MPN Voice
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CindyS

Hi Everyone, I was diagnosed with JAK2 ET about three years ago.... I also am positive for Chek2 gene. My platelets range from 970-1090 and I've been taking aspirin 81mg x2 pee day. I met someone recently that was shocked that I am not on one of the medications but my hematologist says I should just remain on the aspirin?

On a spectate note.... i have strong family cases of Breast& colon cancer. Since having genetic testing and positive Chek2 I am being strongly encouraged to have a prophylactic double mastectomy. I'm concerned about my JAK2... my hematologist says he'll have my on hydrea for 2-4 weeks to lower my platelets.... has anyone else had this experience? I live in Miami so we do have a lot of good doctors here but I want to be sure I'm proceeding appropriately.

Thank you, Cindy

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It doesn't sound right to me ... I don't know what your Doctors expectations will be with only 2-3 weeks of hydrea. Did he mention what he wanted your platelets down to? Also you'll have to stop the aspirin for a time before any surgery. It will be interesting to see what others have to say.

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Thank you.... my doctor said he would want my platelets ina normal range and I am assuming off the aspirin.

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Hi Cindy, you really need to discuss this with your doctor as they have all your notes with your past and current medical history, we are all different, so any advice given to you by other people on this forum relates to them, you can only take their advice in general terms. Best wishes, Maz

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Thank you... I do agree, Everyone's profile can be different and I guess my treatment too.

I will follow my doctors combined advice.

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Hey Cindy... :)

My name is Steve (from Sydney, Australia). I was originally diagnosed in May 2016, as ET w/ the Cal - R Mutation, and then after a positive Bone Marrow Biopsy (BMB) revealed a grade 2 level of scarring my diagnosis was reclassified to early Myelofibrosis in December 2016.

Cindy, how old are you? The is a general trend w/ the medical fraternity to be a tad reluctant to go down the cytotoxic chemical treatments if one is still fairly youngish...

I am 58, and I have also had what's called a TIA (minor brain stroke), because my platelets managed to become extremely high. I wasn't blood-tested at the time of the TIA (a year earlier than my original diagnosis). However, a year later when my MPN condition was discovered my platelets were 1.7M.

Hydroxy' (HU), definetly lowers platelet counts, (well at least it did for me). However, I was not one of those that could tolerate the HU for very long, and of course... we can & do often react quite differently from one drug to the other between varying individuals etc.

I have not heard of Chek2 mutation before. Hence, I shall have to do a little research to better edify myself...

In any event, if you are concerned in any way, I would definite encourage to seek a second or even a third opinion...

Dr Clare Harrison at St Guys might be better able to advise you and I am sure that Maz, (the website co-ordinator), might soon respond to your post too...

Best wishes Cindy, and I am sorry that I could not be of more assistance. I really just did not want to feel you were alone in this.

This is a fantastic forum and I am certain that in time more of the lovely people here will offer you some further advice and support.

Steve

(Sydney)

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Hi Steve,

Thank you so much for your thoughtful and informative reply. My Chek2 mutation is a genetic Breast/colon/prostate gene. My doctors want me to have a prophylactic mastectomy due to the positive gene and family history. I also have been going to my hematogist for the Jak2 since I was diagnosed 4years ago. I am 53 years old and my doctor says that he doesn't want me to go on HU this young (as you said) and if I can wait until my 60's that would best. 🙏 My platelets are on average 1million and I take 2-81mg aspirin /day. I would be on the Hydrea for a month prior to my surgery. Have you ever considered donating blood to lower your platelets?

Thank you and all the best! Cindy

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Hey Cindy... :)

It is always best to be guided by your medical team, and that is for certain. All of us here a such a wide variety of MPN afflictions, and even generalities could be dangerous...

However, I also believe that the longer anyone can go w/out having to take cytotoxic chemicals, the better!

My immune system is being impaired and suppressed due to the taking of Ruxolitinib (25mg bid), and it is also adversely affecting my renal system which I must keep a close eye on etc (low to no alcohol - & I have always been partial to a drop of the grape at evening meal times) - the only meal I have these days...

Unfortunately, for me, I was also experiencing some adverse symptoms to my MPN condition, and thankfully much of that is generally relieved due to the Ruxoltinib, I believe.

I am also taking 100mg daily of aspirin, however, my platelets still remain stubbornly high around the 750-1M mark, and my anaemia continues to become worse...

I had not thought of trying to donate blood mainly due to the fact that I have such useless surface veins, and my blood is most likely not much use to anyone... But hey... I could be wrong! Would not be the first time... :)

Have you done that Cindy? Donated blood I mean, did it help?

I shall definitely look into that Cindy, thanks for the tip...

Have an awesome day... :)

Steve

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Hi Steve,

Thank you for your advice. I have not given blood to bring down my blood counts because my doctor has said I should remain on the aspirin instead but I'm going to ask again. If I can avoid going on Hydrea I'd prefer to wait.

Maybe I misunderstood but I feel like some patients are saying once on Hydrea their symptoms changed sometimes not for the best permantley ?? That's another concern... if I would go on this medication even for a short time it could make my JAK2 ET worse? I guess there are no gaurentees.

How are you doing?

Thank you, Cindy

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Hey again Cindy... :)

The Hydroxyurea (HU), did not work for me, and it did provide me w/ a range of other symptoms/side-effects...

Some might argue that those side-effects are as a result of my MPN (MF) in my case. However, the burning sensations (mainly in my legs) dissipated almost immediately upon cessation of taking the HU. I also suffered from a extremely bad form of mental fogginess, which adversely affected my ability to remember very basic things (mainly short-term), and I found that a most disturbing experience.

Nevertheless, I do still suffer from memory problems, largely in any sort of stressful situation, I believe. Hence, I do always endeavour to remain calm.

HU can produce adverse side-effects (as it did in my own experience), however, I am not of the belief that it can make the MPN itself worse. Generally speaking, the range of cytotoxic drugs used to manage our various MPN conditions main function is to normalise our blood counts, which in turn, one might argue, can improve our quality of life (QoL), and perhaps extend our longevity even just a little...

As I mentioned previously, high blood platelet counts are thought to contribute to the emergence of Trans Ischemic Attacks (TIAs). I was fortunate that there were not more serious lingering affects in my own instance (memory issues aside).

Cindy, we are all completely different however... For instance, Maz & others here find that HU works for very well in their cases...

Be guided by your medical team Cindy, and if in any doubt seek a further medical opinion.

We are just starting spring (down under), and it is my favourite time of the year. I intend to take my cycle out for some serious exercise on this brilliant sunny day. Hopefully my flu won't intervene too greatly...

Have an awesome day... :)

Best wishes Cindy...

Steve

PS. I do struggle a tad w/ my exercise routine, but I always feel better afterwards... :)

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Thank you so much Steve. Definitely exercise helps a lot. I normally play tennis 4-5 per week and go to the gym but I have torn meniscus in both knees so I've been out of commission for several months:(

Hope you have a great spring! Can't wait for our Miami summer to go.

Take care, Cindy

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Hopefully you will be on the mend shortly...

You are most welcome Cindy.

Best wishes

Steve

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