Sunday, December 04, 2011

A real pain in the neck

And I mean that literally. Yes, that's me, laying in the ER, just after a drain was put into my neck.

It all began with a lymph node under my left jaw that swelled up, and kept swelling and swelling, and swelling and swelling, until I could barely open my mouth. I've heard of CLL patients getting massive nodes before, but this was no ordinary CLL event. 

It turns out that a bit of bacteria, something in the strep family, got caught up in the node and caused an abscess. The CT scan at the ER pegged the node at 5.0 x 4.1 x 3.3 cm. But the way it was stretched over my neck, it felt much larger than that, and measured by touch more like five inches than 5 cm. It was crushing my neck muscles and salivary glands. Had it gone on for much longer it would have dislocated my jaw.

According to the ENT doc, such abscesses are not uncommon among the general population. (Who knew?) At first there was some concern that the abscess could have originated from a necrotic place within the lymph node, but cultures of the chocolate-brown pus showed a garden-variety strep. (The culture report states. "Mixed flora (multiple species present). Predominately Beta Hemolytic Streptococci, Group F.") Fortunately, blood cultures showed no bacteria in the blood, which would have meant sepsis, a much more serious condition and one that would have kept me in the hospital beyond the three days that I was there.
Mmm. Chocolatey brown pus in syringe at left.

I was admitted so that I could receive IV antibiotics, clindamycin, which I am now taking orally at home. The drain is still in my neck and will be there for at least another week.

I haven't been a patient in a hospital since 1964, so the whole routine took some getting used to. Who knew you could order meals at whim off a room service menu these days? Or that the nurse would strap air bags to your legs that puff up and down to prevent deep vein thrombosis? I caught up on my television viewing, even if I didn't get a whole lot of sleep.

I do believe there is a CLL-related cause to all this. Prior to the abscess, I was on Revlimid at 5 mg, for four days in a row. The tumor flare reaction was so incredibly way-over-the-top that my guess is the bacteria made its way into the node as part of that process. The tumor flare was so bad that I had to stop the Revlimid and go on steroids to bring it down.  It was the failure of the one node to go down very much -- and then its ballooning overnight once I went off steroids -- that alerted me to the fact that something unusual was happening.

Now 5 mg of Revlimid over four days is a baby dose, as these things go, and I have been on and off the drug for a year and a half without the monstrous flare I encountered this time. So why the sudden overreaction in terms of tumor flare? 

I can't say. What I can say is that a recent paper shows that tumor flare predicts response to Revlimid in CLL. That's a good thing in my case. But tumor flare like this???

There are a number of things going on that I'll go into later, but suffice to say that I may not be able to tolerate Revlimid to the degree needed to keep using it. I've been off of it since the flare, and until the abscess is gone and the lymph node heals, I can't do anything in terms of treatment that might put stress on the node.

In the meantime I lurk around the house like Frankenstein with one knob. Fortunately I work at home, where I can't scare small children.

This is how the tumor flare in my neck looked after four days of Revlimid, and the photo barely does justice to it; below is my neck in its more normal state some ten days later.


Anonymous said...

Your description on the phone was not even close to the pictures. If you where a squirrel, you would have the whole winter supplies already collected. Take care and I will call you with my results.

Dave (your revlimid buddy)

Anonymous said...

David... just a caveat...clindamycin is one of the more notorious antibiotics underling subsequent C diff. enterocolitis. As you were hospitalized for 3 days, your risk is further elevated. Most likely you'll be fine, but I would suggest that you ingest probiotics regularly and do not ignore abdominal pain, fever or diarrhea which could manifest even several weeks after completing the antibiotics.

Email or call me if you have any questions about this.

Get well!!


Cynthia said...

David, We are glad to see you post again but so sorry to hear of this latest experience. It looks painful and sounds frightening. You and I have similar cases which were diagnosed about the same time, so my husband and I really appreciate your blog. And I too am now a Revlimid buddy - I've been on the dose escalation trial since March 2011, up to 25 mg daily for the last 5 or more months - depending on my starting dose, which is blind to Dr Kipps and I.
I will continue to send you my best wishes and hope that someday I can do something for you.
Diagnosed 3/2003 at Age 47, unmutated, Zap 70 and CD 38+,
normal Fish. FCR 2004, Campath 2009, 2011 Revlimid

Anonymous said...

HI dave ,
That looks really painful ,hope things have improved followed your blog from the start fantastic and so informative ,still slightly confused by the tumour flare why does it happen ?????

Follow cll Student Nurse

stew (england)

David Arenson said...


Revlimid is an immunomodulator. It gooses the NK and T cells to attack the CLL cells. These killer cells rush to the site of the CLL (lymph nodes) and thus the swelling. (There are no doubt other contributors to the swelling, but that's the gist of it.) Tumor flare usually goes down after two to three weeks. In my case, for some reason, even though I have taken Revlimid on and off since March 2010, the recent tumor flare was much worse than it ever had been. There was every sign that had I continued taking it, it would have caused even more swelling, which was already reaching untenable levels.


Anonymous said...

Hang on Sloopy,
I am sorry to hear about the latest episode of Flare/infection. Wishing you a speedy recovery.

I see that you have been on rituximab before...

I was at ASH this year and an interesting piece of information related to Lymphoma...but would be interesting to see if it ever translates over to CLL.

lenalidomide given after rituximab seemed to relieve rituximab resistance. Dexamethasone improved tolerability with regards to tumor flare and other side effects.

Keep fighting the good fight.