There are not any MPN specialists in Hawaii where I live, and even though I have a good oncologist, he is not that educated about ET. I wonder if anyone in the San Francisco Bay area or anywhere in California has a good specialist that they would recommend. I am especially interested in a Specialist who has worked with both pegasys and rux. I am hoping to be able to do online visits.
I have spoken with my insurance company and they said that I have to first find the specialist and give them the name and then they will see if they can approve my seeing him or her
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Island-Lady
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There is one MPN Specialist located in HI , Dr. Michelle H. Miyashiro. mpnforum.com/list-hem./ I do not know anything about this doc other than that she is listed. You can look for docs in CA on this list.
It is also worth checking this list. Dr. Fleischman and Dr. Gotlib both seem like good choices. Not sure if they are taking new patient.
Docs can see you virtually but need to have a license in the State where you are when you are seen, unless there is a reciprocal agreement between the States. I do not know whether there is an agreement between HI and CA.
thank you so much Hunter. Unfortunately, the woman you mentioned is no longer an mpn specialist. She works at a local hospital with breast cancer patients only. I will look up the other two doctors, but I do like the idea of someone who has already seen a doctor and has had good experiences. Thank you again for your advice.
I am looking for some explanations why we have to test the genes taking Besremi. Maybe you know some papers about it because there are no International guides about this topic. Can you help me, please?. I cant convince my hema to test it. Thanks
There is an emerging consensus that measuring changes in JAK2 allele burden is a valid and important measure of MPN status and success of treatment. Not all are onboard with this yet. Bear in mind that the ability to make changes in allele burden is relatively new to the MPN world. Not all docs are up-to-date on the emerging thinking about allele burden. To be fair, we do need more data that is going to take some time to gather.
Here is a recent article that may be of interest. There is more in the literature and this topic comes up on a regular basis at MPN forums. ashpublications.org/blood/a...
My MPN Specialist thinks allele burden matters and is a valid marker of treatment. We are rechecking allele burden 12 months out from the last time we checked. My regular hematologist is not sure that allele burden matters, but is fine with rechchecking it and submits the orders when requested.
I had a recent virtual visit with Dr Gotlib. He has many pts on both Rux and IFN. I think this depth with IFN is unusual. He works at Stanford health.
It was 3-4 months from my booking to the appointment.
But as Hunter says, you normally must be physically in the state of Dr's license.
I have spoken to Dr Fleischman by phone. She is esp easy to talk to. She has a focus on diet and MPN and is running the NAC (N-acetyl cysteine) supplement study. I know she has patients on IFN.
I took NAC while I was on IFN. Seemed to be good. But after my adverse reactions (to IFN and vaccine) I seem to be very intolerant of glutathione. It's not supposed to be possible, maybe I'll ask Dr Fleishman sometime.
Irvine CA. I tried to get an online appointment with her and her assistant told me that would have to see me first and then follow ups by video conference.
I currently see Dr. Palalay on Oahu at Hawaii Cancer Care. He is a delightful man and lets me drive my treatment, but I think a specialist in addition to my local oncologist will be good. I am going to call Dr. gotlib‘s office and see if he is taking new patients and he is at Stanford.
I just called Dr. gotlib‘s office and they told me that they will not take anyone who is not in California. He said that during Covid they did it, but that they won’t do it now that insurance won’t cover it. I’m not sure where to go from here because I would really like a Specialist.
I am sorry to hear that Island-Lady. We are in a tough spot here. My hematologist is Dr. Craig Boddy and he is with Straub. Although he is a very good doctor he is not an MPN specialist and I often wonder if there isn't something more I could be doing. It took me months to get approved for Pegasys and I was the one who suggested it thanks to this forum.
I will let you know if I am able to find somebody on the mainland and I hope you will do the same. I think a specialist would really be helpful. There will be questions about how to reduce Pegasys once my platelets are low enough, and I am also interested in the possibility of using a low-dose of rux with a low-dose of pegasys, which is definitely some thing my oncologist will not know about. As you also experienced, I am the one who suggested pegasys to m6 oncologist and he thought it was an old-school treatment because he wasn’t up-to-date, but was willing to let me try it.
In the meantime, we are lucky to have this forum where I am learning everything that I know. Without this forum, I would not be on Pegasys.
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