Soon after my retirement and relocation to Northern California, I had a “new patient” visit to establish medical providers in my new community. The new patient visit led to an obstructive sleep apnea diagnosis which resulted in the recommendation to have my tonsils removed. As part of the pre-operative procedures, blood labs were drawn that led to my CLL diagnosis.
Thus, my CLL journey began which has led to a lot of online research to learn as much as possible about the disease. It was through this research I became aware of the CLL Society and reached out regarding support groups in the Sacramento area. One thing led to another, and I helped establish a support group for the greater Sacramento area. I want to acknowledge the support group members as I have learned so much from them, the truth is they do more for me than I feel I’m doing for them in facilitating the group.
Along the way, I’ve subscribed to most leukemia organizations’ blogs and newsletters as well as attended numerous webinars, and have paid close attention to the rapidly escalating COVID news cycle. My wife and I have taken to heart the seriousness of COVID, received our Pfizer antibody injections early on, adopted social distancing practices, routinely wash and sanitize our hands, wear masks everywhere we go (in fact we put them on in the parking lots before we get out of our car and keep them on until we get back in the car). As soon as the announcement was made by the CDC that COVID booster shoots were available for the immunocompromised (many thanks to the work of Dr. Koffman and the CLL Society for being instrumental in advancing this protocol for us CLL’ers) I had the third injection.
On the subject of the CLL Society being very instrumental in advancing our cause, the CLL Society’s website, Dr. Koffman’s weekly blog, along with his quarterly Tribune newsletter has become my “go-to” resources for all things CLL and even COVID. I frequently refer to the monthly CLL Bloodline as the monthly Cliff Notes for CLL. Another benefit the CLL Society provides is establishing and posting on its website resources regarding proactive steps for COVID awareness and response plans. I used this resource guide as a “fire drill preparedness” guide to developing an action plan for when and if it would be needed. My plan included: where I would go for COVID testing and REGEN-COV infusion treatment both during normal business hours AND during off-hours, especially a holiday weekend when most doctors’ offices are closed. Also, in the “fire drill preparedness” guide I included information regarding my CLL diagnosis and treatment, prescription history, and CLL Society document outlining the CDC recommendation for early intervention. I also added a pulse oximeter to my home medicine cabinet to go along with the digital thermometer.
I am currently in active treatment for my CLL beginning in May 2020 with a combo treatment of obinutuzumab and venetoclax. While the treatments have been very effective in arresting the disease, they have also been very detrimental to the immune system by suppressing the B lymphocytes and neutrophils needed to help mount an immune response. As part of my constant research into CLL, I identified a clinical study in Seattle being conducted by the Seattle Cancer Care Alliance in conjunction with Memorial Sloan Kettering and Adaptative Biotechnologies named the “Veneto Stop” trial, to determine if CLL patients on venetoclax might be able to end their treatment early by using the clonoSEQ tool to determine once a patient was uMRD for two consecutive months. Wanting to complete my treatment as soon as prudently possible so that my immune system could come back up to a healthy level I enrolled in the study. Also, being a Seattle native with our son and his family there, trips to Seattle for the study would allow us the occasional opportunity to see him as they are all vaccinated. I felt that by taking all the precautions of vaccinations, mask-wearing, hygiene, and social distancing the chance of infection could be managed successfully and worth the risk of travel and occasional family visits. As of this writing, I’ve now made three trips to Seattle and am happy to report my CLL is uMRD, and closing in on the suspension of my venetoclax treatment.
My last trip to the Seattle Cancer Care Alliance was on September 1st, an up and back the same day trip keeping my mask on the entirety of the time, foregoing the refreshments on the plane. I remained completely isolated from everyone but did meet my son for lunch after the lab appointment at the clinic. The day after I got back, I started to feel a bit off and with a hyper-awareness of myself and with the pending Labor Day weekend coming up I wanted to err on the side of safety and went to the Urgent Care facility within my health network to see if I could get an antibiotic prescribed for my slight congestion. My action plan had prepared me for this so I was able to have a proactive conversation with the Urgent Care physician about receiving the REGEN-COV infusion therapy in case the result was positive. About an hour after the appointment, I had a call from the attending physician that the PCR nasal swab was positive for COVID. He had already contacted the ER department and had them reach out to me to get in ASAP for the infusion treatment.
The infusion treatment was pretty much a non-event, four injections of REGEN-COV in a combination of either the arms, legs, or abdomen, then waiting for an hour under observation of severe side effects, none were observed. In the time afterward, I’ve had extreme fatigue, GI issues, nausea issues, tremors, night sweats, fever, etc. with each day passing the side effects have significantly decreased. I feel so fortunate to have the resources available to develop my action plan. My ordeal hasn’t been a walk in the park but has been nowhere near to what I’ve witnessed on TV and the internet.
Many thanks to the CLL Society and Dr. Koffman’s leadership for paving the way in developing awareness and resources. As Dr. Koffman likes to say, “we’re all in this together”, I would like to say “we’re Dr. Koffman’s fearless warriors” following his lead.
Rick Field is a 72-year-old man, retired and living in Roseville, CA.
