Tuesday, May 11, 2010

Life in the slow lane

It’s been about nine weeks since I started lenalidomide, aka Revlimid. With nearly ten months to go in the protocol, it’s still hard to point to any significant progress.

As you may recall, the initial dose of 10 mg daily led to severe tumor flare and was cut back to 5 mg within the first week. This lower dose was accompanied by a reduction of drug-induced fatigue, as well as a reversal of the tumor flare.

After about a month, my oncologist decided it was time to work our way back up to ten again. For a few weeks I did 10 mg every third day –- 5 mg, 5 mg, 10 mg, 5 mg, 5 mg, 10 mg -– and so on. That proved tolerable, so I am now on 10 mg every other day.

This has been accompanied by the return of noticeable fatigue on the day following the 10 mg dose. Yesterday I was about as zonked as I get. It’s not a sick or fluish feeling, more like a  spaced-out, moving-through-Jello, can’t-deal-with-anything-complicated kind of thing. I got a full night’s sleep –- that’s one thing you can count on with Revlimid –- but also required two naps during the day. Prior to Revlimid, I always used to wake up refreshed from a nap. Now I usually wake up almost as tired as I did before I started.

My reaction of late to 10 mg has not always been so severe; perhaps the drug is beginning to build up in my body. So it will be interesting to see how my tolerance to it develops. The plan is, of course, to go back to 10 mg daily as soon as I can stand it.

Besides the Revlimid I am getting monthly infusions of ofatumumab, aka Arzerra. I haven’t had any infusion reactions, nor any dramatic results.

My CBCs do show progress. Absolute lymphocyte count has dropped from around 12k to a just-above-normal 5k. Platelets are holding steady at low normal, neutrophils remain strong, and the hemoglobin, hematocrit, and overall red count have improved and now sit at low normal as well. I’m pretty sure my autoimmune hemolytic anemia will stay in its box as long as I’m on this protocol.

But the real battle is in the lymph nodes, where most of my disease resides, and where it's hard to know what's happening, other than "not much so far." During my 5 mg month the nodes seemed to be getting just a tad better -– a little softer and spongier in the neck, for example. I've lost a few pounds, so my abdomen looks a little less distended, but it's a leap of faith to say that I lost abdominal lymph node weight.

I think it's accurate to say that the nodes show no truly measurable improvement since I started all this nine weeks ago. How much is drug resistance, how much is the propensity of Revlimid to cause even mild tumor flare, it’s hard to say. The other factor is that it could be too early for noticeable improvement; many patients report that it takes several months to see progress, and one study showed that it took patients a median time of about six months to show best results. The sooner I can get back to 10 mg daily, the sooner things may start looking better.

So a lot of this is a waiting game, accompanied by intermittent bouts of fatigue. For those of us used to seeing rather immediate results from traditional chemo, it’s also a lesson in patience.

The only thing I can safely conclude so far is that the protocol has brought me stable disease. The nodes are not really improving but they’re not getting worse. The AIHA is under control. My red counts have improved, though this potential added energy is offset by Revlimid fatigue. Only time will tell whether I get from stable disease to partial remission.

10 comments:

Anonymous said...

Dave: Thanks for the frank update. Has anyone suggested using a steroid booster? Steroids are sometimes used with Rituxan in a pair and with Revlimid in a pair so it seems natural to add a steroid to Rev+Humax. TomD

Anonymous said...

As always, fingers (and paws) are crossed for you, David. I think a quite likely scenario will be for you to show little response for some months, followed by a rapid and significant improvement. I look forward to that report.

Denny

Hannah said...
This comment has been removed by a blog administrator.
Anonymous said...

Tell Hannah to stay away!!!!

Anonymous said...

thanks for the frank update - I want to know what maybe coming down the track and your posts are greatly appreciated. vl

David Arenson said...

Hannah has gone to the big circular file in cyberspace. I Googled her and apparently she has left thousands of such messages at blogs and websites everywhere.

Tom, as far as I know steroids are only used with Revlimid on a temporary basis to control tumor flare. (If you know of a long-term study of the two together, I'd be curious.) Since steroids dampen immune response, and since Revlimid theoretically boosts immune response, I am not sure how compatible they truly are.

Steroids are a bit of a fail-safe for me if this protocol bombs. I do get a good but fleeting response to them. If it becomes evident many months from now that my OL protocol is a failure, I could see perhaps adding steroids in combination with my remaining Arzerra infusions. But that would be shifting to another therapy, basically.

Denny, I like your scenario. Tell Genevieve I appreciate the paw crossing on my behalf.

vl, I am being as frank as I can. There is a tendency among many patients to adopt an overly-optimistic attitude about therapy. As time has gone on, I've learned to see things from a more balanced perspective. Bad news is part of this game sometimes. But I'm not there yet, even with the somewhat underwhelming response so far. Many more months to go. At the very least I'll be catching up on my sleep!

Anonymous said...

Dave: Revlimid plus dexamethasone is the gold standard for multiple myeloma, a B-cell relative to CLL.
Rituxan plus steroid is also the kinder-gentler CLL treatment. Assuming the steroids work with Humax, there is little extrapolation needed to pose the question I did. The approach may not be sexy enough for current day researchers to explore as witnessed by the clinical trials listed by the government site.
TomD

David Arenson said...

Tom,

Multiple myeloma may be related to CLL but standards of treatment vary within the family of B-cell diseases. Nonetheless, it's worth looking into further. Thanks.

Anonymous said...

Dave:
That is why I posed the question. The trio has appeal because it should be less traumatic than say FCR+Revlimid but possibily more powerful than Revlimid+Humax. I'll pose this to my heme-onc the next time I see him.
TomD

UA-communication-research said...

Hello,

My name is David Keating and I am a student at the University of Arizona. I am working with Dr. Steve Rains, who is an Assistant Professor in the Department of Communication. We are conducting a study about blogging and health and would greatly appreciate it if you would complete our survey. We found your blog by conducting a general search for blogs about health. We would like to know more about your experience blogging.

Our survey takes about 20 minutes to complete. To participate, you must be (a) 18 years of age or older and (b) have made a blog entry in the past 30 days.

If you meet these requirements and would like to participate, please click the link below. The study will be conducted online and the link will take you to the first webpage of the survey.

http://www.surveygizmo.com/s/283578/blogging

[Note: You may copy and paste the address directly into your web browser (i.e., Internet Explorer) to access the study.]

If you have any questions or concerns about the study, you may contact Dr. Rains at: srains@email.arizona.edu

Thanks for your consideration!


Best Regards,

David Keating
**************************
David Keating
Department of Communication
University of Arizona
**************************