You are here

Oncologist says CML doesn't cause pain ????

Categories:

I am not stable yet I was at 27% the last time I was tested and the last test that McLaren Karmanos Flint did on me the lab they used messed my test up so I don't know what I'm at and my doctor keeps on talking around me and ignoring my request to take another test. I asked him how is it my fault your lab screwed up. Also I'm still in bad bone and joint pain and my ribs are killing me . Guess what he said " He  said CML doesn't cause the pain I'm having and he doesn't know what to tell me" Those were his exact words . I think i need to switch cancer doctors because I've never seen someone so blatantly ignorant and rude as my Oncologist. The side effects from CML and Gleevec both say bone pain and joint pain but he says it has to be something else and he wants to send me over to a general doctor so that this general Doctor can figure out whats wrong with me ? Has anyone ever heard of this before ?

I have been in pain for a while now and I take opiods and want to get off them but I do construction and I don't know what other option there is because my cancer doctor says he doesnt know how to treat pain he says he is an Blood doctor not a pain doctor. I tried Gabapentin but it makes me feel weird and worse than the opiods . I'm trying to find some relief but my Oncologist just acts like he has never treated a cancer patient and he always says he is just a Hematologist not a pain doctor . I feel like he is just ignoring me . I just feel helpless so I'm going to see this General doctor he wants me to see and I'm also making an appointment with a pain management office . I just feel like no one wants to help me and I'm depressed because I can't take the pain and don't live a normal life like he said when I first met him he said your life will be normal. My life is no where near normal .

Sounds like a new oncologist is exactly what you need. I had a different one for 6 months due to being away for work and he was a jerk. You want someone who actually takes a second to hear you out. I had bad pain in my joints and tail bone when I was first on TKIs for a few days but it subsided. Also had headaches. TKIs attacking the bad cells initially does cause pain and many people report ongoing joint pain of differing degrees.

It is important to get good labs because that is what treatment decisions are based on. If you have only been on TKI for a little while your pain may subside and you will forget you even had it. Hope you find a better oncologist and have sustained pain free treatment.

It may be right that the CML does not cause the pain, but it is most likely the TKI your oncologist is prescribing is causing it - you could suggest he reads the leaflet which comes with the imatinib (Gleevec). For me (and most people) the bone pain from imatinib goes away over around 6 weeks after starting so hopefully you'll find this improving soon.  I agree it sounds like you need to see someone who can deal with your condition better than this guy. 

I had bad (Grade 3/4) bone pain and neuropathy with imatinib. It’s common enough but usually goes away after a few weeks / couple of months but in my case it didn’t. My doctor wanted to see whether it was imatinib causing the problem so we decided to stop taking the pills and a bit of maths sugested that if it was caused by the drug it should clear my system and thus symptoms subside after 5-6 days. As if by magic, the pain went away exactly as predicted.

I switched to dasatinib and the deep bone pain and neuropathy didn’t come back. Dasatinib still causes me a bit of muscle cramping but it’s nothing compared to the pain I had before.

David.

The same thing happens to me, my doctor tells me that CML does not cause pain, that the growth of white blood cells does not imply pain and I feel the opposite. I had to go to a pain doctor and he indicated an opioid named here in the USA like Norco.
It seems to me that doctors should first have this type of cancer in their blood so that they take us seriously and at least listen to us. I fell into a deep depression because I could not bear the pain in my legs and ribs

I'm on dasatinib 100mg a day and at first I felt good for 6 weeks. Then it all came back again. All my joints hurt very bad and my ribs and lower back kill me 24/7 and my muscles in my back and legs ache all the time. I have been taking CBD pills, cream and tincture and it helps a little bit but I can't afford all the CBD I need. The Cancer Doc sent me to pain management cus he says I don't need opioids but I think I do. I still work doing construction and I don't work hard at all anymore because I'm so sore all the time. They told me I was addicted to the opioids and I told them no I'm not. So pain management wanted me to get off slowly because I was taking 10/325 Percocet 4x a day. Well I got off by myself in 2 weeks. Went back and they didn't know what to say. I told them I'm not addicted I'm in Pain ! So now I'm back in pain again and only taking CBD and can't handle the pain. I drink Beer all the time and would never ever take Heroin but I can see why alot of people take it because they force you off opioids and expect you to deal with pain that is just rediculous . I think I need to positively get a different Cancer Doctor .