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PV Reporter
United States
Приєднався 21 вер 2013
PV Reporter produced videos, hosted by founder David Wallace, on Myelproliferative Neoplasms (MPNs). There are numerous interviews from world-renowned MPN Specialists filmed at the American Society of Hematology (ASH) 2014 - 2022 meetings. Additional "patient-focused" videos provide information for fellow patients.
David Wallace is a Polycythemia Vera (PV) patient and advocate. Please visit our website - www.PVReporter.com and be sure to subscribe to our UA-cam channel.
David Wallace is a Polycythemia Vera (PV) patient and advocate. Please visit our website - www.PVReporter.com and be sure to subscribe to our UA-cam channel.
Navigating Polycythemia Vera (PV) Treatment Options, Expert Insights from Dr. Gaby Hobbs
In this informative interview, we dive deep into first-line treatment options for Polycythemia Vera (PV) and explore the role of genetic testing in managing PV effectively. Join us as we discuss when genetic testing is necessary for PV patients, how it can influence treatment decisions, and the benefits of early intervention.
Whether you're a patient recently diagnosed with PV or looking to better understand the treatment landscape, this conversation provides valuable insights to help guide your MPN journey.
Key Topics Covered:
First-line treatments for Polycythemia Vera (PV)
The role of genetic testing in PV management
When genetic testing is necessary for PV patients
Stay tuned for more MPN-related discussions, and don't forget to visit pvreporter.com and mpncancerconnection.org for additional resources and patient support materials.
Whether you're a patient recently diagnosed with PV or looking to better understand the treatment landscape, this conversation provides valuable insights to help guide your MPN journey.
Key Topics Covered:
First-line treatments for Polycythemia Vera (PV)
The role of genetic testing in PV management
When genetic testing is necessary for PV patients
Stay tuned for more MPN-related discussions, and don't forget to visit pvreporter.com and mpncancerconnection.org for additional resources and patient support materials.
Переглядів: 842
Відео
JAK Inhibitors in MF: Tailoring Treatment Strategies
Переглядів 4384 місяці тому
Explore the world of JAK inhibitors and their role in treating myelofibrosis (MF), a rare bone marrow cancer. This comprehensive overview by MPN expert, Dr. Lucia Masarova delves into the latest advancements in personalized medicine for MF patients. Learn what the future holds in terms of treating myelofibrosis. For more information, please visit our websites: www.pvreporter.com/ mpncancerconne...
Latest Advances in MPN Research 2024: Highlights from ASH 2023
Переглядів 1,3 тис.10 місяців тому
Dive into the key takeaways on myeloproliferative neoplasms from ASH 2023 in this comprehensive overview by MPN expert, Dr. Lucia Masarova. We cover the latest research, clinical trials, breakthrough treatments, and innovative approaches in MPN blood cancers that were showcased at this year's conference. - Combo treatments for myelofibrosis - New ERA in non-JAK inhibition - Updates on PV (polyc...
Optimizing MPN Patient Outcomes: The Holistic Approach to Wellness
Переглядів 935Рік тому
In this interview with MPN expert, Dr. Angela Fleischman, we discuss principles to living better with MPNs, myeloproliferative neoplasms. We also discuss treatment strategies for myelofibrosis. Patients Are Asking program episode 2, hosted by David Wallace, founder of PV Reporter and our non-profit sister organization, MPN Cancer Connection. Be sure and subscribe to our UA-cam channel for the l...
MPN Cancer Connection overview of new resources, September 2023
Переглядів 91Рік тому
MPN Cancer Connection has a robust resources page offering numerous tools to help people with MPN find the information or assistance they need including help with co-pays and medication . Here you will find links to other organizations that may be helpful, as well as unique materials developed by our team to help you in your journey. Two resources in particular that I would like to highlight ar...
What does disease modification mean and what are the implications for MPN patients?
Переглядів 184Рік тому
Learn what more about what disease modification really means for myeloproliferative neoplasm (MPN) patients.
What is "disease modification" in MPNs and what are the implications for patients moving forward?
Переглядів 1,1 тис.Рік тому
We're hearing more about "disease modification" in MPNs, what does the term mean and what are the possible implications for patients moving forward? Why is it important for individuals with MPNs to track and document their symptoms before visiting their doctor? Learn the latest news on late stage clinical trials in Myelofibrosis and Polycythemia Vera. Dr. Abu-Zeinah from Weill Cornell Medicine ...
Is the level of fibrosis a reliable marker in myelofibrosis?
Переглядів 1,2 тис.Рік тому
MPN Expert, Dr. Verstovsek from MD Anderson Cancer Center provides a surprising answer on the importance of measuring fibrosis in myelofibrosis patients. The video discusses whether the level of fibrosis is a reliable marker for myelofibrosis. While improvements in biological parameters like fibrosis are thought to be connected with better patient outcomes, a study showed that changes in fibros...
Finding Hope in Treatment: New Developments in MPN Research 2023
Переглядів 3,4 тис.Рік тому
Interview with MPN expert, Dr. Srdan Verstovsek, Patients are Asking Episode 3 from ASH 2022. Learn about an exciting new anti-mutant calreticulin (CALR) targeted monoclonal antibody that may lead to a molecular response in MF and ET. What were some of the highlights of the American Society of Hematology (ASH) conference and what treatment can patients look forward to in the year ahead? Is the ...
Is there a connection between MPNs and Autoimmune Disorders? News update on NAC clinical trial.
Переглядів 1 тис.2 роки тому
Interview with MPN expert, Dr. Angela Fleischman, Patients are Asking Episode 2. Learn about the treatment options for Myelofibrosis and when a clinical trial might be advisable. Discover the connection between autoimmune disorders and MPNs, myeloproliferative neoplasms. News on the NAC, N Acetyl Cysteine clinical trial.
Can patients with Polycythemia Vera (PV) live a normal lifespan?
Переглядів 19 тис.2 роки тому
MPN expert, Dr. Abu-Zeinah answers an important question and the results may surprise you. Listen for details.
Patients are Asking, Episode 1, June 2022 interview with Dr. Michael Grunwald
Переглядів 3772 роки тому
What drugs in late stage clinical trials look most promising? How does one go about getting a referral to an MPN specialist?
MPN Clinical Trials 2022 Update
Переглядів 5532 роки тому
MPN expert, Dr. Abu-Zeinah provides an update on promising clinical trials moving forward from the ASH 2021 conference. We discuss AI (artificial intelligence) and how it is being used to gain a deeper understanding of myeloproliferative neoplasms and much more, check it out.
Has Polycythemia Vera (PV) become a disease of the middle-aged?
Переглядів 8 тис.2 роки тому
What is the average age of someone diagnosed with PV in 2022? Is the disease being detected earlier? The prevalence of these mutations (JAK2, CALR) are more than anticipated. It's time to think of Polycythemia Vera (MPNs) as a disease affecting middle age patients. Based on data from LLS and other sources, shows ET being diagnosed slightly younger than PV patients. Both PV and ET are diseases o...
"Patients are Asking", Q&A with MPN expert Dr. Abu-Zeinah, Ropeginterferon approved for treating PV.
Переглядів 2,6 тис.2 роки тому
Our MPN expert, Dr. Ghaith Abu-Zeinah answers questions about the newly approved drug for polycythemia vera (PV) Ropeginterferon / BESREMi. Should I switch from Pegasys to the new FDA approved interferon? How might BESREMi change the treatment paradigm for low-risk PV or PV in general? Tune in to learn more. For more information on MPNs (myeloproliferative neoplasms) visit PVReporter.com
Patients are Asking, Q&A with MPN expert Dr. Andrew Kuykendall, Episode 2
Переглядів 9443 роки тому
Patients are Asking, Q&A with MPN expert Dr. Andrew Kuykendall, Episode 2
Patients are Asking, Q&A with MPN expert Dr. Bose, Episode 1
Переглядів 6623 роки тому
Patients are Asking, Q&A with MPN expert Dr. Bose, Episode 1
Precision Medicine & Symptom Scoring in MPNs, Dr. Pemmaraju ASH 2020 interview
Переглядів 1713 роки тому
Precision Medicine & Symptom Scoring in MPNs, Dr. Pemmaraju ASH 2020 interview
Novel Agents and Combination Treatments in MPNs
Переглядів 1403 роки тому
Novel Agents and Combination Treatments in MPNs
Clinical Trial Updates on Emerging MPN treatments, ASH 2020 interview with Dr Verstovsek
Переглядів 6033 роки тому
Clinical Trial Updates on Emerging MPN treatments, ASH 2020 interview with Dr Verstovsek
David Wallace, PV Reporter interviews MPN patient advocate Diane Rose
Переглядів 1 тис.4 роки тому
David Wallace, PV Reporter interviews MPN patient advocate Diane Rose
PV Reporter interviews Dr Verstovsek on PTG 300 clinical trial for treatment in Polycythemia Vera
Переглядів 6194 роки тому
PV Reporter interviews Dr Verstovsek on PTG 300 clinical trial for treatment in Polycythemia Vera
Dr. J.J. Kiladjian ASH 2019 Ropeg interview with David Wallace, PV Reporter
Переглядів 5804 роки тому
Dr. J.J. Kiladjian ASH 2019 Ropeg interview with David Wallace, PV Reporter
Heidi's Stem Cell Transplant - Kicking Myelofibrosis Cancer's Butt!
Переглядів 1,5 тис.4 роки тому
Heidi's Stem Cell Transplant - Kicking Myelofibrosis Cancer's Butt!
Dr. Michael Grunwald ASH 2018 interview with David Wallace, PV Reporter
Переглядів 2395 років тому
Dr. Michael Grunwald ASH 2018 interview with David Wallace, PV Reporter
Dr. J.J. Kiladjian ASH 2018 Headline Research Studies with David Wallace, PV Reporter
Переглядів 2935 років тому
Dr. J.J. Kiladjian ASH 2018 Headline Research Studies with David Wallace, PV Reporter
PV Reporter, David Wallace interviews Dr Jean Jacques Kiladjian ASH 2018, video 1
Переглядів 1035 років тому
PV Reporter, David Wallace interviews Dr Jean Jacques Kiladjian ASH 2018, video 1
David Wallace, PV Reporter, interviewed at ASH 2015
Переглядів 966 років тому
David Wallace, PV Reporter, interviewed at ASH 2015
MPN Blood Cancer Awareness - Public Service Announcement September Broadcast for TV
Переглядів 2,2 тис.6 років тому
MPN Blood Cancer Awareness - Public Service Announcement September Broadcast for TV
PV Reporter Interviews Dr. Jean Jacques Kiladjian at ASH 2017 - video 2
Переглядів 2126 років тому
PV Reporter Interviews Dr. Jean Jacques Kiladjian at ASH 2017 - video 2
I don't like her because she advises patients to "Watch & Wait" for their cancer to progress; i.e. wait until their blood counts get worse, before starting them on interferon to slow or stop disease progression. She never tells them it's sometimes possible to attain "Minimal Residual Disease" on interferon, especially when started early, at the time of diagnosis, when the cancer is still in its infancy. Lastly, she doesn't mention Pegasys interferon is an option to Ropeginterferon and is 4 times less costly and its side effects are often less intense.
Mu RBC 5.91 hematocrit 44.6 hb 14 is it normal?? Plz tell
Seems to me that blood letting is a bad option with PV??
Thank you for your input. For the first few years I had PV, I only did phlebotomies because I didn't want to take cytoreductive treatments. After regular phlebs and some gone wrong, I decided medication was a better idea. Glad I did, as I have been in remission for 4 years now thanks to Pegasys interferon.
HB 17.0 Hct 53.0 RBC 6.5 WBC 12.4 PLT 371 Jak2V617f mution negative Epo 11.0 MPN negative Polycythemia Vera Ho Sakta ha ka Please gaid me sir
It's pv??
Interesting information. Thank you.
What about interferon’s Alfa 2a 😮some people get remission from MPN patients
No doctor has ever asked me any questions regarding lifestyle except smoking. What about nuclear testing “dyes”, angiogram dyes, workplace hazards, sleep apnea, and on and on. We want cures not toxic drugs.
I have polythycemia rubra vera ! I was diagnosed with it shortly after I lost my mom and I had just got divorced from my ex wife ! I also have high blood pressure and I just thought I was depressed from losing my last living parent or my blood pressure was up from all of the stress I was under ! I went to the doctor and they took some blood work and then I found out
My best wishes to you x
I was diagnosed at 25. Im 44 now
Hi sir
How is it going man?
I was 10, when I found out
Stroke at 46, just turned 60!
What happened at 46? And 60? What’s your treatment? You live with pv for 50 years?
@@KhashayarKamali I take a prescription blood thinner, I had a stroke at 46, left me with right side weakness and short term memory problems
@@tammywade3649 oo I hope you will be ok, so how many years do you have pv? & do you get interfron or another drug for your pv?
found at at 16 kinda in the same situation. Definitely giving me some hope 😊
Well done you ❤ awaiting the surgery bit scared
Is it advisable to supplement with Glycine and NAC for PV patients?
3 years ago for me!
Diagnosed at 41 now 63 have to follow a good diet exercise and take the bad days with the good like everyone else
By the time he gets to the point you'll die from old age, Goddamn he was aggravating
Agreed
Promo_SM
What happens at the end of life
I have had it since my early 20s, now I’m 50. I keep up with my blood donations and that helps.
How do you handle low vitamin D levels? I pretty much average a blood letting once every three months to keep levels in check
@@Kenny-bj2zq Hi, thanks for asking, I take a Vitamin D supplement everyday purchased from the Vitamin shop. Plus I get outside in Sunny Fl and ride mountain bikes all through the area. I also take Vitamins such as multivitamin, vitamin C, magnesium, and a B series supplement. All work pretty good to keep me balanced and in shape ready for the ride and my strenuous job. Hope this helps!
Why can't the oncologist just shoot us straight with it instead of us having to do our own investing ?
I have high RBC, high Hemacroit and high for 8 months and feeling so fatigued. now my úric acid is up and I have horrible headaches, bone pain, chest pain and my Dr won’t refer me to a hematologist. I’m only 48 and my life has changed since last December I can’t play with my dog as I used to and these chest pains are worrying me . Not sure what to do.
I asked for a referral to a hematologist and was denied also. My labs have shown High RBC, High Hemoglobin, & and High Hematocrit for YEARS. Fatigue - itching- and other symptoms. I called a Hematologist office on my own- asked them to look up my labs. I was given an appt. Just had today- dr is not ruling out PV. Ordered an EPO and CBC w/ differential. He said it could be I have some oxygen deprivation- I have Pulmonary Fibrosis but O2 STATS have been above 96% except at night but still above 89%. My CBC came back and showed the usual. I am waiting on the EPO result. He said it may help but said he has very low expectation of PV. Asked me why I thought I should see him and went on and on about why my labs were fine. Yet ordered labs and talked about JAK2 but did not order.
@@JazzySerendipity so I finally called on my own City of Hope and they booked me right away Thai week The Dr said my tests were not that bad, However as I told him I feel horrible and I’m desperate so he order CBC EPO Jack2 MNP and another that I can’t recall so I’m currently waiting for results which they said it should take 7-14days
@@bobbirice4420update?
@@bobbirice4420 I am seeing the hematologist tomorrow for high red blood cells, low EPO. Wondering how high your levels were and what the outcome was?
stop eating sugar and plants in general. try fasting.
my husband also diagnosed last July 10.blood waste 3 times since he diagnosed but his bp go down to 90/60 he is taking hydroxynauria 3 times a day monday to thursday and during Friday until Sunday 2 capsules after breakfast and 2 capsules after dinner
Try Serrapeptase or Lumbrokinase
Telling us nothing....
42
Thank you Doctor Zeinah
Thank you Mr. Wallace
You are very welcome, thank you for the feedback and stay tuned more exciting things to come!
I have mylofribosis...for the past few months i am super duper scared i live in trinidadany advice please thank you
I am 67 years old and I was diagnosed with polycythemia Ruba Vera since 2010....was doing real good until few months ago when my doctor put me on 3.5 grams of hydroxyurea.....that bring down my wbc to 2.7 .. rbc 1.56 ... plt 391 ..hgb 7.2 ..hct 17.7....can you tell me if I should do a blood transfusion please thank you
Them want me to do a bone morrow byopsy and I am very scared I did one in 2010 that was very painful.....any advice please thank you
My last cbc reading was on the 27th of april last month ❤thank you all for this group
I was diagnosed at age 50. I'm now 61
What is the financial cost of treating PV with interferon alpha?
6000 $ a month for 1year without insurance, there after once in a month costing 1.5k $ for upto 5 years then if ur lucky no medicines required only routine blood works
zero $ if have insurance and a foundation grant to cover copayments
I was diagnosed with this 2 years ago and I am taking hydrea for it ! It takes a lot out of you ! I lost almost 40 pounds in about 3 months but I've managed to gain a little weight back
If the avg age of diagnosis and treatment at Cornell is 50 yrs and they subsequently develop AML at 30 yrs they've already lived a normal life-span.
What about a study in people in their 30s?
u can live upto age of 65 to 70 provide u don’t smoke , have a strict balanced diet with routine checkups
@@babumanu895 really?
@@kuleshwartandan784 I believe in the only meta study I saw that split into 3 qge groups, under 40s had q significantly higher span something like 37 year median.
37 years from diagnosis I mean
@@kuleshwartandan784hi bhai...from India...abhi kaise ho ??kitne saal ho gaye treatment ko??Kahan se treatment lete ho ??
I was diagnosed with PVera when I was 31. I am now 51.
Hi 👋 thank God u managed well your condition 😊. May i know what is your daily diet? From breakfast to dinner? And what you drink for your safety? Thank you so much for your reply. Greatly appreciated.🙏🏿
I’m now on my 31 and diagnosed Pvera can you share your life style during 20 years with Pvera
R u take medicine life time 🙂
hi.what is your diet?medicine also.thanks
All thanks to Dr Ojeabu on UA-cam i was seriously diagnosed with HPV virus, Dr Ojeabu cured my HPV virus, he also cure HIV virus, Hepatitis A B and C, HSV 1&2 and Fibroid.
I was diagnosed with ET at 24. Only 32 now
I was diagnosed solely because of a random CBC done, mostly out of curiosity to see my results. If I hadn’t done this, I probably would still not know, as I’ve had no reason to actually be checked.
Thank you, very interesting information.
Glad you enjoyed it!
how to get iron back?
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Thanks for the interview 👌
Our pleasure!
Great vids! I think you deserve way more views! I think you should google SMZeus . c o m! Ever since I started using it on my main channel my videos are ranking much better!!
This interview by Mr Wallace is extremely helpful.
Thank you Dan, I'm glad you found the interview informative.
Great interview. Very helpful.
Thank you so much, I'm glad you enjoyed the interview!