Saturday, September 19, 2015

Bad knees, Baker's Cysts, and Good Times with CLL (Chronic lymphocytic leukemia), plus our newsletter

I tripped walking into my medical office yesterday, scraping the front on my left knee just below the patella. I was tired, jet lagged having arrived home from Hobart, Australia less then 2 days earlier, was carrying a lot of stuff and was distracted talking on the phone with someone with CLL facing some tough choices. But I don't need any excuses. I fell because I have a bad knee. Actually two bad knees. Two very bad knees getting worse.

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:

  1. 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. 
  2. 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. 
  3. I am at higher risk for peri-operative complications due my CLL including infections, bleeding and clots.
  4. 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
Now if you dig into the studies that I am referencing, you learn quickly that the patients who went off ibrutinib for more that 8 days were generally much sicker and quite different than me and that whole study is being questioned, the total joint patients with subsequent blood cancer are still rare and a broad mix of surgeries, and the relapses post ibrutinib were clearly a different group than me.

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.

Big news:

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:


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9 Comments:

Blogger Beverley Paine said...

Sure hope your knee settles down soon and the pain eases. Thank you for sharing the information about the choices you face and the ins and outs of decision making process - it really helps people like me to understand the nature of CLL better. Thank you for all your support!

September 20, 2015 at 12:37 AM  
Anonymous Anonymous said...

This was very helpful. My 80 yo husband has been doing well w/Imbruvica the past year. He is also having trouble w/a knee (old motorcycle spill). What I heard from the onc was surgery not a problem if platelets resolve. Sounds like there is a lot more to it than that.

September 20, 2015 at 10:07 AM  
Blogger Judy Cleri said...

Sorry to hear all this Dr. K.........I don't have the CLL issues so my knee replacement was a life saver for me. raying you can get on new trial.

September 20, 2015 at 11:05 AM  
Blogger Eileen B. said...

Dear Dr K, Thank you so much for all the work you undertake on behalf of me and all CLL patients. Please put yourself first for a while and rest well. I will pray for your healing. Someday I will tell you about my CLL story which is not a very happy one, but not now, I don't want you to be concerned for anyone but yourself until you are well again. Many many thanks. Eileen Balfe.

September 21, 2015 at 4:26 AM  
Blogger Tentative Tyro said...

I was a long-time runner (from about 1960 to 1996), had a half torn meniscus removal ca 1976; finally I had a partial knee replacement here in Seattle ca 2009. CLL since 1998, treatment began in 2007. Although the replacement went well and, as far as I know, my CLL was a non-issue, the knee has never been as functional as it was prior to the replacement; my exercise efforts suffered greatly. If I could rewind the clock and know what the result would be, I would not have the replacement but would find work arounds and preserve the functioning of the knee. I know full well that there are an untold number of success stories. Mine would not be among them.

For the record, I am on a trial with ACP-196 and doing well, today.

September 21, 2015 at 8:12 AM  
Anonymous Anonymous said...

All surgery has risk. Thanks for pointing out the risks of joint replacement. I didn't know how pesky those nano particles can be.

September 24, 2015 at 3:18 PM  
Anonymous K said...

In looking at the ASCO abstract, information is not provided as to the cause of treatment interruption. An interruption due to a drug complication or cll event may have a very different impact on PFS than a break in care for surgery. Is that data available?

October 9, 2015 at 11:06 AM  
Blogger Jean Hill said...

My husband was diagnosed in January 2014 with CLL Stage II. He was in W&W for five months when I noticed a remarkable increase in the size of his supraclavicular lymph nodes on each side. I bumped up his oncologist appointment. She took one look and scheduled him for six cycles of BR Therapy. He has been in remission since November of 2014 with numbers increasing slightly. However, the same nodes have increased in size. His lymph nodes were the issue in the past more so than his blood count. He has a knee that is giving him a tremendous amount of pain and has not suffered injury in the past nor has he been a runner or athlete that would have used repetitive motion to cause wear and tear on a joint. There is marked swelling on the inside of the knee that could almost be categorized as a bump or lump. There have been times when the entire leg from the knee, down to and including the foot are all swollen. I am wondering if any of this could be associated to the CLL or is it just an arthritic condition? There are times he can barely walk and heat seems to help the pain more than ice. Ice is painful when applied. We go to his GP tomorrow and he is due for CLL bloodwork on the 14th.

January 11, 2016 at 10:36 AM  
Blogger max den said...

Amazing post

May 1, 2016 at 12:54 PM  

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