Tuesday, September 28, 2010

Onward and upward with Revlimid

At the end of my last post, I posed the question of what to do about my Revlimid dose, which is providing stable disease at 10 mg per day. 

Do I accept that as the end point and maybe even step it back a bit if stable disease can be maintained at a lower dose? (After all, we really don't know what Revlimid is doing to my body, and what its long-term effects will be.) 

Or do I increase the dose in the hope that the more drug I take, the more effective it will be? (After all, we are dealing with CLL here, and knocking it back is worth the risk, which may turn out to be small given Revlimid's history in CLL so far.)

Run this question by one of the leading experts on CLL and Revlimid and the answer is: Bump it up.

And so, for almost two weeks now, I've been on 15 mg of the stuff.

I have a friend who is in a clinical trial at New York's Roswell Park Cancer Institute, where Dr. Asher Chanan-Khan is the principal investigator, and where the clinical nurses also know more than a thing or two about Revlimid and CLL. Chanan-Khan and his staff have been doing Revlimid (aka lenalidomide) trials for several years and probably know more about its effects on CLLers than anyone else. This fellow patient kindly agreed to run my case by the powers that be. 

The patient is in a trial for untreated patients, in which participants are stepped up to 25 mg at two week intervals, starting with 5 mg. Optimally, patients will then stay on 25 mg for six months, which is the level at which the best results have been seen. After that, patients will go into a lower dose Revlimid maintenance program. One patient has been in treatment for 52 months.

Some patients can't tolerate the drug, of course, and have to drop out. Others get good results at lower doses than 25 mg, so they are never bumped up all the way. There's a certain finessing that goes along with determining Revlimid dosages.

Ironically, the higher the dose, the easier the drug seems to be on most patients. Nurses report more problems in the beginning, with smaller doses, as the body gets used to the drug. My friend, who is now at 25 mg, reports that his experience bears this out.

Much to my surprise given my rocky Revlimid history of tumor flare and rash, my experience is bearing it out also. The only ripple is that I have experienced more tumor flare -- the usual, non-dramatic kind, nothing like I had in the beginning. This is understandable given the increase in dosage. Tumor flare is a good sign, according to Dr. Chanan-Khan, who says it means the drug is working.

Chanan-Khan also thinks the Revlimid is doing most of the work in the protocol I'm on, which also involves periodic infusions of the anti-CD20 monoclonal antibody Arzerra (ofatumumab).

I discussed all this with my oncologist, and she agreed that bumping up the dose at two week intervals was worth a try so long as I can tolerate the drug. We'll continue with the Arzerra for the time being. So the original OL protocol has now been modified to reflect higher doses of Revlimid. One of the advantages of following a clinical trial from afar is that you can modify it if necessary since you aren't locked into a search for empirical data. Your primary concern is clinical results. 

My friend also has 11q-deleted CLL and has noticed progress with his lymph nodes as time has gone on and dosages have increased. At 5 mg and 10 mg some of his nodes became soft and squishy and at 25 mg he notices node masses separating.

Since nodes are my biggest challenge, I'm hoping for tangible progress as time goes on. I had some beginning in May, when a big node mass under my right armpit separated, but things appear to have found a plateau since then.

It's important to remember that Revlimid is an immunomodulator, not a traditional chemo drug, so progress will be slower and less complete -- but I hope significant enough in the course of time to keep the disease down without taking on the risks associated with fludarabine, cyclophosphamide, and the like.

Tomorrow, 20 mg. 

The Vitruvian Rat


Brian Koffman said...


Your plan makes good sense. The trick with lenalidomide seems to be to go slow and to go long.

I am considering it myself as a prelude to a second transplant, It seems to work well on the nodes 11q -ers like you and me have. Also it doesn't seem to screw up the auto-immune issues, in my case ITP

Thanks for sharing your story

We are all in this together

Brian http://bkoffman.blogspot.com/

Anonymous said...

Good for you! I do want you to check into the new trial that Tom is on at MDAnderson. It is absolutely fantastic at reducing large nodes, but they may be it's best reward.....they don't know yet. It is Btk inhibitor PCI-32765.Tom has only been on it a few days, but no side effects like the Revlimid had. No drowsy, brain mashing feelings. His glands have tingled a little but are already melting away. We are watching the 8cm one in particular.
This drug literally pushes all the CLL out of the lymph nodes and into the bloodstream. They expect Tom's WBC to triple during the first week. Sad to say, it is only a phase I trial, so there is nothing that is being used to synergize with it yet. that should happen after this trial of 6 months. It is also oral.

Take care and keep updating---

Anonymous said...

hi, I wish everyone a good day. I was wondering how JLOU was doing, my brother has been on the PCI-32765 trial since end of october.
Thank you, BBG

David Arenson said...


For updates on JLOU and Tom, go to CLL Forum (www.cllforum.com).