Final results

[Scrollernut]

I got all my test results in and it’s. E T. I’m so grateful to my Lord it’s not more serious. Going to be taking Hydroxycarbamide. What should I expect now? What’s next? Hoping are staying safe.

[Threelions]

Hi,

I was diagnosed about a year ago and inject Interferon as treatment.

I’m still working full time (although not at the moment) and I can honestly say nothing has really changed.

Do make sure that you drink lots of fluid every day and exercise regularly.

Other than that listen to your haematologist and carry on with things.

Oh, and lastly use this fabulous support group if you have any issues or worries.

God Bless

X

[Scrollernut in reply to Threelions]

Thanks 😊

[Mazcd Partner MPNVoice]

hi Scrollernut, now you know your diagnosis you can move forward, and remember, we are all here for you. Maz

[Doggy1903]

I have been taking hydroxy for about 2 years for E T. I hope you find no problems. I have tolerated it very well with no side effects. Hospital staff are fab and look after me very well. Bloods checked every 4 months and dose then adjusted.Take care.

[mhos61]

Glad to hear you’re grateful with the outcome, I understand that. Even though I didn’t want an ET diagnosis, it was the better outcome of all possibilities.

You will now be monitored to check your condition, but also to check if your treatment is working. This will involve blood tests usually around every three months. According to your blood results, your hydrea may be adjusted. I started hydrea at one a day, I responded quickly. I now take four a week. Then you’ll just get on with living!🤗

[Jennytheb]

Hi, just read your post and I have been diagnosed with Jak2 ET 6 years ago, also have menieieres disease, I am on Hydroxycarbomide (started out 4 a week but now on 3 a day 500ml) and Clopydogrel and normally have no side effects at all and have worked but now semi retired. The only concern is now and how our immune systems are likely to be affected, thus the need for food deliveries. Also are people "cleaning" packaging as one suggested to me we should do? Surely we would all go mad if we take this up too!

This is a wonderful site where we can rant a bit and also get a huge amount of advice and help. Well done for HealthUnlocked!

[mhos61]

The issue with COVID-19 is it is a new disease and even the experts haven’t got all the answers.

As to how it will affect our immune systems is anyone’s guess. We’re now seeing some young people with no underlying health conditions being adversely affected!

For us with MPNs, it’s even more complicated, as we fall somewhere in a spectrum, those with ET at the lower end up to advanced MF/AML. Medications, age and additional health conditions also have to be considered. I can see why this might be a nightmare for the NHS distinguishing who is ‘high risk.’

I think the only sensible thing we can do is follow the advise from the Government, MPNVoice and your health care provider, if they have been in contact with you.

I took the plunge and braved it in the supermarket yesterday. I drove there with the idea if it was busy I wouldn’t go in. I was lucky, it really wasn’t too bad. The staff were really good monitoring ‘social distancing’ at the tills. I wore surgical gloves and wrapped a scarf around my mouth/nose. I’ll be honest though, I was extremely relieved when it was done.

I did find myself for the first time cleaning the packaging, don’t know if I’m going over the top or not?

[piggie50 in reply to mhos61]

I clean packaging too. X

[Anag in reply to mhos61]

I also clean the packaging. In fact, entering the car, I sanitize my gloves, door handle, steering wheel, continue with the gloves till all is wiped down/packages thrown away, all in containers, then wash and sanitize gloves, dry them, taken off inside out to dry.

Some young, macho at the supermarket wouldn’t keep his distance at the cash on Tuesday and the elderly lady asked him to move a meter away from her as the law in Austria now requires. He started and continued making fun of her. Others ignored the situation. He then started coughing on her. I was packing and shouted that someone call the police and the management. He would get a fine of €3600 for doing something like that. They've already given out 1700 fines to such asocials in the last 2 wks. It was traumatizing. It’s the 5% that are not complying that endanger others.

I will not go shopping again. I’ve had bronchitis an pneumonias for almost 50 years, swine flu almost got me. We’ve already prepared a quarantine room at home in case any of us get it. Meanwhile, we’re really enjoying family life.

Please stay well. Cheers Anag

[carlyjo]

Good that you have an answer . I had similar experience when I got my diagnosis.Knew it was going to be ET or something worse. So was grateful it wasn't worse. That was last Jan. It's been a bit of a journey . The hydroxcycarbomide took me a bit of getting used to .But I've heard people on here say it's a miracle drug and I now think it is . Even when I had an increased dose .(3 days -2 a day .Rest of the time , just once -which is quite usual from what I've seen on here ) Everyone is different of course but you'll hopefully be fine on it and pretty much be able to get on with your life 🙏🙏

[hunter5582]

Sounds like you have a good attitude about the ET diagnosis. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Now age 64, still having a good life despite the MPN. There are things you need to do to manage the ET. It may or may not require cytoreduction based on your presentation of the ET.

Regarding the hydroxycarbamide (aka hydroxyurea) you will hear mixed commentaries. Some people tolerate it fine for many years and benefit from it. Others (myself included) are HU-intolerant and experience toxicity even at sub-therapeutic doses. The good news, is that if you do experience adverse effects, they usually go away when you discontinue the HU. There are some things to know about managing HU, particularly if you are in a relationship with a significant other. Do know that many people do well on this medication. There are other options if you need cytoreduction and HU does not work out for you.

I did not see mention of whether you are JAK2 positive. This is a significant part of your overall condition. I have actually had more trouble with the secondary inflammatory conditions than with the ET/PV itself. Despite the 30+ years with ET/PV, I have never had a single incident of thrombosis, just some mild splenomegaly. I have however had significant issues with systemic inflammation: GERD, osteoarthritis, fasciitis, insomnia, eczema, etc. If you are JAK2 positive, learning more about the role of inflammation and how to manage it will be very helpful.

Do please stay in touch and share what you are learning as you travel this journey. All the best to you and stay well.

[Scrollernut in reply to hunter5582]

It’s jak2v617f. Guess that’s the particular mutation. Still getting my head around all the abbreviations and what all this means. Thanks

[hunter5582 in reply to Scrollernut]

JAK2 v617f = Janus Kinase 2 mutation, v617f variant. The JAK2 mutation has negative impact on the JAK-STAT (Janus Kinase/Signal Transducer and Activator of Transcription) pathway. The JAK-STAT pathway is one of the body's kinase systems. It controls a number if things, including: hematopoiesis, immune response, and production of inflammatory cytokines. The JAK-STAT pathway is involved in both tumorigenesis (neoplasms - abnormal cell growth) and apoptosis (cell death - which is a good thing when it occurs as it is supposed to).

Your JAK2 mutant allele burden impacts the course of the MPN. This is the percentage of genetically abnormal cells you have present. It should show as a % on your labs. If you do not know it already, do find out as it does matter. People with ET tend to have the lowest, people with MF the highest, people with PV in the middle. (My allele burden is 25%). Broadly speaking, less than 50% is considered indicative of a more favorable course of the MPN.

Lots to learn. Fortunately lots of time to learn it. I am thinking I may have to go back to graduate school and get another degree.

All the best.

[Scrollernut in reply to hunter5582]

Nope. Just 2 sweet little doggies. 😍

[hunter5582 in reply to Scrollernut]

Your doggies will not need to worry! Not too big on the little doggies myself. When I am ready for another dog, I would prefer a Belgian Malinois or maybe another Labrador Retriever. The Malinois are just plain cool, intelligent, highly trainable working dogs. The Labs are just plan lovable big goofs. They think everyone loves them. Labs also tend to think they are lap dogs. They are great for retrieving waterfowl too. Our old dearly departed lab loved retrieving things, especially in water. That crazy dog would jump in the river in the middle of a February blizzard!

Hope things go well for you (and your doggies) as you travel this ET journey.

[JP1952]

Hi Scrollernut

I was diagnosed with ET last November, so 5 months. On hydrea and asprin. My diagnosis came out of the blue but I soon got used to it. Initially bloods and appointments every 3 weeks, now 6 weeks, and hydrea upped each time. My mouth gets a little dry in the night and I struggle more when jogging ( but hey I'm 68 so I guess that was going to happen anyway) so I just slow down. Apart from that no other side effects. I think the advice given me and what I would pass on is take all the treatments offered and take good care of yourself as in good diet and sensible exercise. ET is manageable. This forum is a wonderful help and support. Like you I feel lucky not to have been diagnosed with anything worse.

Take care

Jeanne.

[Scrollernut in reply to JP1952]

That’s the way I feel. If I have to have cancer this one seems to “be the best kind to get”. 😂🤪. It could be soooo much worse.