Thursday, December 24, 2015

CLL Society Newsletter with Dr. Byrd on ACP-196 and Dr. Furman answering chronic lymphocytic leukemia questions and much more

The CLL Society’s 2nd newsletter is out at http://www.cllsociety.org/newsletter/.
There is a fresh interview with Dr. Byrd on his exciting ACP-196 data, Dr. Furman answers your questions, Dr. Sharman discussed antibodies, especially Gazyza, I review the basic anatomy of a lymph node in CLL, Terry Evans interviews Sheila Hoff, RN about being a clinical trial nurse, and most importantly fellow CLL patients write about compassion and nutrition and dealing with cancer and a transplant and much more.
Please take a look and let us know if you have any questions or even better if you want to write for us. Any feedback is welcome. 
We did 14 sets of interviews of live interviews with experts on CLL from ASH 2015 so please consider signing up for the alerts ( http://cllsociety.org/newsletter-sign-up/ ) so that you don’t miss any upcoming posting, but as always, all our content does not require your sign in. If you do sign up, we won’t share your data with anyone.
Stay strong.
We are all in this together.
Brian

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Friday, August 16, 2013

CLL: Report From The Infusion Center


It has been six weeks since my previous infusion of IVIG for my now well-behaved ITP and my platelets remain near 400,000, a very healthy level. Post splenectomy counts tend to run a touch higher than normal limits but it certainly seems with these results, I can safely stretch out visits to the cancer center to every seven and then eight weeks.

Dr. Byrd is behind this as long as my trough IGG (immune globulin G) level stays > 600. That level is a bit below normal, but safe.

More good news.

My absolute lymphocyte count remains nice and low. Neutrophils remain rock steady. Monos remain a touch high. All good.

The only slight annoyance to an otherwise joyous lab report was the slight drop of my hemoglobin to 13.1, back into the mildly anemic range. Last time it was 14.4. The time six weeks before that was 14.6.

Those last two blood counts represented the first time since my hematopoietic stem cell transplant more than five years ago that I have had two CBCs in a row that showed no anemia.

However, if I look back to April 2013 my Hgb. was 13.2. 

I was hoping it would be staying in the > 14 gram range and maybe even start to climb to where it was pre-CLL in the high 15s, but it continues to bounce around in a narrow range of low normal to normal. I refuse to be concerned unless I see a downhill trend. What I see instead is this pattern of the same minor ups and downs over the last three years of blood counts.

I teach others that in most circumstances, one blood count in CLL means little. It is the trends that matter.

I will listen to my own counsel.

So no worries. At least until my next infusion seven weeks from now in October! My veins are so happy.

Talking about IVs, while here with a needle in in my right arm, I spoke with a young CLL friend doing well after HDMP+R (high dose methylprednisolone and rituximab) at UCSD with Dr. Castro who now is considering a Campath mop-up.  With his blood clean and no abnormal nodes, he has only < 1% CLL left in his marrow. He is less inclined, and I agree, to follow such a course with all the new meds in the pipeline. The calculation of the risk benefit ratio of prolonging the remission versus the real danger of serous infection from the knocking out of the B and T cell population with Campath may be shifting.

And I Skyped with a friend in Ireland whose wife with CLL has a growing solitary cervical node and a upper respiratory infection on the same side. We discussed the differential diagnosis with a reactive benign node (the typical nodes that swell in response to an infection) being number one, relapse number two, and Richter’s the least likely in the absence of a rising LDH and more malaise.  Also she was only received rituximab therapy in the past, has no high-risk deletions, and is mutated, making the last diagnosis even less likely.

I point these two cases out to remind us all that there is no one size fits all in CLL, and along the way, we are faced with a myriad of big and little decisions and worries.

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Tuesday, January 8, 2013

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.

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Monday, May 21, 2012

Good news on Ibrutinib

The day has slipped away and I am flying home ridiculously early tomorrow morning for a quick visit to the kids and the cat, before returning here for another two weekly checkups

So I will be brief, but  Ipromised an update.

The magic keeps happening.

My subjective feel that my nodes were shrinking was confirmed by the exam today. Really no nodes bigger than 1 x 1 cm. That is amazing after only two weeks of ibrutinib. Sore were 5 x3 a few weeks ago.

Lab showed a normal WBC and ALC so I did not get the big bump up that many see in other cohorts, but that might be because of the ofatumumub. It hangs around for a long time and may be preying on those hapless lymphocytes unprotected by the "microenvironment" when floating in my blood stream. No-one seems worried, so I won't either.A rise in ALC doesn't seem to predict response

Platelets remain above 400,000.  My ITP is in deep retreat.

The only fly in the ointment is that my Hgb has drifted down a bit to 12.9 which is the lowest it has been in years. BTK is found in reticulocytes, but my retic count was good. Ofatumumab can occasionally cause anemia. I will watch the trend. In blood tests and stocks, it's the trend that counts.

Gotta crash. More from SoCal soon.

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Saturday, May 12, 2012

It's working already: Ibrutinib (PCI-32765)

My nodes are definitely smaller after only five days. Not nearly gone, not softer, but undeniably shrinking.

Also getting waves of nausea and feeling plain lousy and diarrhea so I know the medication is for real, but it is nothing that I can't manage.

Monday I am at the clinic and will see if the less biased examining fingers of my treatment team confirm my findings of diminishing nodes that I discovered when I showered this morning.

I also expect that those nasty B cells had to go somewhere, so my absolute lymphocyte count should be quite a bit higher when they do the blood work. That's a good thing.

Maybe, just maybe, this is the beginning of the end.

This is very promising news.

Now I must remember to enjoy but under react.

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Monday, February 14, 2011

It's the Nodes, Stupid

I am not big on sharing studies here. There are other sites that I have listed before that are much better at that than this blog,


I share this to share with you some of what gets me excited. Most of the research that I read on CLL, and that is several articles everyday, are not immediately pertinent and nearly all are downright dull.

However for me, this recent study answers the questions as to where my cancer, chronic lymphoid leukemia, is doing most of its growth. And from that it is my opinion, we learn where it must wiped cleaned or there is no chance for a cure.


What this research says to me if that the cancer is most active in the nodes and the spleen, essentially a big node. That fits completely with my own experience. My CLL (after my transplant) came back in my nodes first, my hidden nodes deep in my guts. This is most obvious in those like me with 11q del that tend to have bulky nodes, but is true for all with CLL.


This has important implications for me and any CLLer. If I want a cure, which I sure as heck do, I need to get rid of all the proliferative centers in all the nodes.

Hopefully this small step will be followed soon, with the article that announces the path to the cure.


Proliferative index and expression of CD38, Zap-70, and CD25 in different lymphoid compartments of chronic lymphocytic leukemia patients

Original Research

(423) Article views

Authors: Olga Khoudoleeva, Eugeny Gretsov, Natasha Barteneva, et al

Published Date January 2011 , Volume 2011:3 Pages 7 - 16 DOI 10.2147/PLMI.S14752

Olga Khoudoleeva1 Eugeny Gretsov1 Natasha Barteneva2,3 Ivan Vorobjev1
1Hematology Scientific Center, Russian Academy of Medical Sciences, Moscow, Russia; 2Immune Disease Institute and Program in Cellular and Molecular Biology, Children Hospital of Boston, Boston, MA, USA; 3Department of Pathology, Harvard Medical School, Boston, MA, USA

Abstract: Recent studies of chronic lymphocytic leukemia (CLL) show that malignant B cells proliferate at a rate similar to normal B lymphocytes. This is in apparent contradiction to the very low proliferation rate found in blood specimens from CLL patients. To address this problem, we studied the expression of Ki-67, CD38, CD25, and Zap-70 in different compartments of CLL patients. Using triple-color flow cytometry, we examined the expression of CD38, CD25, Zap-70, and Ki-67 antigens in the peripheral blood, bone marrow, spleen, and lymph nodes biopsies of patients with CLL, splenic marginal zone lymphoma (SMZL), and nonmalignant diseases. In parallel probes of lymph node/spleen biopsies and blood taken from one and the same patient, Ki-67 expression was 17 times higher. Among the whole cohort, we also found significantly higher Ki-67 expression in biopsies from lymph nodes and spleen (4.95% ± 0.55%), compared with bone marrow (1.88% ± 0.32%) and peripheral blood (0.45% ± 0.03%,). We show for the first time that proliferation of B lymphocytes in CLL patients is associated primarily with lymph nodes/spleen.
Malignant cells in the blood represent only a subpopulation of nonproliferating and less-activated B cells in this disease.

Keywords: chronic lymphoid leukemia, CD38, Zap-70, Ki-67, bone marrow, lymph node

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