Saturday, February 27, 2010

Last night in Israel

Our last touch of Israel is Eilat on the Red Sea (a typo from the distant past converted the beautiful deep blue of the Sea of Reed to the crimson finger of water that does glow that color at sunset).

It is Purim, the Jewish Halloween, and even this secular tourist town is resplendent with bejeweled Queen Esters from 2 years old to young adult living out the fantasy of inverting the course of history with only wit and beauty.

Later tonight, it is our time to cross Sinai to Cairo. I will miss Israel.

My meeting with Professor Aaron Polliack in Herzliya Pituah yesterday about my CLL was very worthwhile, and I promise to post on what is relevant for me and for others. He is enthusiastic about some pretty exciting CLL research being done here. Let me just foreshadow by saying that things look good.

But I am staying away from the Internet for the most part, so more later


Monday, February 22, 2010

Israel just keeps getting better

Exhausted and overjoyed in Israel. Healing mud baths and floating at the Dead Sea. Cable cars to the top of the fortress Masada and a visit to the world's oldest synagogue.

Spectacular tour under the what is the left in the 8th wonder of the ancient world, a part of the support for the second Temple, namely the Western Wall, and finally the best, a quiet day spent with my donor in his small town, Bet Shemesh. I saw his Yeshiva where he studies in a method hundreds of years old, and had a wonderful vegan lunch at his apartment with our wives.

I am so lucky to have such a wonderful person as my donor.

Much too tired to write more, but aching to share stories and maybe some wisdom I have learned on the way

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Friday, February 19, 2010

Shabbos Dinner

What an amazing evening at the home of my donor's parents. 11 of the 12 children were at the table for Sabbath dinner, with the older kids taking care of the younger ones. Not tranquil or quiet, but full of love and wisdom.

Wonderful home cooked meal with even the challah being vegan. I can't imagine the work of preparing food for 12 people every day.

The Torah portion was on making a donation. Yaakov, my 24 year old donor, did a wonderful and pertinent drash (interpretation) on the spirit behind giving.

After dinner we walked for miles back to our hotel through car free streets- no-one drives which means no taxis) in the orthodox neighborhoods on Shabbos. Hassids in their fur hats and long black or gold striped coats were an organic part of the active street life. Multiple generations dressed in their Sabbath finery talking in the middle of what on any other day would be a traffic filled road.

Clearly family life is good here. Social and spiritual concerns seem pre-eminent, at least on Saturdays.

No pictures taken. It's Sabbath

I am so blessed to have such a mench as my donor.

Said prayers for you all at the Wall earlier today.

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Thursday, February 18, 2010

The Western Wall

Yaakov, Nomee, and me at the Western Wall

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Wednesday, February 17, 2010

Airport Blues

In Vienna for over 7 hours, waiting for our plane to Tel Aviv. We will have to clear some combo of security/customs/passport control for a third time, and we haven't even got to Ben Gurion Airport where I understand they really give you the once over. And I thought the EU enjoy open borders, the friendly exchange of citizens to form a greater union, sans frontiers.

I better postpone my next CT scan-I have already had my annual dose of radiation.

Really, we are just changing planes, and yet we need to go through all these searches. Seems silly, but I guess it good for job creation. Security and government work are two of the few job growth industries, and this is both.

We caught an earlier flight out of the drab colorless efficiency of Frankfurt so we could spend our wait time in cheerier Vienna with Mozart candies and Klimt fashions and free Internet.

Jet lag is starting to swamp me, so I will quit while still coherent. Hard to be literate when you've been on the go for about 20 hours across 9 time zones. Hard to complain when sitting in such a pleasant lounge.

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Tuesday, February 16, 2010

Bone marrow biopsy report

Last CLL post for awhile. Biopsy was 3.55% donor DNA in the bone marrow. The T cells were 0% donor. What does that mean?

No other surprises.

Confirmed 5-10% CLL in the biopsy.

FISH studies pending.

On the whole good news.


Monday, February 15, 2010

Platelets good enough for a road trip

I am very happy to report that my platelets today, a full 17 days after my last IVIG, were a very healthy 216,000, down from 308,000 a week earlier.

This means that surely I needs the IVIG, or the fall would continue. But how low would it go? Who knows? I don't plan to find out.

But more importantly, it is pretty safe for me to travel to Israel and I should be safe for at least a few weeks from a platelet point of view. To add a margin of safety, I am getting a higher dose of IVIG to safeguard my journey.

The rest of the CBC was WNL though my HGB dropped a bit from 14.6 to 13.7. I won't worry about that unless it looks like it's the start of a trend.

The IVIG seems to be doing a better job post transplant and post splenectomy. My platelets have been much more responsive to the protein coating from the immunoglobulins since my scavenging spleen was removed more than a year before my transplant.

I will gingerly try to stretch out the infusions to 3 weeks when I return. I could live with that non remitting life style for a long long time. And I mean that literally.

We leave for Israel tomorrow afternoon. Patty and I are so excited. We are having Sabbath dinner with my donor and his 11 younger siblings.

I hope to see the details of my BMB before I take off and will share the news here.

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I will be put up some words when I get my final biopsy report and tomorrow's lab before my IVIG, but I am not sure how much more posting I will be doing for awhile. All the hotels have internet, but is that how I want to spend my time on my travels? Don't think so.

More likely to put something up on Facebook- brief and less literary.

Getting into my stressed out before I leave, have I brought every possible contingencies for my health with me and remembered all the important papers mode of craziness

And my computer is being bad again, not charging properly.

Better get some sleep. IVIG and packing tomorrow.

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Saturday, February 13, 2010

Very latest news and it's good

The preliminary biopsy report shows about 5-10% involvement, with both a nodular and diffuse pattern. The chimerism was basically "host" both in the total and the T cell. This is good news. A miraculous disappearance of all the cancer would have been better, but I'll take this in a heartbeat. The CLL is not gone, but it is not taking off either. It's moving nice and slow, so so can I. Final results on Monday.

Not sure what "basically host" means and what the implications are in terms of using the same donor or finding a new one for a second transplant.

But there is no rush now to figure this out.

Either way, looks like the CLL is not forcing my hand. Except for the ITP, I wouldn't have much to worry about. If the ITP continues to stay controlled with only IVIG and clean living, I am on cruise control. Sweet.

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This is verbatim from my friend Arlene on the survey. She is right, of course.

The words used for each choice probably has a bearing on the outcome.

The "gentle treatment" answer was somewhat nuanced and contained a reasonable medical strategy whereas the "aggressive treatment" answer was all metaphor and did not outline a medical reason to proceed.

The gentle treatment answer appears to leave more options open. The thought is that if the Gandhi approach starts to look like it's not going to work, one can then take the other approach, blow war trumpets, load the ammunition, and strike with deadly force.

No results yet on bone marrow biopsy, though Dr. Forman thought they might be back as soon as Thursday.

I always have the irrational worry that the delay means the news is not good. Crazy thinking. I will do better.

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Wednesday, February 10, 2010

And the winner is...

The poll is only get one or two at the most, tallies a day, so I am going to close it this weekend. If you still want to vote, please use the link in one of my recent posts.

The numbers are small, but the margin is clear.

1. What type of approach do you favor for treating a CLL like mine? (There is no in between answer)

Gentle and slow with protecting immune function, limiting the mutagenic exposure, and avoiding collateral damage especially to the marrow as priorities. 78% or 51 votes

Damn the torpedoes, full speed ahead. We are dealing with a natural born killer, and we need to strike before stricken. 22% or 14 votes

I hope it gave you some pause as you considered how you might handle a similar situation.

I was surprised by the strength of the gentle vote.


Tuesday, February 9, 2010

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.


Monday, February 8, 2010

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.

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Sunday, February 7, 2010

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.

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Saturday, February 6, 2010

The survey: Early results


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.


Friday, February 5, 2010

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.


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.


Monday, February 1, 2010

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.

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