Newly diagnosed ET

[JB_123]

Hi, I’ve recently been diagnosed with ET and still awaiting treatment (Chemo tablets) for the middle of this month, does anyone have any tips and guidance as to what to expect from it.

[sweetpea19]

Hello and welcome I have ET and take Hydroxy and I tolerate it well. It can be a juggling game with the dosage as I was started on a low dose and now take 100 mg daily ( 2 capsules

I’m pretty stable at 500 platelet count

Most people tolerate it well and have no side effects. Some don’t , but there are alternatives

Fatigue is quite a common side effect of which I do get . I feel better having taken it

There is plenty of information to read up on this and Mazcd will no doubt point you in the right direction .

Drinking water and exercise is beneficial and I’m sure there will be lots of support and tips from people here

Wishing you well on your MPN journey and most of us can lead a relatively normal life

Also an MPN specialist has more in depth knowledge for advice and treatment .

[hunter5582]

Hello and welcome to the forum. This is a great place if find support and information from a patient perspective.

MPNs are rare disorders. Most physicians, including hematologists, have little to no experience with them. It is important to consult with a MPN Specialist to receive optimal care. Here is a list. mpnforum.com/list-hem./

At age 55, cytoreduction is usually not the recommended course of treatment unless you are symptomatic or fall into a high-risk group due to a cooccurring medical condition. The age protocol for high-risk is either 60 or 65, depending on the protocol. The norm for age 55 is aspirin-only and monitor.

There are actually two first-line choices for the treatment of ET, hydroxycarbamide (hydroxyurea) and PEGylated Interferon. We each respond differently to these medications. Some tolerate one but not the other. Your doctor should have reviewed both of these choices with you. Here are two articles on this topic.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

I have a preference for PEG over HU based on a review of the literature and my experience with both. I was unable to tolerate HU, experiencing toxicity even at a very low dose. I have responded quite well to PEG and have not experienced any adverse effects. Not that is my experience. We are all different in how our MPN presents and how we respond to the meds.

Here are a couple of resources to start comparing the two options you have. There is a lot more information available if you are interested.

drugs.com/monograph/hydroxy...

drugs.com/pro/pegasys.html

All the best to you.

[Michali45]

Hi, I’m in a similar position, newly diagnosed with ET. I have been on Hydroxycarbamide for nearly six weeks now as they wanted to reduce my platelets quickly. They were at over 1500 at one point and are now in the 400's. I am tolerating it quite well. A lot of my concentration is on my painful broken wrist which is slowly healing so I don’t think about the pill too much. I was given a list of possible side effects and I think my main concern is this is for life! I had follicular lymphoma in 2006 and treatment lasted for six months and that was it. So I think my main concern is that this is a lifelong illness. I wish you well. Let us know how you get on. Be kind to yourself and eat well and exercise. Before I fell I walked miles every day and I’m now getting back into that, which helps a lot with my concerns.

[Mazcd Partner MPNVoice]

Hello JB_123 and welcome to our forum. I would advise that you have a look at the information on our website about ET and Hydroxycarbamide, hopefully that will help you.mpnvoice.org.uk/about-mpns/...

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

Many people take Hydroxycarbamide and tolerate it very well, though some people don't, hopefully you will be fine, I myself have ET and have been taking Hydroxycarbamide since 2008.

best wishes, Maz

[Threelions]

Hi JBJust wanted to say a huge welcome to the group. I’m ET as well.

I’m on peg (injection rather than tablets) but, like many in this wonderful group, tolerate the medication ok.

One of the key things is staying well hydrated.

We’re all here for you if you need any guidance. Let us know how you get on.

Mark

[Janis12]

Hi, it's a worrying time when first diagnosed and there is lots to learn. I was diagnosed with ET about 18 months ago no symptoms but just found as a result of a routine health check. A big shock as I lead a healthy active lifestyle and I am now 63 years old. I was put onto hydroxy and clopidogrel straight away which brought my platelet count down quite slowly after a bit of tweaking with the dosage. The first couple of weeks taking the hydroxy caused some nausea and I also noticed my hair thinning but all of that settled down fairly quickly. Apart from some stomach irritation I am coping well with the drug although I worry about its long term use. I do suffer some fatigue but no more than some of my friends who are the same age and do not have ET so I think this side effect is difficult to measure. I continue to be active cycling and walking regularly, attending the gym and pilates classes and I also ride horses. So apart from feeling the general ravages of getting older I would say life goes on as normal and I tend to bury the diagnosis under the carpet. Good luck and keep fit. x