Are there any minimum standards that we can expect in the way our mpn's are managed?

[Foss33]

I have been interested to read everyones varying views and opinions on how well they feel their condition is managed, it would be interesting to know if their is a minimum criteria we can expect for example:-

Bone marrow biopsy - should we have one at time of diagnosis and how frequent thereafter?

Physical examination - how often should we reasonably expect out spleen to be examined?

What information can we expect to be given at each appointment?

I have to ask for my blood results every time otherwise I am just told if venesection is required or not and when my haem would like to see me again.

Any feedback would be interesting to read, after being diagnosed with PV for 18 months now it still amazes me to read about our differing experiences, I know each patient can be quite different in symptoms and treatment but surely there should be minimum standards that we can all expect.

I make sure now that I see the same heamotologist at every appointment and as a result I am developing a good relationship with her now and feel better about my care than I have in the past. I feel more comfortable about asking questions and I am more trusting in her answers than I have been when I have asked questions to others in the past. I have never had a bmb and although I don't particularly want one as I understand saying they are unpleasant is an understatement, if this had a positive effect on the monitoring of my condition I would obviously have one. I have had my spleen examined twice, once at the time of diagnosis but I was 38 wks pregnant and therefore baby was in the way and I have had one since.

Take care everyone - hope you are all enjoying the sunshine.

[Aime]

Hi, I am glad you have raised these points. I have PV, diagnosed last year only treated by venesections and antihistamines so far but have never had a bone marrow biopsy either. Like you I don't particularly want one but if it is necessary for a better diagnosis or to gauge progress of my pv, then I would say yes to it. My last post regarding leg cramps does make me wonder how much specialist knowledge my haematologists have!! I have had an ultrasound to check spleen size which was okay at the time but I see from other posts, that the size can change in quite a short space of time. Should ultrasounds be a regular exam we go through? I have also had a ct scan because at that time, night sweats were a new symptom for my PV. It was okay too.

I think the idea of a list of minimum criteria for tests and treatment is a good idea. Perhaps Maz can help.

Kind regards, Aime

[KevinJH]

In two and half years of being diagnosed with PV, I had an ultrasound to check the size of my spleen which was ok at that time. The only other time was when there was a delay in my blood results coming through and the haem said something like "well, while we're waiting let's just check your spleen for any swelling....." and that was it. No mention as yet either of a bmb so assuming that'll be down the line sometime if and when things start going awry. And finally, the hospital gave me an 'Hydroxycarbamide User' leaflet that I present to the haem. who then writes down the results. Nice touch that as I'd always kept a record before on a loose piece of paper but now it's on a purpose built sheet that I can't miss

Would be nice to take the best of each and have a standard set-up across the board but don't suppose we'll see that.

All the best, keep hydrated and mind that Sun

[StuEP]

Hi

I have been asking the same sort of questions for a while now, both at my hospital and on this forum. I think you can see from the responses so far that there doesn't appear to be a consistent approach. From asking around and from my own experiences, it seems that the treatment you get depends on who you see and at what hospital.

To answer your question; there are, indeed, guidelines for the management of MPN issued by NICE (National Institute for Health and Care Excellence). If you do some googling you'll find the recommendations. Whether hospitals follow these is another matter.

With regard to a bone marrow biopsy, I discussed this with my haematologist some months ago. His opinion was that there was no point in doing one to rule out myelofibrosis because even if they detected signs of it, it would make no difference to the treatment they were offering (hydroxycarbamide). Of course, it would make a difference to me to know that I have/have not got it, but there you go.

Regards

[ETphonehome]

Some great points Foss33.

The problem is that the majority of newly diagnosed MPN'ers are often ignorant or ill informed about their condition so don't know what questions to ask their haematologists.

A set criteria for medical professionals to follow would be fantastic but for it to become a reality would require some significant effort from MPN'ers such as ourselves in partnership with some of the more forward thinking specialists in MPN care. Dr Ruben Mesa ( Mayo Clinic, Scottsdale, Arizona US ) is excellent and has lots of excellent videos on you tube about all aspects of MPN's and patient care.

Most haematologists would recommend a Bone marrow biopsy at diagnosis and as a general rule of thumb another only if your blood counts change. Personally I think there is a case for a BMB every 5 or 10 years but I know a number haematologists do not share that view.

Some argue that as the procedure is invasive it carries a risk and so it should only be done if absolutely necessary. There are a lot of scare stories regarding BMB's, I can only say I had mine without any conscious sedation and experienced minimal discomfort and would not be overly concerned about having another.

Many believe however that our blood counts alone provide sufficient information.

I don't think it's unreasonable to expect a spleen palpation at every haematologist appointment as It's a very simple procedure and only takes a few minutes.

Seeing the same haem at appointments is preferable for exactly the reasons you mention. It provides consistency and a continuity of patient care but unfortunately with the the NHS it's often a case of seeing whichever haem is available on the day which is not ideal.