Blood test

[Windy51]

I’m at the hospital waiting to see doctor about my blood test it’s been three months my platelets were on 470 last time so hopefully today it is good and I can lower tablets because they are putting weight on me and hopefully all is good they always take blood pressure and always say it’s up but worrying about the blood test makes it up I think it was ok when I went to my doctor last week . I have ET Jack 2 neg I have been taking Hydrea for 6months my platelets were 890 🤞

[Spirit123]

I take Hydroxy pills too . I take one Sunday to wednesday and two Thursday to Saturday. I’ve been in them 6 yrs and I didn’t gain weight with them luckily. Hope you can reduce dose. I’d like to be off the pills but tolerate them well. If I stop them the platelets will shoot up again. I was told I’d be in them for life with ET Jack +. Good luck and stay safe.

[Windy51 in reply to Spirit123]

Hi your lucky you haven’t put on weight I went to hospital today they said I’m to stay on my Hydrea two a day and Asprin I’m height risk clotting my doctor said they put on weight but the hospital doctor said no but I think they do my blood test is ok 490 is my platelets count they said they like to keep them under 500 other tests are ok thank goodness I take 1000mgs a day good luck yo

[Spirit123 in reply to Windy51]

I do walk a lot so that helps keep my weight down. I don’t think all GP know much about this ET. Best to believe the specialist. Normal platelets are around 400. Hope you stay safe in this strange world we are in .

[Runner999 in reply to Spirit123]

Yes, we need to stay active and control our diets (and drinking ! ) to maintain a steady weight - especially with all the lockdowns. I have been on 1000 hydroxy for nearly 2 years - managed to lose 2-3 pounds rather than put any on.

[Spirit123 in reply to Runner999]

Fortunately I don’t drink alcohol. I do love chocolate though!

[socrates_8]

Hey Windy...

I am a tad confused? You say that you are JAK2 Negative, so are you arranging to have other tests to determine which mutation you might have, if any(?)

I am on Ruxolitinib, and that tends to have weight gains too... But that's why I am very careful about my diet and try to keep my exercise regime as consistent as I can...

Whenever I do slip up, (we're only human right?), I instantly find a couple of those lost kgs...

It's hard to do sometimes, but I just keep trying to chip away at the bigger picture...

And eventually, I am back on track again...

Best wishes

Steve

[Windy51 in reply to socrates_8]

Steve I am Jak 2neg and CAL R neg MPL positive And BCR-ABL neg what ever this all means not sure

[Jennytheb]

Hi, what was the result? Hope what you wanted!

[Windy51 in reply to Jennytheb]

Yes 490 hospital doc said h likes to keep them under500 but I still have to take same amount of Hydrea and Asprin

[Jennytheb in reply to Windy51]

Hi Windy, mine had dropped from 4 years ago 900 something and is now 460 but I still have to take 3 hydrea daily, had hoped to drop a bit but suppose it it still worth keeping figures down. Hope you are ok on the meds, I am.

[hunter5582]

"At 18 months, the hydroxyurea-treated subjects exhibited an average weight gain of 3.16 kg. The mean weight gain in the placebo-treated subjects was 1.82 kg. Body composition analysis showed that the additional weight in both groups involved both lean and fat body mass components."pubmed.ncbi.nlm.nih.gov/917....

As our friend socrates_8 indicates, diet is all the more important when on certain meds. I know we have chatted before, but do not recall. What were the results of CALR and MPL? Are you triple negative?

Regardless, suggest not sweating the exact platelet level numbers too much. There is no real difference in whether you are at 470 or 420. It is normal for platelet levels to cycle by as much as 100K in a single day. It is the trend over time that matters. What matters the most is how your blood cells are behaving rather than an absolute number. Whether you are experiencing symptoms like thrombosis or hemorrhage is what matters the most.

All the best my friend. Hoping you have a great year in 2021.

[Windy51 in reply to hunter5582]

Hi yes I’m Jak2neg CAL-R negative MPL positive BCR -ABL negative can you explain to me please yes I don’t understand a lot of this they said everything else was ok

[hunter5582 in reply to Windy51]

If that video does not load, try this link. Click on MPN Molecular Biologympninfo.org/conferences/201...

[hunter5582]

A few quotes

"Essential thrombocythemia (ET) is a clonal bone marrow disease, characterized by increased production of platelets. Most patients with ET will have a somatic mutation in Janus Kinase 2 (JAK2), Calreticulin (CALR), or myeloproliferative leukemia virus oncogene (MPL) with subsequent upregulation of the JAK-STAT pathway."

ncbi.nlm.nih.gov/pmc/articl....

"BCR-ABL1 refers to a gene sequence found in an abnormal chromosome 22 of some people with certain forms of leukemia. Unlike most cancers, the cause of chronic myelogenous leukemia (CML) and some other leukemias can be traced to a single, specific genetic abnormality in one chromosome."

AKA Philadelphia Chromosome. You do not have this one. You may have heard the term Philadelphia Negative MPNs.

"The classic Philadelphia chromosome (Ph)–negative myeloproliferative neoplasms (MPNs) are a heterogeneous group of hematopoietic stem-cell diseases, characterized by activated JAK/STAT signaling and significant phenotypic mimicry, including a propensity for evolution to myeloid blast phase disease."

The MPL mutation is one of the three driver mutations that causes MPNs - as I recall, the rarest of the three. Understanding how the MPL mutation works is a bit of pretty complicated proteomics, but the simple version is that like the JAK2 mutation, it up-regulates the JAK-STAT pathway and causes your body to make too many platelets. Up-regulation of the JAK-STAT pathway does other things too, which is why we tend to experience so many secondary symptoms.

As I recall, this is a pretty good presentation of the topic of MPN Molecular Biology

youtube.com/watch?v=zHwTIJb...(Not working as expected?)

Hope that helps.

[Windy51 in reply to hunter5582]

Thank you