More Good News- Update on My Lab, CT Scans, and General CLL (chronic lymphocytic leukemia) Status

My blog has veered far away from the simple telling of my story to more telling of our stories with much B roll.

I am making plans to maybe bifurcate its content in the future, but for now it will continue its happy and diverse life as a personal health blog, a home for research news and video and audio interviews with leading researchers, and a whole bunch of personal analysis and advocacy on what it all means.

I am back from Ohio State where I am still seeing the research team every 3 months and getting CT scans every six months for my clinical trial on ibrutinib. I have riffed on this being too much radiation before in this prior post that includes links to some of the basic research of radiation exposure and its risks, but Dr. Byrd argues that the few relapses he sees on ibrutinib show up first in the nodes, so he wants to monitor me with the scans.

True enough. When I relapsed post failed hematopoeitic stem cell transplant in 2008, the nodes were my canary in the coal mine showing slight growth months before my lymphocyte counts started to move up and my platelets down.

So twice a year CTs are still the plot line for my clinical trial at OSU.

Since diagnosed in 2005, I have probably had about two dozen CT scans!

Add to that the equivalent of the 20 chest X-rays annually I get from flying over 100,000 miles a year, and my risk of secondary cancer is significant. This link with a NASA produced video tells the air travel part of the story.

If you really want to worry, take a look at this article from Medscape on CT scans in NHL.

But this post is not about the danger of CT scans, but about what my last one showed and happily that was stable disease.

I still have enlarged lymph nodes but they have changed little since October of 2012, or for the last 20 of my total of 25 plus months on ibrutinib. My largest sentinel gut node near my liver was about 10 cm at its peak, 7.3 x 3.3 cm just before starting ibrutinib, 4.4 x 0.7 cm in October, 2012 after about 6 months on the medication, then it shrunk to its shortest 3.9 x 0.7 three months later and when last measured on June 30, 2014 was 4.4 x 0.4 which actually represents its lowest volume. It has been fluctuating and when you account for the difficulty of measuring mobile objects in the mesentery and near the liver, is mostly stable since its dramatic shrinking in the first 6 months of therapy. Its a long hot dog shaped node instead of the more common bean shape. The same early dramatic shrinking in the first six months and slight ups and downs since has been the tale for my other smaller sentinel nodes on the scans.

So I have pretty stable disease.

What does this mean to still have enlarged nodes and a touch of CLL in my blood (see this prior post from last April on my flow cytometry report to understand more about my numbers and disease burden)?

The CLL does not proliferate in our blood, so the disease in our nodes and bone marrow are the source of all our problems and I will ignore the blood for now.

There is good reason to believe that these enlarged nodes are still full of CLL, but that it is not proliferating, thanks to the signal blocking from ibrutinib preventing it from getting the messages from its nurse like cells and others to be fruitful and multiply. So chock full of CLL, but it's dormant.

The other more positive interpretation is that these enlarged nodes are just the scarred down skeletons of the cancerous nodes they once were, and there is no residual disease to be found. Unfortunately, I am skeptical of this more PolyAnna hypothesis, and short of a biopsy which is not going to happen, there is not way to know for sure.

So what to do to avoid waking the Kraken?

Hope my genomic instability as evidenced by my 17p and 11q deletions and my complex karyotype will continue to behave with the ibrutinib aboard and not mutate so that my magical bullet no longer covalently binds BTK and blocks its activity?

Knock down the residual disease by adding a second or even a third agent?

Be reactive or proactive?

That is the question du jour faced by many of us now and more in the future whose CLL is controlled but it is not gone now with the new medications such as ibrutinib and idelalisib.

I have probed this recurring and unanswered question in more detail a prior post, and will soon be updating my thoughts on how to avoid being left stranded on third base and not getting home to a cure.

The rest of my news is also good.

My blood counts are boring and despite dropping my cyclosporin to a token dose of only 25 mgs once a day and stretching my 40 grams of IVIG infusions to every 7-8 weeks, my ITP also remains dormant. I think the possible immune stabilizing activity of ibrutinib and my low disease burden may be the factors  that have given me this long ride with high normal platelet counts. I have not been anemic for many months now and my neutrophils and the rest of the CBC are all copasetic. My blood chemistries are in the normal range and only my very low immunoglobulins, namely IGA, IGM, and IGG give proof to that fact that I still have a B cell leukemia, albeit a very sleepy and well behaved one.

More personal clinical and general CLL news soon, nearly all of it good.

I will be posting some of my interviews from ASCO 2014, plus sharing some exciting advocacy news. Busy times.

Personal Update on my CLL (Chronic Lymphocytic Leukemia): The Good News

It's been a while since I posted on my personal medical news.

Today in Columbus, it was all good. CBC was happily and boringly normal. My Hgb still shows that I am no longer anemic. My ALC (lymphocytes) is 1.4 which is actually a bit high for me, but certainly a comforting level.

My ANC (neutrophils) was healthy. My platelets are a bit higher than normal again, but that is to be expected due my splenectomy. The spleen gleans the aging and decrepit platelets, so counts are higher when it's missing. I will take high platelets any day over the terrors of single digit counts when my ITP was raging. By the way, the accepted wisdom is that the high platelets associated with a splenectomy do not increase the risk of a blood clot, but ironically ITP which ravages the platelets does. You can both hemorrhage and thrombose with the same disease. Seems inflammation is the enemy. I refer you to the 19th century wisdom of Virchow's triad, a trusted nugget carried in the brain of all medical students. 

More on this particular topic soon with some personal revelations, but that is for another post.

My blood chemistries show my liver and kidneys are happy and healthy. The advantages of a vegan lifestyle.

Dr. Byrd would not agree to skipping my next CT scan in three months. The very few late relapses on ibrutinib that he has seen after 24 months (my two year anniversary of living with the TKI magic of ibrutinib aboard will be at 9:30 AM EST on May 7, 2014) are often subtle and begin in the nodes. With my pesky abdominal nodes, that does seem prudent despite my aversion to more diagnostic "radiation therapy". Getting the scan at the newer CT at OSU's Martha Morehouse may cut the rads by as much 60%.

Most relapses occur between 12 and 24 months, so my period of higher risk is thankfully coming to an end. 

Still my clonal instability and my small subclone of 17p deleted cells keeps me forever on alert.

What we really need is a trial for the many patients such as myself that are doing very well on ibrutinib, but are not in a complete remission (CR). How about adding in a PI3K inhibitor such as idelalisib or one of the newer ones following in its footsteps. Hit the cancer clone on two pathways at once. A pincer move. A classic chemotherapy technique, but instead on chemo, we box off the cancer with focused therapies. Next add a potent third generation monoclonal antibody (mAb) such as obinutuzumab once the rascally clonal B cells have been released from the nodes and marrow out into the open spaces of the blood stream where they are easy picking for the antibody. Finally, we add something to mess with Bcl-2, say ABT-199. All this done in a carefully orchestrated and timed dance to maximize efficacy and dodge tumor lysis (TLS) by adding the ABT-199 as the final coup de grâce to make sure the beast will never rise again, but also when the tumor load is low so the risk of TLS is mitigated.

You can't get to cure without first passing by CR and MRD (minimal residual disease) negative.

For me, this is not a theoretical discussion. This is my blood and marrow and proliferative centers in my node that are at stake.

The same applies to many others that are in similar circumstances with ibrutinib and other TKIs.

It may even make long term financial sense in that it may also be a way to limit the duration of therapy with this initial treatment intensification, but with a predicted end of treatment baked into the plan.

I don't want to wait until it's too late so I am hoping such a trial may come to pass, speedily, in my time.  

These and similar concepts are beginning to percolate out there.

What do you think?

I am wondering about bouncing such a plan off the powers that could make it happen. Right now it is a small population that would qualify for such a trial, but our numbers are growing fast.

Please give me your feedback.

"You may say I'm a dreamer, but I am not the only one."

More news, personal and general soon.

I wish a meaningful Passover to all my Jewish friends. May we all leave our personal Pharaohs behind and cross dry shod into the promised land.

Report from my Scans and Lab at OSU

I am back home at last after a whirlwind tour of three states in five days.

My trip to Columbus for my OSU clinic visit at the James Hospital was enhanced by the hospitality of some new friends. The husband is also a CLL patient of Dr. Byrd and is enjoying an enduring and deep remission and who had his clinic appointment within twenty minutes of mine.

While waiting, I met a few people who teased me about my over sized poster in the lobby of the James, and a wife who insisted I meet her husband. Honestly I was touched when he told me that it was because of this blog that he drove from Kansas for the ibrutinib trial. He too is doing well with shrinking nodes and no ill effects.

For me, the news was good. All my blood tests were essentially within normal limits. My red and white blood cells and my platelets, my liver and kidney function and my electrolytes were all once again boring.

My scans showed stable disease. So after dramatic shrinking of my nodes over the first two scans in the first six months, there has been almost no change in the last nine months.

While my axillary nodes all shrank from three months ago, some significantly, and all my lymph nodes are a bit smaller than on the scan done last October, the actually measurements of my three index gut nodes were one mm bigger this time than than three months ago.

Since my whole GI tract was churning from the oral contrast (and is only now starting to recover), a one millimeter difference may be easily explained by the twisting of the gut, though radiologists usually choose to measure the index lymph nodes that are stabilized by their proximity to a major vein and less prone to changes in orientation.

Still one millimeter means nothing. In fact the summary says my nodes don't even meet the criteria for adenopathy (abnormal nodes). I can't agree with that cheery reading as I have one portal caval node that drains the liver that is 4 x 0.7 cm and that's an abnormally big node. None of the others are > 2 cm.

But they also say they are stable. If a patient, asked me about a one millimeter increase, I would offer them  my heartfelt reassurance that it meant nothing and was within the margin of error of the technology and the imperfect humans measuring them.

And that is what the radiologist stated. And they are famously over zealous in their reporting to avoid being blamed (and/or sued) for missing something, so I too am reassured.

Dr. Byrd advised that he sees this pattern of stable lymph nodes in many patients on ibrutinib and the nodes may start to shrink again in year two to three.

And of course, the report offers the added benefit that my every 84 day scanning surveillance has turned up nothing else suspicious in my thorax or abdomen or pelvis. No secondary cancers. Others have not been so fortunate.

I wish the nodes were all smaller. I wish they were all less that one centimeter, but I will take stable.

Patience.

Patience.

Next scan is not for six full months! That too is good news. I am nearly over the highest risk time for the very small risk of late relapse.

All in all, except for the mild gastric distress from the contrast media for the scan, a flash flood warning, and multiple delayed flights coming and going, a very good visit to Columbus.

I am happy and have much more exciting CLL news to share. More videos soon from ASCO.

Hope to get to report from the iwCLL workshop in Cologne, Germany and am definitely going to the LRF in Brooklyn, both in September.

Visit to OSU: All Good

My Picture for OSU Poster Campaign for their Clinical Trial

My wife and I had a wonderful visit to OSU and Columbus for many reasons, and will share more soon, but for now let me just reassure those who have been asking: my lab remains mostly boringly normal (I am not even anemic by the standards used at OSU, and my platelets, ALC, ANC, and all my blood chemistries are just fine) and my CT scans continue to demonstrate stable to slightly smaller nodes in my gut. The changes were very minor but they were all in the right direction.

Dr. Byrd says the pattern of rapid node shrinkage over the first few months followed by stable disease or slow improvement is a common pattern observed with ibrutinib.

Some of my gut nodes are still bigger than I would want. The only two nodes left that could be called  pathologically enlarged are one near my liver that is unchanged in the last 4 months at 0.7 x 3.9 cm and a second in my right pelvis that is slightly diminished at 1.2 x 2.2 cm, but I can happily live with that news. I had an 11 cm node and other massive clusters when this trial began so this is a huge improvement over my former lumpy bumpy self and my disease burden is slowly shrinking.

The news is all very good.

More to share soon about our tour of Dr. Byrd's lab, my "poster" in the hall of the James, the knee deep fields of Kentucky Bluebells in the metro parks, the amazing Mark Rothko exhibit, and the important research being done at OSU.

Overall, it was a wonderful trip.

Quick Turn Around: 12 hours at OSU and leaving hungry, tired, but with good news and my Ibrutinib .

I just realized that I traveled across the country through 3 time zones with stops at 2 different airports coming and going to spend exactly 12 hours from midnight to noon in Columbus. Ohio. In that short time I rented a car, slept (way too little), scraped snow off my windshield and drove on icy roads (memories of Montreal but not part of my California life), then at OSU had a large bore IV started (ouch) for my 2 CT scans with contrast and blood work, got some of the results (my blood counts and chemistries are all unexciting and in the normal ranges, and my innards are looking more like those of someone without CLL, but I am not quite there yet because although my lymph nodes continue to shrink overall, a few are still enlarged in my gut), had a brief check-up (no palpable nodes), visited a friend at OSU with complications of his CLL, picked up my magic PCI-32765, swallowed the first 3 battleship grey pills for this cycle, and rebooked my flight to get home earlier. What I didn't do was eat anything (no time after the hospital and I was prohibited before by the CT and drug protocols) or get any rest.

That is what home is for.

Overall a good trip with good news.

Back in 4 weeks for a bone marrow biopsy, but I am thinking of staying 2 night this time so I can rest and visit with my Columbus friends.

That visit will be the one year anniversary of my joining the trial and will mark my ninth months of getting up a 1/2 hour early everyday to take my ibrutinib on an empty stomach.

Time is a jet plane. Literally.

More crucially, that clinic visit will be the cue for my entry into the rollover continuation trial where I will be seen only seen every 12 weeks, but still get CT scans every 84 days, at least for the first 2 cycles.

I understand that every patient who has reached that landmark visit which essentially ends his or her participation in Clinical Trial NCT01217749 and with it, access to ibrutinib, has been offered the chance to stay on drug and has chosen to continue in the new trial.

That seems like one of the easiest choice that I will ever make.

What a difference a year makes.

More good news

I am too tired and time constrained to share any of the details, but let me just say that five CT scans later, my lymph nodes have continue to shrink in a significant way and my counts and chemistries remain stable. All very good news.

All the travel is wearing on me, but I hope to fill in the details of my continued clear and positive response to ibrutinib in the trial at OSU sometime soon.

A Personal Note: My Good News on Ibrutinib

Let me get personal here.

While I believe with all my soul that we are all in this together and I celebrate every move forward as exemplified by the amazing 100% overall response rate of the first cohort in my clinical trials presented in the interim reports on ibrutinib (PCI-32765) at the annual 2012 ASCO (American Society of Clinical Oncology), let me now share my personal good news.

My "n" is one, not statistically significant, but personally critical.

After only one cycle of four weeks of ibrutinib, my CT scan of my thorax, abdomen and pelvis showed that all my lymph nodes had significantly shrunk.

Yahoo.

Some details: Here is what happened to my biggest honkin' mesenteric node left in my belly. It is now measuring 2.5 x 5.8 cm compared to 3.2 x 8.9 cm when I rolled into Ohio to start the trial, a dramatic reduction of about 50% in area and certainly more in volume.

Other nodes have shrunk even more, and they have shrunk everywhere - the pelvis, the gut, near the liver and the blood vessels, and in the axillae (armpits).

Now it is possible that ofatumumab may have played some small role in reducing my tumor burden as my baseline CT scan was done before I started my infusions of that antibody, but if I make the logical but unproven assumption that what was happening to my palpable nodes was being mimicked by what was happening inside, then ibrutinib did the lion's share of the clearing out the cancer. My neck and axillary nodes changed little on the OFA.

But add the ibrutinib, and one formerly huge internal nodes that was 10.1 cm is now a petite 3.3 cm.

And all this in only four weeks, with almost no side effects and nearly normal labs and improved energy.

I harbor no illusions. A persistent 5.8 cm lymph node is still a nasty thing, but I also have no reason to doubt that it and its buddies will soon to be shadows of their former bulky selves. My palpable nodes are certainly continuing to get smaller and smaller.

What I know now for sure is that I have had a profound and deep response, despite my two evil complex clones, despite my failed transplant, despite my new small batch of 17p deleted cancer cells, despite the immaturity of my clone being unmutated and the chattiness of it being CD38 and ZAP 70 positive, and despite just about every bad marker.

This is the best news.

How deep and durable my response will be is my next challenge, but for now there is much to quietly celebrate and good cause to be optimistic.

So I under react, stay both calm and hopeful and move forward.

It has been wonderful to be home for a few weeks with my family and friends and patients and cat and the Pacific Ocean.

This weekend, I am off to Houston to lecture on CLL, transplants and anemia. The weekend after is Dallas, then back to OSU for more lab and to pick up 28 more days of ibrutinib.

Life is sweet.

CT results and the Joys of Denial

I have been slower than my usual tortoise pace since my 25 hour fast for Yom Kippur.

I wore no leather, did not anoint myself, had no "familial relations", skipped a shower, ate nothing, but I did drink water.

That morning I had my CT scan of my abdomen and the barium in my gut and more importantly the IV contrast iodine in my fragile kidneys needed to be purged so I drank lots of water.

After all the Talmud teaches we are to live by the commandments, not die by them.

But the not eating and the long hours in the shul, pounding my chest for my sins, doing the hard work of repentance, took its toll and I have still not fully recovered.

So did the CT scan tell whether on this day of judgement would I be one of those inscribed and sealed in the Book of Life for a year of peace and health and prosperity?

It was indeed like cracking open a fortune cookie and reading the note inside that foretells my future.

And like any good fortune cookie, the news was generically good, but non-specific.

After being on a manly dose of cyclosporin (that has raised my blood pressure, strained my kidneys and put me at risk for gout) for almost 4 months, and having had 6 weekly doses of rituximab that finished more than 2 months, there was only one question we were trying to answer. Was my cancer retreating?

The CT says YES. Big time. My largest cluster of mesenteric nodes had shrunk in volume more than 80% from 6.4 cm x 3.4 to 3.8 cm x 1.7 from the CT on 6/1/10. The next large node is in the inguinal area and measures in at 2.2 cm. The rest have all shrunk or at worst stayed stable.

Careful readers may be scratching their head. I thought you said your last CT was a year ago, and then the largest cluster was a mere 3 cm though I had suspected significant growth had occurred as my cancer was relapsing, making it hard to know what the findings from last Friday's scan would mean.

But I had honestly, totally forgotten about my June 1st CT, a scan of all of me, a scan of my neck, chest, abdomen, and pelvis.

I was in complete denial.

Its memory was not to be found anywhere in my head, When the radiologist told me I had less disease than before I was thrilled and surprised. Less than the 3 cm a year ago. WHOA! Then I was confused as he was comparing my images to those just a 100+ days earlier. I struggled to get my bearing as I listened to his findings. In the preceding weeks, I had discussed with my doctors the difficultly of not having a measurement just before I started therapy to help gauge my response to therapy when in fact I did. They didn't question me. Only my wife tried to tell me she had a different recollection. I didn't listen (always a mistake) for she was again right.

But the denial had served me well. I would have been so much more worried if I had been constantly conscious of my big gut notes. Their fate is my fate. I would have fretted and been down. Even more.

So the reality altering full blown denial in my case turned out to be a healthy coping mechanism, not that I recommend the ostrich strategy to any of my readers facing a tough enemy.

For me it bought me a few months of less fear.

This result is very good news. My greater than 6 cm nodes were sensitive to pretty gentle treatments of rituximab and cyclosporin. Not an easy task for such light weight therapies. It was hardly a given, many would argue a most unlikely outcome. No-one would argue it is not a reason to celebrate. And I would add, to push on.

In the next post I will deal with what the scan means in more detail. The picture is starting to get clearer. The path is straightening out.

Pretty darn good news

It is getting close to sundown, close to Kol Nidre, so this needs to be brief, but my weird therapy combo of immunotherapies, rituximab and cyclosporine, has worked again at shrinking my nodes, but there is more work to be done.

Platelets were 284,000, Hgb is back to normal from a minor dip, white count is perfect, and kidney function is stable. Only my BP is still a bit high from the cyclosporine

All the numbers and details after Yom Kippur.

And I promise a powerful surprise. It certainly surprised me.

May we all be blessed.

May we all be sealed in the book of life.