ET: Hi, my name is salma 21 years old, recently... - MPN Voice

MPN Voice
5,832 members7,979 posts

ET

somel
somel

Hi, my name is salma 21 years old, recently diagnosed with ET, platelet count 1200000

Negative jak2, CALR , PCR for BCR/ABL

Still waiting for the BMB

Went to 2 specialists one prescribed hydroxyurea with zyloric and the other prescribed anagrelide

And I saw that your forum and I thought you guys can help me, I can't decide which one should I take

I saw your advice about drinking a lot of water and try not to panic

I will really appreciate other advice and I was happy to find other people with the same condition

15 Replies
oldestnewest

Hi Salma,

Sorry to hear that you have ET, but I am pleased that you have joined this forum as I am sure you will find a lot of encouragement and support here. Some people on the forum have had an MPN such as ET or PV for many years and are a great help to those of us who have been recently diagnosed.

It is very confusing for you to have had specialists prescribe different things! Hydroxyurea is often quite well tolerated, and many people with ET are given it, however there are some important things to consider regarding hydroxyurea, especially if you are young and may plan to have children. There is very good information about treatments for ET and other MPN disorders on MPN Voice mpnvoice.org.uk/about-mpns/...

8 days ago "CommonDaisy" wrote to this forum. She is another young person, and I think that the advice she was given may also help you.

I suspect that Maz, our lovely forum moderator, may contact you here, but if not it would be a good idea to get in touch with her at maz.cd@mpnvoice.org.uk

All the Very Best,

Peter

somel
somel in reply to stillkicking

Thank u so much Peter

I am just too confused and as you said I am young, I know that both have different side effects, and I want to take the one with the least side effects

I decided to take anagrelide as both specialists recommend that I have to start the medication immediately because of that high count

I really appreciate ur reply and support , it makes me feel less worried and that I am not alone

I will try to contact commondaziy and maz for their advice too

And again thank you 😊

Hi Somel,

I do think your mind must be in turmoil. You are a youngster compared to most of us. I have ET. From what I’ve read both meds are good. In your case though you need to take into consideration your long term wants regarding starting a family.

Many people feel better once treatment starts.

If you are in the Uk. Mpn voice is an excellent source of information. The USA has the mayo clinic. With the eminent Doctor Ruben Messa based there.

I do hope people of a similar age reply to your post and offer you advice.

somel
somel in reply to Wyebird

Thank u so much wyebird,

I do realize that I will have to deal with this disease for the rest of my life, it's like having hypertension or diabetes, it's not a curable disease, I will just have to control it, and that what worries me how I am going to deal with it

Many questions in my head, Do I have to follow a certain life style ? , for how long I will take these medications?! , Can I start a family ? And many many questions

Unfortunately I am not in the U.K. Or in the USA , but I am a medical student and I have some connections with doctors in America, I asked them about my condition and still waiting for their reply

Anyway all I have to do now is waiting and see what happens

Thank u 😊

Petsch
Petsch in reply to somel

Where are you. I’m in us also

shankei
shankei in reply to somel

Hi Somel,

Just wanted to give you some reassurance, I was diagnosed with ET at 19 yrs old, I am now 42. I have two children, 1 before diagnosis and 1 after. When i was diagnosed there wasn't as much information on MPN's as there are today, and it wasn't considered a neoplasm. So to be honest, i just got on with things in a blissful state of ignorance. I studied & partied like any other youngster, carried out my treatment and was never hindered by the condition other than a few side effects. Things are a little different now, however I would say as long as you feel fit and able, don't let your condition define you. You know your body better than everyone else, so listen to it. If you feel fatigued, rest, where possible and if you feel well enough to run a marathon, then do so.

I wish you all the best and hope my input has helped.

somel
somel in reply to shankei

Thank u shankei

I really reading your replies they really give much support , I am trying to go on with my life but it's hard to keep waiting my results and how am I going to deal with it for the rest of my life ?

Iam just alittle confused

But I really appreciate ur replies 🙂

Petsch
Petsch in reply to Wyebird

Who is dr Mesa. Considering going to someone who may be the best in this field

Wyebird
Wyebird in reply to Petsch

Ruben Messa is based in USA. Maz mpnvoice .org.uk. Is more suited than I to give you a list of people you might consider.

Mazcd
MazcdAdministrator

Hello Somel, welcome to our forum, I can see that you have had some lovely replies to your post, I am happy to send you any of our information booklets, I see that Peter has given you my contact email address, so do please get in touch if you need anything. Best wishes, Maz

I was diagnosed with ET in April 2016, probably due to exposure to benzene (in petroleum products ) and prescribed Hydroxycarbamide . In December 2016 I was experiencing extreme fatigue. In April 2017 my medication was changed to analgrelide but fatigue continued. My GP then detected abnormal heart rhythm, so I spent some time in hospital. After another bone marrow biopsy, the diagnosis was change to myelofibrosis, so my medication was changed to Roxolitinib, and my heart rhythm has been stabilised. At present much better. Fatigue is known side effect of Hydroxycarbamide and Analgrelide.

somel
somel in reply to Andrew8

Hi Andrew,

My doctor told me that anagrelide may cause palpitations he told me if I felt anything I should stop the drug immediately and tell him

But I can't change the drug until next visit and I will only take it for 2 weeks then see results to decide for how long I am going take it

somel
somel in reply to Andrew8

Do u still suffer from fatigue with roxolitinib ?

Hi Somel, im 44 with a similar platelet count to yours. Im not taking anything other aspirin as a precaution as my haematologist suggested and i agree with her. I dont want to touch the drugs until absolutely necessary. Which probably be when im much older.

I would suggest you do some research. For example Google 'treating essential thrombocythemia' or something similar. And look for research papers or doctors articles in the search. Some info i found was helpful to me.

Hi somal i have ET and jak2 pos, for the last nine years,i was 39 at the time.my medication is interferon alpha 2x a week and asprin,am doing great,just a little tired now and again,still working part time and running round after 2 and 5 year old girls,myself i try and not think to much about the ET and get on with my life.This group is a great help for me,and i know am not alone,only a few friend's and family are aware of my condition my choice,just keep active drink water,rest when needed, good luck to you x

You may also like...