Hi @twohorsepony and thanks for the update as it’s good to hear how you’re getting on.
No one here can give you medical advice or tell you what your numbers mean, but from what your own team has already said it sounds, in context, reassuring. A cold really can knock counts around temporarily, and the fact that your haematologist and Myelodysplastic syndrome ('MDS') specialist are actively consulting each other and keeping a close eye is a good thing. And the 7th isn’t far away.
Living with the ‘waiting and watching’ aspect is understandably unnerving. @paulstass mentioned early on how much working with a cancer psychotherapist helped him with exactly this, not because anything was wrong, but because having some tools to manage the uncertainty makes it easier to sit with. Might it be worth asking your team if they can point you to someone, if you think it would be helpful? I know that I found it incredibly helpful during my own treatment.
As you’re based in the US our Support Line is probably less convenient for you, and there are likely to be differences in the healthcare system, but if you’d ever like to talk things through with someone from our team, you’re very welcome to reach us by email at support@bloodcancer.org.uk.
Take care, and keep us updated,
Ceri - Blood Cancer UK Support Services
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Went today (April 7th) to my Myelodysplastic syndrome ('MDS') specialist to review the results of my genetics test and routine bloodwork. Unfortunately, after 9-weeks the results of the genetics test have not arrived.
However, since my post Disneyworld stomach virus (2nd number), are listed today’s numbers (3rd number):
RBC: 4.04 to 3.48 to now 4.05
Platelets: 92 to 67 to now 83
Hemoglobins: 14.2 to 12.2 to now 14.4
white blood cell: 1.9 to 1.6 to now 2.2
Neutrophils 1.1 to 0.8 to now 1.0
Lymphocytes: 0.7 to 0.7 to now 1.0
For those that have been helping make sense of all this I have been diagnosed with Myelodysplastic syndrome ('MDS') with a ddx41 (R339C) (VAF - 53%) mutation and a somatic missense ddx41 (R525H) (VAF - 11%) variant.
Can anyone help me make sense of all this?
Thank you so much in advance…
Hi @twohorsepony, sorry to hear that the results of your genetic test haven’t arrived yet. Is your specialist chasing them?
Although I completely understand looking for answers, especially when you’re now having to wait longer for those results, I’m afraid it goes against the Forum’s Terms of Use for anyone here to interperet your results as it is classed as medical advice.
If you’d like to talk to our wonderful @BloodCancerUK_Nurses on the Support Line, they may be able to offer you some broad advice or guidance on what questions you might want to ask your specialist and haem team. Please do feel free to reach out to them (for free) on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Of course, the best people to speak to about your results are your team, as they know your case in detail and are familiar with any specifics that might need to be taken into account.
Take care,
Ceri - Blood Cancer UK Support Services
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Very good advice.
I just asked similar questions through the NHS cancer nurses email at my local hospital and got a full answer although I’ve been about 6 months trying to figure out the questions to ask because there seems to be such a wide range of classification for Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') combination. They were very helpful and, in my case, the prognosis is quite encouraging
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