ET progression if all blood cells are increasing?

As it lowers our platelet count, HU can change our blood in other ways too.

After about a year and a half on HU, I got test results that were "off." Worried, I asked my oncologist, and was assured that this is a side effect of HU, not a new problem.

The essential priority is lowering your platelet count.

It sounds like you're doing everything right: tracking your results and asking questions when something changes. Hang in there!

P.S. Just this week I was told to up my HU, as my platelet count's still too high. So unfortunately I understand what you're going through.

Voices of MPN, a group in the UK, discusses signs of progression here:
https://www.voicesofmpn.com/mpn-blog/mpn-disease-progression-monitor-symptoms
As janemc said above, you've done everything right by alerting your doc, and he is taking things seriously by adjusting your meds.

Remember that everything about ET moves slowlyyyyyy, and the doc is looking at trends not one test that goes out of whack. So if it were me would wait to see how the next blood check goes unless I were feeling something different.

Thanks,
Not sure about my Dr. It has been a trend since Dec. with other cell types increasing but platelets were up and down, though they are increasing the last one. Shortness of breath concerning. Not sure 1000 mg total more a week will have an effect, not checking for 4 weeks. This was sudden since Dec. with dramatic increases in the wbc, rbd and others, never have been in past 3 years and though ET was mainly platelets. Unless transitioning to something else. Will wait and see, I guess ER if shortness of breath worsens. No back pain so wouldn't think an embolism. Did make appt. with my initial Hopkins Dr. in DC that does a lot of research but won't see him until May 5th.

lea123, please ask your doctor about the shortness of breath you are experiencing. Breathing issues are really scary.

But there could be a simple explanation. Congestion may be part of your ET. Not only do we have too many platelets, they're misshapen -- to a degree that may signal "foreign body" and trigger our histamine reaction!

Your doctor may approve your taking a daily antihistamine to ease your breathing.

This brilliant advice was shared on this forum by nohrt4me, and it has made my life so much easier! With my oncologist's approval, I take an antihistamine every morning.

I am really sorry for the stressful time you're having.

I think shortness of breath warrants at least a call to the doc, and I don't think urgent care/ER would be out of line, since we are all at heightened risk for clots.

Claratin helps allergy-type symptoms of ET, but if you are having trouble breathing that, to me, would be something I would want checked out.

Please keep us apprised!

Thanks. I do use astepro for allergies in general but had slacked off in the winter when there were less allergies, will try taking more regularly. The shortness of breath not extreme, kind of like someone more out of shape, but not usual for me. Dr. did hesitate and wonder about a ct scan but I didn't think it was that bad. However I was seeing a lung Dr for cpap (borderline) so I was able to get an appt. with him next week. I just know HU can cause some lung issues also.

Hi Janemc, what level did they think was too high for your platelet count? We have been ok with mine up to about 600 using less HU. Lea

Hello, Lea! For me too, it's like I'm out of breath after running up a flight of stairs -- except all I've done is get out of bed. Breathing becomes a lot easier about an hour after I take an antihistamine.

As to platelet count: HU got my count down from the 700s, but it's been stuck in the mid-500s, and my oncologist wants to get it below 500. That may be because I'm 70, old enough to be considered at higher risk of clots.

If you wish, please share with us how your appointment goes. We're rooting for you!

Glad you will see the pulmonologist next week and hope that will reduce some of your worries. Possibly the hardest thing about ET is the way it complicates life. Is it allergies or a blood clot? Is it arthritis or do I need to have my HU adjusted? Is it ET fatigue or a heart problem? It gets easier, but can sure seem overwhelming at times at first.

Hi @janmec, @lea123, Beginning of the year my platelets were just over 1000, now 11 weeks later after seeing specialist yesterday,now down to 652. Slowly coming down. I am on 1 1/2 x 500mg per day. See specialist in six weeks. Hopefully around 400 by then.