Update - pending PV Dx - Received copy of records

[LittleLuna]

Hi all

I have started to receive my patient records as requested. I have gone through them and pulled out lab results going back to 2016. Looks like Lab sent a request to my GP in March 2020 to refer me to Haematologist but this was not done. It took another 1.5 years before a blood test was done in Sept 2021 at which time another referral request was passed to GP and this time it was done thankfully. I expect Covid hitting the world was reason but this should not have stopped referrals being processed.

Anyway, I have attached blood results to date. Latest letter from my 3rd haematologist does not mention "abnormal BMB". It states "the aspirate was actually dilute" and trephine test is currently pending. He told me trephine showed small abnormality. Why this will take 3 months for pathologist to review, I am unsure.

So, referral done to private MPN Specialist and pulling my own records together for consultation.

I have attached image of my blood results since 2016. Consistent raised HGB/HCT until my most recent test with HCT normal.

Strange, weird world of navigating health care system. I have so much I need to learn so I know what I am asking, what I am being told in a consultation. I need Hunter or EPguy there lol. Thank you both again for all your support and sharing of knowledge.

[EPguy]

Your HCT/Hb has been high if you have MPN. Others look really nice.

The BMB note about "dilute" could be related to this problem:

<< Aspirating more than 0.3 mL risks diluting the sample with peripheral blood and thus is not recommended.>>

emedicine.medscape.com/arti...

So the equivocal result could be from an improperly obtained sample that got blood in it. You should ask your Dr more about that if you can.

--

BMB has two parts, a liquid extract and a thick material extract.

<<Together the aspirate and trephine biopsy provide a complementary and comprehensive evaluation of the bone marrow.>>

health.ucdavis.edu/blog/lab...

Aspirate is like a reverse turkey baster to suck the liquid up. I think BMB would be less painful if they stopped there. But they need to use a hole saw to get the solids in a "core biopsy". That is the threphine part you're waiting for more info. This is required for <<assessment of cellularity, architecture, infiltrative processes, and spatial relationships between hematopoietic elements >> I believe this looks for any fibrosis (architecture).

Do you know how experienced your Dr is for BMBs?

[hunter5582]

Glad to hear you are finally getting the results. Your CBC history clearly shows your profile with erythrocytosis. Hopefully you will have the rest of your results soon.

Glad to hear you have set up a consult with a MPN Specialist. This is essential to ensure a proper diagnosis and optimal MPN care plan.

I use an agenda format for all appointments. I would never stay organized otherwise.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times. Two broad categories are Quality of Life and Length of Life. Which is more important to you? How do you define quality of life? What are you willing to do or tolerate in order to extend your life? These are some examples.

1. Extend quality of life. Samples – what matters to you?

A. Protecting cognitive function

B. Protecting vision, hearing, other senses, and mobility/physical abilities.

Philosophically – is it better to get less tx benefit and preserve QOL with any tx

2. Extend length of life. Samples – what matters to you?

A. Always extent length of life/preserve life vs only extend life when QOL is acceptable.

B. Do you have an Advanced Directive and Medical POA. Are there circumstances under which you do not wish for life to be preserved? Does someone know your wishes?

Which is number 1 and which is number 2 based on your priorities?

Treatment Approach Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use.

Updates/Issues/Questions

1. Write out the symptoms and issues you are having and a list of your questions.

2. Always include a holistic review of what is going on, particularly with specialists.

3. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment

Treatment

1. Review all treatment options – let the doc know what you are doing now and seek input on what else to do next.

2. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices.

3. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.

I always go with 2 copies of the agenda. I give one to the doctor and use one myself. The Treatment Goals and Treatment Approach sections pretty much stay the same. Updates/Issues/Questions and Treatment changes every time.

All the best moving forward, Hope you get a clear plan in place ASAP.

[LittleLuna in reply to hunter5582]

Thank you Hunter

[Tropicaldays]

I was diagnosed with PV but the results weren't consistent. Hired a specialist to review 18 months of test to be conclusively told it is not PV. My advice, get a 2nd specialist opinion.

[LittleLuna in reply to Tropicaldays]

Thanks. I have an appointment with specialist booked for Oct so will see what he says.