Oh my goodness! There was no comparison to the level of care I’ve been receiving and what I experienced today. Thank you all so much for encouraging me to see a specialist. Special shout outs to Hunter and EP Guy!
I went to UNC Chapel Hill Cancer Hospital. I saw Dr Brandi Reeves. She was amazing. From the moment I walked in the door everyone was so nice and went out of their way to introduce themselves and made me feel “taken care of.” There was bloodwork done in the lab first.
Next I met with the pharmacist who went through all of my meds and supplements with me. Dr Reeves came in and spent a solid hour or MORE going over my history and what led up to my PV diagnosis. She listened to me, talked to me about medication options, my bloodwork, her research, gave me a treatment plan, seemed excited that I had researched and had some “knowledge” about my condition and praised you all on this wonderful support group for educating me!
I personally feel that this group might have literally saved my life. I am now with a brilliant doctor that is probably the smartest person I’ve ever met. She tried to explain the research she is doing using blood that I donated. Hunter, I wish you had been there so you could explain it to everyone else!
No matter what happens at least now I have a team that is taking care of me. I don’t know why I was so hesitant to make this happen sooner.
I will be getting some phlebotomies, taking low dose aspirin AND my first medicine will hopefully be Besremi. The “team” seemed confident they can make that happen.
So much better than my last oncologist who only said- “Do nothing or take HU” and left that decision to me - with no explanations or even a pamphlet. Described PV as a blood disorder that I was lucky to have and to just “Go out and live my life!” 👎👎👎👎👎
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Barbiebreath
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What a difference competence and compassion makes! I am so very glad that you made the decision and the trek up there. It sounds like you received the care you need and deserve. Kudos to you for making this happen.
I wish I could have been there to hear about her research. The things she is researching include: (1) better understanding of the reasons for increased risk of thrombosis in patients with MPN and (2) interventional clinical trials to improve the treatment of patients with MPN, MDS, and bone marrow failure syndromes. Both very important topics for us. Better understanding the pathogenesis of MPN thrombosis will allow for more effective treatment and decreased risk of adverse outcomes. Very complex and interesting topics. I hope we will see her at one of the MPN Forums or at an ASH presentation.
I left out that she is also including a prescription of metformin with the Besremi. I can’t explain the benefits of metformin but she said there had been positive testing results.
“Metformin is a biguanide that exerts selective antineoplastic activity in hematological malignancies. In the present study, we investigate and compare effects of metformin and ruxolitinib alone and in combination on cell signaling and cellular functions in JAK2V617F-positive cells. “ (Cell Death & Disease)
Apparently there is not much money to be made from metformin so there isn’t as much money for research.
I have been looking at Metformin for some time but for longevity and possibly preventing other cancers. It has been used for sometime in in the longevity space. I was going to start it, but starting Besremi made me put it on hold.
I previously read the research that was quoted here regarding JaK2.
Agreed, very interesting. If there are no complications with Besremi I would consider taking it. Easy to get and not expensive.
(Led by AFAR Scientific Director Nir Barzilai, MD, these trials will test whether those taking metformin experience delayed development or progression of age-related chronic diseases—such as heart disease, cancer, and dementia.)
There is a lot of research around Metformin as it has been used for 15 years.
Brilliant- I love a post like this. Well done and must be a relief to find yourself in good hands that give you confidence. It’s easier to get on with the joys of living knowing you Now have a good team looking out for you.
Congratulations! Having an MPN specialist in your corner makes such a big difference! My experience was very similar in that my specialist was excited I had done so much of my own research thanks to the great community here!Interesting on metformin..my MPN specialist had mentioned some recent work on the subject which surprised me - my only experience with metformin was my wife was prescribed it for help with PCOS about 20 years ago...one of the "side effects" can be weight loss - I will follow up with him on my next appointment and see if he has anything new...
So impressed that you met with a pharmacist who went over your meds and supplements with you. I did not have that experience with my first visit with my MPN Specialist. That is the piece I am anxious about since I have other issues that all started at the same time and my 5 doctors all gave me meds never saying that they would cause interactions with each other or would give me unwanted side effects. I plan to be very pro active about getting to the bottom of it. Thank you for sharing your positive experience!
I had my first appointment with an MPN specialist in May. She immediately changed my treatment from Hydrea 1000 mg and phlebotomies if hematocrit is over 42 or platelets over a certain number that I can’t remember right now. (Sorry, but I have some memory issues.) She added Jakafi 10 mg twice a day. Since then she has increased the Jakafi to 20 mg in the morning and 10 mg at night. She stopped the phlebotomy treatment for now and explained that they can cause reactive increase in the platelets. My platelets are in the normal range as of my lab tests a week ago! My hematocrit is also normal! I have not had any side effects and the fevers and chills have completely stopped! The itching has almost stopped. The shortness of breath has almost resolved! I have more energy and have been able to do more activities.The change in me is evident to my friends and family. I thank God that I am under the care of such a competent specialist who explains everything and is patient with my questions. I also have multiple myeloma and I am scheduled to see a MM specialist in July. That was the first blood cancer I was diagnosed with (2020) and it is better controlled than the MPN (diagnosed in 2021). I am not in remission yet for MM. I take different treatment for the MM than for the MPN. I am thankful that I will now be followed by a specialist for each blood cancer.
In February I started inquiring about seeing a specialist but my hematology oncologist suddenly had to retire before I could ask for the referral, which was required by the place where I was going to see the specialist. I was being reassigned to another oncologist in the university medical center associated with where I was receiving my care. I had been being seen in a satellite office an hour away from the main medical center as I live in a rural area. I didn’t know there was a specialist at the main medical center and I had contacted another university medical center in my state to schedule a consult with a specialist. To my delight, I was scheduled to see a specialist in the same university medical center I was already affiliated with.
My advice to anyone diagnosed with MPN or MM is to see a specialist as soon as possible! I had been told this by someone else but put it off. My hematology oncologist said he consulted monthly with the specialists at the main center but it obviously was not as successful as seeing a specialist myself.
Sadly, I see that I'm not the only one. I am going to my first specialist appointment next week. My hematologist told me no further testing was needed after my Jak2 positive test. He said it didn't matter which "disorder" I have because the treatments are all the same. He also told me to stop reading about MPNs because they're really no big deal.Needless to say, I never went back and immediately put in a request for an appointment with an out of state specialist. I am so looking forward to being properly diagnosed and treated.
That is a truly appalling, ignorant, and inappropriate response from your properly fired former hematologist. It sounds like you have reached out to find a MPN Specialist, which is the best possible thing to do. Wishing you success in the next steps.
While waiting, you may find these up-to-date webinars of interest. The MPN Molecular Biology is a great place to start.
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- I will follow up with him on my next appointment and see if he has anything new...
Living with MPN
Specialist - 1st visit 
Full blown PV now
MPN specialist Claire Harrison
