Monday, September 03, 2012

Endless war

Today is the ninth anniversary of my diagnosis with chronic lymphocytic leukemia, after which I will enter my tenth year of fighting this thing.

The date September 3 occupies the same place in my memory as September 11, November 22, and December 7. In other words, it is a date that lives in infamy.

I have some random thoughts today, as I do every time September 3 rolls around.

One is that I am living in what the late CLL expert Dr. Terry Hamblin would have regarded as my end times. People with my type of CLL (unmutated, 11q-deleted, at least up until recently) live about eight to twelve years after diagnosis, he once told me. He had hundreds, if not thousands, of case histories to back up that assertion.

But he told me this back in 2006 or 2007, and fortunately a lot has changed in CLL very quickly. I have been able to take advantage of two new treatments, lenalidomide (Revlimid) and now bendamustine (Treanda). The horizon looks a little bright, what with the kinase inhibitor trials that seem to be keeping CLL in check, as well as the killer T-cell technology that is being developed to, just perhaps, put an end to the disease once and for all. There’s more stuff out there; I can’t keep track of it all. But I do believe that someday in the not-too-distant future, maybe in another nine years, CLL as we know it today will be a highly controllable beast. (And I have no doubt that within the lifetimes of some readers of this blog, it will basically become a curable condition.)

I just have to get from here to there and beat Dr. Hamblin’s odds. There are ways to try to do this. One is to make the best decisions possible, which is never easy. I've made my choices, and unless there is an alternate universe somewhere with another me who chose a different course, there's no way of knowing if I have made the best choices. There is a reason why I keep this quote from Vaclav Havel on the right side of this page: "Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out." 

A second factor is the pace of research and development, the degree to which progress in treatment is made, both through dogged determination and strokes of good fortune. In this department, things are moving about as fast as can be hoped.

A third factor is the ultimate one, in my view: Luck.

For all the problems with our medical system, I am lucky to live in the United States, where most of the CLL research and clinical trials of import take place. I am not so lucky to be saddled with bad insurance, but there are ways to get past some of those limitations if one is willing to dig deep enough and be persistent enough. Still, the re-election of Barack Obama may have a direct impact on my life span. The survivability of the Affordable Care Act, which would allow me to purchase much better private insurance in 2014, is a personal thing to me.

More than that, luck has a lot to do with how the disease progresses, what course it takes. We CLLers live forever with the prospect of a shoe dropping somewhere, bringing with it a new and unwelcome challenge. I’ve had my problems this past year, but the current bendamustine-rituximab treatments appear to be giving me a new lease on life, as it were. Where things will be with me in three, six, nine years, I cannot know. I do know that the disease rarely gets better the longer you have it; I also know that new treatments are changing the game.

Playing the game is an inescapable fact of life for those with a chronic disease. After nine long years I feel like a veteran of what Dr. Hamblin once likened to a war of attrition. Another CLL expert, Dr. John Byrd, told me in 2006 that CLL is a long journey.

May yours – and mine – be so long as to see the day when we can live our lives without it.


Skullgal said...

Wanted to say thank you for the informative and well-written blog. I was just diagnosed with CLL a month ago and your blog has helped me navigate through the dense thicket of information through which I must now pass. I am glad your latest course of treatment is helping and I look forward to reading many more installments in your - ahem - adventure. All the Best!

andrew said...

hi...just to say thanks for sharing your journer.I was diagnosed six months ago and your story has helped me find my way around it. hope you keep well . all the best ,andrew

Anonymous said...


While early in my long journey (2 1/2 years in live and watch), wanted to thank you again for providing so many of us with this well written, well thought out blog.

It has provided many of us with a way to approach CLL; an approach that I have used many times with myself and others.

Your overall assessment of treatments in the pipeline,in trials and in dreams seems spot on.

One day we can hopefully toast your 25th anniversary in Arizona!

Anonymous said...

Hi, David. Happy Anniversary! We're still going. I'm sorry I hadn't posted to my blog for some time, but I'm now retired, so after I get some other neglected business done, I'll go back to it. My CLL is still very much indolent. I try to drink my green tea, but I'm not always good about that. Right now I see my onc. every 6 months for both the breast cancer and CLL. Take care. Margaret Klubben

Brian Koffman said...

Hi David,

For me it's seven years will 11q and now 17p and what a long strange trip it has been. Thanks for your thoughtful comments and reflections, The future for those of us will CLL has never looked better. It just that us CLL war veteran need to find a way to get to that promising future with still enough gas in the tank to get over the finish line to a cure or at least a control.

Be well. We are all in this together


Wally said...

Thanks David! Just passed the four year mark myself. FCR initially and was heading down the stem cell transplant route until a clinical trial popped up that looked like it may delay the need for the SCT. Gladly jumped at that trial and have since participated in a couple others. The more we can learn the longer the battle. Like many others who were shocked to read the statistics when first diagnosed I'm thrilled to still be around to talk about it. Thanks for maintaining this blog.....

Anonymous said...

Really enjoying your blog David and wishing you well. My first year anniversary approaches next week and what a year it has been, also the year I turned 40! With low hb and platelets and rising WBC , treatment is close on the horizon for me but I'm hoping as you and all Cll'ers are I'm sure that the new targeted treatments can slay this dragon or at least restrain him for many years.

Anonymous said...

Thank you, David, for this blog. I was diagnosed six months ago. Haven't had treatment yet, but am trying to learn as much as I can about the illness and the different alternatives. Some other blogs I've seen are wet blankets. They make me totally depressed after reading, but yours is hopeful and informative at the same time without being la-di-da. All the best to you! --AM

Anonymous said...

For those of you who have not seen it in the news today (September 21),MD Anderson Cancer Center is "Launching a New War on Cancer" for a handful of specific cancer types, including CLL. Use google to find the news.

Denny (16-year survivor of Stage IV CLL)

Anonymous said...

David, I'm grateful to you for sharing your experiences and insights! I'm a newbie just diagnosed with Stage 3 CLL on "Friday the 13th" of July, 2012. Am responding well to BR, with 2 - 4 more rounds to go. Your educated optimism about the possibility for a cure within the next 9 years gives me hope! Please keep blogging. I expect to keep reading your posts for many years to come!

Thank you,

Anonymous said...

David , thank you , your blogs are inspirational . I was dx in 2004 , 11q unmutated , and was so lucky to be fine until April of this year when things went pear shaped . Heamaglobin dropped to below 7 , so five unit of blood Rh neg and straight on to FCR .
FCR well tolerated till the 5th cycle which I found harsh , but fortunately my bloods were such ( WBC 0.3 ) that I was able to stop . I am , I know at risk of infection but , again that word luck , I live in the UK and I have all the drugs I need free of charge . This is our NHS . My heart goes out to people in the US , or anywhere else , who are unable to afford sufficient insurance .
Keep writing David , I read all your blogs and have just had a good laugh , an excellent medicine , at your ' humor ' blog .
Love to everyone .

Anonymous said...

I've lived with bad markers (11q, ZAP 70 etc.) for over 14 years. A woman at my church told me that was a good thing. I replied that I wish I could have skipped this whole thing altogether.

Currently on the GS-1101 trial.