Haematology appt/high platelets

[Muds68]

Hello

Any advice or what to expect for first haematology appointment at guys hospital tomorrow?

I’m feeling nervous about it!

Thanks

[Raphael_UK]

Really nothing to worry about, usually a FBC blood test. Then see haemo and they will decide what’s best for you and give you time to think about what you want to do.

[EleanorPV]

I found having any questions written down helped me. Also ask if you can contact someone, after your appointment, if you think of questions afterwards.

The MPN voice website might also help. mpnvoice.org.uk/living-With...

[Eadaoin]

You will be meeting some of the best and kindest haematology experts in the country and be treated with great kindness and understanding. I know - I have been under their care for 20 years ! Trust yourself to them.

[23938112]

This can be rectified with medication. Nothing to worry about.

[Ebot]

Relax! You are in the hands of some of the best experts in the world. I don’t know what it will be like in these COVID times but the department itself is a pleasant place to be, well run and with friendly staff. Lots of patients are regulars so it’s very different from many outpatient departments. And Guy’s generally seems a well run hospital.

You’ll get a FBC first off - there are dedicated phlebotomists (and pharmacists) within the department - so no trailing around. Further tests like an x-ray or a bone marrow biopsy might be proposed. Without fail, in my experience, everyone is very keen to listen so definitely go prepared to ‘tell your story’ and most certainly have your questions ready.

Even if you don’t see the Prof on this visit be reassured that this is a tightly run ship and every case is discussed and reviewed by the team. The CNSs - Clinical Nurse Specialists - Claire and Yvonne - are both wonderfully supportive and incredibly knowledgable.

All the best.

[Wyebird]

Don’t be nervous. I transferred there within 2 months of diagnosis. I was a mental mess. They were amazing. The heamo was sympathetic. I was given my own nurse, who had continued to prop me up on my journey.

I’m in awe of the clinic. I trust them completely. Go there knowing you will be under one of the world’s specialist and her team.

Best wishes

[hunter5582]

If you are seeing one of the MPN Specialists there, you will certainly be in good hands. The first step will be to determine whether the thrombocytosis is primary or secondary. Secondary = treat the cause. Primary = Essential Thrombocythemia (ET). It is very important to NOT panic when you hear the "C" word (cancer) in regard to this condition. ET is a long-term manageable condition with which most people live a normal lifespan. Many people with ET, depending on their profile, only need monitoring with perhaps a low-dose aspirin. You will get a host of blood tests, including one for the common MPN driver mutation(s).

I was diagnosed with ET over 30 years ago. It progressed to Polycythemia Vera about 7 years ago. I will soon be celebrating my 65th birthday. I have had a rich life and continue to do so. There have been some issues to manage, but they have been managed. The things I have learned that are particularly important are:

1. MPNs are rare disorders with unique presentations. Each person needs an individualized treatment approach based on their MPN presentation, including co-occurring medical conditions.

2. Assertive patients receive higher quality care. Passive patients do not.

3. Knowledge is power. Educate yourself about your condition and its treatment. Do not make any decisions in ignorance.

4. Your personal preferences matter. Risk tolerance, personal beliefs, perception regarding quality of life issues are all important in making treatment decisions. It is your preferences that should drive treatment decisions.

5. Know that even the leading MPN experts do not all agree on treatment approaches to MPNs. There is more than one option for how to approach treatment. It is important to review what all of your treatment options are, look at the benefits and risks, before making decisions.

I hope this helps. Please do know that if you do have ET, it can be managed. Do let us know what you find out. This forum is great place to get information and support. We are truly stronger together.

[Muds68]

Thanks everyone

Staff are lovely and wasn’t that bad at all. Had more bloods tests and one for jak2 and chest X-ray and going back in 3 weeks to get results and maybe more tests! x

[Sabramcq]

The only thing I would add to this is that over the last six months since the first time I had elevated platelets, my hematologist has worked through a decision tree that she has worked through many times. In addition to ET and secondary/reactive Thrombocytosis, you may be checked for iron deficiency. As already said, whatever the outcome, this is very manageable. My prayers are with you.

[JaK2ET]

Did you get a diagnosis from Guy's Hospital? I hope you are getting any help you need ...