Not so bad

Another day, another bone marrow biopsy. I asked Dr. Forman, while doing the procedure, if I should have a DEXA test (a scan to check my bone density which can be adversely affected by a transplant and steroids and a bunch of other insults that are part of my past). He said he was doing one now.

What we meant was the bone was awful tough to penetrate with the needles for the biopsy and aspiration. I guess that's good.

That said while it was a pretty yucchy experience, especially that sucky feeling when he aspirated the marrow, it was not that bad. First he numbed up my back side pretty good, and the pain was minimal. Just some tenderness now.

Results in a few days. Last time 2.8%, this time.....

Here's hoping my CLL has been dawdling since my marrow was last assayed 6 months ago.

Good news

Platelets were a mighty 308,000 10 days pst IVIG. I was worried about the 100,000 slip last week, so I got tested 1 week early. This means the trip to Israel is almost certainly a go. I will have a CBC and IVIG the day before I leave, but now I am sure those results will be good enough to hop on a plane to the middle east.

The Year of the Flood

I am always a little sad and lost when I finish a great book, a book that has swept me away to a different world. This time it was to the dystopic future of Margaret Atwood's The Year of the Flood, a companion text to Oryx and Crake. My oldest daughter lent me this Canadian writer's latest and gave it a hearty thumbs up. Thank you.

Like a vacation or an insight, a finely crafted piece of writing can change how you look at everything.

Atwood's writing is such a gift. and even though the pictures she painted were dank and squalid, it was hard to leave, and the taint of the story stays with me.

If you do decide to pick up the book, read Oryx and Crake first.

On another topic all together, the latest CLICK Here for SURVEY results are now 3 to 1 in favor of the slow gentle path. Still not too late to vote.

The survey: Early results

Relax.

Trust me that I am not going to make a critical medical decision by a show of hands. Maybe what movie to see or book to buy I would leave to the collective mind, but nothing that involves flesh and blood.

I will have more to say about this later, but so far the early polling is favoring the slow and gentle approach by 2 to 1 margin.

Here's the link for those who had some trouble finding it in the last post: CLICK HERE FOR SURVEY

I am new to this surveymonkey stuff, but it seems pretty darn simple.

Aggressive versus gentle Survey

I am not sure how many of you read all the comments on my posts. There is often lively debate. For those not in the habit of clicking the comment link at the bottom of each post, I have pulled these two dueling views of how to handle CLL.

Where do you come down? Not in general. Not for any case, but for my case. As Levinas taught about morality, and any good hematologist will confide, all cases are unique and all responses to be fully realized must be tailored.

Do you prefer the gentle "buy some time" approach of the last commentator trying to avoid unforeseen consequences and collateral damage, but risking mounting an effete response or worse offering appeasement of a malicious enemy?

Others have been more extreme, urging me to find ways to co-exist with my malignant clone. Friends have urged me find a place of harmony. Believe me I am on my way, if only such a place existed.

Are you more prone to the blunt assessment of mkali that you must fight fire with fire? Kill or be killed. Do you believe, that at the end of the day, either I get rid or the CLL or it gets rid of me?

Read their comments below and then please take my survey . Remember I am not talking about some sweet "good cancer" CLL in some octogenarian. I am talking about me, a hungry for life 58 year old with what in the past has been a pretty nasty CLL associated with scary low platelets, though since the transplant, it has been a kinder gentler CLL.

Let me also reassure you that your votes will of course not determine my decision, so vote with no need to feel responsible for me, but only for yourself. That is really the purpose, to help you reveal and understand your own tendencies, and also to see how the community splits up. Even if you are not a CLLer, force yourself to vote. You may learn something about yourself.

Hi Brian,

Doctors like Kipps and Hamblin are big advocates of palliative care (like chloromobucil and vaccine therapy), it is suitable for patients > 70 years so these treatments could buy them 6 to 7 years but for younger patients who have 20 to 25 years can not use diverse toxic chemotherapies and after 6 to 7 years they will not be in a position to sustain the rigours of transplant with many comorbidities plus they will not get CR with any therapy resulting in transplant relapse in future.

thanks
mkali

February 2, 2010 6:37 PM

For gosh sakes, man! Dr. Kipps is one of the top CLL experts in the world! He has forgotten more about CLL than you or I (combined) will every know!

He is getting excellent results using HDMP+R, R&R, and other treatments.

I've been following your blog since you started it. We share the 'wonderful' 11q del; I developed mine over time.

I questioned your decision to go for the 'big guns' right off the bat, but never said anything to you, since none of us needs to be questioned about treatment decisions already made.

I personally would not get a transplant unless I had no other option. Even then, I might not. I've heard too many horror stories.

You should consider that 'heavy' treatment that mkali seems to prefer can further damage your immune system, increase the risk of secondary malignancies, and put you into a place from which you will have a hard time recovering.

It is my opinion (obviously) that you should listen to Dr. Kipps. No disrespect to your doctor, but how many papers has he published on CLL?

As far as mkali stating that Dr. Kipps is 'big on palliative care', he or she is full of it. What makes him/her an expert?

Dr. Kipps is a conservative treater, and not like the folks at MD Anderson, who will give you FCR, regardless of the fact that it will give 10% of the people MDS and another 10% of the people Richter's transformation. They never mention that.

I think Dr. Kipps wants to keep you alive until better treatments come down the pike.

I'd listen to Kipps.

But, it's up to you.

Why can't we all get along?

When I consulted the concerned and compassionate Dr. Kipps, he used all his wisdom to urge me not to have a second transplant. My wife says he was practically begging me not to go down a road he sees as fraught with unneeded and unpredictable dangers.

Will my bone marrow bounce back as quickly a second time, especially as the experienced Dr. Forman wants to hit me harder this time? Or as the clever Dr. Miklos does in Stanford, do I want to radiate nodes whose DNA is already scrambled?

Here's a scary one.

Are we sure that the reason I rejected the graft was all host issues? Are we certain it was my lack of FRC induction and lack of ATG in the conditioning protocol? Do we know that I rejected the graft because my T cells weren't soften up enough? Dr. Miklos has raised the clarion call that I would be much better served by a different donor in a round two. Dr. Kipps is on his side. He bets that I have antibodies against my first donor. There is no test for this.

This is an irreconcilable with Dr. Forman. There is no grey zone. The point may be moot. If I have a second 12 out of 12 donor match, why not go for it, but if not, and I choose the transplant route, the kind and generous Yaakov, my Israeli donor, is my only hope. Would Dr. Forman, who knows me and my HLA the best, even bother to redo the search? My second choice donor two years ago was not a good match.

Help. No way to get an answer on this one.

Should I rush into such a murky mess? Methinks not.

Fortunately, my CLL is behaving in a gentlemanly fashion these days, not being too pushy or poking into places that it is not welcome. No change in my nodes for 3 months, and a stable CBC for the most part since August. As long as I get my IVIG every fortnight that is.

Even my ITP is being less spooky. The biweekly infusions are protecting my platelets and Kipps argues that I have many options yet short of chemo, let alone a transplant. Prednisone, Danazol, Rituximab, cyclosporine A, and the new platelets growth factors mimetics. If those don't work, hit the CLL .

The bone marrow biopsy next week may be important after all. If my disease has progressed from 2.8% to say 50%, the writing is on the wall, in blood. The decision is not if, but how and and how soon to do the transplant.

If my biopsy shows, say 5% monoclonal B cell monsters, I can dally, smell the roses, and wait for the CLL geniuses to get better at keeping me alive whichever path I take.

Quick numbers

Way too tired to go deep or long today, but there is much I need to share with you soon.

But first let's do the numbers.

Since starting this blog about a month before my transplant on July 1, 2008, I was had about 108,000 visits, or about a 175 a day, It's not my friend Chaya's wonderful resource for anyone with CLL, CLLtopics, but it is telling a story that some of you want to read. It is a blessing for me to be able to help in any small way. Even in the new decade with my sparse updates and the rare dramas, well over a 1000 of you drop in every week.

From every continent except Antarctica.

If you haven't checked in and let me know who you are, drop me an email at bkoffmanMD@gmail.com

I would love to hear from you.

Thank you all.

Second set of numbers.

800,000 visitors to Machu Picchu every year. Over 2000 tourists stranded by the heaviest rains in 15 years wiping out the only way, PeruRail.

My son, Ben and his friend Yasmin are safe in Cusco, but their dream of seeing the sun rise over MP is on hold for now. Earliest estimate of repairs are 2 weeks.

As a dad, I just happy they are safe.

Finally my platelet counts

1-13-10 290,000 before my IVIG

1-26-10 256,000

1-29-10 197,000 before my IVIG and 16 days since the prior dose

So it looks like I need the IVIG but a 13 day visit to Israel is within my safety limits with infusions 15 days apart framing the miracle journey.

Good that I can be focussing on what's outside my blood stream.

It is more than good to be counting the thrills and joys and human contacts, and not just the complete blood count.