I had a follow-up MRI and met with my Neurologist/NF Specialist yesterday. There is no sign of recurrence of the brain tumor. In fact, it seems I have a rather healthy brain for someone age 69. There is less cortical ischemia than many my age have and no signs that would indicate a risk of developing dementia.
I met with the MPN Specialist at Johns Hopkins (Dr. Tania Jain) today. We looked over all of the revenant numbers and discussed treatment options. We made the decision to keep my Besremi at 175mcg as the risk/benefit of increasing the dose to avoid a venesection and possible further decrease the JAK2 VAF was not favorable. The factors we considered were the mild elevation in LFTs and depression of LYMPH and NEUT. We decided together that it made more sense to stick with an occasional venesection and prevent potential Besremi adverse effects. She agreed that when treating with the interferons, one must be patient and look to the long-term for results.
One thing that may change is that my A1C and glucose numbers have been trending up for over a year now. I have floated in and out of prediabetes for over 10 years, but now I am more consistently seeing an A1C at high-normal or mildly elevated and glucose numbers more consistently in the 100-120 range. I asked and Dr. Jain feels that in the context of an MPN, it is time to consider treating the prediabetes We discussed metformin, which some MPN specialists have used as adjunct treatment for some MPN cases. I will be reviewing her recommendation with my endocrinologist and PCP and making a decision soon. I will also seek input from my local hematologist.
We had time to talk a bit about the MPN research underway at Johns Hopkins. She received a grant to explore a specific type of CAR-T therapy to treat MF. If this type of therapy was viable, it should work equally for all mutation types. They are also researching a possible role of telomere dysfunction in causing MPNs. This may play a role in familial MPNs and clusters of blood cancers in families like we have experienced in my family. If they move forward, my family will volunteer to participate in any study they do.
We are fortunate that we are learning so much more about MPNs and that our treatment options are improving. I hope everyone will effectively advocate for themselves individually and that collectively we will work to improve outcomes for everyone with a MPN.
Wishing all of you success in your journey with a MPN
Written by
hunter5582
To view profiles and participate in discussions please or .
Congratulations on 69 and continuing to thrive! So glad to hear your MRI results. It is a stretch to give someone so knowledgeable advise, but food for thought. Metformin has not been tolerated by a handful of people I know, mainly explosive diarrhea. For some who continued taking it did work, because they would eliminate foods that were associated with the explosions. Many now are have luck with wegovy, or ozempic. Wishing you the best! Divegoddess
I have some reservations about the potential adverse effects of metformin, but that is true for all of the meds I take. I discussed the GLP-1 receptor agonists with the MPN doc. She felt more comfortable with metformin because there is more experience with it in the context of treating MPNs. I am going to discuss all of my options, including not taking anything new, with the rest of my care team. We will see what happens.
We target keeping HCT<45%. With my iron levels improving, the erythropoiesis is increasing. I will soon be over 45%, requiring either a dose increase or a venesection. I know I can tolerate an annual venesection if that is all that I need. The risk/benefit profile for that plan is better than increasing the dose in my case.
Congratulations! I am very happy to see your success in treating multiple disorders. Thank you for helping me and many others learn from your journey. Knowledge is power. Bless you, Hunter.
As per usual another really interesting post. So glad you are doing well. Regards the sugar, I have read before on here that metformin can have a very positive effect for us mpn people, not just regards the sugar control but the condition itself. Unfortunately can’t remember the details of the posts. Good luck and look forward to next update
I’m so delighted for you Hunter. You r so knowledgeable and provide such support to everyone and I just wanted to say a massive thanks to you. You help so many people successfully move forward in this group. You are a star ⭐️. Good luck with ur plans xx
Super news Hunter and thanks for sharing. I have an appointment with Guys in May which I am looking forward to as currently my local haematologist has left and I am now only seeing a nurse as they are so short of staff at my local hospital sadly. I think it is crucial that we advocate for ourselves, as you say, as my local haematologists have very limited insight into MPNs. Wishing you and the family all the best.
Hi Hunter, It's terrific you had good news about your brain tumor, but sorry to hear that prediabetes is emerging. I'm curious how you selected Dr. Jain. I haven't seen her name on the MPN specialist listing that is commonly circulated here. And when I've called Hopkins in the past few weeks, it's been somewhat of a maze to figure out who is currently there and where. Thanks, in advance, if you can share additional information.
It is more difficult now that Johns Hopkins eliminated the structure of a MPN Clinic in favor of a hematologic malignancies unit. When Dr. Braunstein left, I declined the initial recommendation for a transfer and wrote to him outlining my requirements for a MPN Specialist. He recommended Dr. Jain even though her on-line profile does not fully outline her MPN creds. The short version is that Dr.. Ruben Mesa was her mentor, she is very knowledgeable, and she is actively involved in MPN research. I am very pleased with her expertise and her style of working with patients.
Thanks for the reminder. I will try to add her to the MPN forum list of providers.
You always provide such valuable information. Sounds like you and your team are working together to manage you. I'm sure your numbers will start level out.
I to am on Besremi and so far doing well I do realize things can change at any moment.
So pleased to hear your news and that all is very good regarding your brain. Thank you again for sharing your results which help us all understand MPN’s and treatments,giving us reassurance. Best wishes to you and your family for 2025. Fran
I’m delighted to hear your good news and hope the coming year will be a good one for you. Thanks for all the information you provide to us. I seldom post but read others posts daily. I’m always glad when you weigh in on any topic because you are so well informed.
Very happy to hear the MRI results are good. I hope you will find a good path forward for managing your pre-diabetes. Wishing you a great 2025! Hugs from NYC.
A1C : Hunter do not worry too much about this trending up a bit. I had the same (not overweight) and the combination of cutting out sugar/carbs and some resistance training had fantastic results in a few months. Medications may not be necessary .Agree that a few extra venesections are a simpler way to manage your (otherwise ) amazingly stable blood stats. Good luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
