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MPN Voice
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New Diagnosis

Hi all, my husband has just recently been diagnosed, he is 50 and we have 2 young children and he has an older daughter. Our minds are spinning a little at the moment.

I am a talker he is not so trying to find a middle ground at the moment. Whilst wondering if we tell anyone and when.

Treatment at the moment is just aspirin and monitoring, which is good.

We are back to the consultant in a month and was wondering if there is any thing specific we should be asking or need to know?

Is this forum suitable for the wider family to access or for those with a diagnosis?

Thanks in advance

E

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Hello E, we can all understand how you and your husband are both feeling at the moment, it is a very scary time when you are first diagnosed. I would advise you both to read as much as you can on our website mpnvoice.org.uk, there are also some great stories from people with MPNs and also videos of patients and consultants talking about the different MPNs. mpnvoice.org.uk/living-with...

there is also a lot of practical advice on there including communicating feelings and telling people

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

your wider family can access this forum, it might help them to learn more about your husband's MPN and how it will be affecting him, and you, I would also advise them to read information on our website.

Best wishes, Maz

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Thank you, we found this forum from the website and one of the first thing I did was read people's stories, very encouraging

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Hello E,

I would just like to welcome you to our friendly and supportive forum.

Which MPN has your husband been diagnosed with? You will get a better response from people who have been diagnosed with that particular MPN if you say.

There are some partners of MPN patients on the forum - probably because of the very reasons that you’ve mentioned.

Your husband at 50 is young, so aspirin and monitoring is the usual treatment for ET - unless his symptoms are so debilitating, or platelets are above 1500, or he has other health conditions that would impact his diagnosis. I can’t comment too much on PV (I have ET).

I would say, educate yourself as much as possible from reputable sources such as this, be wary of some sites. Also, take time to absorb the diagnosis yourselves before you consider who to share this with.

Mary x

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Thanks and yes it is ET x

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Hi E, Welcome. My first bit of advice is to try not to panic. I know that may sound impossible. We’ve all been there, and almost if not all of us panicked at first. But then we learned that our lives really don’t change much. There are meds that reduce risks & problematic symptoms for many of us. And lots of folks here have gone along fine for a very long time. Now that there’s so much exciting research & new info, things are very promising. If you have any questions or need moral support, this is the place to come. Don’t ever hesitate about posting. Take care. Katie

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Hi E I too found the initial diagnosis very confronting being 41 at the time especially since I had some fibrosis of the bone marrow and it wasn’t clear where things were heading. 12 years on I have been on hydrea and aspirin all this time with no effect on my lifestyle whatsoever.

Keep in mind a lot of people with et have a normal life expectancy.

I didn’t tell many people other than family and I referred to it as a blood disorder and quite frankly didn’t know it was classified as a cancer for a long time.

My advice is get a good haematologist who will be flexible in respect of your treatment options. I recently had an experience where my new dr wanted to put me on a different regime to that being used by my previous guy who retired and the anxiety was like at the start. I have now changed to someone else and all is well.

Whilst this forum is very positive and contains a lot of good info, it also contains a lot of things that may never happen to your husband that are frankly quite scary, so pick and chose what you read.

There are also some great YouTube clips of haematologists talking at various forums that puts et into perspective in respect of the mpn spectrum. Basically if you are going to have one,that’s the one you want.

Would strongly recommend making sure hubby is eating well and keeps up his exercise and meditation to keep him in the low risk profile.

Good luck to you both

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Welcome to the group,

I can honestly say when my husband was diagnosed at 41 I thought of the worst.

After joining this forum it really reassured us both.

My husband has polycythemia PV he was fine for 3 years but he was needing a lot of veenesections , so he opted to take hydroxy. He's been on this for two years now no side effects and has a venesection every 3 months.

We still live our normal life he was full time only thing he suffers is tiredness.

Hope you find all the answers you need.

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Hi, it is quite scary when you are first diagnosed with ET, especially if you Google it! (A lot of which is complete rubbish) You'll get loads of info from this forum. I have found it very reassuring. I was diagnosed with ET seven or so years ago, I must say I have a heck of a lot more trouble with my arthritis than the ET! There are different drugs to to treat it if/when that becomes necessary. I was on hydroxy for a few years, now on Anagrelide. Any questions - however daft you might think they are - can be answered on here.

Wishing your whole family all the best

Lizzie

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No treatment needed at the moment other than aspirin and regular blood work to monitor playlet levels.

Thanks for replying

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Hi E. I find myself in the same position as your hubby...watch and wait. Finding the uncertainty really difficult to deal with. Also having trouble finding detailed info on what to watch and wait for! Has stem cell therapy been flagged for your hubby? S

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Hello E,

In addition to the other comments, I would add to learn about the mutation involved, if it is know. The type of mutation can impact the disease, potential complications, progression etc.

Also, finding a compassionate, and knowledgeable doctor. The relationship will be a long one. It is important to feel like you can ask questions, and be heard.

Take good care.

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Hello E,

I was diagnosed with ET at age 50 and was treated with aspirin only for 23 years before having to have something that would modulate the bone marrow. Have now had interferon for the last 5 years. Platelets and other bloods now normal. Lifestyle a bit hampered by the interferon but still ok. I was told most ET patients live almost as long as those without and of course worrying over what you can't change is a waste of your energy, so encourage hubby to eat as healthily as possible and exercise sensibly as well and enjoy his life as if everything were completely normal, and a lot of it will be. Best wishes----it will mostly be ok, even if at first it is a scary shock.

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Thank you that is very reassuring

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