mds/mpn-rs-t

[woodmonkey]

Does anyone out there have this specific diagnosis. I was diagnosed with it in 2018 and was told it was rare. I am on hydroxyurea and aspirin and that is controlling my platelets but not new symptoms I have developed.

[mhos61]

Hi wood monkey, and welcome to the forum.

If you look to the right of your post you will see “Related Posts,” there are a few members who have posted there with the same condition. Hopefully, one of them will see your post and respond. It’s worth reading them too.

[Brendaf in reply to mhos61]

HiI’m not sure what you’ve been diagnosed with but I have chronic neutrophilic leukaemia which is also very rare and I’ve not found anyone else with this condition.

[mhos61 in reply to Brendaf]

Hi Brendaf, I have ET.

I’m not sure if you meant to respond to me or not.

I have just read your previous posts. It seems that you are indeed rare with your diagnosis of CNL. I imagine even being part of this forum, you must still feel a sense of isolation. Connecting with others with the same condition is so valuable.

Have you thought about writing a post maybe with a title, “Looking for fellow CNL Patients”, that of course is just an example. Also try posting on the Leukaemia Care forum. You may well get no response due to its rarity, but you never know. Also, if you message Maz, she may be able to assist you further.

Mary xx

[Kekoa]

I received the same diagnosis in March of this year. I am also on HU plus aspirin. My specialist is keeping my HU dose as low as possible so it doesn't affect my red blood cells too much.

[K-itty]

Welcome to the forum, Woodmonkey... you'll find support and hopefully answers to your questions?I was diagnosed with ET in 2016 after a required blood test was done for an upcoming hip replacement surgery. A year later, I was also diagnosed with PV. At the time, I was only on low dosage aspirin and wasn't until just this year that I started on HU. Unfortunately, my body hated HU... some tolerate it just fine, but I didn't. Currently I'm back on the baby aspirin and doing well...better than when on HU. If it works for you and you tolerate it well, that's great! There are other choices- it's a matter of finding the right fit.

I've been amazed at how the hemotogists of the people on this forum, place them on relatively high doses of HU and their platelet levels don't seem that high? At least to me.

[Eadaoin]

MPN/MDS since 1998. The MPN is ET. I have no mutations. Low Hb occasionally and needing iron infusions. On Edoxaban now after many years on Aspirin then Warfarin. Hydroxy if needed.

[NedKel65]

Hi there I can say staying hydrated definitely helps with toleration of HU

I skip one night a week and find I feel achey joints the next day

I feel tired regularly and find resting is ok but keeping active through the day helps make a restful night sleep and feeling a little better next day

I don’t have much of an appetite so try to eat ( snack) regularly to keep energy up

Hope this helps !!

I’m on rivaroxaban 20mg daily as aspirin or warfarin wasn’t strong enough to keep blood thinned and stable

I have regular blood tests as I have ET and PV xx

[Mazcd Partner MPNVoice]

hi Woodmonkey, I have found this article in the ASH publications, it's a bit wordy, but might help explain your condition a bit more for you, you need to scroll down the page to get to the section about it. Best wishes, Maz

ashpublications.org/hematol...