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 .

See post by bendicco on side affects 

I had bone pain and muscle cramping when I started Imatinib - which continued when I switched to dasatnib. Dr. Cortes suggested I supplement with magnesium (400 mg per day) to minimize this side effect. He reported magnesium gets "used up" much more due to TKI therapy and can lead to functional magnesium depletion in the muscles and bone. This causes the pain in some cases. I increased my magnesium and "overnight", muscle cramping disappeared. And I slept MUCH better too. Bone pain faded over time, but likely Curcumin is what helped in that case.

If you are not supplementing with magnesium, consider doing so (200 mg in morning; 200 mg before sleep) using magnesium citrate or magnesium taurate. Avoid magnesium oxide (poor absorption). It may not solve the pain issue, but then again it might. It did for me. Getting more magnesium is good for you in any event to aid the heart. Our soils do not have as much magnesium as they once did.

Additional references:

Keep in mind, normal blood levels of magnesium can still mean you are deficient. Muscles and bone store magnesium. The blood will pull magnesium out of muscles and bone to keep blood levels normal. The deficiency in the muscles and bone are not reflected in a blood test necessarily. Blood chemistry must be kept in a tight range (especially calcium) or else bad things happen.

Many people report bone pain when starting imatinib (and indeed when coming off it).  Even more common are muscle cramps. I had the latter but not the former.  In my case, the cramps never went away entirely on imatinib but they did reduce considerably over about 6 months, and eventually I got used to them and as I say, they were not that bad by then. As imatinib was working very well, there was no need to fix what wasn't broken in my case.  I don't know about bone pain but in many cases most of not all imatinib side effects do subside in time - if they don't, or they are really bad, you may want to consider a change in TKI as many have done.  Do be aware though that they all have side effects so an informed discussion with a CML specialist is a good idea.

I am so sorry you are going thru this. I have a similar experience as stated in my original post. Have you given any thought to medical marijuana? I have an appointment with a certified THC provider who is an MD next week. I have read so much about how it helps the pain and also depression. 

Supplement with Magnesium.... definitely! Also change your doctor if you can. Glad you stopped Gabapentin - one of a very dangerous class of drugs.

I take Magnesium in liquid form...'40000 Volts' Electrolyte Drink Concentrate ... so easy to take  in a small glass of water/juice. Find it online.

Sandy

Thanks So much for your input. I will try the liquid Magnesium . I take Magnesium Glycinate right now twice a day.

When I was a teenager I smoked it but don't know what happens when you get older LOL because I don't like the High feeling anymore it makes me paranoid . Also I went to pain management and they gave me some Vicadin but I took one and since Ive been off for a year I dont like that feeling anymore so I guess I'll stick with the CBD .

Hi Sandy, question for you , do you also take calcium so that the balance of calcium and magnesium is still appropriate?

Hi Sandy. do you take any calcium to even the ratio for mag/cal?

Wondering what method of delivery you use for the CBD, vaping, capsules or  spray and what dosage helps you?

Thanks

Hi,

No I don't take calcium supplements as I eat a lot of cheese, broccoli and other vegetables/nuts etc. Calcium is stored in the body but magnesium is used up daily and is also needed in order to use Vit D3 effectively. Are you deficient in Calcium or are you just worried about getting enough from your diet?

Sandy

I take one 30mg morning CBD capsule with Guarana in it and another for lunch and then when I get home from work I'm in pain so I take 2- 30mg regular full spectrum cbd capsules. At night I take one 30mg capsule and rub CBD lotion on my shoulders and neck and lower back. The store I get my CBD stuff from makes me special 500mg/ounce CBD lotion .

I have had CML for 16 years. It has never caused me any pain whatsoever. This may be because I have, in all that time, been taking pain-killers of one type or another, to counteract angina and latterly, bulging discs in my spine, and spinal stenosis. I take 75mg amitriptyline at night, with 300mg pregabalin 3 times a day. Of course, I still get excruciating pain from, strangely enough, those bits of my body which have peripheral neuropathy - feet and lower legs, and recently, my bottom and upper legs.

Now for the good news. My latest blood test showed that the CML was undetectable. This probably means that it is hiding round the corner! My oncologist insists that I remain on the standard dose of 400mg a day. Ho-hum, I have to take the rough with the smooth, but I am 71 now, and my body seems to be starting to have had enough.

Hi, my last few blood draws show not detectable as well but my oncologist also wants me to stay on 400 mg. of Gleevec. He says 200 is not a therapeutic dose. Other than the swelling eyelids which my glasses hide I didn't have any other symptoms for the 4 years since I am on the Gleevec, but for the past month I have had electric shocks in my neck and bone pain behind my ear.  No NSAIDS or topical creams have been helpful and I did not want to be on opioids. I have begun medical marijunana, CBD and THC and it helps with the pain and the depression.  Hope this helps!

Hi Bendicco. I suggest you invite your oncologist to view this paper by Prof Richad Clark at the CMLSG 2019 patient day. Many patients who have been in MMR for some time do well on 200 mg imatinib. I did personally for 12 months before I tried TFR which lasted 17 months before I lost my MMR and went back on to  400mg. When I have regained a sustained deep MMR I will go back to 200mg, at which level I lost most of my side effects (cramps, fatigue, oedema, gastric disturbance). Hope this is of use. 

Thanks for your response!

I'm not being a smart mouth but in USA the doctors only care about there paycheck and not the patient. I just yelled at my Oncologist so I could get 2 Vicodin per day so I can make it through the day at work because I don't like to rely on anyone for my paycheck. My Oncologist said I should be on disability because of my pain and I told him not gonna happen because I have a Family to take care of and I'm not making them suffer because of my problems. I told him give me the Vicadin or I'll find another Oncologist and he gave me the Vicadin because he likes my Insurance paying for his Mercedes Benz every month . I been working like a man again since the pain pills because I can actually move now . I just fixed the cracks and pot holes in my driveway and seal coated my asphalt by myself . I actually felt like a man for the last 2 days yes

So sorry you had that experience with your doc, it shouldn’t happen! My oncologist is ok with my use of medical marijuana but only after I stood my ground, insisted he look at our forum on side effects. Low doses of CBD and THC does help the pain and depression. Do some investigation online about this. I hope you find good relief and can live the best life possible with CML!

I take only 2 vicodin a day thats it and I use them only for work. The rest of the time I use the CBD cream and capsules because they make me tired and I cant use them at work .

Got it. I tried CBD cream and it didn’t do it for my pain. I’ve tried every topical cream on the market as well with no relief! I also had no relief from NSAIDS and like you opioids make me tired and I can’t work that way. I’m glad the CBD cream works for you!!