I have an appointment this afternoon. The Drs suspect that I have Essential Thrombocythemia but I have not had a diagnosis. I have had a bone marrow biopsy but have not yet had the results, I should be getting them later today. Any advice on questions that I should ask?
Thank you in advance
Ask if your CalR or Jak or both.
Ask what CalR and Jak mean?
Ask how often you’ll be monitoring the bloods ie every ten weeks twice a year or yearly
Ask will you have to have an ultrasound of your spleen done.
Ask what’s the spleen to do with ET.
BTW I don’t know a lot about my ET but when i first got diagnosed came home and in the months that followed after prognosis I had an ultrasound of the spleen and last appointment I was told I’m CalR?
I’m still not brave enough to ask him what this all means if I have been told it was on a brain fog day.
I hope this is helpful
I forgot to mention that blood tests have came back negative. I had an ultrasound done in 2016 and they haven't requested that I have another yet.
That’s good. I just wish I could just keep saying why what how etc I think of questions after the appointment, read other people’s experiences and I can relate then I read some different term and I’ve no idea what it all means.
Good luck today. My appointment is on Monday 🤞🏻
This happens to me all the time. The last time I saw a Dr was a couple of days after the biospy and all he could say was that the results from the aspirations were clear.
Thank you, good luck to you too
If me, I’d ask
1. Any other mutations - MPL or CALR. If CALR, ask whether type 1 or 2. I think it’s Type 1 but that is a good mutation to have, better long term prognosis and this is on top of the already good prognosis for plain vanilla ET.
I doubt they have yet checked for other mutations and may not bother.
2. Ask about the experience of the pathologist who has done your BMB. In rare cases some very early stage MF patients present as ET and it’s tricky for the pathologist to distinguish. This is unlikely but better safe than sorry. If you were pre MF, you would probably want a different treatment plan such as low dose Pegasys. Prognosis for Pre MF is still pretty good so don’t panic. And it’s very unlikely.
Please let us know how you get on
Best Paul
MPL and CALR both negative, I understand that the term used is triple negative. I also read that triple negative has a higher percentage of turning into MF.
Thank you, I will post an update later
If you are triple negative perhaps ask about starting low dose Pegasys. My limited understanding is that Pegasys can, in some cases, slow progression in PV/early MF.
Not sure if as potentially effective for triple neg. Hopefully your Hem can answer if a specialist.
It’s supporters claim it is most effective the earlier you use it.
Actually last year, Maz, the administrator of this site was asked about this and she put the question to a panel at a conference. The response she got was that triple negative was the most benign.
I’d strongly suggest that you write down all the questions you want to ask, and write down the answers while you’re there and hearing them. We always think we are going to remember all the information thrown at us, but it can be a lot to take in, and we forget.
I agree, DONOT try to remember questions, you will forget that when comes to the time. I always write it down, whatever I think of I write down immediately, and 2 days before appointment I sort out all question then put together
No diagnosis, they are certain that I don't have MF. They have said that my high platelet levels are not caused by anything particular reason other than I am just one of those people who will always have high platelets. Also I don't need to go back but I will need annual follow ups which will be via telephone and blood tests done at my gp practice. It seems they are not quite sure
1. How many MPN patients have you treated?
2. What recent training have you received re. MONs?
3. Are you willing to work with an MON-Specialized consultant in my ongoing care?
4. Will you fully explain all of my treatment options and the risks and benefits of each choice?
5. Will you respect my right to determine the priorities for my own treatment.
These questions will help you determine whether to hire this particular provider. Remember that the doc works for you, not the other way around. Assertive patients receive higher quality care. passive patients do not. This is a list of patient recommended docs with MPN expertise. mpnforum.com/list-hem/ . you may find, as I did, that you will need to travel to find a doc with true MON expertise and find a local doc willing to collaborate in providing your on-going care. Most docs, even hematologists, do not have the needed KSAs with MPNs due to their rarity.
6. What testing will you order to make a diagnosis? Does this need to include a bone marrow biopsy? (Note - BMB usually not needed to distinguish ET/PV - but does reveal level of fibrosis)
7. How will you determine my risk of thrombosis vs. risk of hemorrhage if I do have an MPN? (Note - for some elevated platelets can actually trigger risk of bleeding more than clotting at platelet levels in the 800Ks - not all docs are up-to-date on this finding).
8. If you do have thrombosis - ask to doc to explain the risk-benefit matrix for your treatment. Based on your age, plans to have children, levels of platelets-erythrocytes-leukocytes, co-occurring medical conditions and other factors - your treatment plan may range from monitor only to aspirin only to a blood thinner + some form of chemotherapy. Hydroxyurea is a common first recommendation. Many people tolerate HU just fine, but be aware that it is not a benign substance and does carry risks you need to be aware of if you choose to use it in your own care. All of the chemotherapies have both benefits and risks. Be sure to be thoroughly educated before making a choice.
9. Bear in mind that absent a medical crisis, you have time to evaluate and make an informed decision. Most people with ET or PV live long lives even with some of the challenging symptoms we may face.
10. Clearly assert your intention to stay in control of your own treatment. You want a doc who will respect you, inform you, and work with you to provide you the best possible care. Trust you instincts and remember that the docs work for you and are responsible to you regarding your medical care.
Oops - Just saw my typos. MON = MPN. Eyes a little bleary this AM.
Thank you everyone who replied.
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