What to ask?

[lizzziep]

I’ve got an appointment with Professor Harrison next week, hopefully getting advice on MF treatment. Recently someone asked what to ask doctors about treatment etc and Hunter gave some good advice, so I did a screenshot of those questions and saved it ready to take with me, of course it’s disappeared into the ether now 🤬

So, I’d appreciate any advice on what to ask please, so I’m not sat there like an idiot!

Thank you in advance.

[hunter5582]

Not sure which list of questions you are referring to.

Here is the agenda template that I use.

Treatment Goals:

Define what your treatment goals will be. Include quality of life, extend/preserve life, and other priorities. Define what constitutes quality of life. Rank order your goals.

Treatment Approach

Define what you preferred treatment strategies will be. Do you want to include complementary health interventions? Do you want to consider clinical trials? What level of evidence do you wish to see? Include MPN-expert consultation on your care plan as mandatory. Require holistic care from all providers, including specialists.

Updates on Health Issues & Questions

List everything so docs are aware of all that is going on. Even when it is not “directly related.” List Specific Issues & Questions relevant to this appointment. Highlight what is important to talk about in this appointment.

Treatment Options/Recommendations

Review Risk/Benefit analysis of ALL options, not just the one recommended.

In terms of specific questions, that is highly variable. It is based on your current situation. You already know how well qualified Dr. Harrison is so you do not need to ask about that.

Suggest that the starting point for asking questions is based on defining your treatment goals. Then define what you are willing to risk or tolerate in order to achieve your treatment goals. A primary endpoint in treatment for many of us is to improve quality of life, not just to extend length of life. We each have to rank order our treatment priorities and use them to make our treatment decisions.

Doctors cannot know what our treatment goals, risk tolerance and preferences are unless we tell them. Once that is established, the questions become more clear.

What are all of the options to achieve my treatment goals? Which options most clearly align with my risk tolerance? Are there any contraindications/cautions for the treatment options that are relevant? Is there any one option that stands out as most clearly in my best interests? Why?

Reviewing the benefits/risks of all your options enables fully informed consent in the decision you make. Dr. Harrison is well known for the quality of her consultation on MPNs and her respect for the patient's ability yo make decisions. I am sure she will be able to help you in the next steps in dealing with the MPN.

All the best.

[lizzziep in reply to hunter5582]

Thank you!

[mhos61]

Hi Lizzie.

I know you were quite anxious about the idea put forward by your local haematologist that 70 years of age may rule you out of a SCT. I certainly think you should get clarification from the Professor on this.

Ask questions about the best treatments for your present MF profile, and what’s the likelihood that these ‘treatments’ will help you regain some quality of life back, but importantly, what is the evidence they will extend your life expectancy. If you do opt for treatments how will this impact your choice for a SCT in the future with advancing age.

Once you have these answers you will be able to make an informed choice.

You could also pose the question to the Professor. ‘If this were you what would your approach be’?

Good Luck for the 7 November. I’m sure you will benefit enormously from this consultation. Xx

[lizzziep in reply to mhos61]

Thank you

[Mtnlife]

Sending hugs and prayers your way.

[lizzziep]

Thank you 🥰

[Exeter21]

She is really easy to talk to on the phone & is so knowledgeable I am sure she will sort your treatment. She altered my doseage gaps for Interferon & now no problem.

We are all different so no set questions she will ask you everything & hopefully you will be fine. No treatment is quick & my Interferon has taken well over a year adjusting doseage to now reach the level.

[lizzziep in reply to Exeter21]

Thank you!