Sunday, September 05, 2010

The OL protocol after six months

It was six months ago to this day that I first downed a Revlimid capsule. Cheers! Salud! L'chayim!

I was embarking on the pill half of my latest CLL treatment protocol: Arzerra (aka ofatumumab), the anti-CD20 monoclonal antibody; and Revlimid (aka lenalidomide), an immunomodulator. I call it the OL protocol.

As readers of this blog know, I had my challenges with the Revlimid: tumor flare, rash, fatigue. It's not a fun drug. My body got used to it, but I'm not sure I have. 

I'm just about to end a week-long, doctor-approved Revlimid treatment holiday. The OL protocol has me slogging through 10 mg of the stuff every day. In myeloma protocols, and in at least one CLL clinical trial that I know of, patients get three weeks on and one week off. During this week off I have slowly seen the drug-induced fatigue and dullness leave my body. I have more energy again and I'm mentally sharper. Revlimid subtly but surely detracts from certain aspects of quality of life. So the results had better be worth it.

Are they?

The results so far have been mixed, a combination of disappointment and relief, and might technically be considered to be "Stable disease Plus."

The disappointment has been in the lymph nodes, where most of my 11q-deleted disease resides. Back in May I thought I was finally having some luck in that department. But rather than presaging progress to come, it turns out May's results were an anomaly. Further treatment has not yielded any more progress. The nodes are pretty much where they were when I began. 

Which is to say they appear to be (with the naked eye and roving hands, as opposed to an abdominal CT scan) stable. While I was hoping for more, I have learned after seven years of fighting this thing to be content with treading water. It beats drowning.  

Nodes, like facts, are stubborn things, at least in my case. The only thing that will really blast them -- and I'm not at all confident that it would get rid of them completely -- is heavy-duty chemo. Steroids provide a nice reduction, but it is fleeting. The addition of cyclophosphamide provides a longer reduction, but not that long. FCR would probably do better, as would R-CHOP or the like. But the results would last how long? It's best not to take that sort of step unless I really have no other choice, and unless I'm prepared to roll the dice on a transplant afterward. But it is also best not to let the nodes get any worse, which means that keeping them stable, while not optimal, is important.

An area where the protocol has worked has been in the peripheral blood. My absolute lymphocyte count has been "normal" for months now, dropping from 11.8 on Feb. 23, the day before the protocol began with my first Arzerra infusion, to 3.2 as of last week. In clinical terms this means absolutely nothing. The blood is not where the disease is congregating. 

I have also been spared the neutropenia and thrombocytopenia that can accompany the protocol. My platelets, which have slowly dropped over the years, landing in the 120s a couple of years ago, have remained stable.

The really good news -- and the "relief" I mentioned above -- is that there has been no sign of autoimmune hemolytic anemia (AIHA) since I began the OL protocol. On the quality-of-life scale, dealing with sudden bouts of severe hemolysis of red cells has been the bane of my existence since the first incident occurred in early 2007. Over the course of time I became refractory to more and more AIHA treatments, including steroids and Rituxan. It was even getting to the point that the RCD protocol  (Rituxan, cyclophosphamide, and dexamethasone) was only holding me for three months.

Here I am, six months later, with normalized red counts, hemoglobin testing in the 13s and 14s, and no signs of orange pee or pounding in my ear. I can't leap tall buildings in a single bound, but I can at least climb the stairs with ease.

I am thinking that the Revlimid, doing its immunomodulating thing, is probably responsible, or primarily so. I had already become refractory to Rituxan, and Arzerra is a cousin of that drug. Dr. Chanan-Khan, the CLL Revlimid research guru, told me that he knows of two actively hemolysing patients whose situations were turned around when they were given Revlimid.

The take-home message to all of you fellow AIHA-ers is: Consider Revlimid.

This is the big "Plus" in "Stable disease Plus" and -- along with maintaining evident stability of the nodes -- is a big reason why I will continue to take the drug and work with the protocol. My doctor and I are discussing ways to tweak it or change it, given that it appears I will have no more progress with the nodes the way things are. The question is: What is the minimum dosage I need to maintain stable disease and keep the AIHA in its box? And another question: To what degree is the Arzerra contributing to this stability? And of course: Will upping the dose of Revlimid give better results on the nodes?

There are always more questions than answers in CLL.


Tom said...

Thanks for the update! I've been checking in almost daily. Good luck with the rest of the protocol. Even though the nodes haven't regressed, stable disease is good news. The AIHA news is great news!

I look forward to hearing what the "tweaking" plan is. If there is some way to bring down the tumor load during the protocol and then have the protocol keep it down would be great.

Continued good luck,

Dave said...

I'm also on Revlimid with Dr. Chanan-Khan having 11q-deleted disease. I started at 5mg and have work my way up to 25mg in 3 months. I have some reduction in tumor load (but it started at a wbc of 560,000 down to 420,000) and also some of the same side effects. They our telling me that the real reduction comes with the 25 mg pill(only been on it for 10 days). Would like to discuss this farther with you in cll forum pm.

Good luck

Dave Weisler

Anonymous said...

Thanks for the update and 'boring' news. Nothing wrong with steady state as long as you can tolerate the regime which you seem to be able to. As in myeloma, you seem to have hit a plateau so questioning a drug tweak is in order. Hopefully not an increase in revlimid.

Anonymous said...

Nodes can and do go down without heavy-duty chemo. For example, flavopiridol will shrink nodes down to almost nothing. Cal-101 shrinks nodes significantly. HDMP+R will do the same. EGCG has shrunk lymph nodes, as reported my the Mayo Clinic.

Perhaps you could try one of those.

Anonymous said...

Dave Weisler - I am also in the Roswell study. I am 11 & 17 depleted. I started the study in March & got up to 25 mg for about a week but could not tolerate. The main side efffect was severe fatigue. I was off the L for a month & they put me on 15mg ( 5 months now) which I have no problems except my RDCs & HG are so low I have needed transfusions. My whites have been within range for 4 months. How are you doing with 25mg?

Anonymous said...

Revlimid is so 2006. It's all about Pomalidomide baby...

David Arenson said...

I don't see where pomalidomide is being used for CLL. Looks like a myeloma thing.

Anonymous said...

My wbc is down to 60, and my hg and plts are just below normal. The 25 mg has its some side-effects, but they are tolerable.