Recently diagnosed with ET

[Trueblue8]

Hi, a few weeks ago I was diagnosed with ET (JAK 2 positive). This was a huge shock, particularly as it's so rare! I started on 500mg of Hydroxycarbamide but platelets still high so it's been upped to 1000mg daily.

Only side affect is that I feel very tired, I'm ok all the time I'm doing stuff but once I stop I just want to sleep. I just wondered if anyone else has this symptom. The consultant told me it's a side affect of the drug and the condition.

One other thing, which isn't really important but slightly confusing, is the hospital don't class it as a cancer, but having read up about it, it was reclassified as a blood cancer by the WHO a few years ago. Has anyone else been told this as well? Many thanks

[WileyFrench]

I have ET as well, no mutations, diagnosed almost 3 years ago and on HU for a year. I take 500 mg one day, 1000 the other, alternating through the week. I haven’t noticed any real side effects but now wear sunscreen in any sunny condition as HU apparently makes us more susceptible to skin cancers. (I should have been wearing sunscreen all the time all these years anyway!) I also drink at least 1.5 litres of water per day which is to help minimize likelihood of mouth sores. You’re right - the WHO classified MPNs as a cancer in 2008, although my haemo says he doesn’t consider them as cancers. The one good thing about the cancer classification is that the HU doesn’t cost me anything and there would be more money around for researching a cancer than a disorder. (I guess those are two good things!)

[Trueblue8 in reply to WileyFrench]

Thanks for your reply. Good advice about the sunscreen, I'm not the best at using it, neither do I drink enough water, I guess I need to change some old habits!

[Mazcd Partner MPNVoice]

Hello Trueblue8 and welcome to our forum. I would advise you to read as much as you can on our website mpnvoice.org.uk there is lots of useful and practical advice on there which might help you, especially about ET and Hydrxoycarbamide

mpnvoice.org.uk/about-mpns/...

and Hydroxycarbamide

mpnvoice.org.uk/about-mpns/...

and this about the reclassification

mpnvoice.org.uk/living-with...

kind regards, Maz

[Trueblue8 in reply to Mazcd]

Thanks very much for your reply. I've had a look at the website and it's extremely useful and informative, which is good for me and also it's a really useful tool for explaining about the condition to friends and family.

[Cja1956]

Hello. Sorry to hear of your diagnosis. I also have ET Jak2 positive, diagnosed 11 years ago. It was 2008 And my doctor just called it a blood disorder. Wasn’t until I was also diagnosed with PV 3 years ago that he called it cancer. I’ve been taking hydroxyurea every day since until two weeks ago when my anemia became severe and he took me off of it. You can lead a normal life but you will have more fatigue as time goes on. You have to learn to take breaks and you may have to modify your lifestyle little bit. Good luck on your journey.

[Trueblue8 in reply to Cja1956]

Hi, many thanks for your reply, it's very much appreciated. Yes, I guess I will need to make some adjustments as time progresses to deal with the fatigue!

[Wyebird in reply to Cja1956]

Hi please can you tell me what your anaemia level is. Mine is 102 - I struggle with it.

[Cja1956 in reply to Wyebird]

All I know is that its based on my red blood cell counts. At my last visit, HGB was 9.7, HCT 29.4, and MCV 105.7. They have been decreasing steadily for the last few months. I hope that helps.

[Wyebird in reply to Cja1956]

9.7 and I’m 102 or 10.2. Wow. I’ve been put on anagrelide along with hydroxi in the hope my platelets will respond and my heamoglonion will go up. Unfortunately the later hasn’t despite dropping one hydrox a week. If my platelets are still dropping I’m going to reduce hydroxi again. Fingers crossed my heamoglobin will go back up.

[Cja1956 in reply to Wyebird]

I never could tolerate anagrelide. I am still on Jakafi for my PV. I’ve only been off hydroxy for two weeks so we’ll see what happens.

[Wyebird in reply to Cja1956]

I was ok on 7 a week then had to up it to 14. I was ok for about 3 weeks then started to feel lightheaded . To the point I was holding on to the wall. Not sure if it was the anagrelide I contacted my blood nurse who told me to go back to 7 a week. In one day my body slowly recovered. We reviewed my bloods about 3 weeks later. I had to increase either the 17 a week hydroxi or the 7 a week anagrelide. Because of my low heamoglobin I chose the later to 10 a week. One week I tried 3 consecutive days of two anagrelide a day. I immediately started to feel ill. Now I put the three extra anagrelide in a pill box. I take them over the course of the week. I’m fine. Unfortunately I STILL have a low heamoglobin level.

( I’m ET Calr)

[Cja1956 in reply to Wyebird]

I was looking back at my other records from my gp in March and my red blood cell count was 2.81. The other records are from my hematologist and were taken 2 weeks ago. My MCV is apparently in the high range but can also indicate anemia, I think. I really let my doctor figure it out.

[Belltech1275]

Diagnosed in 2006 . Same here always tired no matter how much I sleep. I sweat excessively doing chores. My spleen is in constant pain. Was upped to 2000mg of Hydrea a day. Then later got huge sore on ankle bones on both feet. There were like ulcers deep to the bone. Pain was like fire, could not even endure a bed sheet on my feet. Had to stop Hydrea for three months for my feet to heal. The nonce healed brought back down 1000mg one day , 500mg the next.

But since I was young my platelets were always high, but ET was still unknown in those days.

[Trueblue8 in reply to Belltech1275]

Thank you for your reply it's much appreciated

[Stephen399b]

I was diagnised with ET Jak2+ 3 years ago. Platelets then around 1m so started on 3 HU/day. They have since come down into normal range and have been on 10/week alternating 2x and 1x.

I am 68 and still actively working, but I do get tired. However so much better than what I was experiencing before I found out about my condition.

Drink plenty of water, I stay off alcohol generally but not entirely, beware the sun and keep active.

I have BUPA cover and they accept cover as a cancer patient. All knowledgeable haemotologists, especially those who understand MPNs class it as a cancer. Make sure you are seeing someone who knows what they are doing!

This is a good site with really helpful people.

Good luck

[Trueblue8 in reply to Stephen399b]

Thanks for your reply. It's strange as the haemotologist was adamant it's not cancer, it doesn't really matter to me but I don't like the inconsistency! Drinking lots of water is something I must remember to do as I've never been very good at it even before I was diagnosed!

[Wyebird]

I feel exactly the same way as you. All I want to do is doze24/7.

I have to force my self to the gym and do a couple of workouts a week then I feel closer to normal.

[Trueblue8 in reply to Wyebird]

It's strange as I'm fine when I do sport but it's when I relax I just want to sleep. It feels like a different kind of tiredness!

[Wyebird in reply to Trueblue8]

Lol I have to find the fine line between tired and fatigue.

If I don’t exercise I’m more tired. All I do is doze then I don’t sleep because I’ve dozed all day. I remember at one of the MPN forums ( I think Professor Ruben Messa) that exercise helps- 20 minutes of consistent exercise not housework, helps. So that’s my excuse for going to the gym lol.

[Hidden]

If you are under 60 you can apply for a medical exemption certificate as you are being treated for cancer. This will enable all your prescription to be free even if they are not MPN related. If you have critical Illness insurance or critical illness cover for a mortgage, you can claim on them for cancer.

[Trueblue8 in reply to Hidden]

Hi, thanks for your reply. I was diagnosed with stage 1(low grade) prostate cancer a few years ago so I already have an exemption certificate and therefore all my prescriptions are free.

[redumbrella]

Welcome Trueblue8 to our forum, I have PV Jak2 neg. Fatigue sadly is something we have to learn to live with, even though I am not presently on Hydroxy (although I think that may be about to change) I battle with fatigue constantly.

With regard to your Haemo not accepting MPNs as Cancer I would seriously think about changing. The WHO did not I'm sure arrive at this decision lightly. For myself I would have little faith in a Doctor who did not take my condition seriously.

For the fatigue learn to pace yourself and do not feel guilty if you need to rest.

Garry

[Trueblue8 in reply to redumbrella]

Thanks for your reply, it's great advice. I'm 58 with 3 young boys and consequently always feel tired but since I've been on the hydroxy it's been a different kind of fatigue. The haem dept have been very good but I think the decision not to class the condition as a cancer might well be a financial one but perhaps I'm being cynical!

[Helena303]

Hi, I’m Et CalR I was diagnosed Nov. 2018. My platelets were high at first. Started on 500. Then increased 1000. My platelets slowly went down. February they were 386. I was tired at start of treatment too.

Also had those dreadful headaches. My iron was also low 5 years prior to treatment. But it’s ok now. I think and hope the tiredness will improve after a few months. But it’s all new to you so just take it easy. Rest if your tired. It’s not easy at first and also finding out can effect the worry you feel starting new treatment. They will give you regular blood tests for now and monitor you so your under good care.

[Trueblue8 in reply to Helena303]

Hi, thanks for your reply. Thankfully, I haven't had any headaches (yet!) but the tiredness is very noticeable. I did have months of left side abdominal pain prior to diagnosis, which I now realise could have been spleen related. I'm back to hospital on Monday so hopefully my platelet count will be down now that I'm on 1000mg daily.

[Helena303 in reply to Trueblue8]

Yes fatigued!!! Know the feeling. I’m glad you never experienced headaches. It was one of my main symptoms. Thank goodness it’s calmed for now. If you say eat smaller portions through day. Also remember drink water regularly. Don’t want the chemo drugs hanging about.

It takes a while but hopefully your platelets will gradually lower. Just take each day at a time for now. Oh just remembered have to pick up my Hydroxy today.

I’m still waiting for my blood test results.

Hope my platelets on good level. I still get anxious for the letter to arrive.

[Trueblue8 in reply to Helena303]

I must remember to drink plenty of water, I've never been very good at that. Is there a recommended daily amount? I do drink plenty of red wine, not sure that helps though!

[Helena303 in reply to Trueblue8]

I do have a drink but usually Vodca but not really drank a lot as not sure it will effect my fatigue more. But drink water as well if I go out.

[Trueblue8 in reply to Helena303]

Thanks for all your replies and advice, it's very much appreciated. Really glad I joined this site, it's very useful