Bad knees, Baker's Cysts, and Good Times with CLL (Chronic lymphocytic leukemia), plus our newsletter
Happily my knees are slow to react to trauma. I was able to hobble through a busy day of patients, but by the end of the day I knew I was in trouble.
When I stress my knee (this is the second traumatic strain of my left knee in less than a month), there is no forgiveness, no flexibility, no resilience. There is only pain and swelling and loss of function.
In this case despite the anterior trauma, the back of my knee swelled up with a huge but benign Baker's cyst, a synovial swelling that restricts my ability to fully extend my joint and thus to walk without pain and a forward leaning posture reminiscent of the elderly osteoporotic women I met in my travels to Japan.
The good news is that it little hurts as long as I lie still with it raised, slightly flexed and packed in ice.
Which is what I did today. All day.
There is no definitive treatment for a Baker's cyst. The real treatment is to take care of the problem causing it, namely in my case, the end stage osteoarthritis of the knees. Blame street hockey or junior high football or my mother's arthritis.
My joints spaces are so narrowed medially that I have lost height due to a varus or bowlegged deformity that makes me look as if I have rounding up cattle all my life.
After a total of four surgeries, the only answer left on the (operating) table is to totally replace the knees.
I have scheduled the surgery twice now and backed off both times.
Why? Because if I vigorously exercise to stretch and strengthen my knees it partially ameliorates the pain. I am pretty good at that a home, but lousy when I am the road as I have been for 15 days in Australia.
If I use my walking sticks and acetaminophen and ice as I just did in Australia for two weeks, I can muddle through and still accomplish many miles of painful but manageable walking.
Until I fall or twist or the knees just give out on their own. And that's happening more these days.
So why have I cancelled the surgery twice now?
Due the increased bleeding risk with ibrutinib, by protocol I would have to be off my ibrutinib for one week before and three weeks after while I am on blood thinners post-op from my bilateral knee surgeries used to prevent blood clots. I have chosen to be part of the 15% or so brave or stupid patients that do both at once to get it over with and limit my time off my cancer therapy.
Here are the issues I would face:
- Being off ibrutinib for more than 8 days almost triples (13% versus 31%) my risk of relapse. I'd be off for about a month. Here is the recent ASCO abstract that lays out the facts.
- Joint replacement surgery itself may be associated with an increased risk of blood cancers. Makes sense when they are shoving titanium and glues up your hollowed out bone marrow. Reading this article will give you pause before you let an arthropod take a saw to your bones.
- I am at higher risk for peri-operative complications due my CLL including infections, bleeding and clots.
- I have never lost a patient yet to osteoarthritis, but some patients who have relapsed from ibrutinib have had a poor prognosis. Here's the article from JAMA Oncology.
It is important when you review any research that you critically assess if you belong to the group being studied. Except for the study on joint replacements (and even that is questionable), I don't belong to any of the study groups.
Still, as long as I can walk, I am staying away from the scalpel.
And odds are that I will be walking much better by tomorrow. The ice and rest has helped a great deal.
But there is another better option if time and circumstances allow. And they should.
We all know that as good as ibrutinib is, it is not a cure. Trials of dual and triple therapies are already opening in response to this unmet need, but I would only qualify today if I fail my ibrutinib.
I am pushing for trials that add in venetoclax (ABT-199) or a PD-1 inhibitor for that growing cohort of patients such as me who are doing well on ibrutinib or idelalasib, but who still have residual CLL. Don't wait for it to take off. Hit it while it's down by adding a second agent.
In my case under the cover of a second anti-CLL drug that doesn't effect bleeding, I would then replace my damaged knees and have control over my two biggest health issues, my cancer and my arthritis.
That's my plan and I am pushing hard to make it happen. These are good times for those of us with CLL and are options are getting better and better.
UPDATE: Knee still swollen with limited flexion on day three. Walking is not happening despite a night of elevation and ice. 80% better by day 7.
On a less personal note, the CLL Society was very busy in Australia with iwCLL 2015 being the only CLL group reporting from there, so stay tuned for some updates. Yours truly spoke in front of several hundred doctors on a panel with Dr. Michael Keating and other giants in CLL. Very humbling and very honored to have shared the patient's perspective in Sydney.
I'll be in Brooklyn Oct. 3-4 for LRF's 20th Annual North American Educational Forum on Lymphoma and would love to say hello. Drop me an email and we can try to connect.
The CLL Society's inaugural newsletter is coming out later this month. It promises to be amazing with some wonderful articles written by fellow patients and caregivers and with some great surprises. If you haven't already, please sign up for it here. We won't share your info with anyone and you will be sure to be aware of all the upcoming posting from iwCLL and ASH and much much more. The newsletter will be quite different from this blog or our CLL Society website, so please sign up here and don't miss it.
And if you are in the Seattle area, consider this meeting with John Pagel and a CLL patient and caregiver: