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MDS diagnosis with DDX41 Germline and Somatic
Blood Cancers & Disorders | Last Active: May 6 9:50am | Replies (32)Comment receiving replies
Went today (Monday) for my bi-monthly visit to my hematologist along with routine bloodwork. My platelets went down from 92 to 67. My hemoglobin went down from 14.2 down to 12.2. My WBC went down from 1.9 to 1.6. My Neutrophils went down from 1.1 to 0.8.
He consulted with my MDS specialist. Their conclusion is that I got a cold while on vacation at Disneyworld sick the last day in bed with nausea, chills and diarrhea) (last Tuesday) and it is reasonable that my numbers went down some. They continue to agree that there will be fluctuations in these numbers, and that I shouldn’t spend time worrying about this latest lab result.
I go back to the MDS specialist on 4/7 to review my genetic profile results along with another set of routine bloodwork (I wonder if the numbers will trend back to their previous values?).
My hematologist concluded by saying that this shows that I can still continue to lead a normal life, and that getting a cold on vacation is not the end of the world.
Obviously, those that have been following my story know that I am a very anxious and worst-case scenario type of personality, always projecting out with negative extremes.
Can anyone help with their thoughts on all of this?
Replies to "Went today (Monday) for my bi-monthly visit to my hematologist along with routine bloodwork. My platelets..."
Hi @asarnesejr - given your anxiety, why don’t you ask for a sooner appointment and do another blood check sooner than April 7th?
Indeed, blood readings can fluctuate a lot - not only due to objective reasons, but also due to the test accuracy. I had some blood tests last year when my neutrophils doubled and halved if I were to believe those readings. Such “phantom” fluctuation might easily explain your latest results. However, I would say it is better to be safe than sorry.
What is your RBC and lymphocytes (the latter is obviously also on a low side)?
Have you also discussed the treatment plan with your MDS doctor? Whether the potential transplant donors have been identified? It might be not on your immediate radar, but you rather have all future steps articulated and aligned in advance.
Did you stay with the same doctor during your MDS history or also got an independent second opinion?
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Hi, @asarnesejr Oh dear, nothing like getting ill on your vacation. Well, if I can help you at all, it’s normal for blood values to change when there’s been an illness. The immune system kicks into defense mode when it senses an invader or to a reaction from foods, stress, environment, etc.. There can be large increases in white blood cell production while the illness is in full swing and then they can drop dramatically. It may take a couple weeks for everything to be back to normal.
Most people aren’t even aware of the fluctuations because this is all taking place, unnoticed, within the body.
Those of us who have blood cancers or conditions tend to have frequent labs which can leave us privy to these changes which would otherwise go unnoticed. As an example, for almost 2 months I had labs daily, sometimes twice daily while recovering from my bone marrow transplant. There would be dramatic swings just within a 24 hour period!
The important thing to note is that doctors look for trends. A one-off lab doesn’t usually trigger an alert to them as it would to us patients. The fact that you had both of your doctors conferring and coming to the same conclusion about your labs should give you a level of comfort. To this point you’ve been relatively stable so your doctors aren’t anticipating anything untoward. If they were, you’d be having follow up labs much sooner than your April 7 appointment.
That should be time enough for your immune system to recover and return your labs to normal. ☺️
I hope you’re feeling much improved! Did you have a good vacation otherwise?