I'm So Poooed Right Now

[jessie0054]

Hello:

I am so mad right now i'm shaking!!

My son has a bone marrow disorder called Polycythemia Vera.

Fot the last almost 6 years he has been followed by an Oncologist and had Phelbotomies done regularly when his HCT levels are at 45 or higher and had been told by the Oncologist not to let the HCT get any higher than 45 and best to keep it at the hightest 42 to prevent Heart attact or stroke.

Recently he moved to South Carloina and has no Oncologist set up, Today he went to one of those VA Clinics in a mall and had blood test done because he is having symtomps of the disorder again such as fainting and dizziness, confusion and shortness of breath. His HCT is 52 right now.

The Clinic refused him a phelbotomy because by their standards his HCT is qoute " Not High"

Maybe not by their standards!! But with someone with this disorder it is very high. Do they even have doctors in these clinics??

He was also having a great deal of pain with his back and they told him they couldn't do a MRI because he has metal rods and screws.

Anyone else have a problem with these clinics??

Jessie

[jessie0054]

Just wanted to say thanks to all.

I just got off the phone with my son who called the PT. Advocate , Didn't get the Phelbotomy done today. The best they could do was to set him up an appointment for next Tuesday with the Hem/Onc department in Charleston.

I just have now to copy off all his Cancer Treatment Records and get them to him by then.

Jessie

[Hoppy]

jessie,

My only comments are that the symptoms he is having could be associated witht the back pain. Especially if it is high back or neck. I used to get so dizzy I could hardly stand when my upper trapezias (not sure about spelling) would spasm. This is a big mussle around the shoulder area up into the neck. I had a MRI that only served the purpose of knowing what was causing the spasm. I did neck excercises and the pain and dizziness went away. It might work to get into physical therapy for the pain. It took me 2 months to get into rehab at a VA clinic.

From merck.com

Myelosuppressive therapy: Myelosuppressive therapy may be indicated for patients with platelet counts > 1 × 106/μL, with discomfort from visceral enlargement, with thrombosis despite Hct < 45, and with symptoms caused by hypermetabolism or uncontrolled pruritus as well as for patients > 60 or those with cardiovascular disease who do not tolerate phlebotomy well.

Edited March 2, 2007 by Hoppy

[jessie0054]

Hi Hoppy:

His Back pain is the low back, Since before he was diagnosed with Polycythemia he had complaints of Dizziness, Headace, weakness shortness of breath at times and Chest pain. For him usually when he starts having a headace every day it a signal that it's time to get a cbc done and then a phelbotomy.

Jessie

My only comments are that the symptoms he is having could be associated witht the back pain. Especially if it is high back or neck. I used to get so dizzy I could hardly stand when my upper trapezias (not sure about spelling) would spasm. This is a big mussle around the shoulder area up into the neck. I had a MRI that only served the purpose of knowing what was causing the spasm. I did neck excercises and the pain and dizziness went away. It might work to get into physical therapy for the pain. It took me 2 months to get into rehab at a VA clinic.

From merck.com

Myelosuppressive therapy: Myelosuppressive therapy may be indicated for patients with platelet counts > 1 × 106/μL, with discomfort from visceral enlargement, with thrombosis despite Hct < 45, and with symptoms caused by hypermetabolism or uncontrolled pruritus as well as for patients > 60 or those with cardiovascular disease who do not tolerate phlebotomy well.