Monday, March 6, 2017


Sometimes it is good to be doing activities that help me forget that I am a cancer patient – like tai chi, playing with my grandchildren, painting, and stand-up comedy. But being a patient advocate is very rewarding, and often introspective for me.

I recently returned from the Seattle Cancer Care Alliance (SCCA) to establish a Plan B and Plan C in case I (or anyone in my situation) relapses on ibrutinib, has problems with side effects, or fails to have access to the drug due to financial reasons. My Plan A has been ibrutinib (aka brand name: Imbruvica) so far.

I started on the drug to combat Chronic Lymphocytic Leukemia (CLL) in a clinical trial July 12, 2012. I obtained complete clinical remission January 2015. What most people don’t realize is that does not necessarily mean you are cured of cancer. If you are MRD-positive (minimal residual disease) like me, there are still 0.5% leukemic cells floating around in my bone marrow. That is why I take an oral cancer drug every day.


When I entered the Seattle Cancer Care Alliance building, I stopped by one of the infusion rooms on the fifth floor to see a CLL virtual friend in the flesh … Lisa M. Weiss. Lisa had been intolerant on ibrutinib, and relapsed and was refractory to chemo. She is now on acalabruitinib. Lisa and I spent a couple hours chatting. We had talked before on the phone and she recommended the SCCA. She is a CLL patient, a patient advocate, and manages a Facebook group for women with blood cancers (CLL/SLL/NHL Cancer support for women). She is very knowledgeable and I loved talking shop with her.

We discussed how CLL is a disease of the immune system. Lisa gave me the link to a couple articles:
(1) Scientists have discovered 41 DNA changes that influence the risk of CLL (
(2) The Center for Prevention of Progression of Blood Cancers (CPOP) research initiative at Dana Farber Cancer Institute in Boston is researching chromosome mutations in CLL patients (


After my visit with Lisa, my husband and I sat down with Dr. Mazyar Shadman from Fred Hutch/SCCA to discuss the 400 pages of my medical records and to discuss my Plans B and C.  Mazyar Shadman, M.D., M.P.H is an Assistant Professor, Medical Oncology, University of Washington, and an Assistant Member, Clinical Research Division, Fred Hutchinson Cancer Research Center. He spent an hour and a half with us. He told us about the genetic research that is being done at SCCA, the CAR-T cell therapy, allogeneic bone marrow transplants (which many CLL experts see as a last resort), and the research being done by Dr. Richard James, which is funded by an NIH grant.

If a cancer patient relapses on ibrutinib, it will usually be within the first few years. Most are 17p-deleted folks like me. It has been four years and eight months for me. Dr. Shadman said that for patients like me, it has been found that the quality of response and the side effects get better with time. My worst side effect was the severe cramping in muscles in my body and my limbs. Hydration and exercise with stretching seems to have been the key for me. I have to be mindful of what I eat because of inflammation. If I give you a fist bump instead of a handshake, it is because I am immune-compromised and hands are the number one carrier of germs. I am not trying to be cool. LOL.

Here is a tidbit of information for you science nerds:
Dr. Shadman said that there are two CLL mutations in resistance that are key to patients who are taking IMBRUVICA (A.K.A. ibrutinib): (1) BTK-C481S mutation, and (2) PCG2 mutation, an enzyme mutation that makes the BTK pathway independent. The PCG2 mutation is the one he said would apply to me, if I relapse.

So what are my Plans B and C in case I either relapse on ibrutinib or do not have access to the drug? Dr. Shadman said there are many novel agents available in clinical trials. One drug that is off trial and FDA approved is venetoclax. That would be his first choice for me.

If I have disease on board, I would be pre-treated with FC (Fludarabine + Cyclophosphamide) chemotherapy before a CAR-T Cell procedure. I wrote about this trial at the University of Penn in one of my previous postings. Now remember I am chemo-resistant (17p deleted and p53 mutation), so I asked him why I would be treated with chemo. He said it is to suppress the immune system.

SCCA has done 150 CAR-T therapies in their clinical trial. It targets CD19. Because CD19 is also found on healthy B-cells, the patient will have to have IVIG infusions every month or two, but the cancer is essentially gone from your body. It is a small price to pay.

It is in those moments when I meet with the medical team or researchers that I remember how serious immune deregulation disease is.

Cyndi Stansbury entered my NIH trial with ibrutinib five months before me and relapsed in 2015. Here is a success story of the CAR-T Cell procedure:

E-mail from Bill Stansbury:
“My wife, Cynthia Stansbury, was one of the original patients in the NIH Ibrutinib trial for CLL. My wife has the 17p deletion. She was admitted into the trial in February 2012. She did well on the drug with little side effects, other that bruising easily and one bout of A Fib. In October of 2015 she began to relapse with escalating WBC. Cynthia was referred to Stanford where she was admitted into a trial for ABT-199 (Venetoclax). She was hospitalized briefly at the beginning of the trial due to tumor lysis. She relapsed off the Venetoclax after eight months showing enlarged lymph nodes on a CT scan.
It was suggested to us by the staff at Stanford that here best option was CAR-T immunotherapy.  To make a long story short, we just got back from three months in Seattle where Cynthia underwent CAR-T therapy. It was not easy by any means. She underwent three days of chemotherapy prior to the day when she was to have her cells re-infused. At that time she contracted RSV (a viral infection). She had to get over the infection before she could get her cells re-infused. That took two weeks. They then had to repeat the initial chemo then re-infuse her cells several days later. One week after re-infusion she was hospitalized for 11 days due to cytokine release syndrome. She was extremely ill during this period. About 20 days after the re-infusion, Cynthia underwent a spinal puncture, bone marrow biopsy, blood tests and PET/CT scans. There was no evidence of CLL in her blood, bone marrow or spinal fluid. Her lymph nodes showed a 40-70% reduction in size. Her FISH test showed no 17p. The care she received in Seattle was excellent. Cynthia goes back in April for a check-up.”

Cynthia was on the Emerald Team at the SCCA clinic, and Dr. Maloney oversaw the CAR-T clinical trial in which she was enrolled. Dr. Ramos was her doctor during the procedure, and follow-up will be with Dr. Shadman and Dr. Turtle. Bill and Cynthia Stansbury have graciously offered their email ( if anyone has any other questions.

Life goes on. I am preparing for a stand-up comedy show at the Improv this month to benefit cancer research for the Leukemia & Lymphoma Society. I am still alive and kickin’ because of cancer research. I am eternally grateful and I thank God for every beautiful day I have on this earth. I am even thankful for the crappy days. LOL.


  1. Hiya, doc La Verne. Fun to visit your blog and see all this information. So encouraging to know some of the options we have. Thanks blood-sista.

  2. Thank you for sharing this info. I have the same bad genetic markers and have been on imbruvica for a little over a year. It's nice to read anything hopeful.

  3. Miss seeing you at NIH. We have now settled in to Gig Harbor and now planning my first trip from here to NIH. Any advice? It is a longgggg flight.

    1. Dear Fran:
      Bring masks, sanitary wipes and old lady compression socks. Wear the socks on the plane and stretch your legs every now and then to keep the blood flowing. Use the wipes to clean the tray [A scientific study has shown evidence that this carries the most germs], the back of your seat, the arm rests,the metal seat belt attachments. and any buttons or knobs. Wear a mask on the plane and turn off the air flow above your head to prevent other people's germs from infecting you. I know this may sound ridiculous to most people, but it has prevented me from getting sick. When you are immune compromised, it is worth doing. I also have a softball in a tube sock that I use to fling over my shoulder to massage my back. sometimes I sit on it or roll it on the back of my leg to prevent cramping. Hope this helps.