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As a CLL/SLL patient, what other illnesses am I more inclined to have based on my compromised immune of the system?
There are several diseases CLL patients are more likely to get. I would group these into three categories:
- Infections: usually sinus or bronchitis infections, but include shingles and PCP due to T cell defects.
- Autoimmune: autoimmune hemolytic anemias and ITP
- Malignant: mostly skin cancers, but includes other solid tumors
Overall, these are all related to immune dysregulation, with the autoimmune being due to loss of appropriate immune controls and malignant being due to loss of tumor surveillance.
I see the term “remission on ibrutinib” being used. In this context, what is the definition of “remission”, how do we know when we are in remission, and what does it mean for continuing the regimen of taking the ibrutinib forever? How long is forever when you’re in remission?
Remission is difficult term to use in CLL, especially with regard to agents like ibrutinib. Remission is usually applied to when the disease is not detectable, but with CLL, this really depends upon how carefully one looks. Terms such as complete response (CR), partial response (PR), stable disease (SD), and progressive disease (PD) are more descriptive and what we use. These are based upon strict criteria, such as number of lymphocytes in the blood or bone marrow, lymph node sizes.
A demonstrative example is seen with venetoclax, which generates very rapid and deep responses, but often with residual lymph nodes that are likely just inflammation and scar. These patients might be MRD (minimal residual disease) negative, but may still have lymph nodes, causing them to be graded as a PR. Even though there is no detectable CLL in the marrow, and the patient is likely in a very deep remission, they are a PR because of the lymph node. Overtime, that lymph node often regresses completely and they become a CR with no additional therapy.
Do the trends in immunoglobulins indicate that action may be needed in the near future? At what levels does the immune system become seriously impaired? Apart from some sinus infections, the patient is coping well and carries a normal life.
Trends in immunoglobulins are not an indicator of disease progression, the need for treatment, or risk of infections. Immunoglobulins do fall over time, but there are many patients with markedly low IgG (the most important one) (even one with an IgG of 56) who never have infectious complications. This is why the indications for IVIG or gammaglobulin replacement is based upon history of infections.
I was diagnosed with CLL 4 years ago. I am not high risk and my WBC is stable around 16,000. I recently broke an upper molar which the dentist had to extract. He asked me if I would consider an implant. Because this area is close to my sinus, they want to do a bone graft using cadaver bone to ensure the implant has a solid base. Is this something I should do?
There really are no data that CLL patients will have any increase risk of problems involving dental implants.
Can you explain what complex karyotype is and how it is determined? Can this be determined by FISH testing, so if a patient has multiple mutations by FISH would that qualify as complex karyotype?
Complex karyotyping indicates that more than one abnormality was identified. One has to be really careful with this though, as cytogenetics (generating karyotyping) is not routinely accurate because of the need to stimulate the cells. Some research centers do use stimulated karyotyping, but these are for research purposes mostly. Because stimulating the CLL cells can induce abnormalities that are not real, interphase FISH, which does not require stimulating the cells is used.
I’m waiting for my latest FISH test results. My most recent PET scan revealed a number of swollen nodes within my body so I’ve been advised that I’m most likely looking at needing treatment soon. Are there any new drugs on the trial circuit or possibly nearing trial which show promise of actually placing CLL in a remission state without the need to be taken indefinitely like ibrutinib?
There are several drugs, including venetoclax and obinutuzumab, which can induce remissions without requiring long-term usage. It is also possible that ibrutinib will not need to be taken indefinitely.
I have been treated with idelalisib/rituximab for 23 days and since I started, I`ve had a fever all day ranging between 99.0 and 100.1. My normal baseline temperature is 97.4. My blood and urine culture were all negative. Sometimes I feel my equilibrium is slightly off and I have some slight nausea. My chest x-ray was negative. My AST and ALT are low. I was treated with Augmentin for acute sinus pain, but the fever persisted during the treatment. Should I be concerned? Is it just a drug fever and will run its course?
There are many reasons for someone to have low-grade fevers. These fevers are likely not due to the CLL if they only started with the idelalisib / rituximab treatments. They could be related to either agent or some other low-grade infection. There really would not be anything to do if all of the obvious sources have been ruled out.
Richard Furman, MD is Director of the CLL Research Center at Weill Cornell Medical College and a member of the Lymphoma/Myeloma Service in the Division of Hematology/Oncology. He is a member of the Medical Advisory Board for the CLL Society.
Originally published in The CLL Tribune Q1 2017.