Tuesday, December 9, 2008

"If I listened long enough to you" Tim Hardin

"If I gave you time to change my mind
I'd find a way just to leave the past behind
Knowing that you lied straight-faced while I cried
Still I'd look to find a reason to believe"

Tim Hardin

This post is pretty straight ahead medical. I will share some of my emotional and intellectual twisting in the wind later this week.

As you may recall we left me, our protagonist on a quest for more information.

When the experienced pathologist peered through his microscope at my bone marrow on the first of the month, when the hematology section of the lab went further and dug deeper using the fancy flow cytometry to search for one in 10,000 cancerous cells, they came up empty. No cancer. Nada! Rien de tout!

When they did my CT scan, the rad (the in term for radiologist), found rock solid stability in my cervical, axillary (armpits), inguinal, mediastinal (chest) nodes, BUT he discovered to our mutual dismay that my mesenteric (gut) nodes were "plumper".  True, I am trying to bulk up, but not nodally. Today I got a second opinion and had the digital files (x-ray on actual films are so 90s) reviewed by another rad. He found some growth not only in size, but also in number. Subtle. He called it suspicious. I call it bad news.

At ASH ( the 20,000 strong Hematology conference) I got a plethora of conflicting takes from the transplant and CLL gurus. More on my reflections on ASH later.

I met some wise doctors who were most generous with their time, and I asked very specific questions, about what matter most to me, that being me.

Question: Can CLL reoccur in the nodes with a clean marrow after transplant? 
Answer: Very rarely, OR " you betcha" especially with my risk factors, maybe a 1/4 of the time.

Question: Is the change in node size significant or are there benign causes for the fluctuation?
Answer: Maybe in the neck or groin, but you just don't see those changes in the gut OR they are still so small I wouldn't worry about it.

My best guess?  You must call them the way you see them, not the way you wish they were. Not much else would cause my nodes to swell. I assume it is the CLL, but I also think it is safe to wait 6 week to confirm with a follow up CT scan to be for sure for sure. There is much at stake. One CLL expert from Australia said I might be cured by the processes I have already been through. It was a minority opinion, but maybe he's right.

Question: Should I get a DLI (donor leucocyte infusion where I get donor white cells injected into my blood stream with no immunosuppression in a daring attempt to save my graft and knock out any residual cancer, but at a high risk of  GVHD or graft versus host disease)?
Answer: Most everyone said yes, but I better hurry. My doctor was not convinced as of Sunday, but he planned to get more opinions. I hope he's changed his mind.

Question: Should I complete the course of chemo with 3 more sets of FCR (the top chemo cocktail out there to treat CLL and the one that was heavily fortified for use in my pre-transplant preparation or conditioning)?
Answer: Finally a consensus: Don't do it. Turns out that a MRD- (minimal residual  disease negative) remission is just as predictive of good outcome no matter if the test is able to uncover only 1/1,000 cancer cells or 1/100.000. That would seem to suggest that striving for an even deeper remission once I've hit that sweet spot of being MRD-  by dousing me with more chemo wouldn't add much except more toxicity and immunosuppression. My doctor doesn't necessarily agree.

Here's my plan as of 12/8/2008 at 23:28:47. It could change 10 times in the next 10 days. Or ten seconds.

I want a DLI if possible, but it must be soon. If no DLI, then a second transplant now (now really means in 6-8 weeks in all probability if donor and insurance line up). I am also fine with waiting up to two months, but not longer and if the CT scan or bone marrow biopsy then shows any hint of a problem, cue the transplant music again. Details of that particular dance will be the thrust of another post. If I remain disease free, I just need close follow-up, every 90 days or so. That's a lot of rads (not the cool term for radiologists, but the hot term for absorbed cancer causing radiation energy), but I don't see much choice. You can't fight what you don't know

What I won't do is more chemo unless it is the first step of a two step process, with step two being transplant. Makes no sense to me.

But if I gave you time to change my mind....

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Blogger Wendy S. Harpham, MD said...

Dear Dr. Koffman,

These are difficult decisions, especially since you are receiving conflicting advice from equally expert oncologists.

May you take comfort in knowing that your physicians feel you have time to decide, unlike patients who need to begin some treatment in the next 48 hours, or else.

May you take comfort in knowing that you have many good options that give you good reason to remain hopeful.

May you take comfort in knowing that your excellent physical condition is a good sign and a factor that will help you through whatever you have to do.

May you take comfort in knowing that many survivors before you have gone through repeated courses of treatment and are now enjoying full, productive, joy-filled lives (like me).

May you take comfort in knowing that many people are pulling for you.

With hope, Wendy

December 10, 2008 at 7:24 AM  
Blogger Unknown said...

Thank you for keeping us posted. You remain in our thoughts and prayers every day.

Rachelle Yeates & Your St. Jude Family

December 10, 2008 at 9:27 AM  
Blogger Karen O said...

I am praying for you, Dr. Kaufmann, for healing and for the decisions that must be made, for wisdom, and, once those decisions are made, for peace regarding the path you are on. Take care. Karen Owens

December 10, 2008 at 11:37 AM  
Blogger Jean said...

Hello Brian--

I represent the National Bone Marrow Transplant Link, a non-profit organization dedicated to providing information and support services to SCT patients, their caregivers and families. Please visit our web site, www.nbmtlink.org, for information regarding our programs, including the "Celebrating Second Birthdays" Survivorship program.

All the best to you,
Jean Jones

P.S. My daughter, a 6-year transplant survivor, is a fourth year medical student, but not a vegan!!

December 10, 2008 at 1:13 PM  

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