Seeing an MPN Specialist tomorrow!

[Zeppelin11]

I have an appointment at Stanford with an MPN Specialist tomorrow. Going on 5 years with ET+CALR and currently taking aspirin and 2 pills of Hydrea daily AND 90mcg of Pegasys once a week. We are in a transitional period right now and I will eventually just be taking Pegasys and aspirin. Took my 4th dose of Pegasys yesterday. No side effects other than some fatigue so far. 38 years old and very healthy otherwise.

LDH levels have gone down significantly and Platelets are currently at 695,000.

Taking all these details into account, are there any questions I should ask the specialist? I have a list going but would love some input. No stone left unturned......Thank you in advance!

[dbus1417]

see how they feel about besremi vs pegasys and maybe see what he or she thinks about the viability of this mutant CALR antibody that is currently about to start trials.🤙🏽

[Zeppelin11 in reply to dbus1417]

Thank you! I will! I thought Besremi was not approved in the U.S. but I looked it up and see that it is. I will defiantly ask about this.

[hunter5582]

Glad to hear you will have the appointment with a MPN Specialist. That is great news.

I go to all appointment with a set agenda. more than just a list of questions. this is what the format looks like.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

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

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment

Treatment

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

Suggested questions to ask

1. Based on CALR+ ET and my risk profile (age + co-occurring conditions) what is the appropriate treatment target for PLT? Why? Is there an approrpaite target for LDH? Why?

2. How can I best control the actual symptoms I experience?

3. What can iIdo to decrease the risk of progression?

4. What are ALL of my treatment options? What is the risk/benefit profile of each option.

5. Assuming you plan to continue to switch to PEG only - what is the appropriate titration schedule? How/how often will we monitor the response?

Based on the answer to these and the rest of your questions, you can reach a collaborative decision on how to proceed. Wishing you all the best doing so,

[JenngeetingR828 in reply to hunter5582]

Wow hunter5582 -great questions!!

[Zeppelin11]

Thank you! This is gold! Taking it all with me tomorrow.

[monarch5000]

Since you've only been on Pegasys interferon for 1 month there isn't much to talk about yet. After 6 - 12 months of being on the 90 mcg dose and after having monthly CBC's it should be clear whether or not you should increase or decrease the dose or stay where you are at.

I wouldn't bring up the subject of Besremi interferon or clinical trials because you've only been on Pegasys for 1 month and your doc likely had to jump through some hurdles to get insurance to cover it so it would seem premature to put him/her through that trouble again given Besremi is not known to be superior in efficacy to Pegasys in any substantial and reliably predictable way and costs 3-4 times as much.

[dbus1417 in reply to monarch5000]

it’s a new doctor and she’s free to ask the question. Nobody is having to do any extra work.. What if the mpn specialist has a different opinion? My mpn specialist felt like besremi would be the best option for me and I share the same mutation as zeppelin.

Nobody is suggesting she start clinical trials, but rather to inquire about any new information as it pertains to the novel mutant CALR antibody. Perhaps the new mpn specialist has some encouraging information about that.