Non caring attitude of doctors.

[Rocket2017]

Hi all I was diagnosed with ET JK2 8 months ago. After various symptoms for years being put down as imagining it ,finally put through to a doctor at the hospital. My palette count started at 560 in three months it went to 700 . My latest is 990 . I'm on aspirin daily and am blood tests every month docs every three. Am told that there nothing they can do for symptoms. If my palettes rise to more than 1000 they will maybe consider starting other treatment. I feel confused , scared all the usual. But finding this site has helped enormously . Hopefully we can all help each other through this with understanding and support that we all do badly need. X

[Ebot]

It sounds as if while the doctors are following the standard protocols in responding to your platelet count, they are falling short on the all important ‘listen and respond’ element. In particular, what symptoms to you have that you feel they are not responding to? In my experience, there isn’t always a magic wand but there are usually options to ameliorate whatever irritating or distressing symptoms there are. If nothing else, a sympathetic ear can do wonders.

Are you with a specialist MPN haematology team? I think most people here find they have a better experience with clinicians who are really familiar with this disease. Also, if you can, attending one of the MPN Patient Forum events can be an immense help and a great source of information.

Finally, there isn’t always a direct correlation between platelet counts and symptoms. Drug intervention can make a difference. However, for anyone under 60 and otherwise healthy, clinicians will often wait until platelets reach 1500 before they consider drug treatments (other than aspirin). But all this should be subject to conversations with your clinical team including the CNSs. Wishing you well.

[socrates_8]

Hey Rocket... :-0)

Yes, it can all be a tad scary at first... And you are right of course to be concerned. Ebot, has made some great suggestions below, and especially the one about finding a dedicated MPN Specialist, who might be able to explain things to you a little better than what you seem to be finding at the present... (?)

To be fair to the medical fraternity, however, many of them are simply ignorant of just what MPNs are!

The 'Driver' mutations that are said to cause MPNs: Jak2, CALR & MPL

Were only really discovered over the past 1.5 decades, and therefore, most GPs know little or even nothing of them.

My present GP, is my third, however, he was willing to take the journey with me, and we learn all things MPN together these days etc...

I also suffer from very high platelets, and I am on treatment, and they are still c. 900s most of the time... So do try not to be overly anxious, and if necessary, seek a further opinion, but make sure that the person is an MPN specialist like Dr. Claire Harrison, for e.g. at St Thomas & Guys etc...

Maz, MPN Voice's website co-ordinator, might know of some others if you are located to far afield... perhaps email Maz too...

In the mean time, do try to stay calm... If I may ask, how old are you? Usually, when one is much younger the medical fraternity are loathe to want to start medications too soon, and not w/out good cause too etc...

Best wishes

Steve

(Sydney)

[Anag]

I spent years complaining and finally had my third light stroke as I was finally diagnosed at 909,000. I spend 8 years of misery, which almost cost my marriage and I wasn’t able to be the mother or friend that I could have been. Please find a good doctor that listens and tries to find solutions without piling you up with more meds for symptoms. We all find our way. It takes a while. The other too gave very good advice! Yes. Get to a forum and share! Share, share! All the best!

[Cja1956]

What are your other symptoms? Here in the US, 300,000 to 450,000 is normal. 990 sounds really high to me. When I was first diagnosed with ET, I was getting terrible headaches for a while but nothing helped. My gp took some tests and my platelets were about 600,000. He referred me to a hematologist who did a bmb and diagnosed me. He immediately put me on hydroxyurea and anagrelide and my headaches went away. When my numbers went into the 300s, I stopped my meds and ended up in the hospital at 800,000 and a blood clot in my spleen. So I’m thinking maybe you should get a second opinion.

[catkinspolymer]

hi Rocket, my experience of local Doctors , if they have never seen a disease then you cant have it and are therefore imagining it. all the best Town Crier Et for 30 years .

[JackLina]

Anag's advice is the best and you need to take it seriously. I suffered so many TIAs over 20 years and a stroke in 2012 but it was only when I put myself in hospital following 3 TIAs over a week that I was actually tested. That was only because t last, I met a doctor who was interested and a pharmacist. I was given every test under the sun and it came up with MPN ET JAK2+.

GPs know nothing about this and therefore struggle. So many will try to deal with the situation rather than refer you because they have no idea. I was treated as an awkward patient and because I have difficulty taking medication with out my body rejecting it, I was a 'difficult' patient. Not so. I just couldn't tolerate being virtually on my back with head and body pain.

Looking back over various blood test, I have had the 'condition' for many years. Shame it was never spotted! P.x

[hunter5582]

You are getting great advice from the forum. The high numbers are scary, but risk of thrombosis does not directly correlate with platelet levels below 1 million. The trend is now to treat symptoms, not blood cell numbers. A few things worth knowing. If your JAK2 mutant allele burden is less tan 50%, then you have a more benign/favorable prognosis. If this has not been checked, you can get the JAK2 Mutant Quantitative Analysis. (It is a standard blood test). There are also other drivers for MPNs - CALR and MPL. It is possible to have more than one driver, but it is very unusual. There are also non-driver mutations that can effect the course of the illness (e.g. TP53, ASXL1, IDH2, etc.) The role of non-driver mutations is under investigation and not a part of standard practice at this point. the other issue in play, is that the over-activation of the JAK2 signaling system can increase you levels of inflammatory cytokines. The increased cytokine load is thought to be responsible for many of the secondary symptoms we experience. (RANTES, PAL1 - insomnia)(TNFa, IL-6 - hypertension). Again - this is emerging research and not a part of common clinical practice. While we wait for this promising research to find better solutions for MPNs. it is really important to connect with providers who are true MPN experts. Here is a link to some patient recommended MPN-expert docs mpnforum.com/list-hem/ . Agree with what was said below about the quality of response you seem to have received from your current providers. While the treatment recommended may well good sense for your unique profile, the way the recommendation is delivered makes a HUGE difference in how you manage finding out you have a MPN. You deserve more sensitivity and support than it appears you received. Hope you get what you need going forward. Do not be afraid to assert you right to have your needs and concerns addressed. Systems of care will often ignore those who do not advocate for themselves.

[Dazakella2010]

Hi hunter

My numbers are quite low at the moment (486) but I’m feeling so poorly.... constant headache for 16 weeks this week.... randomly feeling sick and extreme fatigue