Thursday, April 15, 2021

My blood brother Joe's afib issues with ibrutinib

My friend Joe is a guest blogger today. He has just been taken off ibrutinib because of afib issues with his heart. Here is his story:

In May 2005, after an annual check-up with my PCP, I got a call from him asking me to come in again. He told me I had leukemia, chronic lymphocytic leukemia (CLL) and that he’d set up an appointment for me with a local oncologist. The oncologist confirmed the diagnosis and told me I wouldn’t likely need treatment for several years, if at all.

About seven years later, due to a large and uncomfortable spleen, a very high white cell count, many large lymph nodes and an apparent infiltration of CLL cells in my bowel, treatment was next. I went to a CLL expert and along with my local oncologist we decided on a clinical trial at a major clinical center with the drug then called PCI-32765.

I started the drug and fairly quickly my symptoms decreased. I was taking three 140mg capsules a day, all together in the morning. Some time later, I had episode of afib. I had a couple of these before starting the new drug but it was decided to reduce dosing to two capsules a day just to be safe as the drug had shown to have some possible cardiac side effects. The drug was later called ibrutinib and later still Imbruvica and achieved FDA approval for treatment of CLL. For several more years I continued on ibrutinib with few side effects and successful symptom treatment. My white cell count was in the normal range.

Early this year, I had another episode of afib. This was while on 50mg of metoprolol prescribed by my cardiologist to hopefully head off any other afib events. I called the clinical center to inform them. They suggested a Zio monitor which I used for 30 days. The monitor picked up an episode of V-tack and even though quite brief (four beats apparently while sleeping) the recommendation was to stop the ibrutinib – “a drug holiday” for three months, then to follow up with a second Zio monitor and evaluate our next options from there.

When I had a telehealth visit with my doctor, she said all looks well with one exception not related to white cells but hemoglobin. She just said to follow that up locally for now. I might not eat enough meat.

There are also other newer drugs one of which I’d been reading about called LOXO-305 which is in trials. I thought that it might even be possible to return to the lower dose of ibrutinib but that is unlikely with cardiac concerns. We discussed venetaclax, acalabrutinib and even that LOXO-305. I am looking into clinical trials. There is a venetaclax ramp up trial (short-term later to be followed locally) and one other trial currently on hold.

The doctor verified that I will be coming off ibrutinib. The risk for me with cardiac issues is apparently not worth continuing.

So, for the time being, I am once again not being treated for CLL. My doctor and I are once again developing our next plan to cope with this intrusive visitor. So, it looks like watch and wait again from here.

-- Joe

Thursday, April 8, 2021

CLL patients developing antibodies from vaccines

Today I would like to chat with you about the antibody response to vaccines given to CLL patients. The first part of my post is an anecdote and further studies are ongoing. The second part of this post include the scientific results of two other vaccines given to CLL patients, two studies in which I participated.

PART 1: My friend Anne is in the same clinical trial at National Institutes of Health (NIH) as I am. We have been both been taking Ibrutinib since 2012. She got both shots of the Pfizer vaccine and was curious if her body would respond by creating antibodies.

In a normal healthy person, the Covid-19 immunity process typically takes two weeks after the second dose of the vaccine. One month after Anne’s second dose the total IgG/IgM antibodies to SARSCoV-2 Nucleocapsid protein test results were nonreactive, which means no antibodies were found. However, eight weeks after Anne got the second dose antibodies were finally detected: Positive >0.79. There’s a little hope here. It will be interesting to see if the antibodies continue to increase in number.

As a cancer survivor and Ibrutinib user, I am interested in my own immunity process. NIH will soon be opening a CLL vaccine clinical trial on antibodies. As soon as I am notified that their proposal has been approved, I will post the information to the NIH clinical study on the antibody response to the vaccine in CLL patients.

Another option is the Leukemia and Lymphoma Society (LLS) is setting up a patient registry and is paying for quantitative antibody testing at LabCorp. This study expands to more types of cancers. The link to their registry is: https://www.ciitizen.com/LLS/?utm_source=LLS&utm_medium=Partner%20Landing%20Page&utm_campaign=&utm_content=&utm_channel=LLS&utm_vehicle=

PART 2:

I was one of the participants in the NIH CLL HEPLISAV-B (hepatitis B) and SHINGRIX (shingles) vaccine studies. The recently published initial results from the vaccine studies has been published.

The full article can be found here: https://ashpublications.org/blood/article/137/2/185/474376/Effect-of-Bruton-tyrosine-kinase-inhibitor-on?searchresult=1

Below is a brief summary of the results from NIH:

SHINGRIX: Approximately 60 percent of untreated patients CLL patients and approximately 40 percent of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed an antibody response against the shingles virus. This response rate is less than in the general population, however we are encouraged by these responses and recommend the SHINGRIX vaccine to CLL patients that have not yet received it. However, we do not know how long the antibody response lasts. The antibody response to the Shingrix vaccine is based on a research test and, therefore, is not part of your CRIS record.

HEPLISAV-B: Approximately 30 percent of untreated patients CLL patients and approximately 5 percent of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed antibodies against the hepatitis-B virus. Patients treated with a BTK-inhibitor do not appear to reliably develop antibodies following vaccination with HEPLISAV-B. CLL patients that are untreated are still able to develop antibodies against the hepatitis-B virus, albeit at lower rates compared to the general population.

Side Effects: The side effects for both SHINGRIX and/or HEPLISAV-B were very similar compared to those observed in the general population – there is therefore no evidence to suggest that CLL patients suffer from more side effects following vaccination.

As cancer survivors we have some hopeful news. As Dr. Brian Koffman says, “We are all in this together.”