Sunday, March 17, 2013

Bendamustine and rituximab: the verdict

The results are in. After five cycles of bendamustine (Treanda) and rituximab, which ended in mid-November, I can report that the treatment worked better than I expected.

As you may recall, I entered into it last July feeling a little desperate. My marrow was 90% impacted with CLL, my hemoglobin had dropped into the 7s, my platelets were dipping below 100, and thanks to swollen lymph nodes my abdomen looked like it was ready to give birth to three or four alien babies. You know, the big, ugly Sigourney-Weaver-attacking kind.

When chemo began I did not know what to expect. I knew a CR (complete response) was out of the question. I just hoped I wouldn't get a HAR (half-assed response), one so ultimately poor and useless that it would render all the time, pain, and money not worth it.  Especially in someone as heavily pretreated as myself, that kind of response was entirely possible. The disease tends to become more refractory to treatment as time goes on; you don't want a big, ugly failure to confirm your worst fears.

Well, I've now had a follow-up bone marrow biopsy and CT scan. And the bone marrow result was one I did not expect: a CR in the bone marrow, courtesy of a 5-color flow cytometry.

The CLL clones are there, just in numbers too few to analyze. The flow cytometry reveals "no specific diagnostic abnormality." Susupicious B cells comprise "approximately 0.1% of the total cellularity," or "too few to accurately assess clonality."

I have to admit that I just about fell out of my chair upon hearing the news. I was hoping, at best, for maybe 20% CLL in the marrow, a significant reduction, to be sure. But not one that pushes my CLL back to pre-diagnosis levels.

The CT scan of chest, abdomen and pelvis came out about as well as I might have hoped, but with less stellar results: Numerous swollen nodes are still there, especially in the retroperitoneum of the abdomen. The largest node is 6 x 4 cm, or about 2.4 x 1.6 inches. There are two others about that size, as well as numerous smaller ones.

What I am grateful for is that no huge cluster or mass of nodes was found; one can only wonder how bad things must have been at the start of chemo.

The spleen was also enlarged, 10 x 6 x 17 cm. 

An added bonus on the CT was what wasn't found: "The liver, spleen, gallbladder, pancreas, adrenal glands, and kidneys are unremarkable. . . . Lungs are clear." In other words, no new wrinkles to challenge me on top of the CLL.

Four months after therapy my peripheral blood continues to look good, with an absolute lympohoctye count of 0.8, hemoglobin of 12.3, and platelets at 153.

Like Caesar's Gaul, CLL is divided into three parts: the marrow, the peripheral blood, and the nodes. It appears that chemo pretty much flushed it out of the first two. It remains a problem and a challenge in the nodes and spleen, which is what I would have expected given my history. And my B2M remains high at 5.1, which indicates the disease won't be staying out of those other two compartments forever.

So now, the challenge is maintaining -- or building upon -- the remission I have. I had a good visit with Dr. Thomas Kipps in San Diego in January. More on that in my next post, as well as some thoughts as to where to go from here. 

But the headline is that the chemo was worth it and that the disease has been dealt a significant blow.


Anonymous said...

Hi Dave, I have been following your blog for the last 7 years. I am an 8year survivor of cll and still in watch and wait with a steadily increasing wbc. Congrats on your recent results and thanks for your posts, they make me feel less afraid of the future.

dirtrider said...

Thanks for the update David. I've been following you along time. Hoping for this update. Keep them coming. Currently, I've completed 3 of 6 cycles of PCR. Doc thought I would get the same remission as CR. Thanks a bunch and keep writing.



dirtrider said...

BR is what I meant to type.!!! Sorry for the confusion,


Anonymous said...

Thank you Brian for sharing your experience
with us .Makes me less afraid for the future with cll. Diagnosed 3 years ago with normal blood etc but lots of nodes, all over, clusters too. Cll with 13q, mutated, headed for BR.


Anonymous said...

Unexpected GOOD news! We like it!


Mark said...

Dave, I am glad to hear the good news. I really enjoy your blog and get worried when you go nearly three months without a post. The humor in your writing style is just great! I am a CLL patient too in watch and wait (worry) and I worry less and I am more hopeful learning from warriors like you! Thanks for the update and God bless.

Anonymous said...

Hi Dave,
Thanks for writing, I was worried.
My husband is Zap 70 pos, CD38 pos, 11Q del, and unmutated. He had BR and is 18 months into remission. He was not refractory but rather a new patient when he had BR and got the same less than 1% left in the marrow as you! I wish you a long remission.

Anonymous said...

Speaking of Dr. Kipps, some very good news today:

Monoclonal Antibody Targets, Kills Leukemia Cells

Anonymous said...

David, loved the HAR comment, loved hearing about your response, such good news!! Now for a break in the action, you have worked hard, enjoy some time off, greetings to thinking about hat cleaned up marrow..SWEET!

Anonymous said...

Glad to hear your good results. You helped me face my BR treatments with realism and hope.

I had two treatments of BR, the second one was really bad (rash, bad nausea and more for days) but the two treatments were enough to knock me back to normal levels and to watchful waiting. So for me too the chemo was worth it.

Thank you for this blog. It really helps.

Anonymous said...

Thank you for sharing and inspiring. You are my hero !

Anonymous said...

What did Kipps have to say?

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Joe C said...

Wow, what an information-packed blog. I'm 65 yrs old, I was diagnosed about 3 yrs ago and have been in watch and wait mode. But my last tests showed my wc at 50K and a cat scan showed some swollen abdominal nodes, so I'm about to go see my onco for what will probably be the first round of treatment. It's nice to find a link into the online CLL community. I'm amazed at the depth of your knowledge.

Anonymous said...

Dear David,

I came by your blog doing research for my father’s disease. He has been diagnosed with CLL 2 years ago and we were in the wait and watch phase. Than, one week ago he just got hemolytic anemia, everything happened so sudden, as he checks his blood work every month. From no treatment we went into a full blown chemo, with Rituximab, cyclophosphamide and prednisone. I felt that my world was falling apart, I thought we will not need treatment for a long time….and now, out of the blue, the anemia…...the chemo…..
I was frantically searching for answers……papers, research……medical journals…and I came by your blog.
I was deeply moved by your story with the disease and I want you to know…..that your words brought me hope. You know why? Because you are determined to fight it and you are optimistic………I am going to follow your example and… my father to make informed choices…..and fight this the best he can!

I wanted to contact you differently, I have some private questions that do not find their place on a webpage. I could not find an e-mail address for you, if you would be so kind to contact me at, I would greatly appreciate it.

Since I have been personally touched by this disease, I want to do more for people that have to deal with it. So I am starting an NGO that will try to raise funds for CLL research. I believe in the power of mind and I believe than when focused on this, doctors can come up with a cure. Together we’re stronger …. I want my father to win this fight, I want you and all affected by it to win!

Anonymous said...

Waiting for the Dr. Kipps update, been a month and a half

Anonymous said...

Dave, your blog is A-OK. I'm CLL here in the foothils of the Adirondacks. Enlarged spleen but otherwise not much in the way of nodules. Had single agent R for a year; needed more as platelets and hemo and spleen were not so good, Spleen decided to rotate left kidney out of place, etc. Also congestive heart failure for past three years. Funny part is, I almost always feel pretty good. Too dumb to know how screwed up I am, I guess. Started BR; today starts fifth of six treatments, as long as WBC and PLT are high enough. Thanks for your great diary.
...A young 73-yr-old geezer in Northville, NY.


Anonymous said...

Great news, David! Things are moving fast on the emerging treatment front. Hopefully you have bought enough time to get to try out one of the kinase inhibitors.

I've been in remission on lenalidomide for over 2 years now and still going strong.

Best wishes to you!

Ben Marto said...

Hey Dave,
Great blog and even better news. Have you been considered for or been treated with ibrutinib?
I wonder whether anyone out there has sypmtoms like mine (or maybe you've heard from others with similar) - heavy/throbbing/choking but not very large lymph nodes in neck, flu-like malaise, low ALC and not other signs of active disease.

lisa guest said...

Brian recommended you awhile back. I have the CLL passed down by women in our family. I got it at 50. Had HDMP+R @ 51. Now facing a clinical trial @ 53. Found you looking up Castro reviews. Read you about him... love your writing, but worried that if you went through that in 2006 maybe you weren't around anymore, but HOME told me you most certainly are! YES. I've blogged on Caring Bridge but not to the extent you do here and what you provide is incredibly wonderful.

Castro tells me only one woman had one day of nausea with BR. Wow. Doesn't sound that easy. I see you now see Kipps instead. I love how you write about studying up, having long range and short range plans, yet going with your intuition. I know an oncologist who was a whistleblower and wrote books about how screwed up the medical industry is (esp cancer). He says chlorambucil still works the way it worked for 40 years, but of course you can't get it prescribed because there is no money in it.

If we can have a private conversation,

Anonymous said...

Hi David,
I have just found your blob and i wish I had found it earlier. My Mum was diagnosed with CLL about 15 years ago and has been through 3 rounds of treatment with Fludarabine in that time. Needless to say she cannot have any more of that form of Chemo. She is about to start the BR treatment in 2 weeks, so it is comforting to hear about your testimony on these drugs. She too has en enlarged spleen. It is very hard for me as I live in the USA but all my family is back in England. Thank you so much for sharing.


Anonymous said...

Does anyone know if probiotics can be used with the BR drug combination?

ms said...

David, this is a beautifully written post. Do you write for a living? Btw, glad you're doing so well (hope I've read far enough to have that right). -- Mark