Brother Newly Diagnosed with CML

[Guest guest]

Hello,

My name is Maureen and my brother , who just turned 23 (and was

seemingly the picture of health, an avid and fit skateboarder) was diagnosed

with CML about 2 weeks ago. What led to the diagnosis was the blurring of

the vision in one of his eyes which was determined to be 6 small

hemorrhages. Upon a physical later that day, his spleen was also found to

be enlarged and a blood test confirmed results. Once the diagnosis was

known, other symptoms fell into place that had previously been unexplained

including odd bruising for up to a year and strange rashes as well as severe

hip pain.

Unfortunately, had a terrible experience with his bone marrow biopsy

and has been in the hospital for almost 2 weeks now. The night of the

biopsy, had horrible pain in his right hip (same side as the biopsy)

and had to go to the emergency room. The next night, same thing, and was

sent home with oral pain killers that were not managing the pain. Finally

the next morning he was admitted to the hospital and the doctors saw a small

area on a CT scan that could be either an abcess, a hematoma, or a

collection of leukemia cells. To make a long story short, after more tests

and several scary days, they finally became convinced that it was a hematoma

resulting from bleeding caused by the biopsy. ( also bled profusely

from the biopsy site for the first few days and the wound continued to ooze

for almost 10 days and was surrounded by a horrible bruise.)

Unfortunately, this bleeding inflamed the surrounding muscle and pressed on

his femoral nerve and as a result, his leg is completely numb on the front

side and he is unable to control upward movement or walk normally. He has

been on heavy painkillers but they are slowly getting the pain under

control. It seems that the only thing to do with a hematoma is to wait for

the body to reabsorb the blood and that hopefully over time the inflamation

will subside and his nerve will recover and regenerate but they say this may

take months. We are hopeful he can come home tomorrow.

So it has been very trying for him having this horrible experience on top of

the initial diagnosis!

On the positive side, his white blood cell count which was very high at

diagnosis (256 I believe) was brought down to very low levels (almost too

low, so they are now watching that) with Gleevec and Hydroxyurea. His RBC

count also went down quite low and he has to receive a transfusion.

The doctors think he may have a clotting or bleeding problem or perhaps an

artery or vein was nicked during the biopsy.

I'm curious if anyone else knows of someone experiencing a similar

complication with biopsy - anything like this bleeding and nerve damage?

Also anxious to reach out to others who were around 's age at diagnosis

since this typically presents in people much older than him.

Also love to get links to info about the latest information on Gleevec and

what's the longest someone has been on it and in remission? I see lots of

info on the web but so much of it is old.

And any advice in seeking 2nd opinion and weighing the decision for staying

on Gleevec vs. transplantation being done sooner, espeically for someone as

young as he is. (especially looking for doctors in the midwest, he's living

in Wisconsin right now).

And any tips for CML-specific resources out there?

We have started the process to see if I am a match for him (I'm his only

sibling) just so we know our options.

Thanks,

Maureen