More good news in the marrow and the worst news on the ice

The Kings lost their 3rd game in OT, and are out of the playoffs again in the 1st round. They need a sniper, someone who can score. So sad.

I need a sniper too, something that can pick off my CLL clones and leave the rest of my body alone.

I may have a fair facsimile in my idiosyncratic mix of ciclosporin (CSP) and rituximab (R).

Dr. Kipps was very very very happy with my bone marrow report. His and my fears that the R was doing a good cosmetic job of cleaning up my blood and shrinking the nodes you could feel, while the marrow was loading up with cancer was not the case. In fact my marrow had less CLL than 3 months ago 3% by flow, and < 5% seen with special stains. The histology (the slide itself) looked normal to the hematopathologist.

That means no nodules of CLL like cells seen. And no excess blasts or increased marrow activity that might herald the dreaded MDS (See my friend's CarePage as he details his life saving transplant at MDACC for his CLL/MDS combo). (Update 8/2013: He is now long post transplant, disease-free, and doing great with a long cancer free life ahead of him.)

The cells lines for read and white and platelets were all just fine. The marrow's cellularity was a bit low, which Kipps think is from all the therapy I have had.

I guess I don't think of myself as having had that much therapy, if you don't count my transplant. (That's a joke.)

Anyway he is not worried and actually relieved that the marrow wasn't hypercellular like it usually is in MDS.

Also all my FISH studies for the common genetic irregularities associated with CLL and MDS were negative.

All this is old news.

The new news is that Kipps feel the ciclosporin is a big part of my success. He actually tried to get a study done on its efficacy in CLL. Apparently it doesn't help everyone and it is a generic drug, so funding would be tough.

But for me it works.

I think of it as the brakes on my ITP, but Kipps is reminding me of its antileukemic especially in combination with R.

The only bad news is my nodes have groin a bit again. All this has happened since I reduced the CSP.

Which also suggests it helps my CLL

So if I can find a dose that doesn't mess with my kidneys and still controls the CLL and the ITP, I may have the 1st piece of a winning strategy.

The second is also atypical: Maintenance Rituximab

I am going to wait for MR (more on that in the next post) before adding the R it has only been 4 months since my last dose, so my slowly growing nodes could be from the R starting to lose gas or from the reduced dose of the CSP or from both or neither.

I don't want my gut nodes to get gigantic and hard to treat, so I am thinking a course of "vitamin R" in June might be just what the doctor ordered. Kipps wouldn't say go for it, but he didn't say no either. Which is a lot for him considering this R+CSP is all unproven territory for a man who has built a world class reputation for elegantly clinical designed trials.

So all in all good news.

Watch the nodes with self examines in the shower, and a MR soon. BMB every 6-12 months.

Titrate to find the lowest dose of CSP that keeps things under control and add in some R every 6 months.

And the LA Kings sign a free agent snipe in July.

We have a plan.

Good news in the blood, bad news on the ice

My labs remain excellent.

CBC shows a mild macrocytic anemia that is very stable and my platelets were over 400,000 on my reduced dose of ciclosporin. WBC is normal and ALC is still a touch low, which I figure is still the residual effect of rituximab from 6 months ago.

My blood chemistries including the measures of kidney function and the test for the risk of gout (all known nasty side effect of ciclosporin), are all nice and low. Even my blood pressure is good.

So the plan is reduce the ciclosporin once again, then try to stretch out the IVIg. I see Dr. Kipps in a few days to go over the bone marrow biopsy and map out my plan.

The new MR machine to image my gut nodes won't be online in the hospital until the end of May, so I am waiting for that critical piece of data.

But is all good news.

Not so for my home team.

On the ice it is a different story. The LA Kings have been scored on 6 times in each of the last two games, and even allowed a historic collapse blowing a 4 goal lead in game 3. And this happening to a team build around a strong defense. It has been painful to watch the games at Staples Center. It is tough to be a Kings fan, especially in Orange County, home of the Ducks who have won a Cup.

Down 3-1 in a 4 game Stanley Cup playoff series, it is do or die tonight.

I will be at the fun Redondo Beach Cafe where hockey and Montreal style food is king to watch the game on TV from San Jose with my son Ben and some friends.

I am still routing for a rematch of the 93 finals between my two favorite teams, Montreal and LA, this time with a different outcome.

Go Kings Go! Go Kings Go! Go Kings Go!

Passover

Passover is my favorite holiday - about freedom, responsibility, risk taking, change, standing up to authority, and trusting your ability with a lot of heavenly help to do what seems to be impossible.

Do you believe in miracles?

Artist Showcase

This should be a fun show, full or exciting art by a great collection of artists including my sons, Ben and Will, and amazing photos by my friend Hoiyin.

Patty and I will be there. Hope you can join us.

https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB-0ZnFRW1EA-GTlC6_JKdOha8ToQWHjtm1nADpHQ4OMhvyLXDk2bbwM_YWZeDf69mOj4xMHCYQKN8SHfEQbvxMSeBDZ1k56LnEgU-CUL3sxc0jfpD97RE3JhmEyDPEdx67yZf5QysJmM/

Weird Tests: Low ciclosporin and Lowish Copper

A couple of my weirder tests have come back. They take longer to do, as they are not part of the normal blood panels.

My results showed that my reduced intake of ciclosporin has resulted in lower blood levels.

DUH

Rai says he is not concerned with ciclosporin blood levels. Forman says as long as the platelets hold up, not to worry. I can continue to reduce my dose all the way down from 150 twice a day to 50 mg twice a day, but not lower. And a full month pause between each step down with monitoring my lab. The lower levels help reduce my blood pressure and take the stain off my kidneys. Also less climb in uric acid and less immune suppression. All good stuff.

My copper level is at the very low end of normal. That is because I take zinc daily, which is supposed to help with cancer, but can drastically lower copper in the blood. Low copper is an exceedingly rare cause of the kind of anemia I have had, so I checked.

It's low, but not the kind of drastic low levels needed to cause me any problem.

So my mild anemia is probably from my beaten up marrow underproducing. More on that later.

The rest of my blood counts and chemistries are pretty much normal so I am a happy guy.

Right now I am in my NOT WORRY MODE.

A thousand wishes

A recent post by a friend on Facebook;

Most of us have a thousand wishes. To be thinner, to be taller, have more money, have a cool car, a day off, a new phone, to date the person of your dreams. A cancer patient only has one wish, to kick cancer's ass. I know that 97% of you won't post this as your status, but my friends will be the 3% that do. In honour of someone who died, or is fighting cancer, or even had cancer, post this for at least 1 day.

My response:

I can only speak for myself, not for all cancer patients. Although I wish more than anything to be free of cancer, I am still greedy for 1000s more wishes. It is what I do with that extra time, what wishes I make come true that will define my legacy, not whether I die with or without cancer.

Outsourcing worry

Chaya Venkat is a great gift to anyone with CLL or for the matter, any catastrophic illness.

Her fine article on how to handle the CLL diagnosis could easily be applied with a little tweaking to any major health.

I suggest you first read her overview of the subjest at

http://updates.clltopics.org/3232-out-sourcing-cll

Then read my comment below:

Another great article.

The only thing I might add is that not only doesn’t one specific outsourcing strategy work for everyone, one strategy may not work for anyone all the time,

I have needed many tactics to get me through this roller coaster ride.

Mostly, I tend to be deeply, some say too deeply, involved in the minutia of my disease management, seeking multiple expert opinions when a big decision is needed from the team of CLL gurus that have helped me so much over the last 5 years. Yet when it is crunch time, I make most of the calls myself. As many know, I am a MD, but not a hematologist, but a family doc. They say the doctor who treats himself has a fool for a patient. I argue who has more skin in the game than me. Can I separate out my fears and make a cold calculated decision? Not always, but I trust myself and my research and my gut more than that of any one expert.

But there are times, such as the first few weeks post transplant that I was way too sick to decide chocolate or vanilla, let alone what to do next, and I handed control over to my docs, with the eyes of my wife and a dear friend and very sharp doc who beat Hogkin’s Disease watching closely.

Other times, I chose to coast. Enough with CLL. With a deep enough remission, I think it is crazy not to live for a while in denial and have the best of times, worry free. That is never easy, but family and travel and serving others are a big help for living in the moment.

And finally, there is there is the outsourcing to the world of the fantastic and the unlikely, but possible. I do things that my intellectual side say are ineffective, but give me the important sense of doing something positive- eating organic raw vegan food, drinking tons of green tea (the real stuff from Japan), taking vitamin D3, regular exercise, and Budwig supplements. It is lovely to think I am making a difference, and it is impossible to prove that I am not. Besides, as you said, I have CLL, I don’t need CAD or osteoporosis complicating therapy.

There is a high price for being the constant master of your destiny- worries and regrets, but for me most of the time the price of outsourcing my future to anyone else is much higher.

Thanks for the chance to reflect on this

Stay strong

Brian Koffman

PS There is a bone marrow donor drive by BE THE MATCH at the Kings game tonight. Please sign up.

Quack, quack, quack

The latest skin biopsy report with all the immunohistology shows all my dense lymphocytes were T cells, no B cells. I saw that one coming. Great news to confirm my clinical impression

It is NOT neoplastic or related to CLL in any way.

And it is almost healed.

It was a bug bite.

Still the over zealous pathologist suggests if there is any lingering concern we still could do more tests for T cell lymphoma. I understand the fear of not missing anything, but as the old saying that everyone hears a million times in medical school goes:

If it quacks like a duck, if it walks like a duck, if it looks like a duck, it is probably a duck.

I had a bug bite.

One comment that I took to heart is that this all could have been avoided if I never saw the dermatologist. After all, Thoreau famously said:

Medicine is the art of amusing the patient while nature takes its course.

Waiting was certainly the right decision in hindsight, and I think I may remain undecided longer the next time something unclear appears. Knowing when to swing the bat and when to watch the pitch is never easy, and I sometimes find myself moving too soon or too late. I will definitely ponder what are the lessons from this wild pitch so that I can continue to improve my batting average. What could I have analyzed differently and reached a different decision?

One thing for sure, I learnt a lot about leukemia in this skin with this unwelcome and unneeded, but not too unpleasant diversion. Moreover, due to the sage advice from a good friend and sharp MD, I really didn't sweat this one too much. It never felt right to worry and consider sinister diagnoses when it all seemed so innocent.

I had a bug bite.

No News

No news is no news

No bone marrow report. The basic pathology really should be back my now. I hate waiting and my imagination can go wild. They are protecting me from terrible news by paranoia whispers. I won't listen. Usually it is just that the Sheila, Dr Kipps' nurse just gets too busy to send it along.

The FISH and other flow cytometry are a week or two away for sure.

No immunohistology and cytogenetics on my skin biopsy either which is healing very nicely. This could be a week or more of waiting. It is reference lab stuff.

No nothing.

Maybe tomorrow?

Friends-In-Law

This sweet article came to me via Zocolo Public Square.

While I abhor the idea of the government using taxes to incentivize our social behavior and the suggestions made seem impractical and too easily gamed by the unscrupulous and tax savvy, I am moved Mr Leib's nailing the reality of the importance of friends in the life of anyone of us who has a life changing illness.

The friendly support should be encouraged, but I not sure how.

It must happen because as I have said a million time: WE ARE ALL IN THIS TOGETHER.

What do you think?

FRIENDS-IN-LAW

by Ethan J. Leib
Our cultural zeitgeist clearly pays homage to friendship. Some of the most successful TV shows are about friendship: Seinfeld, Friends, and How I Met Your Mother are obvious ones, but House and Grey’s Anatomy are probably more about friendship than they are about hospitals. And one of last year’s most acclaimed movies, The Social Network, is dramatic and affecting because of its portrayal of a friendship betrayed; it isn’t the fake friendships on Facebook that make that movie poignant. Yet with all the attention our culture lavishes on friendships – and as important as they are to our overall well-being – we often leave friendship to fend for itself.
Our societal norms – as reflected in our laws and public policy – focus a great deal of attention on our familial relations and our workplace relations. But friends simply don’t register – these are human relations beyond the reach of the state.
As they should be, you might think. Nothing seems more off limits in a liberal society than telling people with whom they ought to spend their free time. And yet, it is hard not to notice that the liberal state routinely gives people many incentives to sort themselves into families, rather than into groups of friends. From our criminal law to our tax laws, we find strategies to protect and strengthen familial bonds.
There is nothing that should prevent our liberal state, then, from encouraging and nurturing friendships as a matter of public policy. But what would such a strategy look like?
For one, we could imagine employment laws that enabled us to take care of sick friends, not just family members. As it stands, the Family and Medical Leave Act requires employers to give us time off to take care of sick kin. Yet, study after study tell us that non-kin support is actually more curative and helps us live longer. The law could help the institution of friendship by allowing us to make claims against work and the state – giving us the time to perform acts of friendship.
We could also envision a system of taxes that didn’t only give us deductions for adding to the country’s population or buying homes we might not really be able to afford. It seems right that little tax incentives to give charity make the world a better place. But some nudges to incentivize us to drive our friends back from their next colonoscopy – and some small deductions for celebrating our friends’ rites of passage (how about making travel to weddings deductible, much like unreimbursed work travel is?) seem perfectly unobtrusive ways to reinforce the value of friendship in society.
Unfortunately, when the government fails to respect and think about friendship, we have a tendency to make bad decisions. When governments give people vouchers to move out of their neighborhoods to higher income communities – hoping that the change of scenery will give people a boost out of a life of reproduced poverty – we disrupt friendship networks and sources of support. It is thus no wonder that these programs actually can leave the poor families “moving up” feeling alienated. When we insist that hospitals consult with family before friends to help make end-of-life decisions for the incapacitated, we are likely following family wishes rather than respecting the autonomy of the individual. Friends often know us better – so shouldn’t the law, as a default, defer more to our “BFF” to make some of these calls on our behalf?
Sociologists have sounded alarms recently about the decline of friendship. Notwithstanding our elaborate technologies that enable us to be in touch more often and notwithstanding our promiscuous “friending” practices, it may be that we are often failing to develop intimate bonds outside the family. It is unrealistic to think that some quick tinkering with our public policies will restructure our patterns of affinity and lead to greater social cohesion. But it is dangerous for our laws only to focus on the private ordering within the family and the economy and to ignore our chosen bonds that provide us with so much support, fulfillment, and community.
Our new Congress won’t be able to agree on much; but promoting friendship seems to be a nonpartisan value. They may not be friends with each other but they all value friendship. In these times of economic stress, it is worth remembering that friends can’t always take care of themselves – and that friendship itself may not be able to take care of itself either.
Ethan J. Leib is a Professor of Law at UC-Hastings and a Visiting Professor of Law at Fordham Law School. He is the author of Friend v. Friend: The Transformation of Friendship – and What the Law Has To Do With It (Oxford 2011).

Recurrent CLL in the skin versus a bug bite

The second deeper analysis of my skin biopsy was read, some would say, grossly over read, as consistent with recurrence CLL. Seems like the biopsy was filled with dense infiltrates of slight small atypical lymphocytes. Cancerous B cells perhaps? The third step, now pending, is cytogenetics to look for the dreaded clonality of my B lymphocytes.

Sounds grim.

Before measuring myself for a coffin as the prognosis for leukemia cutis can be pretty bleak, I took a step back and had a friend, a very smart dermatopathologist review the report and he thinks is a classic arthropod bite, completely a benign process, and even shows what a good immune system I have in sending all those lymphocytes to the site of the insult. He is pissed off big time at the overreach of the rare and scary CLL skin diagnosis and the unwillingness to consider a far more common and obvious diagnosis, a bug bite.

Even the fear triggering doctors says it likely that the particular cells I recruit to fight off an insult to my skin simply reflect my particular CLL lymphocyte population. That there is no actual malignant tumor, no leukemia of the skin. Ho. Hum.

I don't buy even that. My absolute lymphocyte count is only 0.7, below normal, and I bet most of that is T cells after all the rituximab last year cleaned out my B cells. I bet my cytogenetics in the skin will also show T cells, no B clones.

If you closed your eyes on some of the turns and spins during this roller coaster ride and are now lost, let me summarize.

I believe this whole CLL in the skin thing is an over reaction, because everyone is so scared to miss a cancer on a doctor who already has cancer. You never get sued for over diagnosing. You just worry the patient and run up big bills.

And besides, my boo boo is healing up with bactroban ointment. Almost gone. Hardly cancer like behavior.

Forman isn't worried. I too refuse to worry about this one.

It wouldn't be CLL if there was agreement between any two of my doctors.

Bone marrow report next week. I can hardly wait.

Lab reports: So far, so good

Yesterday, I got some results over the ether and it was all pretty good. For those not concerned with the details, you can stop reading here and feel relieved about having one less friend to fret about this week. I am stable and in no imminent danger.

For those with a nose for details, here goes.

Blood count was steady with slight but insignificant improvement in my anemia, up from 12.7 to 13.5, but a different lab. It was clearly not worse, but it is still a bit low.

My platelets were a sky high 451,000 which is a very nice number, especially since I have dropped my cyclosporin down to 75 mg twice a day to help with blood pressure, renal, and muscular side effects.

Blood pressure is back to normal

White count and absolute lymphs are holding in the normal or low range- very good news. This is likely residual effects of the rituximab from 6 months back. That stuff hangs around along time, especially if your lymphocyte count is not too high.

My retics were low and my Coombs (direct) was negative, so I am not destroying my own red cells like I have done with my platelets. That (AIHA) was a worry, but no longer.

LDH and blood chemistries, except for a few blips (high potassium) which I am dismissing as lab error were all boring too. Kidneys and liver remain undisturbed by the tumult in my blood.

My immune globulins tell a story of disease and treatment. My IGG is very high which is the direct result and a thank you note to all the donors who contribute to my life saving infusions of IVIG, and my IGA and IGM levels are very very low, reminding me that my cancer is of the immune system. I don't make many antibodies, and am thus dependent on the kindness of strangers in the form of blood product donations.

The tumor marker B2M was 2.3, down from 2.9 but that is essentially unchanged. It tells me a I have leukemia, but it is not taking off to the races.

All in all, boring stuff, which I love.

My skin biopsy from my scalp has only the preliminary report showing no cancer, only severe inflammation. That's what I expected, but I have no idea the source of the inflammation-trauma? a insect bite? infection? Again, I refuse to worry, as it is getting better.

So I am still waiting for the bone marrow report. The simple under the microscope pathology should be back soon, but the cytogenetics takes weeks.

I will soon schedule imaging of my nodes with MR (not CT) in May. More on that in a later post.

All in all, so far, so good.

One last comment. I will be making a concerted effort to post more often to these pages. As my friend Dr Hambln does in his blog, which was focused on CLL, but now covers all that is in his purview, my posts may touch on broader topics than leukemia and transplants. Rest assured that I will not be quoting the gospel like the good doctor Dr. H. That is his passion and strength, not mine.

Hockey and process theology are more likely to pop up here. They already have.