Questions for Dr.

[TM76]

Hello!

Tomorrow husband has his first appointments with both leukaemia dept and hematologist since his MF diagnosis. (after a year of prefibrotic MF)

Are there any specific questions he should be asking?

Thank you so much!

[hunter5582]

If you do not already know this, I would start with asking about MPN Specific expertise. Most hematologists do not have much experience with MPNs. It can be as simple as - "How many MPN cases have you treated?" "How many MF patients have you treated?" Assuming this is a doc with MPN expertise that you want to use, then move forward. I would suggest by starting with letting the doc know what your husband's treatment priorities are. Include - Relative importance of Quality of Live and Length of Life. These are related, but not the same thing.

Depending on what you already know, questions may include.

1. Explain the diagnosis of MF. What stage of the disease is he at?

2. What symptoms are typical? What symptoms that your husband experiences are related to the MPN? (Many docs do not know the answer to that question).

3. What is the current mutant allele burden? Are there any non-driver mutations present?

4. What can be anticipated in terms of the course of the disease? (the answer to this will likely be very general). How will we monitor for disease progression?

5. What are ALL of the treatment options? Review the risks/benefits of each of the choices. Insist on a thorough review of the choices. Have the doc explain why he does not recommend something as well as why he does. Ruxolitinib, fedratinib, and PEGylated Interferons (Pegasys, Besremi) would all be on the list to review. These are not all of the options.

6. Are there any clinical trials that your husband would be eligible for? (if he is interested)

Go to the appointment with a written agenda and list of questions. You can give a copy to the doc. Good docs appreciate that you are organized and prepared for the appointment.

Hope that helps.

[TM76]

A thousand thank yous. I will be sure he’s prepared for both appointments.

[MFBMT2011]

Hunter has given you some good questions and in amongst the potential treatment choices stem cell transplant might come up and we can then help with info' on that. List your questions and tick them off as you deal with them. Make notes and compare them when you are finished. You can always get some clarification/interpretation here if you need to afterwards because new terminology comes thick and fast in early appointments.

Haematologists often use the DIPSS scoring/measurement system to assess where someone is with their MF. It lets one know if you are Low risk, Intermediate 1 or 2, of high risk depending on symptoms, age etc.. Mentioned in case it comes up.

Good luck with the appointment.

Chris (Princess Leia version)

[TM76 in reply to MFBMT2011]

Thank you so much. I’ve made a list for him to check. Unfortunately, I am not allowed to sit in because of covid protocols. I really appreciate all the advice.

[katiewalsh]

Hi. I mistakenly left information (a reply) to your question under Hunters answer. Please look there for it. Katie

[TM76]

Thank you all! Katie, I’m sorry, I can’t see your response. The Dr has recommended a stem cell transplant. We understand it’s invasive and he will be away from our family for a length of time.

[MFBMT2011]

Happy to help you get your heads around that one and I am sure several others here will help. Chris