Does your oncologist acknowledge that ET may cause bone pain?

Posted by 1995victoria @1995victoria, Jun 13, 2023

I suffer with bone pain in my shins and toes. Dr says not ET or HU, just wondering if anyone else suffers from bone pain. It started a year or two before being diagnosed with ET

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@andytheman

I wish people stopped using short cuts. Many times I have no idea what they mean.
I fell a couple of weeks ago while using a walker and I fractured my lower back compression disc and another disc.
The pain is still there but I can better handle it. It only hurts when I twist it.
I have to use a cane especially outside.
I can’t believe how much falling hurts. I’m no spring chicken so I just landed flat against the floor and wall. Be careful everyone

Jump to this post

ET is essential thrombocythemia it is a chronic blood cancer, it is not as a result of an accident or fall.....This was a post in Blood Cancer group of MayoClinic
I think a group that addresses orthopedic/neurological might better address your conditions.
BMB is bone marrow biopsy.

REPLY

I was diagnosis with ET in December but my counts have been increasing for the last three years. I have been experiencing times that I am unable to make change, having difficulties remembering the name of a place or thing and at times are just in a fog. And get frustrated with my husband when he doesn't know what I am trying to describe, like he should be able to read my mind. I brought up my concerns to the oncologist and she doesn't feel that it is the hydrea but has only been happening since starting. Has anyone else experienced?

REPLY

@andytheman
Hi Andy. I’m so sorry you had the fall. My PCP is a gerontologist and she tells me that as one ages, there is a sensory disconnect between our feet and our perception of their relationship with the floor. That seemed kind of crazy to me, but as I talk to friends and other members, this seems to be a pretty common age related issue.
I wonder if some physical therapy might be helpful for you? You might ask your doctor about it. I hope that your healing will progress. Are you interested in talking to others who are recovering from falls?

REPLY

@andytheman
Ah! I see that you have found that discussion. Carry on!

REPLY
@pmm

@andytheman
Ah! I see that you have found that discussion. Carry on!

Jump to this post

Thanks for the information.
Unfortunately I went to sit on my recliner today and I was too far from the foot rest and I landed on the floor exactly where I hit the floor the 1st time as far as location in my body where I hit the floor the first time. Now my spine is disconnected between my disks. I’m in pain so I have a headache that a fractured spine can give you.
My hips, legs, back of my neck is affected and your right about the disconnect with your feet. Happens to me and I just turned 71

REPLY
Please sign in or register to post a reply.