Update

[lizzziep]

I’ve had my blood tests/results this week. Very pleased that I am currently stable. All results in normal levels except haemoglobin which was 104, a lot higher than my previous average of 75 though.

I’m still on a combination of Momelotinib and hydroxy, plus twice weekly EPO injections.

As usual when I attend the phlebotomy department my veins refused to cooperate, if the staff see me coming they hide! It took two of the staff including the senior phlebotomist to get any blood. They can never get any from my arms, it’s always my hands. Apparently I have inherited my father’s deep veins - I’d have preferred a couple of million!

However later that day when taking my medication I slightly caught my finger on the foil of the blister pack containing the capsules - it was a complete bloodbath! It looked like I’d been slaughtering something on the kitchen counter. (I may have exaggerated a little there!) Such is life!

[jointpain]

It's good to hear you are doing well Lizzie, just wishing my wife was doing as well ☹️ We did see Professor Somervaille on Wednesday at Christie's, he suggested/told my wife to have the Darbepoetin (epo) injections every week again, as her Hgb isn't holding up again. To cap it all, he's told her, her heart is failing and he has referred her to my cardiologist, as a matter of urgency, so, I reckon she'll be seen sometime next year!

[lizzziep in reply to jointpain]

Goodness me she doesn’t do things by halves! Hopefully she will be seen soon.

[Spanelmad]

Glad to here your stable!!! No what you mean on the bloodbath cuts too 5 plasters to stem the flow on my thumb.

[EPguy]

£ for veins, such a trade off. Good to be stable.

From an opposite veins point of view, mine bulge out but also extra difficult to draw, since I was young. They roll around, as I always warn the nurse. Less skilled care givers leave me black and blue for a week or two, and the less skilled ones always have attitude (as in "I don't need your advice...")

[lizzziep in reply to EPguy]

I remember, a few years ago, I said to the phlebotomist you usually get it from my hands, he said he was the expert and he ALWAYS got blood from arms. Several attempts later he slammed the trolley with all the equipment on across the room and walked out. One of the regulars then got blood from my hand.

[ainslie in reply to lizzziep]

Always be wary of people who call themselves experts 😀

[hunter5582]

Glad to hear you are doing OK. Love the sense of humor! 🙃We need a huge dose of that to manage MPNs.

Hard to hit veins are a pain! Mine used to be great but I have had so many lans/venections that it can be hard to get a stick. We have had to shift to alternate areas some of the time.

Congratulations on arranging for a bleeding time test. I do that occasionally too. When my platelets were higher, I used to bleed like crazy. That is much better now with my platelets lower. My most recent impromptu bleeding time test went great. Just had to slap a bandaid on it and it was fine. 😜

[Cja1956]

Oh no. The hands are the most painful.

[ainslie]

great news, pleased to hear all is going well, I suppose it’s maybe a trade off between Hgb and platelets, the Hydroxy is likely reducing Hgb as well as platelets, if the platelets are well controlled now it might be worth asking Guys if a small reduction in hydroxy dose would work, I know in some countries hydroxy comes in 200mg as well as 500 etc.

[lizzziep in reply to ainslie]

I was told to take them every other day but then my platelets shot up, I am currently NOT taking them at weekends. Hopefully gradually coming off them.

[ainslie in reply to lizzziep]

Okay , it may still be worth asking about a dose tweak if that’s something that you want to do.

[lizzziep in reply to ainslie]

It’s got to be gradual, apparently, as the Momelotinib isn’t controlling the platelets at the moment, so it’s not going to be quick getting off the hydroxy.

[katiewalsh]

congrats on the great labs!

[Looolooo]

Just want to say that made me laugh out loud!