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| There's me earlier this summer, feeling pretty good, all things considered. |
My MCV/MCH were slightly elevated, which the doc says is a function of being on hydroxyurea, and this isn't something to worry about. She said to think of it as a marker that simply indicates I'm taking HU.
Since starting on the HU, I have had no digestive upsets or hair loss (though you can see in the photo at left that I was cutting my hair short just in case).
So all of that is good news.
The not-as-good news is that Doc told me to take two extra HU capsules twice a week to more quickly nudge the platelets into the normal range.
Doc also said that I could cut monitoring to once every two months instead of once a month, so I will not need my next CBC and LDH until Christmastime, and I hope my "present" will be platelets below 400.
I will also get a couple of one-time blood tests to look at kidney and liver health, just to make sure everything is OK. It's a precaution for anyone on chemo; not surprisingly, having even low doses of chemo going through your system can affect the those organs, whose main job it is to clean toxins out of your system.
Anyhow, I've been on the extra doses of HU for about a month, and I feel a little surge in energy and less brain fog, but also some mild agitation and irritability. It seems to be subsiding with time. I can't find any info that HU causes side effects like irritability, though "the literature" for the drug does note that mood can be affected.
I put out a query about the irritability on patient-to-patient lists that I belong to and didn't get any response, so maybe it's not the HU. It's important to remember that we are more than just ET patients, and not everything that goes a bit sideways can be attributed to the disease or the meds.
I'm learning that my doc's philosophy is that ET patients should be taking the lowest effective dose of HU. This is a way to target platelets without, hopefully, affecting other blood levels. Her approach is to nudge the dose up or down very slowly to keep patients on an even keel.
Not all doctors are plugged into the same philosophy, and in the U.S. there is no standard protocol for HU treatment of ET patients. A lot depends on how well-informed the doctor is about MPNs, what has worked with his or her patients in the past, and how concerned your doc is about blood clot risks. Dr. Blood said flat out that researchers can't say for sure whether CALR+ patients like me need the same treatment as JAK2+ or MPL+ patients. ET-CALR patients are a little less likely to clot, and that's why she held off on the HU for a few years until she could see that my platelets were showing slow but clear upward trend.
The other thing about the HU is that it can cause weight gain and weight loss in some patients. Sadly, I am one of the patients for whom weight gain is a problem, especially since I already needed to lose weight when I went on the HU.
So: I am turning going to have to get serious about weight loss. Being overweight increases clot risks, and so does my elevated cholesterol, and high blood pressure, which I have to take medication for. I may actually break down and join the gym in the new year.
That's the latest from me. Be well!
My first three months after diagnosis were rough, as I was not only panicked at the new diagnosis (I have WHAT?), but the platelets were so high and my hemoglobin so low, I was miserable. Then came the "golden year" where everything just sort of stated stableish on low doses of HU. Sometimes 500 daily, sometimes 1,000, sometimes alternating 500/1000, depending on where the platelets were trending. My hemoglobin stayed in the 11-12.5 range, and I had my head buried very neatly in the sand. Then all hades broke loose. Since the end of September I've had 6 units of packed cells, and the platelets have gone from over 2 million down to 24,000, then back up to over a million right now. We're all getting frustrated as we just can't get them down. Sign.
ReplyDeleteI am so sorry to hear it, djax, but it's a good reminder that ET is a serious and unpredictable disease. Circumstances can turn on a dime. Curious to know if your doc has tried a plateletpheresis.
DeleteHi, I’m so grateful for your blogs thank you. You have helped me to understand ET, HU meds and dosage increase more than I’ve learnt from my Haematologist at the Royal Perth public hospital. I wish I could communicate with you through our emails for some guidance when needed. Thank you all 🙏
ReplyDeleteThank you! I'm not a doc, just a patient, but we can learn lots from each.other. We are on FB, see link in right-hand column.
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