I am Good!

Back from NIH and the meeting with my medical team. I had the wonderful experience of sharing some time with my blood brother George and my blood sister Fran. I remember one time years ago we were laughing so hard in the clinic lobby. We were laughing about cancer. Yes, we have a sick sense of humor. It has gotten us through all these years together as survivors.

Good news! No more CT scans or bone marrow biopsies in this clinical trial for me. I am going on six years with ibrutinib.

Well another boring normal blood report. My platelets are in the normal range but at the lowest it has been. These numbers fluctuate with infections.

My white blood count is 9.7 (3.98-10.04 K/uL) is normal. Lymphocytes Absolute: 1.34 (1.18-3.74 K/uL) is normal.

There are two arms of this clinical trial: Arm A for elderly (65 and older) and Arm B for 17p deleted. Even though I am technically “elderly” now, I am in the Arm B – the poor prognosis arm, the difficult cases. There are 35 of us in the B arm and eight are out of the study because of relapsing. Most have moved on to venetoclax prescribed by their home doctor and are doing well. Those patients come to NIH for follow-ups and NIH acts as a consultant. The rest are either in alternative clinical trials. One relapsed on venetoclax and had an unsuccessful CAR-T procedure at Seattle Cancer Care.

We had to sign another clinic consent form because five ibrutinib users throughout the United States have had issues with arrhythmia, which is irregular heartbeats. I do not have scientific evidence, but most of the patients I know about who have this side effect have had prior heart issues before going on the drug.

I had an appointment with my cardiologist a couple days after I returned from NIH to see if I needed to be on blood pressure medicine due to the side effect of increasing high blood pressure. I made the appointment three months ago. I thought that was one of my side effects, since my blood pressure has been increasing the past year. Surprise! My blood pressure at NIH was 123/51. In the second NIH reading the diastolic number (bottom) went up a little. My cardiologist looked at all my readings from the past month and my blood pressure is normal. He said I must have fixed myself. Diet and exercise is the key. Here is the humor in that statement: Because I have had a bum knee, I have not exercised the past couple of months and gained several pounds. As a post-menopausal woman, I can look at a slice of bread and it appears on my hips, if I don’t exercise. Go figure!

So, I am good. I just keep on keeping on and try to live an authentic life. (((HUGS)))

R.I.P. my courageous friend, Lisa Minkove

Damn damn damn cancer! 

Monday, April 9, 2018 I lost a very special blood sister, Lisa Minkove. People who know me understand that I rarely cry. It has been conditioned out of me, but I am crying now. I am heartbroken.

Lisa was a CLL patient advocate. Her facebook page offered words of wisdom for women battling CLL, as well as scientific papers. This was her second act.

Lisa and La Verne in SCC February 2017

A little over a year ago I visited Seattle Cancer Care and spent some time with Lisa. She had relapsed on ibrutinib and the medical team was trying to find another option for her… and another… and another. This time we were hoping for a cure with the CAR-T procedure. Lisa was a patient at Fred Hutch and SCCA for seven years with Dr. Maloney. 

Lisa wanted Dr. Brian Koffman to get in the trial before it was filled, since they were accepting only seven more participants in the Phase 1 trial. Lisa talked to the trial medical team about him. I told her that my blood brother Dr. Brian Koffman was also a patient in SCCA and he was having the same procedure and that she should seek him out. She chuckled and said she had already done that, but did not meet him and his wife in person until right before she received the infusion. Dr. Brian was further along in the procedure than her, because she had to deal with a bout of shingles which delayed her procedure.

I communicated with her a couple days before she passed. She was in good spirits. I told her how courageous she was. She believed she was there for the purpose of helping others learn about leukemia. Lisa was a brilliant woman. She documented her journey to help others. We discussed the science of her being refractory. We joked that we were both members of the aggressive club. Even though I was 17p deleted (high risk) and she was not, we joked that she may have me beat.  She was hopeful and a positive spirit.

I just had a fleeting memory come through my mind. A couple years ago she made me some beautiful handmade jewelry. She mailed it to me just because. You see Lisa was a really special spirit. She shared her heart and mind. I will never forget her.

Thursday morning I am headed on a plane to National Institutes of Health in Bethesda, Maryland for my quarterly medical team checkup. I will be thousands of miles in the air and be landing just about the moment she is laid to rest. I will be thanking God that he put such a lovely human being in my path of life. For that I am forever grateful.

Her children Joran Minkove and Hera Minkove wrote the following:

“With the heaviest of hearts we regret to announce the passing of our mother, Lisa Minkove. She courageously looked cancer right in the eye, never once gave up hope and was a shining example of grace and positivity for those around her enduring the same- especially to her wonderful friends. She had an online support group of over 900 women with the same or similar cancers who she would offer advice and do research for. This group has been her passion and the women she met through it have become some of her closest friends.

Funeral Services will be held on Thursday April 12th at 1pm at Herzl Memorial Park at 16501 Dayton Ave N Seattle WA

In lieu of flowers, please send donations to the Leukemia and Lymphoma Society or Chabad of the Central Cascades.”