had my first bloods taken since starting hydrea two weeks ago. All bloods in normal range and platelets down from 1.2M to 880. So far no side effects and feeling well overall. 🤙🏽 39 yo male CALR type 1 for reference.
Question: how long can I expect my numbers to decline at this dose? Is two weeks enough time to line out?
Doctor seemed happy but wants to check again in 2 weeks to make sure WBC doesn’t get too low.
have a good day everyone. Tomorrow is Friday 👌🏽
You did not mention what dose of HU you are taking. That was a very good decrease in two weeks. Are you also taking low dose aspirin?
Eileen
Glad to see that you are having a rapid response to the HU. I believe that you were concerned about long-term HU use at your age. Was the determination made that a more rapid reduction in thrombocytosis was indicated based on PLT = 1.2 M (trending upward?) or did you have a thrombosis or hemorrhage? Regardless of the reason, glad to hear you are tolerating the HU so far. Also that your MPN Specialist is following the standard protocol of CBC every two weeks. That should continue until dose titration is completed. Your doc will also be doing a CMP on a regular basis to monitor lever and kidney function.
There is some information that you should have already been given regarding HU, particularly how important it is to avoid pregnancy. Just in case, here is some information worth reviewing.
drugs.com/monograph/hydroxy...
oralchemoedsheets.com/sheet...
ethrombo.blogspot.com/2017/...
In addition, this information is important to know.
Loss of fertility
You may not be able to become pregnant or father a child after treatment with this drug. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.
Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.
Contraception and pregnancy
This drug may harm a baby developing in the womb. It is important not to become pregnant or father a child while you are having treatment with this drug and for at least 3 months afterwards.
Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner falls pregnant while having treatment.
cancerresearchuk.org/about-...
wishing you all the best on this next stage of your journey.
No thrombosis or hemorrhage. My platelets have been trending up ~100k every 3 months since diagnosis. My mpn specialist at md Anderson felt like we needed to intervene.
With the steady upward trend, initiating cytoreduction at this point makes sense. You are certainly well advised and informed. Like all of the medication choices we have, there are risks and benefits to be considered. There are also issues with the proper management and handling of the various medications that the patient needs to be aware of. Equipped with all of the needed information, we can make good choices and have good outcomes.
Wishing you all the best.
Calr 1 . 65 yrs old . I was first Diagnosed January 2021 . Started with 500 mg HU and was checked every 3 weeks to see if platelets were coming down . They came down from 1.4 to 990 . Three weeks later only down to 820 so my HU was changed to 1000 mg M- F and 500 on weekends . They finally went down a few weeks later and now they continue to range between 470 -590. My hemotologist is happy with that and so am I . Calr mutation has higher platelet numbers than Jak2 . I see her every 5 months now .
The Nader point for Hydroxyurea is 10 days, so checking your PLT count after taking it for two weeks was definitely the right thing to do.
Reducing the PLT count from 1200 to 880 in two weeks is great and it will probably continue to go down a bit more within the next two weeks, but the PLT count reduction should bottom out soon.
If the PLT count does manage to drop below the lower limit at your current dosage of Hydroxyurea, then your oncologist can simply reduce your dosage until your PLT count remains comfortably within the normal range.
Taking 81 mg of aspirin once or twice per day is also a good thing to do to help reduce the probability of having a thrombotic event.
Keep having good days - !! I am coming up 81 yrs - some bad days but heh enjoy life . I now use a tens machine on bad days .
this forum is great - have a good weekend everyone. 😀🇺🇸
My results were exactly like yours. Started HU about 2 months ago at 1,000 once a day. Went from PLT 1.2M to 890 in 2 weeks. I found my WBC and RBC did not reduce proportionately. They reduced less, which was a good thing.
My doc wanted to see better PLT so I alternated 1,000 & 1,500 every other day, for 2 weeks. This was a disaster. PLT went to 240, but my WBC and RBC tanked dramatically. I cut back to alternating 500 and 1,000 HU and I'm now at PLT 650. But my WBC and RBC have not recovered proportionately. Which is a bad thing. There were a few adjustments between these two data points, but I'll spare you the details.
I'm checked every 2 weeks. Bottom line for me, HU does seem to have a cumulative effect. The longer you take it, the less you may need. Also, PLT, WBC, RBC and your other markers all seem to react differently. I find this odd and we are still trying to find the best balance. I'm due to be checked again in about 10 days. I'm hoping to cut back on HU a little more.
I also take one 81mg asprin once a day as well.
what is your mutation? CALR as well?
I'm both CLR and JAK2 negative. I'm positive for the pathogenic mutations of MPL and SF3B1. I have both an MPN and an MDS, so my situation is a little unique. The formal diagnosis is MDS/MPN with ringed sideroblasts and thrombocytosis.
I hang out here because the treatment options are identical to ET. As of today, I have now been on the 500/1000 alternating HU doses for 30 days. PLT now at 358. WBC 5.3 and RBC 3.2 are still low, but have come up. I will stay on this dosage for 2 more weeks and then hopefully lighten it up even more to 500 each day or 500/500/1000. I'm Ok with my PLT being between 400-600 if I can get the WBT & RBC up a bit more. It's a tightrope act for sure.
I was diagnosed with PV eight years ago and I’m on Hydra over a year, since starting on medication my bloods are at good levels and haven’t need any other treatment, I’m on this medication for life as it is working well and apart from hot feet at night and fatigue I’m managing a normal lifestyle.
Symptoms? HU Problems? 
Checking in
HU to Peg Transition Problems - 
Bruising on HU
