Behind the Mystery, Polycythemia Vera
Vložit
- čas přidán 23. 04. 2017
- Every year, millions of patients, families and caregivers are impacted by cancer in the United States. Some cancers are well-known, but others are quite rare. Polycythemia Vera (PV) is part of a group of rare blood cancers called Myeloproliferative Neoplasms (MPNs).2 PV occurs when the body produces too many red blood cells, which causes the blood to thicken. Thickening blood could lead to clots, which can block blood flow through arteries and veins. 2 This in turn could result in serious health problems including a heart attack or stroke. 2 Join us as we discuss the diagnosis and symptoms of PV with hematologist, Dr. Shachar Peles and his patient with PV and learn more about PV and MPNs at www.VoicesofMPN.com.
Visit: www.thebalancingact.com
Like: / thebalancingactfans
Follow: / balancingacttv
#TheBalancingAct #BalancingAct
103927 - Zábava
I had Polycythemia and had to get a phlebotomy about once a month, because my Hemoglobin was around 55 g/dl and my Doctor ordered it.
Finally I wondered about people with Anemia that were short of red-blood-cells analogously like an opposite to Polycythemia!
Then I looked up the foods that people with Anemia do not eat because they are iron blockers.
Many of these foods are called Oxalate's and absorb Iron. So then I started eating these foods (with Oxalate s) abundantly and after a
few weeks I had my Hemoglobin checked by my Doctor and my Hemoglobin was down to 16 g/dl and now over a year later my Hemoglobin is still 16 g/dl. That is a drop of 39 g/dl’s in a very short time and it held good. Sometimes just a simple procedures are workable.
Of course I believe that my mental procedures, meditations & thoughts had something added to this procedure that was synergy related that made it more effective.
Make it clear that I am not prescribing
anything to anyone, but expressing my own thoughts and experience.
However I would recommend that medical personnel investigate this.
Cordially, Robert Shrewsbury
Hello, which types of oxalate containing foods did you incorporate, and how many per day?
@@SeaFlower38 There are a loot of oxalates and I ate a lot of them, they are listed on the web under Oxalated. Oxalic-acid diluted to a Ph of 6.2 I do wonder about??
@@SeaFlower38 I'm kind of curious about that as well. Which foods are oxalate rich?
How much can be SAFELY consumed? I thought the best (or at least standard) way to treat Polycythemia Vera is to draw a pint of blood from the patient every month or maybe every two weeks?
Thank you for that. I was just diagnosed with it today. I don't think its cancerous. You just gave me hope. Thanks again
@@jseven7096 Did you go through a bone marrow biopsy before you were officially diagnosed? Just wondering. I really hope I don't have to endure that. I hear that bone marrow biopsies can be extremely unpleasant.
Many thanks for the interesting ...,,
Hi, I'm Arisa from Indonesia I am 24 years old
im married 6 march 2021
i dont have a baby yet
and 19 September 2023 the doctor diagnosed that I had polycythemia vera
She’s stunning
I was diagnosed last year. So far i’ve just numerous venesections done and take aspirin daily.
Can we cure from disease with just Aspirin is it ok?
@muhammadsuleiman9840 No cure for this cancer.
@@muhammadsuleiman9840 there is no cure. Management is all we have so far. At the moment I have routine blood tests to check my hematocrit levels. If the reading is over 0.45 I have a venesection (500ml of blood removed). If it’s 0.44 or under I can rest easy for another month! So far i’ve only managed 4 months without needing a venesection.
I'll find out in 1 week if I have this even tbe jak2 test comes back
Updates?
Amber Milt's surname is the Dutch word for spleen.. How coincidental! (PV patients often have enlarged spleens..)
Wow, that's crazy!!!
Robert died in December. I believe he recommended foods that normally cause anemia. You can find lists for that. If you use berries, use small amounts.
Thank you sharing this information.
please help
The mystery is, 'if you live near a Coal Ash dump, move!
What is the treatment for this condition I suffer from it
She seems to be a competent interviewer, but, My God, NOBODY MENTIONED WHAT TO DO TO REMEDY PLYCYTHEMIA??!!! i.e....GIVE BLOOD. How do you do an interview and leave that part out?
Apart from giving blood, drink LOTS of water, make sure you don't allow your body to goto dehydration cuz by the time u are thirsty and you drink water you are already dehydrated, so keep drinking water pre emptive.
Keep moving about as much as you can. Aerobic exercise is good. Because thick blood along high BP (IF) you have is dangerous. If you are over weight, then it's imperative u lose weight cuz PPL with thick blood their heart has to work extra hard as compared to PPL with normal Hemo.G. so begin over weight with high BP and thick blood = ticking time bomb.
I think it is not safe to receive blood from a PV patient...?? but not sure.
i have Polycythemia not vers see my doter six mouth he told he can 't help my number is 18 blood cell
Huh???
I just got diagnosed with this shit im 31 for fuck sakes
My doctor has a suspicion for me too. I'm 34 and have had Hb over 18 for several years. What was your Hb level when diagnosed? Any progression/remission of the condition?
As long as you go with the treatment plans, you "should" be fine. I know of people with this cancer that was diagnosed 20-30 years ago and still kicking.
The patient mentions a bone marrow biopsy. I hear those can be really horrible and quite invasive. My hematologist hasn't ordered it YET, but I'm fearful he will. Why can't they just do those procedures in hospital while the patient is anesthetized or at least given a spinal epidural?
You certainly have a right to refuse a biopsy. I'm with you - high anxiety just thinking about it! My decision is that as long as the treatment is working (I am on oral chemo) there is no need for a biopsy.
@@nancyhitchcock42 What type of chemo? Yeah, long story short, I was in the hospital last month. Drove myself to ER because of very bad chest pains and shortness of breath. They told me my heart was okay, but that I suffered from multiple bilateral pulmonary embolisms. Not good! Now I'm on Xarelto and wearing compression stockings on most days. The problem is that pulmonary embolisms are not really a disorder. They are usually a symptom of something else going on. My hemoglobin and hematocrit are pretty high, which led my doctor to suggest I consult with a hematologist. The hematologist believes I'm probably polycythemic, but doesn't know if I have primary Polycythemia Vera or secondary Polycythemia Vera. The primary variety comes from a defect in the bone marrow. The secondary variety is more complex, and can be caused by different problems, even sleep apnea! Bottom line is I probably need to be on a blood thinner for the rest of my life since having too many red blood cells thickens the blood, and makes me more susceptible to excessive blood clotting, hence DVT's which eventually turn into pulmonary embolisms. Geesh! This is the beginning of a scary medical adventure. I'm hoping that by August they understand what's going on better. I'm actually very anxious about what they might find. But if they find nothing, that's not very reassuring either because that leaves the question of why this happened to me still unanswered. I hate this stuff. Oh well. I'm glad that at least I'm basically okay, walking my dog, and able to take care of myself. It could have turned out so much worse.
Douglas u have you been diagnosed with PV ? Cuz if you are then bone marrow biopsy is necessary to see what kind of treatment will suit YOU because everyone who has PV will not have the same line of treatment as you.
It's better u get it done than risk getting DVT which is far worse than the side effects of PV WHICH can be managed.
In a scenario you tested negative for PV then Bone Marrow testing is not required ( according to WHO) but some doctor s still insist on BM testing.
Ever had a toothache? I've had 2 bone marrow biopsies over the years. I have a high pain tolerance. To me, it felt like an instant pulsating toothache that lasted for a few days.
My blood doctor said it is not a cancer so is it a cancer or not yes or no
Kathy Spriggs WHO classify it as cancer, but most doctors around the world disagree as there is neither abnormal nor malignant cells being produced and released into blood stream. For most people, blood letting (phlebotomy) is the only required to treatment to continue leaving normal life.
The wayward cells can all be traced back to a single mutated cell, which duplicates itself just like other cancers. It is cancer, but can frequently be controlled pretty well. PV sometimes progresses into other conditions, including leukemia. Doctors who don't consider it cancer are simply uninformed or dismissive. Look for a specialist.
Rosemary urbas 6 years ago
I have had no treatment and my current doctor doesn't want to do anything about my blood cancer.
Was on my medical file since 2013 June. I need to speak to some one that can help. I am in Australia.
It is a blood cancer.
The headaches and fatigue are so true, went to hospital after a 2 month stretch of pretty regular headaches followed by 6 days straight, it's not fun
It is a blood cancer but clinically it does not behave like other cancers such as a lung cancer or pancreatic cancer u can call it as a low grade cancer
Kind mo
By cu
Pop muu