up coming appointment

[KLCTJC]

Looking for some good vibes before my appointment on Thursday at MD Anderson. I notified them on the articles I have supporting INF alpha being used in MS patients and the article about the possibility of beta INF helping in patients with PV. I am so nervous. I have no idea what to expect or what my labs are doing. I just know I feel good. Recently had MRI of my neck and back and they were normal. Praying he doesn’t dismiss me and hopefully will let me try Besremi that is sitting in my fridge! Thanks for all of the support. I am just so anxious!

[Solyesh]

Good luck!

[KLCTJC in reply to Solyesh]

thank you!

[Mazcd Partner MPNVoice]

Hi, sending you lots of good vibes and best wishes for your appointment on Thu, Maz x

[KLCTJC in reply to Mazcd]

thank you so much!!!

[DiveGoddess]

Best of Luck at your visit. I had my initial testing there at MD Anderson. Dr Musunuru recommended Hydroxurea. I declined and was fortunate enough to seek second opinion at Moffit with Dr Komrokji. Now on Besremi. This group taught me more than MD Anderson. I don’t know what is right for you, but the side affects from Hydroxurea with mouth sores and melanoma risk were not something I wanted to agree to. MD Anderson is wonderful, but I was seeing an Oncologist. Definitely recommend the MPN specialist. If you haven’t had a bone marrow biopsy they will want that. I was told the procedure wasn’t bad. I will never have an BMB again without conscious sedation. Moffitt was appalled they did not use conscious sedation. I will always have some PTSD from that. MD Anderson ranked #1 in US and people travel internationally to seek treatment. I know that is a lot of information, but want you to know, so you don’t let someone less informed change the trajectory of your life. Keep your articles in hand! I am hoping for the best for you. Moffitt and the Head, MPN physician at MD Anderson collaborate. Positive vibes!

[KLCTJC]

I have been before and I basically refused a BMB! But luckily he said he didn’t need it. I read it wasn’t necessary for diagnosis. I am seeing the MPN specialist. I can never say his name. I call him Dr V, but depending on how he handles my situation I may consider a second opinion. I sent him an email yesterday basically saying I am coming in guns blazing! Because I am over the anxiety. I just have to convince him the Besremi I have in my fridge is ok to try! That my neurologist is here for me and is on board. Thank you so much! I have such a supportive family which is so wonderful but it is just a hard time. I just want to be moving in a positive direction! Ready to not be so scared about my labs! Thank you again. Will keep you updated

[hunter5582]

Many good vibes headed your way. Always know that your treatment is your choice. You can decide based on your treatment goals, risk tolerance and treatment preference. This decision rests on fully informed consent. Ultimately, you are the one who decides whether the benefits are worth the risk.

As others indicated, seeing a MPN Specialist is very important, particularly with complex cases. The doc treating the MS should also weigh in on this decision. Suggest getting a second opinion form a MPN Specialist if you have any questions about your treatment recommendations. Here are the lists.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

[KLCTJC]

I am seeing Dr. Verstovsek. He is a MPN specialist and I have seen him before. I am just hoping he listens to me about the MS. My neurologist is on board with Besremi. But when I emailed Dr. V about he just said INF alpha is contraindicated in autoimmune disease. However, MS is different. It is treated with INF beta and I have articles from the 90’s where they tried alpha and the MS patients improved. And I have Besremi at home just waiting to start once we all get on board. Local oncologist and neurologist are all on board. Just have to convince Dr. V. Thank you for the good vibes, I need them. My anxiety is through the roof. Hopefully, he will take my research serious, if not sadly I may be looking for another doctor.

[hunter5582]

Dr. V is one of the leading MPN experts but one can always benefit from a second opinion. Did the doc treating the MS give an opinion?

This is an issue of informed consent. Providing you understand the risks pertinent to your case, then your preferences should most certainly be a driving factor in the decision. To be fair, the doctor also needs to feel that he is not prescribing something that is just not worth the risk to your health. this is not always a black-and-white decision.

Wishing you success.

[KLCTJC]

Neurologist said he was fine with it. And if I flared he could handle it. Unfortunately, anyone with autoimmune disease would have been excluded from the study for Beremi. I just hope he considers it and my future. Don’t want this to be a situation where it is too late.

[hunter5582 in reply to KLCTJC]

If the Neurologist thinks it is Okay to try, do not see why Dr. V would not be willing to give it a go. Particularly if you feel the risks are worth the benefits. It all rests with informed consent. You understand the risk and feel based on the evidence that it is justified.

[KLCTJC]

Thank you for your support! Your posts are always so helpful. I am trying to go in this afternoon with an open mind and look at today as a discussion. And we can decide what would be best for now. As you know medicine is constantly evolving. Thanks again! Fingers crossed for today!