If you are living with CLL, or a partner or caregiver to someone who is, I want to share a few resources and recommendations that may be new and useful to you.
Financial Assistance for Patients with CLL
The Leukemia & Lymphoma Society’s Co-Pay Assistance Program provides eligible CLL patients up to $8,000 annually for treatment-related expenses. Covered expenses include:
- Costs related to certain treatments, including chemotherapy and radiation therapy; scans such as ultrasounds, X-rays and colonoscopies; and lab work such as blood draws, biopsies, blood transfusions, iron chelation therapy, radio-immunotherapy, etc.
- Costs of prescription medicine related to your treatment, including supportive medicine such as anti-nausea medicine, pain relievers, antibiotics, etc.
Costs related to health insurance, including your premiums, deductibles, co-pays, co-insurance, and Medicaid spend-down.
I encourage you to explore how the Leukemia & Lymphoma Society’s Co-Pay Assistance Program may support you.
High Correlation of CLL and Skin Cancer
For those like me in the Northeast of the U.S., it’s getting consistently warmer … and summer will be here before we know it.
If I have personally coached you, you are aware of the high prevalence of skin cancer—melanoma, basal cell carcinoma, and squamous cell carcinoma—for those hosting CLL.
Here is a published paper that discusses the findings.
I recommend that you do a regular self-check for suspicious skin growths and moles, and have someone check your scalp.
You should also be seen by your dermatologist twice annually for a full body check. Make sure your provider is aware that you are hosting CLL. Spring and Fall are ideal times for this clinical checkup—before and after summer.
Candidly, I love the sun. I am in my convertible all summer long. I get too much. See… I am far from perfect. : )
Some unprotected sun, say 15 min/day, can be okay. But it is critical to stay covered or use high quality sunscreen for body and face. I use mineral-based products and go with the top rated safe or low toxicity ones featured on Environmental Working Group, here. Beware of commercial products full of lots of not-so-helpful chemicals.
I am constantly asked about my thoughts on the three (thus far) FDA-approved COVID vaccines, and what my particular intentions are regarding getting inoculated.
This is a very personal decision. I am in uncharted territory based on no evidence of CLL for 9 years, and having not undergone conventional therapy. I am also behind on a number of vaccines and boosters because I do not have a spleen. My personal concern is the potential of waking a CLL clone. Even my Harvard dean hematologist is unsure what direction I should take … and that’s before discussing COVID vaccines.
So I will continue to follow the CDC guidelines for keeping safe, and wait a bit before I may choose from what will likely be a half dozen or more vaccines. And, as always, I will work on strengthening my immune function and resiliency.
We know that those hosting CLL are susceptible to very challenging COVID outcomes. The newly emerging variants may be even worse.
I encourage you to follow the science, review the publicly available tracking of adverse events from the various vaccines, and discuss any concerns with your primary care physician and hematologist.
CLL Society COVID Resources
Also, the good folks at the CLL Society have an amazing COVID resource page you can access here.
Don’t miss their COVID-19 Virtual Community Meeting: Contagion, Variants, and Vaccines, Friday, March 26, 2021.
And finally, for those living in the U.S., please consider the Society’s Expert Access Program, where you can arrange a televisit with an academic CLL clinician-investigator expert for a second opinion at no cost to you.
Top image credit: BigStock.com/ilolab