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Thank you for answer. Continue taking heart etc meds and Hydrea. I find i get virtigo quite often. Causing falls alot. Why?

Good info we haven’t heard before. Thank you.

Such a great presentation.

Thank you so much for this good information. I was diagnosed with ET and the Jak 2 Mutation in April 2023. Hydroxyurea has lowered platelets to normal, but is not consistent. Doctor can't explain that. Same healthy diet, exercise and drinking at least one liter water per day. One important thing that Dr. Mesa said is how challenging it is to have this rare disease- since most people have never heard of it and have no way to relate to you.

Hernandez Matthew Harris Lisa White Kenneth

Great patient symposium to all the speakers. Great information!!! Kudos to all of you.

Incredible talk & information! Thank you.

Thank you for this presentation, I’m newly diagnosed and have been looking for something to tie together reasons/ ratios/ values. I’m so appreciative.

Looking forward to discussions regarding blood disorders induced by the MRNA injections. I now have slightly sustained elevated platelets (450) since one year after the injections mandated at my work.No mutations! Slight Kapp elevation. Former annual labs going back to 2012 show I had normal bloodwork and no comorbidities. Very healthy! No family history of cardio or high BP issues. No blood mutations. University medical hematologists cannot figure it out. Thanks , Moderna, for Thrombocythemia that nobody can explain.

Thank you so so much for this. You guys are amazing ❤

Thank you for taking the time to inform patients about MPN’s. I was diagnosed with ET in 2020 and have watched pretty much any video related to ET. Again, thank you for all you do.

Great presentation! I learned a lot even though I have MF! We have to get into those little cells, sniff out the cancer, and get everything working better.

Can you please breakdown what an Allis Burden means in terms that a non -medical person can understand? My Burden was 3, I have PV and Jak2 positive. Thank you..

Yes itching 2014 before “diagnosis” in 2016. Led me to self- diagnose. Awful. JAKAFI stopped the itching within hours! Now, I have started to itch if I am late with the medication.

Taking rux since 2019. Allele % 68%. On 03 08 24 allele % now 74.9%. Rux did not help with the population of mutant stem cells. Or am I losing relatively more normal stem cells, during the loss of stem cells that may occur during normal aging?

I wonder if taking Hydroxyurea only twice weekly if it is effective controlling high platelets? Thanks for a great video.. Coco

What to do to lower high platelets counts? Or what foods to eat is there any?

Good day both i was diagnose in 2020 of ET from Massachusetts USA my oncologists treatment hydroxyroyea for rest of my life,My question is can i change or replace to enterperon from hydroxyorea im a low risk patient .because i speak up my oncologist about this and he said interperon have a lot of side effects.he doesn't recommend the interperon?according to my research interperon has none toxic rather than hydroxyorea.please help me about my questions thank so much i really appreciate.God bless.

Look at the doctor, she can't keep shoes on her feet.

One of the best programs you’ve provided. I will be getting my transplant at UofMichigan in September. No matter how confident you are in making the decision to proceed with transplant, there’s always information that can help bolster that decision. Research is so important for the patient and hopefully they have a good support system to assist with this. Thank you doctors for your time!

This program was excellant. Ann, I will try to get in touch. Thank you for all your hard work.

I will be 74 09/26/50. I have everything you describe. Wasn't diagnosed until I was 55. I read everything. Will this medication help me?

Hi! I appreciate it and have checked out your RUclips channel. Your video content is excellent and very fantastic.

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Is plateletpheresis a treatment for ET?

What’s mpn 🤔🤔🤔she never says what that is

Very informative, thank you. I am a 67 year old woman who was born with only one kidney I was just diagnosed with PV and had a previous minor blood clot in lower abdomen 7 year ago. What are the key PV treatments is best given my unique situation? To protect the only kidney I have, transplant surgery is highly risky because of clot or other reason. Thank you so much and hope to hear your thought.

I am watching this later but thank you soooo very very much!!!!!

This information is SO important, it needs to be repeated every week. There is a complete lack of accurate information given to Drs and this is tragic for all women. Question, what about troches?

What a wonderful Dr. I have ET and have had it sense 2013 , Hydroxyurea has worked wonderful for me.

This is extremely helpful information. Thank you for the webinar.

😮😮DR. WITH GLASSES 1:33 HANGING IT AND SHAKING FLAT EXTREMELY 🔥 HOT 🔥🔥🔥🔥🔥🔥🔥🔥

AT THE BEGINNING I SEEN HER (SEXY TOES) TOOK HER FLAT OFF😮😮😮THEM TOES WE'RE EXTREMELY HOT ESPECIALLY BIGTOE WAS INCREDABLE MANY OTHER FOOT GUY'S OUT THEIR EVEN AT YOUR JOB LOOKING TO GET AHOLD OF WORN FOOTWARE AND IM SAYING THE INTENSE INTOXICATING SEXY AROMA I'D LOVE TO GET A WIFF I KNOW I'D GET DIZZY THAT'S A GOOD THING WOW YOUR FEET AND DANGLING ARE INCREDABLE 🔥💯💯💯💯💯💯💯💯💯💯💯

How does a hematologist decide on prescribing hydroxeria or interferon? ET 750 JAK2 Thanks Carole

Platelets 27:15

I'm thrilled to hear your perspective on counts not being an end all. My Onco says nothing is wrong with me cuz I'm not off the charts - that it's just inflammation. But i feel like crap, my kidneys randomly bleed, migraines and well, all the things. He is fixated on thalessemia just cuz my reds are shaped weird, are small & pale. He denies any other possible reason for the abnormality.

How do I find a specialist near me? I'm in New Mexico and docs here seem to be clueless about MPN' much less anything related. I have SO many questions!

stupid idiots talking about there feet and shoeplay not the point of this video trolls in here

Hello. Regarding migraines and PV, there is definitely a connection. I struggled with frequent migraine attacks for seven years (2009-2016). During some periods, I had them several times a week. I often experienced visual disturbances before the attacks. Some attacks were very severe, and I lost the ability to speak and became confused. During the most severe attack, I fainted and woke up in an ambulance with short-term memory loss. In 2016, I was diagnosed with PV at age 30 and started phlebotomy treatments. After that, the migraine attacks disappeared as well.

This was so helpful, thank you!

A phlebotomy sure takes the pressure off with elevated Hematocrit. Made me instantly feel better.

My PV has recently progressed to MF but I wanted to address what Ann said about a patient taking a regiment of antibiotics and found it reduced inflammation. This happened with me also. Before I was diagnosed, I suffered with migraines and periodic sinus infections. My PCP would put me on antibiotics when I had a migraine and the migraines subsided. I believe I was having migraines due to the PV inflammation …as I looked back at my labs, Platelets were elevated at the time… prior to the PV diagnosis.

I had a bone marrow test yesterday and this was a great explanation. Thank you.

I am so sorry to hear about you and your struggles. I have MF and will be getting a BMT in the next few months. The conflicting support we get from some well meaning docs can be frustrating. While some of us have terrible, physical, life altering symptoms, some have none. I hope you are seeing an MPN Specialist because it definitely does make a difference. No mile is too far to go get the help you need. You can then also work with a local oncologist. I’m sorry no one else responded to your comment. I hear you. ❤

Hello, thank you for this info.. I’ve been diagnosed 2 months ago but as i try to schedule with an hematologist/ oncologist don’t specialize in MPD? Can I ask where I can find an oncologist that specializes in ET? Thanks