Thursday, January 30, 2014

Riding the Richter's roller coaster

As the title of this post implies, things have changed since October, when it appeared I had achieved a pretty good response to treatment.

Seven weeks later, in December, I began to relapse, and it has been a tough slog ever since. I could regale you with all the details -- and perhaps someday I will, when I get a chance, which could be coning up soon. The one image I would like to leave you with is New Year's Eve, which I spent in the hospital getting chemo under my old insurance. At the stroke of midnight, my new insurance kicked in. Which, I think, may make me the first person in the country to use their new insurance under the Affordable Care Act. 

As required by the law, my new insurance provides for stem cell transplants, which my old insurance did not (which means, by the way, that Barack Obama may save my life). And so despite the relapse, I have some good news:

I am on track for an allogenic transplant within the next couple of months at the Mayo Clinic in Phoenix, AZ under the care of Dr. Jose Leis. Mayo has found three potential 10/10 donor matches, a far better pool than I expected given my unusual Jewish-Irish background. 

The success of any transplant depends on the tumor burden going in, and mine has been big. But the Hail Mary chemo I have done (more R-EPCH) has set the DLBCL back. And I have been approved for Ibrutinib, which was Dr. Leis' hope and mine. Studies have shown it to be effective in cases of relapsed aggressive DLBCL, which is what I have. It doesn't work in all cases, but it works in many, so there are still miles to go until I sleep in terms of conditioning for the transplant.

Despite the exhausting roller coaster ride of December and January, I may soon find myself cooped up for 70 days in what they call a transplant pod, with nothing better to do than blog about my experiences -- including some important things I have learned in the past ten years.

My thanks to all of you who have written; I simply haven't had the time to respond personally -- or to write this simple post -- until now. The good wishes of friends and family help keep me going. Most of all, I have the love and incredible strength of my wife, Marilyn. This is our fight. And to paraphrase Churchill, we will never surrender. There have been many truly dark hours, but I see dawn ahead.


Anonymous said...


I'm so sorry to learn of your relapse and the challenges you have faced over the past couple of months. Yet, three potential 10/10 donor matches as well as your incredible attitude, the loving and caring support from family and freinds is truly uplifting and encouraging.

Please know that your CLL cyper support team is thinking of you and sending our best wishes in the coming months.

All the best,
Susan A.

Anonymous said...

They say "no news is good news," but I began to fear that wasn't the case here. As Susan above wrote, you have an awful lot of friends "in the business," and we are all by your virtual side. Reluctant though it might be, you are a true warrior, with the will of a champion. Go David!


Anonymous said...

Hi David,

I was waiting for your update. I keep on checking your blog to see how you are doing. You have been in my prayers. I hope you beat this and come out stronger.


Anonymous said...


I have been also been checking and thinking of you, and have followed your journey since my husband's diagnosis a few years ago. I hope you have this very nasty twist at the very best time, when ibrutinib, donor matches and insurance give you a trifecta to kick this to the curb.


Anonymous said...


I want to wish you all the strength and all the luck in the world. I started to read your blog in the past month, and your recent update almost brought tears to my eyes. God, I wish you beat this thing.

Skullgal said...

Was getting worried but remaining hopeful that we would see a blog post soon. I'm very glad you've been approved for a transplant and also for Ibrutinib. I look forward to (as I'm sure all your other readers do as well) many blog posts from the transplant pod as you kick this thing's butt for once and for all. Sending a Texas-sized dose of energy your way!

Anonymous said...

David, I have followed your blog since I was diagnosed with stage I CLL in early July at the age of 74. The struggle you have endured thru this roller-coaster ride brings tears to my eyes and it gives me hope. I am so happy you have 3 donors testing positive for your transplant and knowing the fighter you are, I know you will come thru this with flying colors. You are in my prayers!!

Anonymous said...

hi david

i 'm nancy from egypt i thank you for posting your experience , my dad was diagnosed with cll in 2006 and he recieved alot of chemo and immunotherapy over the past few years but he could tolerate it until last month when he had bonchitis and drs gave him novantrone waiting for jis new trial with bendamustine but this chemo make his cll to progress dramatically he got infection serious one and lympho rised up to 500 thousand he lost 20 kilos and he has to had 5 units packed rbcs over the last month , now he started having 100ml/m2 bendamustine and we have hope that his status become stable again , he is worrier just like you , hope both of you get well soon