ET CALR+ & Venesection?

[Jonnymitts]

Hi I had my 4 monthly check up this week and my consultant was concerned about my haematocrit and to review it in 6 weeks with a possible venesection.

I always assumed venesections were a PV thing.

I have been asked to increase fluids and have been feeling more tired than usual so would this also help with fatigue? My consultant said it was a ET PV crossover?

I would be interested in if anyone else has had one with ET CALR+

Thanks

[mhos61]

I thought it was unheard of to have PV with the CalR mutation, so don’t understand the ‘crossover’ bit.

I suppose your haematocrit could elevate due to various things, such as being dehydrated etc. Maybe your Consultant is just being vigilant with regards to increased thrombotic risk. Having said that, people with the CalR mutation are deemed less at risk of thrombotic events?

You pose an interesting question! Hope someone can help.

[Jonnymitts in reply to mhos61]

Yes indeed thanks for your input. I wasn’t expecting it so I will have a few more questions when I go back and will drink more water to see if it brings it down. Though he did say my platelets would likely rise after a venesection and were at 840.

[socrates_8]

Hey Jonny...

Indeed, Mary makes an interesting observation below.

I am also CALR+ Type2, and although originally diagnosed as ET I am now MF.

My understanding is also that it would be an extremely rare event if someone with PV had a CALR+ mutation...

However, that said, there are mainly two (2) types of CALR+ mutations, 1 & 2. But there are many other even more rarer types too... that I know very little about at present, just that they do indeed occur.

While many people state that being of a CALR+ mutation means that one is less at risk of a thrombotic event, I have already had two (2) TIAs, (minor brain strokes), which are thrombotic events... Hence, I guess that in reality such statements are generalisations by the medical fraternity...

We are all quite unique, and all of us bring together a greater pool of variables, which in turn might makes us all just a tad different from each other too...

Anyways, please do keep us posted. It will be interesting to learn the outcome of this mystery of yours... Try to be patient, as you are doing all you can and the results will come in time I am sure...

Best wishes

Steven

(Sydney)

[Jonnymitts in reply to socrates_8]

Hi Steven, thanks for your reply.

I’m not sure what type I am I did ask and got a vague answer so maybe I’m one of the rarer types, though on my CALR result it mentions type 34?

Like you say we are all different and have other things going on so I guess we are getting closer to being treated individually rather than you’re under 60 so just aspirin and blood tests for now

I will be mostly drinking water for the next few weeks.

Thanks

Jonny

[socrates_8 in reply to Jonnymitts]

Jonny...

Quick tip... write down the questions that you most want & need answered, and pull them out and ask them when next you see your specialist.

Nail them on their responses too, so you are not left in any murky waters of uncertainty, where you do not completely understand the answer...

Personally, I have copies of all of my results from all tests I have ever taken, including every blood test for the past three (3) years...

There are fewer doubts or uncertainty when it is all in Black & White, in my view...

Keep us posted...

Steven

PS. Have not heard of Type 34, but then there is much I have not heard of as yet... Best wishes...

[Anag in reply to Jonnymitts]

Im also CALR but don’t know 1 or 2? I’m 54 and had my 3rd thrombotic events (TIAs) at 49, 51and 52. then diagnosis. 2 more TIAs at 53, despite Anagrelid and Aspirin. Yes. We are all different. My red cells and hematocrit are low, since I have an inborn anemia. (That’s why I cant take HU). Keep cool and asks lots of questions. Make sure you get understandable and clear answers. Cheers!

[Jonnymitts in reply to Anag]

Thanks for your reply. Sorry to hear about the TIAs. I’ve not had any yet as my ET was picked up in a routine blood test for high blood pressure & then a bmb to confirm diagnosis. I saw my GP yesterday and she was surprised about the possible venesection, she must be a rare GP that knows about MPNS.

[Anag in reply to Jonnymitts]

If she knows about MPNs, don’t let go of her. Unfortunately, my top endocrinologist was also a close friend and didn’t ring alarm even at 750! She checked my blood twice yearly (Hashimoto thyroiditis) and refused to believe someone so strong and full of life could have anything. She saw the thrombos rising by 50,000 year after year and still didn’t get it!!! That’s why you don’t go to doctor friends. They either see too much or too little. They’re not objective. The 3. TIA led to my diagnosis. I had already had ET for over 7 years. Take care about the blood pressure, especially when the weather gets warmer. Cheers. Anag

[Chaz1]

Can't offer insight in to the Calr mutation & ET/PV crossover however Hubby (48) has ET (under British Guidelines) & is considered PV (under WHO) he has venesections & doesn't have a massive rise in his platelets. He's just had a Venesection & his platelets at the test before were the lowest they had been for years (638). This maybe because he had his gallbladder out 6 weeks ago so had an amount of blood loss from that but we don't see a massive rise. He has venesections usually every 3 months, they rise to the mid 800s but generally seems to keep them stable too. Its something that his consultant is pleased with as was risk of increasing. As we all know its a different story in most cases but just wanted to say venesections don't automatically mean a rise in platelets. Hope you get all your questions answered.

[Jonnymitts in reply to Chaz1]

Thank for this it is quite interesting to hear about different treatments. Also good to hear only every 3 months as was hoping this wouldn’t become a more regular occurrence.