Hi all, I was diagnosed with CLL about 4 1/2 years ago, have been on W&W since then. Just after Christmas, I had an ache in my right side below my ribs that did not go away for several day. Went to the ER, and was told my liver appeared to be enlarged and/or have fatty liver. I am diabetic, and this is common with diabetes, so cleaned up my diet, and it seemed to go away. They did CT scans and saw a fair number of enlarged lymph nodes, and my white count was elevated (45,000, which it has been in that neighborhood for some time.
I saw my Hematologist recently, and she expressed concern that I am showing up with anemia for the first time. White count remains at ~45,000. She thinks the liver issue is not fatty liver at all, but is enlarged because my body is depositing white cells there. She also felt pretty enlarged nodes under my chin, smaller nodes in axillary and scapular regions, as well as numerous enlarged nodes in the retroperitoneal space (shown on CT). She thinks I am probably going to need to begin treatment soon. She recommended a 2nd opinion, and I am scheduled at Moffit in Tampa two weeks from now. I'm a little freaked out at the prospect of starting treatment, as I was not expecting this at all.
I have begun to experience a lot of joint pain in my wrists, shoulders, and ankles. Also significant gum sensitivity, despite my dental hygiene being very good. The sensitivity is such that I can now only use the water pik on the 'child' setting. I didn't think to mention either of these to my hematologist, but am reading that both of these can be CLL-related.
Has anyone ever experienced the rapid onset of joint pain or gum sensitivity as a symptom of CLL progression? Again, I have not begun treatment. Thanks all.
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Mango1957
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Mango1957 - I have not had those issues either before or during treatment but CLL affects people differently. It sounds like you are getting good medical advice.
You might mention the new issues to your medical team. They may or may not be due to your CLL but they could well be. If they go away during treatment, it’s likely it was due to your CLL.
Like you, I'm very persnickety about my dental hygiene. Before I began venetoclax therapy last September, I was having a lot of gum pain. I can't confirm it was directly related to the CLL but, I'm pretty sure there was a connection. The pain has subsided notably now that I'm on therapy.
With regards to joint pain, I have had osteoarthritis for about 18 years. It is everywhere - shoulders, wrists, lower back, hips, etc. The intensity of the joint pain waxes and wanes depending on my level of activity. I can't recall if the joint pain intensified over time because of my CLL progression.
After I went on venetoclax, joint AND muscle pain intensified. I finally brought this to the hematologist's attention after trying to 'gut it out' for a month. I'm now taking 100 mg. of celecoxib (Celebrex). The NSAID combined with PT have rendered my joint and muscle pain tolerable.
As mentioned in an earlier post, CLL affects everyone differently. Since you are not taking any medication yet, I suggest you speak with your doctor about options to combat the joint pain.
Thanks, Man. I appreciate the insight. The gum pain has been a trial! Concerning the joint pain, it is possible that I've developed arthritis; I'm just surprised at the rapid onset of both the gum pain and the joint pain. Ageing aint for sissies!
No it's not and the CLL plays havoc with your body in ways we don't completely understand. The irony here - I've been told many times that, in today's world, CLL is a 'good' cancer. There are lots of very effective, minimally toxic treatments that can put it into remission.
Good luck with your journey as you and your hematologist(s) navigate this disease together.
I haven't been offered a treatment as yet. My Hematologist is a big endorser of second opinions, and I have another week until I see the folks at Moffit for that. We will talk treatment options after that appointment.
I’m still in W&W. As others comment this disease is different for everyone, your comment “Aging is not for sissies” is spot on! I’m in Canada, in watch & wait I’m not considered even moderately immunocompromised, but my immune system is dis-regulated in some bizarre ways. Have you considered inflammation as a cause for the gum & joint pain?
I ask, because the pain, stiffness & swelling in my hand that my hematologist dismissed as age related osteoarthritis, was diagnosed and treated with steroid injection by an orthopaedic surgeon as trigger finger. X-rays showed minimal arthritis. I haven’t yet spoken to my own doctor about the wandering arthritis that seems to have developed. Wandering because it comes & goes and changes joints to the extent I limp & the pain is excruciating when it flares up but can do squats the rest of the time! At the moment, antihistamines & naproxen allow it to settle down but my hip is getting to the point that it needs to be addressed before it goes the way my hand did. The sensitive gums I had put down to not rinsing enough after using my steroid inhaler, but maybe it is connected.
Might be worth considering in your case, with the sudden appearance.
Hi PD, your comment about the wandering arthritis caught my attention, as it sounds similar to my experience. You might want to google Palindromic Rheumatism. I was eventually diagnosed with this back in 2016, after a few years of mysterious, often excruciating, flare ups in random joints around my body. These come on suddenly, without notice and then usually fade away within 24 hours. Pain level varies from moderate to severe. I get these episodes roughly every two to three weeks, but sometimes have gone six weeks without one.
I was offered DMARDS by the rheumatologist, but decided against these due to the reported side effects. I manage the symptoms with diclofenac and paracetamol. I hope this helps you! HappyCat 🙂
Thank you HappyCat. I had wondered about Palindromic Rheumatism having read about it on a post here. I know I’ve been putting it off, but definitely time to have a conversation with my doctor!
Good... I would recommend that you take a good quality source of information about PR to your doctor's appointment, e.g. from the arthritis.org website. It is a rare form of arthritis and certainly my GP was unaware of it and grateful for the information to make the referral to rheumatology. I also kept a diary of the flareups and which joints they affected, which can be very helpful for diagnosis too.
Good thought. I do have a wonky immune system as well (Hashimoto's thyroiditis). It probably does have something to do with the sore joints. Appreciate your insight!
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