Hi, I’m ET, CALR positive, taking 2 hydrea daily, I have had my phone appointment with my haematologist, and he told me that not only have my platelets risen again to 879 but my haemoglobin are very high. So he has increased my dose to 3 tabs at the weekend, 2 tabs mon-fri.
My concern is, am I progressing to PV ? I know I should have asked my heamotologist but it didn’t cross my mind until after.
Sorry to hear about the elevation in erythrocytosis. This is not the norm with CALR. Further investigation would be warranted to ensure you understand what is going on. It could be that you are experiencing secondary erythrocytosis. If so, this could be resolved by treating the underlying cause.
Any change in MPN status should always be assessed. It would definitely be worth consulting with a MPN Specialist if you do not already have a hematologist with this sub-specialization on your care team.
Please let us know what you learn and how you get on.
thank you for your reply, I will let you know when I know more.
hi, sorry to hear this, you could perhaps phone your haematology clinical nurse specialist (CNS) and ask her/him about the rise in platelets and haemoglobin and what their thoughts are about it and you can tell them that you are concerned about it possibly progressing to PV. Best wishes, Maz
Totally agree w/ comments relating to seeing a MPN specialist... We all need that level of expertise & experience while learning how to manage our new MPN interrupted lives...
While there are many research reports suggesting that there is generally less likelihood of 'Thrombotic' events occurring where CALR is concerned... It may better be viewed as a generalisation, given my own MPN experiences thus far...
Diagnosed (Dx) 2016, I am Post ET / MF w/ CALR(2), & I've always had an extremely high Platelets (Plt), which today is part of my generally accepted reality of my MPN altered life experience...
There is some limited research that suggests CALR type 2 can be associated w/ higher Plt regimes. Which may in some cases connect w/ my having had suffered X3 Transient Ischemic Attacks (TIAs), minor brain strokes(?)
Not everyone makes a connection between having a 'Higher Plt regime' as a potential causal stimuli for having TIA.
HU was not well tolerated by me, and eventually a Bone Marrow Biopsy (BMB), changed my diagnosis (Dx) classification from ET to Post ET / MF, with a Grade2 level of bone marrow scarring (& few other increased symptoms), including internal bleeding, Portal Vein Hypertension, & a slightly enlarged spleen...
Just curious...
* Have you had a BMB as yet?
* How was your spleen size at Dx & presently, do you know?
* What is your current symptom burden like?
Like many things in nature it seems everything has some type of connection...
However, new Med's might be worth investigating too...
Like Hunter suggests, best to find yourself an MPN Specialist to assess & help answer many of your Q & As.
Please do let us know how you get on as you continue to navigate & research some of those issues...
Very best wishes...
Steve
(Sydney)
Thank you for your reply, I have been into the hospital today to collect my tablets, I asked to speak to someone as I was worried, and luckily for me, my Heamatology dr was on the unit. He reassured me that he is keeping a close eye on my results and not to worry. He’s hoping the rise in my medication will hopefully get my numbers down.
Thank you all that have advised me, you are all wonderful x
I’m not sure about your Haemoglobin number, that is worthy of medical investigation as others have suggested. Have you had a BMB and genetic sequencing. Both are critical to fully understanding you condition.
I was on Hydroxyurea for 11 years. Starting at one capsule per day and finishing on 4. Your dose will probably continue to increase- that’s the nature of cancer.
HU was good to me (zero side effects) but it is chemotherapy and it can cause other problems with your bone marrow and other parts of the body.
There are newer drugs available including Pegasus which has the potential to alter the course of the disease. And there are now the CALR antibody trials.
Best wishes.
Hi there! I'm ET borderline PV with CALR positive as well. I was diagnosed about a year and a half ago and started on hydrea. Dose increased to two pills daily about 3 months ago, but side effects became intolerable and my numbers stopped responding. I recently switched to besremi two weeks ago and have only taken my first dose with my second scheduled in a couple days. My numbers have already started to respond and my dr just advised yesterday that I could stop the hydroxyurea completely now. I feel so much better on the new medicine. Almost like old me. I'm hopeful this continues. Mentioning because I don't know if you've considered it or it would be an option to you?
Oh that’s brilliant news, thank you for replying, I’m pleased it’s working for you and are feeling better. I will definitely mention this to my haematologist x
Pegasys and increasingly low haemoglobin count
Increased Platelets
Hydration and Haemoglobin / Haemotocrit Levels
Pegasys and elevated ALT and Ferritin
PV BUT elevated ESR 
