Thursday, February 13, 2014

The road ahead

I've met with my transplant/CLL doctor, Jose Leis, at the Mayo Clinic in Phoenix. He was pleased with my response to Ibrutinib -- dramatic shrinkage of abdominal nodes -- and laid out the course I will be following in the coming months.

For a transplant to have the best chance of success, he emphasized that I need to go into it with nodes no larger than 5 cm. I have a couple of abdominal masses that are well in excess of that, even after eight days of Ibrutinib. Dr. Leis pointed out that Ibrutnib can take a couple of months to reach its maximum effectiveness. So he wants me to stay on it for a few months before we even begin to think about transplant. 

I will likely have a CT scan at the end of that period, and it is possible my disease will be restaged. The hope is that Ibrutinib will do the heavy lifting and get those nodes down. I'll be seeing him once a month, and as we cross various bridges, we'll adjust things as we have to. It's possible that we may add Gazyva (obinutuzumab), the new anti-CD20 monoclonal, at some point, especially if the lymphocyte count in my blood rises dramatically, which is what can happen when Ibrutinib kicks the errant B-cells out of the nodes.

Meanwhile, a donor has been found. Somewhere out there is a man in his 40s who is, as Dr. Leis termed it, a 9.5 out of 10 match. The one allele where there is a mismatch, the DQ, is not clinically significant, according to the doctor. A six-month hold has been placed on the donor, which means he's reserved for me during that time. Let's hope he avoids flying anvils.

We discussed the prospect of Ibrutinib controlling DLBCL without a transplant. Dr. Leis told me this is unproven territory, and my tendency is to go for a transplant, with all the attendant risks. I will never be healthier than I am now, and DLBCL is not CLL. It can kill me, rapidly, and I can tell you from experience that it would be a horrible death, with tumors choking off the body's organs within a month or two. I don't want to die in a hospital, loaded with painkillers, living in a daze.

With most varieties of CLL, time is not of the essence. With aggressive Richter's and resulting DLBCL, the opposite is true. CLL can lead to a certain complacency, but aggressive DLBCL demands action. (The doctor pointed out that DLBCL arising from Richter's is often more aggressive than de novo DLBCL, which arises on its own.)

So things are going my way at the moment. Of course, as Dr. Leis pointed out, there is still a long road ahead, and there's no guarantee that something won't go wrong. But I feel that I'm in good hands, and on the right track. I'm looking forward to a couple of months during which I can gain my strength back following January's chemo, and be in good shape for a transplant.

At least so far, let my story be an example of what can happen when you don't give up. Marilyn was told by more than one doctor and chemo nurse since my Richter's exploded last April that I probably wasn't going to make it. 

Well, here I am, defying the odds. I am reminded of the bell curve. There's a good end of it, and that's where I want to be.

14 comments:

Anonymous said...

Hey David just sitting here on cold jax fl night and very happy to be reading your blog great news hearing about your donor match!!! And i am glad the ibrutinib is working well hopefully it will take the nodes down all the way. You are in our thoughts and prayers. I also have a good wife in my life who has been there in my cll battle the last year and half your fellow cancer survivor JT And ps don't forget tomorrow is saint valentines day,,,

Anonymous said...

Best of luck, man. All our prayers...

Anonymous said...

David I am so happy for you and Marilyn that the ibrutinib is kicking in and you have a match for your transplant. Rest up good man and get as strong as you can. Thank you so much for sharing your journey with us - you are an inspiration. Happy Valentine's Day to you both.

Best wishes

Deborah in Melbourne

Skullgal said...

SO glad you have been able to benefit from the miracle that is Ibrutinib. Looking slim and trim, too! I think about you and Marilyn all the time and am always sending some good energy your way. You have made it past so many milestones - such an inspiration!

Anonymous said...

So glad to see your recent blogs and to hear that you're doing so much better. I am a post-chemo CLL'er in remission, and have found your blog a wonderful source of excellent information as well as inspiration.

-Frank

Anonymous said...

I am happy that ibrutinib is kicking in. You are in my thoughts and prayers.

Satender

Anonymous said...

David, best to you and thank you for your writing as it shows you are a gifted wordsmith and vanguard for us. I just got dx today stage 0 at age 46 so we have the onset age in common. godspeed and thank you.

Carolina Creations - Jan and Michael Francoeur said...

My husband was just diagnosed with Richter's Transformation. Because I have been following your blog since he was first diagnosed with CLL in 2011. It really helped me know what are some of the questions to ask. Also just enjoy your writing even though you are dealing with such a tough disease. Good luck with your transplant and hope today is a good day for you. Thank you for your writing.

Anonymous said...

Hi David,

Just waiting to know how you are keeping. Hope every thing is fine there.

steven wedgbury said...
This comment has been removed by the author.
Anonymous said...

hey david

how are you now doing now. I am waiting to read another article from you. Hoping it will come soon. you are an inspiration.

Anonymous said...

David, So very pleased to hear about the match…9.5 out of 10…lovely my dear! So now you prepare for the mission. You have always gone in full throttle and I suspect this will be no different. Greetings to M, your grace filled side kick. All good thoughts are headed your way. Rest up! Keep us in the loop on this so we can send all the love and karma we have your way! Thanks for everything!! wendy

Anonymous said...

Hang in there friend. Stay strong.

Carolina Creations - Jan and Michael Francoeur said...

Turns out my husband is looking at a transplant now too. Hope all is going as planned with you, we are sharing your journey and wish you all the best.