CLL and Osteomyelitis : Has anyone with CLL and... - CLL Support

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CLL and Osteomyelitis

GL64 profile image

Has anyone with CLL and being treated had Osteomyelitis?

My wife has CLL/SLL and has been on Calquence for 5 months and has suffered with non trauma high ankle sprain for 7 weeks and now thru CT-MRI-bone scan and now ankle bone biopsy been diagnosed for Osteomyelitis of the ankle bone. Treatment iv antibiotics for 6 weeks.

No clue how infections got to ankle bone. Any help or info appreciated

10 Replies

HI there, this NHS link is useful about osteomyelitis and states that trauma and poor immunity can both predispose to having it nhs.uk/conditions/osteomyel...

Are they going to be able to treat this at home or will she be admitted? It is sometimes possible to give IV antibiotics in the community depending on the local services.

I'm glad you were able to get a scan and a clear diagnosis. One good thing is that I hear it often takes months before a diagnosis is made and it sounds like if this is related to the sprain you have a really early answer. Someone has been proactive which is always a good thing.

I wish you all the best, it is clearly a worrisome time for all of us without something else to deal with. Three are others on here who have had osteomyelitis before I remember someone talking about it in the past tense i.e. that they had been able to deal with it. Sadly for some reason the search function doesn't seem to be finding any of these posts I half remember reading, sorry.

GL64 profile image
GL64 in reply to AdrianUK

Adrian

Thanks for link and encouraging words. Unfortunately the sprain of 7 weeks was a misdiagnosed diagnosis. 7 weeks of wrapping-in boot-elevating and pain control pills finally got to 2nd opinion and CT scan. But I understand due mri it appeared like high ankle sprain but there was no injury-twisting-or trauma. Treated her as “normal “ patient...but with CLL there is no normal

Praying Osteomyelitis is localized and not spread

Coming home and do home IV treatment of antibiotics.

Still unsettled with why and unknown of it occurring again. Stopped calquence due to possible healing delay properties. So hopefully starting soon after visit to our oncologist at Moffitt

Wish you the best during this time of isolation

cllady01 profile image
cllady01Volunteer in reply to GL64

GL, since we are susceptible to infections of all kinds, osteomyelitis

can come through the blood stream--Mayo Clinic link:

Hoping for pain relief and infection gone soon.

mayoclinic.org/diseases-con...

cllady01 profile image
cllady01Volunteer in reply to GL64

GL, here is the Rare Disease site:

"In order of frequency, osteomyelitis can be the result of a trauma, surgery, or joint insertion or any type of prosthetic material"

"The overall observed trend in osteomyelitis is that it has been increasing over the last few decades. This could be because we have gotten better at diagnosing osteomyelitis, but also because the prevalence of certain risk factors is increasing, namely diabetes."

I don't mean to scare, but if you can read some of this and get in touch with your wife's Dr. to ask any questions you might see pertinent to her situation to help you to be her caretaker.

rarediseases.org/rare-disea...

GL64 profile image
GL64 in reply to cllady01

WOW..NORD was great info...thanks so much!!!

Wife is not diabetic so that is a plus in treating and healing.

I have more info and questions for the doc...thanks again for helping!!!

cllady01 profile image
cllady01Volunteer in reply to GL64

GL, I was wondering about the boot she had on, would it be considered prosthetic?

Hoping you can get answers to your questions and all goes well with the treatment of this and then back to CLL.

Also, I notice that a year ago she was seeing a CLL specialist as second opinion--I hope that Specialist is dealing with this==there needs to be more looking into the cause, in light of the variety of possibilities and the more minds working on it the better.

GL64 profile image
GL64 in reply to cllady01

Specialist is now primary oncologist treating with Calquence

Hoping the new team: orthopedic doctor-infectious disease doc-and oncologist can work and share to help preventive future infection of this type by determining cause...difficult to get them talking🤪😝

Boot is able to protect and support

cllady01 profile image
cllady01Volunteer in reply to GL64

Good to know that there is an able team working on the situation. Thank you for answering . I would imagine until they know more, they do not want to say much. Goodness, tell you wife, we are all pulling for her and you.

If you get information from Drs., it would be helpful to us for you to share it if possible.

GL64 profile image
GL64 in reply to cllady01

👍

Had it when I was 7, emergency trip to hospital for bone marrow drain in femur. Xmas eve unfortunately and didn't come to until boxing day, spent next 6 weeks in hospital and 9 months in a leg brace.

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