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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)Comment receiving replies
Hi Keith, When someone gets a diagnosis of a blood cancer it’s pretty natural to experience fear. Myeloproliferative blood disorders should be taken seriously because, by definition, they can proliferate. So each patient’s situation needs to be diagnosed independently and with the help and guidance of their hematologist oncologist make the right decision based on their educated diagnosis.
You’re right, with PV, not everyone requires treatment right away besides aspirin and phlebotomies. But again, it is a myeloproliferative disease which can advance. Some patients aren’t aware of how long they’ve had PV because it is discovered unexpectedly in blood work. So by the time it’s diagnosed they may require treatment right way and are not able to delay the progression. With PV only the red blood cells are proliferating. In your wife’s case you mentioned her platelets and white blood cells are off the charts. It would appear that her situation is advancing.
You’re also wondering if there is natural way to reduce CBC numbers. If this is an underlying cancerous condition where the bone marrow is defective, numbers most likely won’t change through diet or nutrition. Cancer cells will proliferate because the mechanism that can prevent this from happening has fooled the immune system.
Does your wife’s peripheral blood work show signs of blasts?
Has she had a bone marrow biopsy?
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Ms. Lori, you are such a gem!
I too have had some fear and believe fear is a good thing if it motivates not stagnates. Information is power, there are a lot of different views I think to fit different situations and we are all different and have different needs and treatments. Ms. Lori has been tremendously helpful and level-headed. I'm in a not know stage of PV. We can't find the cause so far, we have checked my stomach organs, and nothing significant. I found labs from 2015 where my RBC and HT were elevated if not high. So I've had it for a few years now. I've been referred to a cardiologist now and also referred to a sleep apnea test. I understand from my doctor that sleep apnea can cause this elevation. I know I have not slept well since my cervical injuries and surgeries in 2003 and 2006. So we are still looking for the cause and again if I understand correctly, if we don't find an obvious cause then I could still have PV and my body or bones or bone marrow could just be screwy. The issue is when you don't have a clear-cut gene-supportive diagnosis or have clear-cut damages. I've got damage but it's age-related or injury-related so I don't have a clear-cut PV result at least yet.
We have tried one phlebotomy to see how I respond to it. I just had that done this past Friday.
We are all different, and this disease is different and has variations and versions, and well not all is known about it either. There isn't necessarily a finite answer or diagnosis or treatment for all. I hope everyone finds that perfect individual treatment that makes them feel better and has a good doctor and support. If I can help anyone to listen....I'm here! slow sometimes but I'm here.
Thank you Ms. Lori for all your level and supportive words and all on this site. It gives me lots of resources and a comfort.