I’ve been reading the posts in another series and wanted to break this out.
I’ve had a lot of muscle joint and bone pain including my back pelvis and legs as well as shoulders.
Well reading his post today I thought came to mind that CLL is a disease of the bone marrow and there is a lot of bone marrow in the iliac crest or hip area as well as in the lower legs/tibia and vertebral bodies of the lumbar spine.
It kind of makes sense that if there is cancer in the bone marrow in these areas, there could be pain
Further, it makes sense that killing the cancer it in the bone marrow could also be a painful process.
I had a great time snowshoeing in the full moon last night, but towards the end, all of those areas started hurting including my feet so that it was hard to finish the last 30 of 90 minutes.
I did get a bone density test and showed normal.
I’ve had other test for bone and joint pain and they were all clear.
so logically that leaves the CLL and the treatment to kill it, mind being a Venetaclax at the time.
Anyone else have any thoughts?
Thanks and God bless
Skipro.
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skipro
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Just two weeks ago, I complained to my doctor about severe upper thigh and lower back pain. I was subsequent diagnosed with having a possible pelvic muscle issue and was given 5 days worth of prednisone ( 20 mg tablet/day). I could hardly walk. After a few hours on prednisone, all pain was gone and has not returned. I also have pelvic physical therapy scheduled but I currently feel totally fine. You make a good point about a possible link with our CLL.
I have experienced incredible bone, muscle and joint pain since diagnosis. My consultant says it is the cancer in the bone marrow causing it. It can also cause your bones to get brittle - hence my having 3 very painful cracked ribs earlier this year. I am now on monthly infusions to strengthen my bones.
Jooby, is it the CLL or the V that causes brittle bones? I’ve had osteoporosis since 2017. Bone pain much worse since about 6 months after I started V, but I’ve SLL. I’ve been hoping it’s down to V, but it had occurred to me that because mine is lymphoma, maybe it’s not the V?
I was so miserable in so many ways prior to diagnosis that I don't remember if bone and joint pain were one of my symptoms, but it was very definitely a side effect once I started treatment with Obinituzimab and Ibrutinib, then Acalabrutinib. When I complained to my doctor, he said that meant the treatment was working. Killing cancer cells in your bone marrow can be very painful and I endured it for 5 long years. Tylenol, caffeine and CBD seemed to help. The good news is that I'm now off-treatment (2 years this month!) and doing great. No pain at all, never felt better. Hope it stays that way.
Hi. I did not have any pain before treatment. I began to have pain the first month I started V&O. My pain has been in my legs and rib cage. My doctor said it was bone pain related to the medications and prescribed a pain medication that I take sparingly. Luckily the pain is not constant and varies in intensity so I can live with it. I walk a lot on the job and for pleasure and also hike a lot.
I’ve been on Calquence approaching 2 years now. I’ve experienced joint pain mostly with short bouts of bone pain. These episodes have correlated to when I wasn’t drinking enough water and/or not getting in enough regular or daily movements. It has also lessened over time as my CLL has improved with tx. So drink water and at least walk and stretch has worked for me.
This makes so much sense! I’ve read other replies to yours as well and it’s like a puzzle that’s finally complete. My body pains, back, hips, rib cage….it also explains why I hurt more now at the end of V and O than in the beginning. The V is doing its job on bone marrow after working on the blood. I’m so grateful for all the help I’ve had on this site! I’ve seen so many oncologists during the past year, not my doing, they just book me with whomever is available….they’re all ok but seem to lack the interest in explaining the why’s all these side effects occur when they do. I saw my family doc Friday and already have X-ray results regarding my back pain….as I expected, it’s a degenerative disc which I’ve know about for a long time. That’s actually good news, just wear and tear….but skipro, you’ve clearly shown the why! Thanks so much! And so impressed you snowshoe and I assume ski….I ski too and play pickleball, cheers!
I tried it a few times with my wife and when it’s nine to nothing and I make a point, my first point, she says well I guess I better start playing for real now ha ha.
Thank you for your explanation. I believe most of us know our own bodies. I respect my CLL specialist. He is also a researcher and only see’s patients one day a week. I can email questions through the portal and usually his nurse responds back. When I sent an email questioning the muscle and joint pain (I am on Acalabrutinib) the response back was…..maybe it’s arthritis. Again, I know my body. As we age we all end up with a little arthritis but….it happened once I started Acalabrutinib. Hmmm. Another email I sent was in regard to headaches. Her response….maybe it’s from your morning coffee (which they advised me to have in the beginning to manage headaches). Again….I know my body. I did not have headaches before Acalabrutinib. Hmmm. My primary said…..well your aging, perhaps it’s the coffee. Ok. Am I insane? But…..I know my body. It has been my local hematologist that has validated me. He simple said…..you did not have headaches and muscle pain before taking the medication, through a process of elimination, it’s probably the medication. Thank you for validating me!!!!
My pain toolbox consists of magnesium, a microwavable long heating pad, a Tens unit (which I am using at the moment), massage, and I recently started acupuncture through an acupuncture school. $15 a session with 2nd year students. My final tool is acceptance, be kind to myself, and except I may have good days and bad days. I focus on the miracle of these drugs to help me to continue to live and continue to thrive!👩🦳
How does one find one that know what they’re doing ?
just as a point I had an MRI the other day and they asked if I’d ever had acupuncture so I asked why and the response was that because sometimes the acupuncture needles break off under the skin, so it kind of freaked me out
I subscribe to the “Harvard Health Letter” from Harvard Medical School. The current newsletter mentions pill free treatments including acupuncture and massage. For massage: “Therapeutic massage helps muscles, tendons, and joints; it relieves stress and anxiety; and it might interrupt pain messages to and from the brain. “
There are many types of massage. Years ago I had deep tissue massage that helped with some sciatic issues. Massage may be a better choice for you. Hope this helps! 🙏
I am focused on acupuncture right now. I also have a wonderful chiropractor who has gone above and beyond to help with pain management! In addition I am using a tens unit which helps with some muscle pain. The one I use is a Cureve. They have a website.
I have roving leg, knee and ankle pain, but I also have arthritis. Different place every week. When I had my BMB, my doctor told me that whereas the skin, muscle and bone have nerves, the bone marrow does not. So hard to say where your pain is coming from. Blessings.
I am an old orthopedic surgeon and I know patients with broken bones have extremely severe pain. In fact, Seinfeld , the comedian said the only way you could say your pain was 10 of 10 would be if you had a broken femur.
I’ve seen a lot of horrible injuries in the emergency room over the years over the years and I have to do say fractured bones can be among the most painful, especially the femur
I guess it is all relative. I had spiral wound fractures from ice skating. Has the bone did not break the skin, the doctors spent two days consulting on whether to set with screws and plates or try cast. The second day in hospital bed with leg strapped to a board the guy in the same room as me was a racing car driver and shared my room. He had had just about every bone in his body broke at some time and was in hospital for rebreak of foot bone. He looked over at me and said why are you not getting any pain meds, I said I will wait until it gets worse. I had a lot of pain, but not from the break but rather after they cast my leg at about 30 deg. angle. The pain in my knee was the worse. I finally convinced them to cut a hole in the side of the knee area of plaster cast so I could pack with ice. After two weeks I could feel the bone ends hitting each other, so they did another x-ray. They had taken an x-ray after casting in hospital before first release while I was in hospital bed, it showed bone was aligned but no x-ray from side which would have shown that bones were not even touching. Was put in another hospital and re-casted straight legged with tightly wound fiberglass. The straight cast greatly reduced the pain in my knee from college flag football injury. The new casting hurt and was way worse than original break by far. They gave me three pain shots every 15 minutes and once I was awake, I was good to go. End of long story, I was in full leg cast for 8 months, took a long time to heal. To this day do not have bone pain in leg except setting and crossing my legs just right.
I appreciate your offer, but leg break was in 1986, doubt X-rays still exist. However, I will dig through my archives. I do remember having leg re-X-rayed because spiral wound breaks were about 6-8 inches long and extended to ankle bones with bone above ankle joint splintering off at about 30 degrees from axis of fibula and X-ray was to see if fibula had actually healed. Due to position of fibula, the tibia covered the area need to determine if fibula mended and indeterminate. So, my ice-skating and skiing days were over. Thanks.
Skipro - Have experienced lower leg shin area big pain, via skiing, ever since CLL dx (3-1/2 yrs ago). Just a coincidence? I’m on W&W so it’s not drug induced. Pain causes me to stop skiing after a couple hours.
I can’t explain the why? I’ve skied the past 50 years n never experienced that type of shin bone pain as I have the last 3 ski seasons.
Went to ER 2 years ago as the shin flared up w/excruciating pain through the ski day (unusual). ER did a bunch of tests but didn’t find anything wrong. Like a “strange noise” in a car engine n then “silence” when the mechanic analyzes it.
So is it a CLL thing?.. Or maybe just getting older pain? Idk
Hope you can get relief from your pain. Let us know if you find a remedy.
hi I’m an orthopedic surgeon. People can get shin splints and or phone, bruises or stress fractures in the bone that don’t show up on x-rays. If the pain persists an MRI is required to clear the leg before I allow patients to return to physical activities want to look into an MRI
Also I do think that CLL hast to affect the bones because it’s in the bone marrow and almost every bone has bone marrow.
Somedays the pain in my pelvis and legs and feet is so bad I can barely walk or has other days. It’s OK I kind of think it’s a venclexta because I’ve never had it before.
I've also experienced muscle and joint pain, the most troublesome in my legs, since starting Venclexta. It seems like a common side effect, and severity seems to be mild to unmanageable. Fortunately mine is manageable with pain relievers, pain patches and warm baths. Best wishes for a good result, that's why I'm hanging in there.
I’m not sure this will be helpful but just in case. I’ve had an osteoporosis diagnosis for nearly 10 years (I’m 5’”1 and my mom and grandmother did as well and both were small and broke hips in latter years) and a CLL diagnosis for almost as long. I didn’t experience pain until treatment began. Wishing you the best.
great thought about the osteoporosis. Paragraph I did have a bone density scan a week ago and there was no osteoporosis although it is common in individuals with CLL.
I read this and it may relate to what you are talking about. When the bone marrow expands it can cause pain. This article references Acute leukemia. Could it also relate to CLL?
Acute Med Surg. 2014 Oct; 1(4): 249.
Published online 2014 May 19. doi: 10.1002/ams2.46
PMCID: PMC5997232
PMID: 29930859
Acute leukemia presenting as bone pain with normal white blood cell count
Author information Copyright and License information PMC Disclaimer
"Bone pain can occur in leukemia patients when the bone marrow expands from the accumulation of abnormal white blood cells and may manifest as a sharp pain or a dull pain, depending on the location. The long bones of the legs and arms are the most common locations to experience this pain."
"Some people whose CLL has changed (transformed) into a high grade disease have bone pain and night sweats. Bone pain happens because there are too many leukaemia cells in the bone marrow, causing pressure on nerves and causing pain."
I’m remembering in my early training is an orthopedic surgeon. That leukemia can present as bone pain and that we should always think about that when a child comes in.
Only makes sense that it could happen with adults with CLL as well.
In my case, the Acalabrutinib causes the muscle and joint pain I have. The question is ……are you having bone pain or muscle and joint pain or possibly both. I sent you a response with a suggestion of massage in my last reply. Heat also helps muscle and joint pain. It relaxes the muscles. 👩🦳
Claritin seemed to help with bone/rib pain-- I don't know why. This was for a few months before starting any treatment. I am ok now, but notice bone & joint aches mostly when I am really tired and sometimes related to IgG doses.
I know when my CLL is active, I have bone pain. It also stands to reason that abnormal excessive activity in the marrow, whether from disease, drugs infiltrating the marrow to destroy the CLL, or marrow attempting to/or rebuilding itself faster than "usual" could cause certain patients to feel pain. Kids can feel pain during growths spurts; not all do, but it's known to happen. Obviously that's adding to the bone as well as marrow, just, it seems things affecting bone/marrow may be noticed.
I had this kind of pain leading up to SLL diagnosis, at which point a bone marrow biopsy found 30-40% marrow involvement. The worst pain was in my knees and hips; at one point the hip pain was so bad I couldn't stand. I started treatment with acalabrutinib shortly after diagnosis but the joint paint hasn't gone away - in fact, it's gotten worse and I now also experience it in my hands, feet and ankles, too. (My feet were especially bad when I first started treatment and sometimes I couldn't walk, but thankfully that's improved).
I recently asked about a follow-up bone marrow biopsy (3 years into BTK treatment) but my doctor declined saying my bloods are good and lymph nodes reduced so she sees no justification for marrow biopsy. Though I hated the procedure, I would not hestitate to go through it again to gain a better understanding of the cause of my joint pain.
It makes sense to me that anything from CLL cells to the treatments designed to kill it could all cause bone and joint pain, and I know joint pain is a major side effect with BTK inhibitors. I'm not lying when I say I feel the battle between the CLL cells and the medication in my lymph nodes and joints every day.
I'm starting to believe the pain is NOT the specific medication, rather, that the meds are battling and killing the cancer cells in the marrow and blood etc.
I'm in month 4 of V&O and I have just received a diagnosis of calcific tendinopathy. At its peak, the pain was an 8, although transient. Previously during treatment I have experienced significant bone pain.
I didn't think too much of it, till I found this study: Calcific tendinopathy: an unexpected side effect of tyrosine kinase inhibitor?
I'm not on a "nib" right now, but these newer drugs have more side effects than are acknowledged. Sure, we're all getting older, but the drugs provide some serious speed bumps on the road of aging.
a cortico-steroid injection into what is call the sub-acromial space ould help the calcific tendonitis resolve more quickly and provide you with pain relief.
Earlier (Neil, myself, and others ) were having an interesting discussion on complimentary therapies, integrative medicine, and cancer treatment. Of course we were all in agreement not to prioritize alternative treatments over science based treatments. The info I sent is for you to consider trying something to help manage the muscle and joint pain caused by the medication! Hope it helps!
CLL Society is looking at studying the benefit of integrative medicine as an adjunct to cancer treatment.
Interesting, I've heard both ways on dose reduction. Fewer side effects but concerns about getting rid of the CLL.
I talked to my doc about Quality of Life v. Quantity and how the meds, doseages etc. can affect both aspects.
Still the jury is out. I am at the 1 year point and getting a Marrow Biopsy. Thought I'd stop now if I reached uMRD 6, but after months of waiting for this day of possible celebration, I'm told that since I had NO pre-treatment tissue on hand, I can't get the uMRD6 test dones.
So back to educated guesses as opposed to informed decisions.
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