Does your oncologist acknowledge that ET may cause bone pain?

I have heard of shin pain from others in ET support groups. Seems to have been more prevalent when docs were ordering big initial doses of HU. This stopped when doc's began starting patients on low doses of HU and gradually increasing if necessary.

Not sure how other clinics work this, but at my clinic, if you are taking Besremi or any oral chemo, you get consults with nurse and onco pharmacist. If you are prescribed HU, you get zippo. I got the best info from my plain ol' RiteAid pharmacist. But I had to ask.

Guess that answers my question. On HU went for blood work every week, then every 2 weeks now every week. Started in May it is Sept the 4th and I last saw the Doctor in May. So all I get is that my blood work is fine come back in a month. So the only questions I get answered are what I find from this web site. I had a episode of AFIB had not had it in 20 years on no meds for it except metoprolol so I saw that AFIB sometimes happens 30 days after starting HU it was almost exactly 30 days after I started the medicine.
Hope this helps someone.

I was diagnosed with ET about a year ago and started experiencing leg pain shortly thereafter (8 months ago). I really had no other ET symptoms other than a slightly englarged spleen so I was on aspirin. As my leg pain worsened, I felt like I was bounced between my GP and ET Drs for months. The bones in my legs felt like they were expanding from the inside out in little bursts, this was not neuropathic or nerve related. I don’t think the ET Dr believed the bone pain (which became more and more severe) was related to ET, even when a huge jump in my platelet count correlated to the onset of more severe pain. I started Hydroxyurea three weeks ago, mainly because the leg pain was so severe and nothing was helping. After two weeks, I had a significant drop in platelet count and a huge reduction in the frequency and intensity of leg pain. I have watched the video explaination on this channel. What I am most curious about if there have been are any studies about ET and bone pain or even any surveys of ET Drs and their beliefs about bone pain? I think that if bone pain is not recognized by ET doctors as a real complication of ET there are a lot of us who are suffering unneedlessly.

I was diagnosed with ET about a year ago and started experiencing leg pain shortly thereafter (8 months ago). I really had no other ET symptoms other than a slightly englarged spleen so I was on aspirin. As my leg pain worsened, I felt like I was bounced between my GP and ET Drs for months. The bones in my legs felt like they were expanding from the inside out in little bursts, this was not neuropathic or nerve related. I don’t think the ET Dr believed the bone pain (which became more and more severe) was related to ET, even when a huge jump in my platelet count correlated to the onset of more severe pain. I started Hydroxyurea three weeks ago, mainly because the leg pain was so severe and nothing was helping. After two weeks, I had a significant drop in platelet count and a huge reduction in the frequency and intensity of leg pain. I have watched the video explaination on this channel. What I am most curious about if there have been are any studies about ET and bone pain or even any surveys of ET Drs and their beliefs about bone pain? I think that if bone pain is not recognized by ET doctors as a real complication of ET there are a lot of us who are suffering unneedlessly.

Geez, how is your AFIB now? Did it go back to normal? Good to know!

I have the same thing, bone pain. That was one of my first symptoms to show its ugly little self to me 6 years ago. I have Triple Negative ET. I had constant bone pain but also constant pain throughout my body. When I spoke to my now Hem/Onco about this I would explain the pain as bone deep. He told me it is the MPN that does cause it. When the Besremi is working I don't have nearly the pain that I use to. I still have bad days when I can barely move because of the bone pain but it isn't every day. I have my good days and my bad days.

When I'm up and moving around, the bone pain isn't bad, but at night in bed the pain can keep me from sleeping or sometimes I wake up with the pain in toes and shins. Tylenol helps a litte, it isn't my pain reliever of choice. But I was told not to take NSAIDs- aspirin, advil

My Hemo/Onco actually suggested to me Claritin might help with the bone pain. He said he knew it sounded strange but some of his MPN patients have said it actually works. I have tried it and it didn't touch the pain for me, but it might be worth trying.