Elective hip replacement for osteoarthritis in severe CLL - any advice?

[JLHA]

I'm new here. Does anyone have experience of hip replacement surgery for osteoarthritis in severe CLL. Is it safe to have the hip replacement surgery and then treat the CLL or would it be better to delay the hip surgery and try to get the CLL into remission with treatment? (Platelets ok, haemoglobin is being managed with transfusions, large spleen). Any advice/experience would be appreciated.

[lankisterguy]

Hi JLHA,

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While I have not had a hip replacement, I am 10 days after a 4 hour back operation and struggling a bit, with all the muscles and nerves that remind me daily how unhappy they are that I agreed to the operation. I have been in CR & MRD (Complete Remission & Minimal Residual Disease for my CLL) for 3 years on Venetoclax, but remember very clearly the multiple times I progressed to needing treatment. (BTW- I am in the USA, but peek in to this group from time to time - to help my friend Hairbear- your Admin/Moderator).

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I would suggest two things to consider and discuss with your doctors, as you decide which problem to treat first:

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Fatigue- do you have mild or moderate fatigue now, and does exercise help you improve the fatigue. Some people - like me - get serious fatigue as CLL progresses, and I would hate to try physical therapy for my back while I was carrying the heavy load of CLL fatigue. Treatment always relieves my fatigue and helps my quality of life, and thanks to my CR& MRD I can push through the needed exercises to recover the disturbed muscles in my back. (Note that some people say that fatigue is more noticeable AFTER treatment with Ibrutinib than before- so you may want to ponder that choice).

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Infections: Do you have more infections in your current state? Do you recall whether that has gotten worse during your progression? Treatment for CLL does not automatically improve your immune system, but again - some like me- think they have fewer infections when in CR & MRD. The surgical incisions are some risk, as is the time spent in a hospital, to acquire new infections. So which would you prefer/expect will lower your risk?

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Len

[JLHA in reply to lankisterguy]

Len

Thanks for taking time to reply and for sharing your experience - it is really helpful. Wishing you a speedy recovery from your op - hope the muscles are feeling better soon. To answer your questions, fatigue seems not to be noticeably worse -currently able to do physiotherapy but infections are probably a bit more common. It sounds like you had your op whilst in remission. Is it more about weighing up the individual risks and benefits? Is it correct to think that hip replacement could be at least considered despite untreated severe CLL? The orthopaedic surgeon refused to operate last year but perhaps other surgeons will have different views/experience.

[MsChief]

I have bone on bone in my right hip - MD says need surgery. I’m stable on Ibrutinib and IVIG monthly infusions. Not anxious for surgery so waiting as long as possible in addition to eye issue. Talk with your oncologist - perhaps best to wait while on transfusions for spleen - you may not be cleared for surgery yet. Best wishes going forward. MC

[HAIRBEAR_UK]

Hi JLHA this does sound like you should talk first with your CLL consultant, how far off from treatment are you, ? What is clinically advisable? Which sequence could help either condition and your short and long term health., Ask your haematologist to talk to your rheumatologist orthopaedic Surgeon, Sorry to not be of much help, this is one for a consultant who knows your medical history, understands your clinical challenges and needs.

keep pushing for answers

Nick

[JLHA in reply to HAIRBEAR_UK]

Thanks Hairbear. It does seem like a case by case decision. The haematologist recommended starting treatment several months ago. Not really enough information was provided to make a decision. Having just continued with transfusion, recently the haematologist thought it was the right decision not to have treatment (!) Last year the other hip was bad and the orthopaedic surgeon said an op was needed but the CLL (less severe then) meant an operation was out of the question. Now the haematologist is recommending to go ahead with the op even though the severe CLL is not treated. Suspect the surgeons will be more cautious but have made an appointment later this week to see what they recommend. Perhaps there is something less invasive than a hip replacement that might be safer but help with pain and mobility. It seems like infection and healing could be a concern for hip surgery with untreated, severe CLL.

[2003UK]

Hi, welcome to this site. I have no medical advice for you. My only experience of invasive surgery was dental and the Haematologist, dentist and GP all worked together and I had antibiotics before, during and after. So I think what I am saying is that trying to get all your relevant health professionals talking together might be the key. We are complex, unique, very special individuals.

If you need to talk to the Leukaemia Care charity their details for support and advice:

Email: [e-mail]

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm

Take lots of care of yourself.

[JLHA in reply to 2003UK]

Champion, that's really helpful to know- so some extra precautions might be appropriate to help reduce the risk of infection. Getting all the docs speaking to each other seems pretty important. I will work on that. Really appreciate all the great experience and advice shared.