Is pain to be expected with CLL?

[Handley]

Hi everyone! I am starting to get a very painful but occasional burning ache in my upper arms and pelvis - so far only when in lying in bed at night or early morning. It seems to last around 5-10 mins and then wears off. Is this to be expected with CLL? I am about to start 2nd line treatment with Acalabrutinib, but this has been delayed for around 3 months due to (benign) prostate complications and operations. I've enjoyed a remission of around 2 yrs following chlorambucil and obinutuzimab. I'd appreciate any comment or suggestions about joint pain as this has come as an unpleasant surprise.

Recent blood background over last 3 months and my operations, has seen Hg boosted by 7 units of blood, WBC increase from 30 to 120, platelets remain low at around 40-50, GCSF jabs to support neutrophils which tend to bounce around, and lymphocytes quadruple in line with WBCs.

Any thoughts would be appreciated. Best wishes to all - Handley

[kitchengardener2]

I have been taking Acalabrutinib for 13 months without side effects. I do however get variable pain in my joints, hips, shoulders, elbows and hands. I was told that this is not connected to the CLL and my CNS told me when I first started taking the Acalabrutinib that I might notice it. Not a concern and to just take paracetamol. It doesn't worry me much so I just try to get on with life. I am 70 years old so I guess a bit of age related arthritis might be to blame but there is a condition known as Migratory Arthritis. Good luck.

Alice x

[Handley in reply to kitchengardener2]

Hi Alice and thanks for your reply. I only had one Acal capsule before it was suspended, as explained, so it can't be that - which might be good news going forward. I do take heart from your saying that you have been free of side effects; long may it continue for you.

Good luck to all of us!! Handley

[Miu48]

Hello Handley. I experience intermittent joint and muscle pain. I believe this is a side effect of treatment though (I’m on O&V). Today is particularly noticeable for me, I have pain in my shoulder and upper arm and also my hip and thigh. Emma

[Handley in reply to Miu48]

Sorry to hear that Miu48 and thanks for sharing. Maybe the truth is that pain symptoms can be initiated in different ways in different patients depending on how we react individually. Some of you share my symptoms but apparently for different reasons!! Hopefully there's a reasonable chance it will be temporary as our meds change. Best wishes Handley

[Unglorious in reply to Miu48]

Hi Miu48, just read your responce to Handley, experience pain in my shoulder, neck and arm as well. I am attributing the pain to my taking Acalabrutinib and a statin at the same time. So I have changed the timing when I take these. This only started about 4 days ago, funny enough, because I have been taking Acalabrutinib since July 8th 2022. Once I take a warm shower the pain abates enough that I don't have to take Tylenol or apply Voltaren. Seems to be one of the side effects of taking a BTK inhibitor. Please update me as to how you coping.

[Handley]

Thanks for that Hawk. Now you mention it, I'm on GCSF too and am grateful for the heads-up. Will raise this when I see my consultant next week. Rather like cramp, the only thing for it is to get out of bed!! Cheers Handley

[AussieNeil Partner Administrator in reply to Handley]

Tylenol/Panadol/APAP can relieve the bone marrow pain from GCSF shots.

Neil

[Handley in reply to AussieNeil]

Thanks Neil. That's kind of you. Cheers Handley

[SofiaDeo]

Do you have any enlarged internal nodes that might be pressing on something? I had a few that gave intermittent awful stabbing pains when my large bowel was filling, it seemed.

I do get deep bone pain in my pelvis & thighs when my CLL is active, I am told this is unusual.

[Handley in reply to SofiaDeo]

Hi Sofia - and thanks for that. I don't think I have the former, but I do recognise your pelvis and thigh comment. Just our luck to get it if it's unusual!! Will bounce this off my consultant next time. Thanks again - Handley

[SofiaDeo in reply to Handley]

FWIW, I use tramadol as a pain med. I get a mild CNS stimulation instead of drowsiness, similar to a cup of coffee. 50mg AM & lunch, gets me out of bed & moving. I can't take it at night, the CNS effect is mild but enough to prevent sleep.

[wellbeingwarrior]

I have had a deep aching pain in my left lower leg throughout this year. In W&W, no current or previous medications taken. It is more noticeable if I wake in the middle of the night after being asleep a while, and now while I am actively exercising I feel it quite a bit. I believe it to be bone pain as there is no musculoskeletal injuries past or present I can attribute it to, and I'm very active and pretty in tune with my body.

I also have intermittent pain under my armpits, sometimes radiating across into the side of my chest. I have just had a torso and neck CT scan to investigate lymph node activity, so wait to see if that is the explanation for the underarm pain.👍

[Handley]

Thanks wellbeingwarrior. I hope a resolution to all this can be found soon. Maybe your GP can direct you to relevant consultants? If one can't help, maybe another can? Handley

[wellbeingwarrior]

Thank you Handley. I have a lovely Haematologist here in NZ who is moving to Canada to a new role of Medical Director of Janssen very soon, He is leaving me with a gift .. we’ve just organised a hospital drawn blood sample to be sent to Australia for IgHV mutational testing. We don’t have this available in NZ so I’m stoked 🤟