CLL/SLL and bone pain was in both arms - CLL Support

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CLL/SLL and bone pain was in both arms

annetxfan profile image
26 Replies

Hello and hope everyone is doing well amongst this pandemic. I recently underwent a bone marrow biopsy. My doctor who is Dept Chair for LIVESTRONG with UT Mefical School Austin stated my cancer is Stage 0. Yeah! I do have questions regarding ongoing bone pain. He stated that he didn’t feel it was related to my CLL? I feel it is. I don’t want to question if he is right or wrong. Does anyone have bone pain that we’re told it is due to CLL? Thanks and keep self quarantined until this pandemic is over!!

26 Replies
JustAGuy profile image
JustAGuy

Hi, I have only heard of that associated with side effects of some CLL treatments. But we're all different...

Jm954 profile image
Jm954Administrator

Do you have generalised bone pain or is it localised in one or two bones?

Jackie

annetxfan profile image
annetxfan in reply to Jm954

It’s localized and has been worsening in the last 2 months. Diagnosed with CLL 11/19.

Jm954 profile image
Jm954Administrator in reply to annetxfan

Can I suggest that you discuss your bone pain with your primary care Dr/GP and ask him to investigate your pain as if you didn’t have leukaemia.

annetxfan profile image
annetxfan in reply to Jm954

Yes my oncologist is suggesting doing a pet scan to check and see what's causing the pain.

mickimauser11 profile image
mickimauser11 in reply to annetxfan

very good idea because cancer can cause ostheoporosis

CoolGreen profile image
CoolGreen in reply to Jm954

I was dx 2019 cll. I have been telling my oncologist and primary dr that i get localized bone pain in both my knees right after i exercise or take long walks. They both say its not related to cll but i think it is. I got xray on my knees and i have osteopenia ( joint space narrowing). I am 55 yrs old. Hope this helps.

Jewelj76 profile image
Jewelj76 in reply to CoolGreen

Osteopenia is actually pre-stage osteoporosis. I was .1 away from actual osteoporosis, but my GP had me start treatment anyway, due to my NHL years of treatment.

grammydi2 profile image
grammydi2

Hey there Anne!

Ive never had a bone marrow biopsy. Nor do I ever want to look forward to having one... But, I suffer from bone pain in my arms and the top part of my legs ( my lap).Occasionally.

Now, I am a chronic pain sufferer so hence have been on pain management for years. When things like fentanyl, morphine, or oxycontin still leave you in pain you know that it's the kind of thing that you wouldn't want to curse on your worst enemy. I'm glad it happens only every now and then! Bone pain is no laughing matter. I'm only on watch and wait and my doctor tells me that he doesn't understand why I have this because I shouldn't be having any pain at the present time during my treatment. I said that he needs to tell my body that!

On a whole other matter, my teeth are breaking off at the gum line. Which he tells me has nothing to do with CLL. But if you do a search, it has been found that it can!. Well, I digress...

But in answer to your question, I get bone pain. And I've been on W&W since '11.

Di

annetxfan profile image
annetxfan in reply to grammydi2

I had a bone marrow and it was nothing. No pain at all. Worried for nothing. Did find it in my marrow in small amounts.

grammydi2 profile image
grammydi2 in reply to annetxfan

When were you dx'd? And how long after was the marrow test?

annetxfan profile image
annetxfan in reply to grammydi2

just had bm test in March dx 11/19

Turbomotive604 profile image
Turbomotive604 in reply to annetxfan

Same here not much pain

cllady01 profile image
cllady01Volunteer in reply to grammydi2

Dental Problems

Calcium is responsible for keeping our bones and teeth healthy. When the body lacks calcium, it starts pulling from internal sources such as the teeth. Low calcium levels can lead to weak roots, brittle teeth, irritated gums, and tooth decay. Calcium deficiency in infants can also delay tooth formation, causing more problems in the future.

The pain you are experiencing can be from bone loss "osteiopenia".

Your Primary Care Dr. can check on your calcium and Vitamin D levels.

grammydi2 profile image
grammydi2 in reply to cllady01

Thanks cllady01, you know you're the best, right? lol! I've got so many other things going on also... like being Super anemic and I do have osteopenia. Now, having to be on higher levels of warfarin I also bruise like a peach! I take calcium and D-3000 each morning along with B-12. Actually, I start my day with 17 meds. And every 6 hours there's more. I tell everyone that if I shake, I rattle! LMHO!

I get levels checked by PCP every 6 months and we keep trying but not much more going to get them up. 😳

CoolGreen profile image
CoolGreen in reply to grammydi2

I was dx 2019 cll. I have been telling my oncologist and primary dr that i get localized bone pain in both my knees right after i exercise or take long walks. They both say its not related to cll but i think it is. I got xray on my knees and i have osteopenia ( joint space narrowing). I am 55 yrs old. Hope this helps.

bettyba profile image
bettyba

Hi yes I had chronic bone pain for 10 years and the specialist put it down to my multiple sclerosis but then I was diagnosed with cll/sll stage 4. On my 5th round of FCR and since starting the treatment I have had no bone pain at all. Its amazing I feel so well but 4 and 5 th round are tough I still feel better than I did. My consultant said the bone pain was due to my cll. Hope this give some clarity. Take care and all the best x

JustAGuy profile image
JustAGuy

Hi again. I am thinking that in the US, many of the CLL patients on this forum have not had bone marrow biopsy. I may be wrong about this. But maybe your doctor was actually looking for the cause of your bone pain? You said your doctor is head of his department, so he must have experience. But is he a hematologist / oncologist who specializes in CLL?

narl profile image
narl in reply to JustAGuy

Right. I have had CLL for 15 years and I’ve never had a bone marrow biopsy, I don’t plan to ever have one either they don’t really have a need for those in my opinion they can get info they need from the blood. No one has ever asked me or told me I needed one either. I don’t have a CLL expert for a doctor I have a hematologist at a NCI cancer center.

annetxfan profile image
annetxfan in reply to JustAGuy

Hi, yes my doctor William Matsui is an expert in CLL/SLL. He is was a guest speaker for the Leukemia Lymphoma Society Texas Chapter this past March. He’s new to Texas but was very well known at John Hopkins.

Big_Dee profile image
Big_Dee

Hello annetxfan

I had a bone marrow biopsy after being diagnosed with CLL and to confirm same. Did not have any pain, just felt a pressure. Before my doctor did my bone marrow biopsy he explained to me that there are not any nerves in the bone marrow, just muscle and bone. When I get check up blood tests, my calcium is checked so I take four tums a day. My doctor will vary amount of tums based on test. Blessings.

CoolGreen profile image
CoolGreen in reply to Big_Dee

Why are you taking tums? Why not calcium supplement with vit D? I have osteopenia. Low in calcium levels too.

Big_Dee profile image
Big_Dee in reply to CoolGreen

Hello CoolGreen

I take tums at my doctors recommendation. I also tested low on vit D and therefore was taking vit D long before tums.

CoolGreen profile image
CoolGreen

I was diagnosed in 2019 with cll. I have been telling my oncologist and primary dr that i get localized bone pain in both my knees right after i exercise or take long walks. They both say its not related to cll but i think it is. I got xray on my knees and i have osteopenia ( joint space narrowing). I am 55 yrs old. Hope this helps. How old were you when you were diagnosed with cll??

annetxfan profile image
annetxfan in reply to CoolGreen

I am 61 and dx in November 2019.

CAJan profile image
CAJan

Diagnosed CLL/SLL 6/2016, stage 2 and was W&W until beginning clinical trial 7/2019 w/ibrutinib,obinutuzumab& venetoclax. Had bone marrow biopsy with local, no problems. Never had nor have bone pain, fever, fatigue, night sweats, weight loss,frequent infections. Take 10,000+ steps almost daily.

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