Mpn

[glyndale]

Been to see haematologist loads of bloods taken chest x ray and abdominal scan ,go back in 3 months. Diagnosis Thrombocytosis probably due to mpn, commenced on aspirin.Still not sure whether i have cancer or not?

[Lifam]

Did you also have bone marrow biopsy?

[glyndale in reply to Lifam]

No bone marrow biopsy as yet. Thanks for your reply.

[jillydabrat]

hi Synlig and welcome to the MPN family.

As soon as I read your post I could see you like a deer caught in the headlights at the thought of cancer.

The definition of a cancer is when a rogue ‘broken’ cell multiplies and eventually forms a tumour. In an MPN it’s the bone marrow that is broken, hence the over production of red blood cells. It wasn’t so scary to me when it was explained this way.

If you do get a diagnosis of ET or PV, it’s not a death sentence. With the appropriate medication you will live a virtually normal lifespan but you will have to live with a few annoying symptoms and be monitored for the rest of your days so please do not focus on the cancer part and certainly do not Google or you will find some very scary, untrue posts. I can refer you to the MacMillan cancer site for further, honest information rather than some of these scare mongering sites. We, here, have and are all going through the same thing and everyone will try and answer any questions you have.

I, personally think 3 months is a long time to wait. Have you talked to your GP?

Anyway, take care of yourself, no bunny jumping or sky diving lol

Hope this has helped ease your fears a little.

Jill

X

[glyndale in reply to jillydabrat]

Thanks for your reply and advice , i s

[glyndale in reply to jillydabrat]

Thanks for your reply and advice, i see the consultant next month for more info.Thanks again much appreciated.

[JackLina in reply to jillydabrat]

3 months was how long i waited following my first appointment at the Macmillan clinic, where I was told I was JAK2+ and ET. The first I knew of any link to cancer was when I received an appointment card through the post. I had to call their reception to ask why that clinic.

Still got nowhere.

I find this bad management the most stressful and worrying of any illness I have ever experienced. Kept in the dark and made to feel far more lonely and debilitated than is necessary.

[glyndale in reply to JackLina]

I havent been told much either keep asking google but am more confused than ever.Thanks for your reply and hope you get some answers .

[Hidden]

You might want to take a look here: mpnvoice.org.uk It is a great site with lots of good information.

[glyndale in reply to Hidden]

Ok Thank you.

[hunter5582]

I was diagnosed with ET over 30 years ago. Progressed to PV about 6 years ago. Still alive and kicking! There are some annoyances and issues that can be related to any MPN, but most of us live long and rich lives. It is scary to hear you have a type of cancer. Very normal to take some time to wrap your head around the diagnosis. Once you get more information and understand the diagnosis better it is easier to deal with.

Hang in there. All the best.

[glyndale in reply to hunter5582]

Oh thanks hope to get more info next month.Take care and thanks for replying much appreciated.

[Angela621 in reply to hunter5582]

Your attitude is great. My husband has ET and was diagnosed 9 years ago. He take a baby aspirin daily and that’s it. May I ask what medications you’re taking or have taken? It seems like most of the meds used to treat ET or lower the platelet count have a lot of side effects. Thanks and all the best!

[glyndale in reply to Angela621]

Just taking aspirin at the moment.Thanks for your reply.

[hunter5582 in reply to Angela621]

Historically I was on an aspirin only regimen for the better part of thirty years. There have been times when I used hydroxyurea (aka hydroxycarbamide) during spikes in thrombocytosis., but only a few times and never for more than 1 year. This last time I was on HU, it turns out that I am HU-intolerant. I now get toxic effects at even low doses. Other people tolerate HU better, some with little or no trouble with adverse effects.

It is important to understand that ALL of the chemotherapies come with both benefits and risks. We each respond differently to them. The way each of our MPNs present can also be different. Another thing that has changed for me is that when my platelets increase, it is actually my risk for hemorrhage that goes up, not my risk for thrombosis. Some of us respond this way. So - I no longer take aspirin either. This ended up being a good thing. The MPN specialist who I saw told me "You really do not want to get a brain bleed." - he took me off aspirin. A few weeks later, I was diagnosed with a hemorrhagic brain tumor. I had bled in my brain.

The moral to the story is that we are each different in both how our MPN presents and in the other medical conditions we may have. We each need an individualized treatment plan that takes into account our MPN symptom load, our underlying genetic profile, co-occurring medical conditions, and our preferences and priorities regarding our treatment. The MPN specialist I see calls chasing lab numbers "a fools errand." He favors treating each patient individually based on their actual symptoms and risks. There is some sold research behind taking this approach, but many docs do not work this way. They favor "standard protocols" where everyone gets the same treatment based on what a majority if people respond to.

It is up to the patient to decide which approach he/she wants to take. My body - my choice. One thing I have learned for sure - assertive patients receive higher quality care. Passive patients do not. I would encourage you and your husband to develop a core understanding of ET, what the driver mutations are (e.g. JAK2, CALR, MPL), and what the different treatment philosophies are.

Hope that helps. All the best to you both.

[Angela621]

That’s what my husband does. He also likes taking arginine and Salus red beet crystals, the ones from Germany. These promote micro circulation at the capillary level by increasing nitric oxide levels. He was have tingling and numbness in his calves but he feels that these supplente and the aspirin keep him symptom free. His platelet level is very high but his doctor won’t treat the numbers... just the symptoms. . Hope that helps. I wouldn’t fret over this so much although I can understand that’s easier said than done.

[glyndale in reply to Angela621]

Oh thank you for your advice much appreciated.