Tuesday, March 31, 2009
Monday, March 30, 2009
Walking (three) and a letter from a friend
Today the walk at sunset was on a blustery gray day. Cold for California. On shore breeze that blows out the watery and mental waves.
So, when you stop focussing so much on CLL, what will you be doing differently? How will Patti, your kids and your closest friends know that this sea change has occurred?
Here's my reply:
Good question. Excellent question.
I am not sure. I will probably not spend any less time reading about CLL and transplant, but it will carry less personal urgency. As a result, my conversations and actions should be more about everything except CLL. It is really Patty that feels the bulk of the impact of my mood changes and any cognitive restructuring.
I will still be working with my CLL support group, and answering cancer emails and phone calls. I will still be responding to the questions and concerns of friends that often lead my contact with them. My connection with my kids are way too broad and deep, so the CLL is just a grain of sand in the grease of our complex relations. I don't think the CLL is much of an impediment even now to our closeness.
Also I will still be focussing on the disease when I have doctor's visits, lab work, and CLL conferences.
CLL will be gobbling up less on my life, and so I will be back to work, writing more (about survival), and just enjoying my life. Less looking over my shoulder, which should have a subtle effect on those around me.
Instead of being the gorilla in the room that no-one is acknowledging, maybe now it is a trained chimp.
Thanks. Be well
Sunday, March 29, 2009
Thursday, March 26, 2009
My rough thoughts
This is a rough draft of my notes to myself (and my wife), unedited and uncut to give you a sense of what goes on in my head as I try to sort out the best moves with this crazy thing called CLL.
First what do the nodes mean?
I have two growing nodes in my gut, maybe more. Other nodes are "plumper"
My CT scan shows definite growth. But is it the CLL?
Could it be nothing? Castro said it might be not important and Rai thinks it still might be fibrotic tissue that could grow.
Rai seemed to indicate the lack of any other nodes was particularly critical. At least he asked about it several times and examined me himself. Castro though that all the nodes should grow at once in CLL So does Kipps. Not Tam or Keating.
Steve Forman and the two radiologists say they are evidence of relapse. They offer nothing else to explain the change other than CLL on its way back.
Rick Furman goes in a different direction. He thinks my nodes are growing too fast for CLL and it is important to rule out PTLD, before any cytotoxic treatment. He said my disease is nodal. Acting like a lymphoma.
The next issue is the reason for the profound change in my nodes and for my bone marrow becoming and staying MRD negative after the transplant.
Castro and Rai think the T cells may have been a factor, though Rai also suspects that the chemo was definitive. He seemed to waver.
Steve Forman gave me a definite no to the transplant being any factor in my remission.It is all chemo effect. Rick Furman agrees saying that I couldn’t have formed T cells in the time the graft was aboard.
BTW, quoting Rai:” Losing the graft is bad, but it is not a death sentence” Another quote: “ I have gotten to this point remarkably unscathed” Forman: “The news is good: You did get a complete remission (with the conditioning from transplant)”
Next monitoring, testing And the PTLD question.
Steve Forman wants to treat but not too soon and not too late. Not sure his definition of either point, except that the present is too soon. He plans to follow me with CT scans every 3 months for now and slightly less frequent BMB. That could all change after the next tests in June or July. Uninterested in other markers. Also said would treat like any other CLL, when it is time to treat, which is a bit different.
Castro would wait longer on the CT: 4-6 months. Also wants to track using CLU test. Forman does not trust CLU to make a treatment decision.
Rick Furman says B2M is of no use in my case and my CoH cytogenetics are suspect due to the fact they are stimulated tests and don’t capture the CLL cells. Prefers FISH.
Rick Furman wants a work-up for PTLD including EBV PCR (VCA?), monoclonal gammapathy?, T and B cells counts and ratio, mono-spot, peripheral blood gene rearrangement, CD4/CD8 counts, and others. Would biopsy before FRC or similar treatment, even if nodes continued to grow massively. Still could be PTLD. Dr. Furman thinks my CLL is behaving like a lymphoma.
PTLD didn’t come up with the radiologists, Steve Forman, or Castro. Or BTW with Keating or Tam or the German who did study on CT or any of the ASH crowd.
Rai says there is no tests on the blood that are certain for PTLD and besides this is not behaving like PTLD. No systemic symptoms. Would avoid biopsy, too risky and besides I might treat what I find when it is not needed. Rai: “If the biopsy doesn’t kill you, the treatment might”.
Rai said I should be tested less. CT in 2 years. No BMB needed.
So the big questions: When to treat and how?
Steve Forman is pretty clear, as mentioned above. When ready, he would do FCR, followed by what Rick Furman calls a “midi” transplant: Melphalan-Flu, hopefully from the same donor (which is unusual).
Rick Furman wants to connect with Dr. David Maloney out of the Hutch and get his take on a DLI. He is not big on transplants, but seeing as I have already had one and done well, then let’s get the most out of it. He says he doesn’t know about the whole DLI issue and aplastic anemia that Steve Forman raised.
He would do nothing now or Lenalidomide 5 mg. They are doing a trial using Lenalidomide alternating with Thalidomide. Same action, but different toxicities. Thinks it might help GVL and is great for CLL. (BTW he says never stop the acyclovir due to risk of zoster) Test including biopsy before any treatment except Lenalidomide, which he says is so benign. Better treatments in the next few years, so hold off. Not keen on redo or any transplant.
Castro is still keen on the DLI, just not yet. Says it is never too late for DLI. Not worried about aplastic anemia. Not sure the nodes mean anything. Might consider Bendamustine.
Rai would wait until I was symptomatic. Would not test. Treat when B symptoms only, then treat hard Worried I might develop MDS which is very hard to treat with more therapy or a second transplant
Doesn’t like Lenalidomide. Too new, not sure how to use. Risk of getting T cells involved in tumor flare. Dismissive of any treatment, and especially mentioned Bexar and Zevilin as I am a candidate for both with a clean marrow, and they would wipe out the nodes, whatever they are, but they have risks too. He said" Let someone else worry about the nodes".
Kipps like Rick Furman, is biased against transplant. I haven't seen him since December, but he did not recommend treatment then and did not suggest any specific therapy when the time came. He is not keen on CTs and want to rely on his palpation of my nodes and discussed the radiation risk from CT scans.
All sharp caring doctors.
All sharp caring doctors.
So the way I see it as of today March 25, 2009:
Back to watch and wait. Stop the CT scans every 3 months. Wait for any symptoms.(Maybe recheck in 6-12 months)
I wanted a DLI. Dr Steve Forman said no despite my mixed chimerism as I was in complete remission MRD negative, so why take the risk.
We were watching carefully to see if I started to relapse; then time to pull the trigger on the DLI.
What happened is that the remission lasted longer than the donor cells. By the time I had relapsed and by Dr. Forman’s evaluation, needed a DLI, my donor cells were down to 0% and it was too late (again according to Dr. Forman).
I am not sure of the rationale to continue with the frequent CT scans.
I could miss PTLD or even RT. Possible, but not likely.
My CLL could become more aggressive and harder to get a second complete remission. Recent data suggests that is important for transplant success.
My donor could not be available. The longer I wait, the more likely he won't be in a position to help again. I have only heard the one time from him.
I might have developed co-morbidities that would increase the risk of a second transplant or make it much more risky. I doubt it. I am pretty healthy, but you never know the future. I have sure learned that lesson.
Insurance or government enforced cost savings may make it more difficult to get the second transplant.
Fewer CT scans and the radiation risk.
Possibly several long years of remission.
Better treatments. Experience with Bendamustine and Lenolidamide is growing. Humax CD will be approved pretty soon.
Better transplant protocols. The protocol for transplants are evolving. Even the PICC lines are better that 6 months ago.
Truth is that it likely won’t make that much if any difference when we start treatment as to the outcome of treatment.
It is the last one that really tips my hand. At least for now.
Tuesday, March 24, 2009
Jet Blue has a lovely new terminal next to the beautiful old untouchable and unused TWA terminal. So 60s. So optimistic. So ready to take flight.
Sunday, March 22, 2009
A raw and vegan food tour of NYC
Had a highlight dinner at Pure Food and Wine.
Labels: Vegan raw New York City
Saturday, March 21, 2009
New York, New York
Tuesday, March 17, 2009
Labels: Danny Boy muppets
Part of the price of CLL
Labels: NYC Rai consult gloomy
Keep it simple, stupid
I have arranged to stay one extra night in New York City and will see Dr Rai one day later.
Monday, March 16, 2009
The best laid plans
Sunday, March 15, 2009
"There must be a pony in here somewhere"
How do you laugh when you have received bad news?
Saturday, March 14, 2009
Friday, March 13, 2009
Two less legs to stand on
Labels: Relapse CT scans musts
Tuesday, March 10, 2009
Monday, March 9, 2009
Haircut and timelines
Until this weekend, I hadn't had a haircut in nearly a year. I am lecturing in Manhattan and I thought the iconic absent minded professor look was not the note I wanted to strike. I left a bit of the curl in the bangs. What do think?
Friday, March 6, 2009
Canaries in a Cat Scan
Well, I am not waiting for clarity or good news or even a sense of direction to write again.
My bone marrow biopsy was perfect. Not only am I cancer free down to the last drop, but back to normal. My blood tests are all boring (boring is good in my line of work).
Then the CT scan had to gunk up the works. One of the privileges of being a doc, is that I get to see the images as the radiologist (he like being call rad) studies the shadows made by my insides. Like the shamans reading chicken entrails, but hopefully with a better batting average
At first it looked OK, then there were two suspicious nodes in my gut, but not so definite that a second quick scan might add more info, which showed that it was actually only a knuckle of bowel and all is well, except that with a third look and a second pair of eyes they really are nodes after all. What a roller coaster ride in real time. The biggest node is only 2.2 cm x 1.7 cm. Barely pathological, but clearly growing. Just two 2 stupid nodes are bigger now than on the images from Dec 1 last year. The glands in the armpits, chest, pelvis, groin, and even all the other mesenteric nodes are stable or shrinking.
But the rain's gotta start at some corner. Those two mesenteric nodes are my canaries in a coal mine.
I have left the land of remission and entered the land of relapse. Or at least my toes are through the door. There is still a sliver of a chance that these aren't yellow canaries but actually are red herrings. Pray for me that I am already cured, but my will is being tested.
I am still coming to terms with this all means. Certainly more chapters in my book.
Hopefully the leukemia gurus will have answers, but I think I already know what they will say. Redo the transplant, with a bigger hammer. Bummer. I feel like a bad schoolboy: Brian, you will do this over and over again until you get it right.
Well, at least I have choices and the energy to pursue them. And with a clean marrow, much time to weight my options.
Some good news:
My son Will was juried into the very competitive Laguna Festival of Arts. At 20 he may be the youngest artist ever accepted.
Our two ton sculpture finally made it into our front yard after years in storage. The house feels more grounded. Now yours isn’t the only house with a playful entrance.
Patty and I are tickled about scoring tickets to hear Leonard Cohen in San Diego. He sure delivers his songs on the NPR podcast from New York. Check out http://www.npr.org/templates/story/story.php?storyId=101034642
Monday, March 2, 2009
Letter to a friend at the beginning of February, 2009
I wrote this before I had any recent results. It is minimally edited to protect the recipient's identity.
Captures a moment in time. Seems like prehistoric time.
Seems my pattern is to wait too long to write you in the hopes of sending mail filled with only great news.
No such luck. I have both good and bad results.
Truth be told, my life remains full of hairpin turns, made in the fog, on icy roads, while listening to Leonard Cohen. But I am still on the road.
Let me catch you up.
As you may recall, the hematopoietic stem cell (bone marrow) transplant went off without a hitch on Canada Day, July 1, 2008. Unbelievably, only three weeks later I was sent home. No transfusions. No IV feedings. Except for a few storms of nausea and vomiting, bone deep fatigue, and the loss of my hair, it was scary how easy it was.
Turns out too easy. My dysfunctional “host” immune system that nearly killed me a few times in 2007-2008, somehow managed, despite the onslaught of big time chemo, to fight on well enough to “protect“ me from what was to be my life saving foreign graft. It turns out that with all my vegan ways and meditation and weight training, I was too damn healthy, and rejected the bloody stem cell transplant that was meant to cure me.
Which means I will likely have to do the whole tortuous process again. This time with a bigger hammer (read stronger chemo, read more time crawling on the floor and hugging the toilet). Without a newly installed immune system, the risk of relapse is very high.
Or maybe not. The great news is that on my last tests, I was 100% cancer free. Occasionally those who reject the transplant, also reject the cancer. Like throwing out the baby with the bathwater. I may be cured and just not know it.
A CT scan and bone marrow biopsy later this month will determine if I am heading for the redo, or back to work.
My “host” immunity may have thwarted my plans for a peaceful transition of power with the goal of my new donor’s cells taking up residence in my executive branch and running the show, but it is not yet strong enough for me to return to the world of sick people that was my workplace as a family doctor. I am hoping to return to the office after the flu season if I get my doctors' OK.
In the meantime, to fill my time with meaning, I have been writing. My blog http://bkoffman.blogspot.com has had about 55,000 hits and Purdue University has proposed a study using my site. My readers have encouraged me to make a book from what I have learned and written about. It feels right.
The book will be a narrative non-fiction with the working title: The Difficult Patient.The subtitle for now is: How a Contrarian Attitude Saved My Life and Might Save Yours.
It is an anti-inspirational comic tale about how to demand and get a recut and reshuffle if you don’t like the hand you’ve been dealt. It celebrates brokenness and chides forbearance.
For me writing is demanding. I know dry science writing, but this is a entering a whole new world. In a universe full of agents and publishers, I am arming myself for the upcoming battles. Fighting for one’s art is nice work compared to fighting for one’s life.
Patty and I have not traveled much due to my health, but I am going to NYC in March to lecture, maybe meet some agents, and get some expert opinions on what to do next about my cancer and my book. My mask came off in November.
In April, I am scheduled to do stand up comedy to introduce the keynote speaker at an International Leukemia/Lymphoma Conference in Niagara Falls, Canada.
My son, Will, the artist, is back from four months in Italy and is busy with his fine art and illustration. My son, Ben, is showing his latest film about the orbiting Spitzer infra-red telescope at a local film festival, my daughter, Heather in NYC is writing the bar, and my oldest daughter and son-law, Rachael and Nick, who you met, are traveling around the world on a scholarship studying the architecture of American military bases and how they effect the surrounding communities. Very sweet. They’re in Hawaii this week.
I will send you a shorter note when I get my CT and biopsy results and map out my next move.
Be well. Stay in touch.