had my face to face with my haemo consultant last Weds and from what it seems favourable results from my hydroxy drug prescribed dosage. The dosage now being lowered as a result. I was advised that my blood sample appointments would be now extended to once a month sampling. I disputed this, as I am only 6-8wks into my MPN journey. I feel strongly that until I have at least 6mths blood sampling under my belt, whereby a clear pattern has been shown. I should continue with my current 3 within a month blood sampling appointments. As much as I have received great service from my local trust. I have asked to be referred to Guys/St Thomas's for a more expert diagnosis from the MPN specialist team headed by Claire Harrison & Patrick Harrington, as they are at the fore front of trails and treatments for MPN's.
I feel by taking an element of control over my treatment gives me a more settled feeling that I am doing right by me.
I wish everyone well on our journey with this condition and hope that with all the research happening, they find a way of dealing with it in the future.
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Micky1956
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The second opinion from Guys was the best decision I have made.The care is second to none. I'm currently going through the raft of testing, most of which I've never had with my local trust.Good luck with your journey
I share your concerns as I went thru a similar situation with blood test frequency a few years ago. Personally, I think near term twice a month for you is not unreasonable. I'm almost 5 years into this journey and I still can get myself pretty worked up until I see the results of the bloodwork. I currently get a cbc once a month and a more comprehensive panel every other month. Fortunately my numbers have been stable with HU alone and no longer phlebotomies. I also have an attentive specialist who makes my life much easier.
Wishing you good luck. You are absolutely correct to pursue this course of action
Absolutely the right thing to do. I’ve just had my first appointment at Guys with Dr SRISKANDARAJAH, and it was great. I have ET and am 74 and still working. I have been well looked after by by haemo team at my local, but almost no F2F so I had absolutely no connection with the team. At Guys I felt ‘seen’ - also I had one ‘shed’ load of different blood tests that showed I was lacking in red blood cells so I’m now on iron tablets for the next three months, which in itself showed me that my care at the local hospital had not picked it up. It really is like Hunter says we have to be vocal in our struggle to be ‘seen’. Look forward to hearing how your appointment goes.
Glad to hear about your favorable outcome. You are correct to think that the CBCs should be more than once/month during dose titration. The standard protocol is CBC every two weeks until stability is achieved. You also need to do regular CMPs to monitor kidney and liver function while on hydroxycarbamide.
Getting a second opinion from a MPN Specialist is an excellent idea even when you are satisfied with your current care. No one should ever make major medical decisions without a second opinion. There are a number of us who use a shared-care arrangement where we make treatment decisions with a MPN Specialist and execute the decisions with a local hematologist. This has multiple benefits, including getting a second opinion at every stage of treatment.
I agree reducing to 1/month that soon is too fast But looking back my Dr did even longer spacing while I was still out of range. Using my PLT as an example here the first green dot is 3 months after the last yellow one, meaning Dr didn't check during a period of rapid change on HU. But my first two months were frequent, as you are also seeking.
If they are reducing your dosage it seems your counts are in range and stable, is that right?
I have had two stable readings only. Not having a blood test for a month is a long time, and a lot can happen in a month. I am happy they have reduced my Hydroxy, but will be happier if and when my referral takes place and Guys have confirmed this is the right course of action.I do wonder if cost had anything to do with it, but I really hope that isn't the case.
Your point is good, even as your counts are stable short term, upon changing the dose more frequent tests are especially appropriate.
CBC or FBCs are low cost so that should not be a problem for NHS. If you can't get Dr's cooperation soon enough, paying for one could make sense if private providers offer low cost tests in UK. In the US one can get a private CBC for about $35.
It is not any advantage to have frequent blood tests. The treatments of drugs take a while to show response in our bodies . We are all anxious when first diagnosed but from experience every 12 weeks works well on readings unless you having a reaction to medication . Always get an MPN as they are the experts in our disease & treatment .
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