Bilateral hip pain post v&o

[Shangonmom]

I completed V&O 3/24 and am feeling much better except for severe hip pain. The discomfort is almost continuous with aching just resting/ sitting but definitely increasing with movement. Has anyone else experienced this after treatment? It feels arthritic and I do have "low grade myelodysplastic syndrome" per oncologist, so I'm wondering if I should pursue this new symptom?

[lankisterguy Volunteer]

Hi Shangonmom,

Here is a link to the 228 times other postings mentioned hip pain: healthunlocked.com/cllsuppo...

Many of us ask about joint and bone issues, and the docs say "Not related to CLL" but my own personal fact free theory is that CLL accellerates the natural aging of our bodies, especially arthritic bone loss in joints. My bone density is high, but my joints are disolving.

I've lost 3 inches height and had 3 back operations since my diagnosis in 2008, and while there is a family history of back problems, my bone deterioration seems to happen faster.

Len

[Shangonmom in reply to lankisterguy]

Thank you for the info!

[CoachVera55 in reply to lankisterguy]

I so agree & so does much of the literature

[CCgroup]

Hello Shangomom

Your description sounds very much like what I have. I am 83 years old, male.

The only CLL drug I have taken is ibrutinib, so it may not be the V & O. I've been taking ibrutinib for 5 years so likely am going to need to change soon.

The painful hip is the left one. Trying to get comfortable when going to bed at night is difficult. It hurts when walking or swimming. I have had X rays, a CAT scan and an MRI which show no damage to the hip. The pain points on my hip are very specific and when pressed are extremely painful.

The last specialist I went to says the only solution is a hip replacement, which I'm not keen to do.

If you find a solutions I would appreciate hearing about it.

Thanks for the post. Good luck with finding a cure,

Dan

[Shangonmom in reply to CCgroup]

Thank you for your reply. Prior to treatment I had right hip pain only, but now both hips are so painful. I too have point tenderness and have difficulty sleeping on either side! MRI prior to treatment showed mild arthritis in the right hip. Do you have difficulty lifting legs while walking? This is a new symptom for me. I also swim (i try to get to the pool 3 times a week and swim approx 2500m) and I find swimming can also exacerbate the pain... I'm just frustrated but again I want to thank you for your response.

[CCgroup in reply to Shangonmom]

You are in worse shape than me, but I'm headed that way. I have a 12 meter pool and try to swim 50 lengths a day. Once I get going the hip is tolerable. I live in Costa Rica so I can use the pool all year.

Lifting my legs in normal walking is not a problem for short distances, but trying higher lifts hurts the hip. I don't walk more than necessary.

I've tried 3 doctors, and the only advice I received is "get a hip replacement." On each doctor appointment I got an injection in the hip which stopped the pain for a day each time.

Good luck

Dan

[larrymarion]

There is an indirect connection between our CLL and joint pain, especially if you've been treated with chemo and/or BTKs. The combination of the disease and the treatments wreck havoc on our immune systems. As our immune systems deteriorate, we become more vulnerable to inflammation. And increased inflammation in our joints is especially common, which leads to pain.

My hemoc at Dana Farber first explained this to me after i had a series of scans to discover why i had so much hip pain. The scans were negative and the pain persisted in my hips, ankles, elbows, wrist, etc. until two things happened:

1) my immune system damage was so great, and i had so many colds and other issues, that i began gamma globulin infusions. Joint pain cut in half within days

2) a chat with a board certified rheumatologist resulted in an Rx for medical marijuana. The combination of CBD and THC eliminated the other half of my joint pain in a few hours.

If you've got a lot of other immune system issues, like frequent colds, infections, etc., maybe ask your hemoc about your IgG, IgA, and IgM levels. They are indicators for the status of some of the immune system components, and may offer a clue whether your hip pain is related to your diminished immune system and inflammation.

BTW, i'm part of a CLL support group and the issue of hip/joint pain is a frequent complaint, especially for folks who have been treated with ibrutinib.

Good luck.

[Bajabarb in reply to larrymarion]

Could you please tell me what exactly your rheumatologist prescribed for you? Since Colorado has approved the sale of marijuana without a prescription, I don’t know if it is necessary here to have one but I would appreciate knowing what combination of CBD and THC is working for you. If there is a brand name for your prescription, that would be helpful too. Thanks so much!

[larrymarion in reply to Bajabarb]

Rx is 20 mg CBD/10 mg THC per gummy. I started at 1/4 piece of gummy per day. Brand varies by store. The retailer here in FL is called muv.

[Bajabarb in reply to larrymarion]

Thanks so much!

[Shangonmom in reply to larrymarion]

I really appreciate hearing that I'm not making this up! I have been told on many occasions that I have increased inflammation(my GI Dr has performed two colonoscopies this past year and said i have severe inflammation). I will definitely talk to my hemonc about IgG IgA and IgM. I haven't had any significant illness, thank goodness. My ANC last week was 1.2 which I don't know why it hasn't improved since completing treatment. I'm intrigued by the gamma globulin infusions and will ask my MD about that also.

Is the CLL group you belong to a local group or online ?

Thank you

Shannon

[larrymarion in reply to Shangonmom]

Cll society's Boston and Tampa groups

[larrymarion in reply to larrymarion]

The cll society support groups all meet via zoom since COVID.

[CoachVera55 in reply to larrymarion]

You are the first person who made a good argument for IVIG but I will try your second cure first with the CBD & THC especially since I only get sick 1-2 per year… thanks 🙏🏾

[CCgroup in reply to larrymarion]

Hi Larrymarion

My IgG, A was 340 but G & M a bit low at G 515 and M at 21. This was Jan 30. Would you suggest something to boost G & M?

I've been walking with a cane, which helps. It is much more painful without it.

I don't have any other immune problems such as you point out. I'll be coming off ibrutinib shortly as I've been on for 5 1/2 years and that seem to be when it becomes less effective. Do you have any other suggestion to replace my daily two ibrutinib capsules? My oncologist is not certain, but I've kept all reports on the effects of various CLL drugs for some years, so that is all I have to go on.

Many thanks for the help.

All the best

Dan

[Mprm]

This is very interesting to me because about 3 months into starting Ibrutinib I developed pain in my hips, which turned out to be bursitis. Two months of icing finally relieved it and it never returned, nor had I ever had it prior or any hip pain. I suspected the drug, but the doctors didn’t seem to have enough knowledge to link the pain with the drug.

[CoachVera55]

Hello & congrats on completing your treatment, let me start there🎉🎉🎉

Yes I have many orthopedic issues, history of DJD, Obesity & multiple car & work injuries. After 13 months of Zanubrutinib, it neccesitated Protonix & Steroids which wrecked havoc on my many Orthopedic issues but mainly my s/p Left Hip Fracture from 2011, its now bone on bone!

I have to follow up with my Orthopedic since my Bilateral Total Knee Replacement, Bilateral Torn Rotator Cuffs with only a Right Arthroscopy, Cervical Lumbar Radiculopathy, Sciatica & now a Collapsed Right Arch. Things have definitely improved off treatment now 9 months of this what I hope is a forever ‘Treatment Break’. I did a 90 Day Cardio Rehab program that helped as well. But I will see Ortho at least 2X per year & Rehab at my Homegym indefinitely.

I simplify stuff for me to fully understand & if the bone marrow produces CLL & treatment has to go in there to fix it, it makes sense that 2 things in an area that neither should be would cause pain 🤷🏽‍♀️

[wakewatcher]

thank you for posting this. I have completed 15 cycles of Ibrutinib and V and am wanting to enjoy life again but have developed hip pain which is a surprise as I have had both hips replaced. I am busy trying to strengthen all the supporting muscles which seems to be helping but I had wondered about a connection to the treatment and all the replies you have prompted are very helpful