indication of a more serious issue.
A routine CBC would not break down the white blood cells into sufficient detail. For that, your mom will need a CBC with Differential.
With your mom’s blood cancer history, I’m expecting she’s been getting CBC’s with Differential. You can tell this by looking on previous lab results to see if there’s a reading for blasts, total WBC or Leukocytes, and Absolute Neutrophils.
How’s your mom been feeling?
Thanks for such a quick answer…
Mom is feeling great… zero issues
She is firm in her decision for no treatment and is scheduled fir her first blood draw since her diagnosis/decision on January 7
So is CBC with differential gonna be the route to a clinical change in her condition??
She had bloodwork the day of diagnosis and I see WBC of 3.5, absolute neutrophils of 1120.0 but I don’t see leukocytes at all…
Her diagnostic reports are from Mayo Clinic although the procedure was done locally in South Louisiana.
Looking at your following reply, along with this one, the numbers you posted were from a CBC with differential. That is likely the route that will be followed to detect clinical changes. Considering your mom is electing to forego any treatments I doubt there will be followup bone marrow biopsies or scans.
Happy to hear she’s doing great! Have a lovely holiday season!
Correct will consent to blood tests to monitor and will decide on whether she will consent to receiving blood products as her journey warrants ….
I think she should receive blood products as advised when needed but time will tell ….
Thank you for your kind words and I hope you and yours also have a wonderful holiday season…
Hope you continue to do well…..
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
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?
She said she would take the pediatric dose of Benadryl. Not sure she actually has but not complaining anymore so who knows....amirite???
She and I and her doctor did discuss whether she would take blood transfusions when it comes to that point and today I think she would....tomorrow ....meh....I'd hate to bet on it either way. Initially she was saying no to receiving blood products and I brought up the topic to her and then again with her and her doctor. I do believe she does understand that by the time it's recommended, she would be feeling run down and that this could help her continue to feel better. Keeping my fingers crossed!!
Thanks for your input..... one day at a time....
At this point, I get it…I get it! Let your mom call the plays as the game changes. You’re handling everything perfectly from my perspective. When my mom was 88 we went through similar…different disease but she declined treatment. I was 48 at the time and had known her to be a ‘take charge’, resilient woman who made wise choices for herself and her family. Who was I to deny her that right as she aged?
Of course, that shouldn’t stop us older ‘kids’ from maybe nudging in a different direction or being a sounding board. But at 88, your mom is comfortable with her decision and her terms. Have to respect that! ☺️