MD Anderson visit

[KLCTJC]

Today went well. I had all of my articles which Dr V looked at and did his own research too. He agreed with me! I am getting to start Beremi! I am so grateful he took me serious and looked into my case as he said I am the only one he has with both PV and MS. He agrees Besremi may treat both. But I do have bad news for our MPN world, he is retiring at the end of February. Thanks for all of your support

[hunter5582]

That is outstanding news! You did a great job researching and advocating for yourself. It demonstrates that educated and assertive patients have better outcomes.

Hopefully Dr. V is only semi-retiring. Perhaps he can devote more time to research and education. Sad to lose him as a provider though. Same thing happened with Dr. Spivak.

All the best moving forward.

[KLCTJC in reply to hunter5582]

I am hoping he is only semi-retiring. I was so bummed, but so glad I got to see him and got his approval. He took me serious! Providers that do that are the best. They know not all people follow the book. He has a replacement, but not sure of her name. I met her once a year or so ago. She was his resident. But I am hoping Beremi works and I can just follow up in Houston once a year.

[hunter5582 in reply to KLCTJC]

That sounds like a good plan. Hope that the Besremi works as well for you as some of us are experiencing.

[dbus1417]

I am glad he agreed with you, but that is disappointing to hear of his retirement. I am a patient of dr. V also. I really enjoyed his outlook and appreciated his insight and expertise.

[KLCTJC in reply to dbus1417]

I know. I was shocked when he told me. I hate to see him go. Every time I see he he reassures me and makes me feel like I am going to be ok. I felt so safe with him. Good day but sad too

[Ccsintx]

glad you were able to get on Besremi

I go to dr Bose at MD Anderson who works right there with Dr V He is really good if anyone needs to switch doctors

[KLCTJC in reply to Ccsintx]

Good to know! Thank you

[PVmom_79 in reply to Ccsintx]

I see Dr. Hammond at Anderson. Anyone else see her? I’m interested in other’s perspectives.

[KLCTJC in reply to PVmom_79]

Dr. V is recommending Dr. Lucia Masarova, but I have never seen her. I really wish Dr. V wasn’t retiring. He was wonderful

[PVmom_79 in reply to KLCTJC]

Thanks for the info!

[Ovidess]

Welcome to the Besremi club from its newest member. I just had my first injection this week. I got off with almost no side effects, starting out with a fairly low dose (100), I guess. The nurse said such side effects are cumulative, which is not happy news. In December, when I went for a second opinion at the Mayo Clinic, the MPN specialist there (Dr Mangaonkar) said that how I labeled myself: ET or PV (on the border?) was less important than getting on treatment. I was leaning away from HU, so he said why not try starting with Pegasys. When I expressed this choice to my local doctor he started me on Besremi, though he was not sure it would help the PV as much as HU. He is puzzled by my choice, but I researched it well, I think. (The ultimate cost is up in the air still--insurance is an illness of its own sort.) One phlebotomy seemed to bring hematocrit down from over 52% to almost 45%, though will that last long? We'll see. Local doc is an oncologist/hematologist, but sadly he answers: "I don't know " to a good number of my questions. I'm getting tested for Sleep Apnea in early March; I notice that my Oxygen % is sometimes 93 when I wake (often weirdly too early). The rest of the time it is 99 or 100%. It would be good, in a sad way, if this was the cause of 10+ years of lousy sleep. I would also like it (wouldn't we all?) if my MPN drug of choice, instead of causing side effects to make my quality of life worse, actually helped me improve in some ways. Wishing you such improvements.

By the way, can anyone explain to me why too many red blood cells causes on Oxygen deficiency? Seems counterintuitive. Too crowded to do their job?

[hunter5582 in reply to Ovidess]

It is the other way around. Too little oxygen causes too many red blood cells. Sleep apnea can cause secondary polycythemia. emedicine.medscape.com/arti....

The short version is that hypoxemia causes the body to produces erythropoietin, triggering erythropoiesis. When severe enough, it can cause erythrocytosis. Note that if you have PV, anything that increases erythrocytosis is a double whammy.

BTW - congrats on advocating for yourself and joining the Besremi club. I have found it to be far more effective and much easier to tolerate than HU. I hope you have the same experience. You are right about insurance. It is what I call "an interesting and unique learning opportunity." Thank goodness I have good insurance. I pay $100/month with an annual $2,000 cap for all drugs. Getting it approved the first time was a challenge.

All the best

[KLCTJC]

thanks for all the info! I plan to start next week. Will start at 50mg. So we will see. Hoping for no or little side effects. I figure I will have some side effects at some point just hoping they are tolerable. I am just looking forward to moving in a positive direction with this disease!