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Diagnosed polycythemia vera at 26: Any young PV patients out there?
Blood Cancers & Disorders | Last Active: Jan 1 10:39am | Replies (44)Comment receiving replies
Some patient forums have young patient forums. You might find good support there. I wish you the best and remember, you are the patient and in charge of your healthcare. Sometimes hematologists do not give the support we would like regarding symptom management. The forums can help you under stand symptoms, side effects of treatment and possible remedies. Also, the overwhelming advice you will get is to find an MPN specialist. If none bear your, you might be able to establish a contact with one through remote visits. The specialists partner with the local hematologist to provide care. This is a rare disease and sometimes hematologists are not up to speed on latest treatments. I would advise you to push for bone marrow biopsy and comprehensive genetic analysis if you can afford it.
Replies to "Some patient forums have young patient forums. You might find good support there. I wish you..."
@eloise999 Hi! Thank you for your advice. I am very fortunate in that I am already getting excellent care from a reputable doctor in the field. At this moment a bone marrow biopsy has been discussed but not scheduled yet. It will most likely be scheduled in January at my next appointment.
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@eloise999 Why would you push her to go for a bone marrow biopsy? She stated that she can’t afford the current methods and that she is afraid of needles. If she tests Positive for the JAK2 gene she can be diagnosed soley by that and her labs. Her treatment will be the same. She needs some
Moral support and I hope she can find someone her age to help or she can get it here from us. I’m 59 and diagnosed with PV three years ago. She can ask me anything and I will be honest. If her doctor has any bigger concerns and wants to do the bone marrow test, then she can discuss it, but she needs to know that her treatment will be the same for PV with or without it.