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Questions submitted by readers and answered by the CLL Society Medical Advisory Board
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.
By Richard Furman, MD
Is Imbruvica considered to be a chemotherapy drug? Is it a cancer immunotherapy?
Answer from Dr. Koffman: In the broad sense that all “chemicals” that treat cancer are “chemo,” ibrutinib could be classified as chemo, but in the sense that “chemo” is commonly used, it is not. Chemotherapy is a treatment that kills all rapidly growing cells, cancerous or not. Ibrutinib is a targeted therapy that blocks a specific pathway overexpressed in CLL and has little effect on normal tissues. It is not an immune therapy such as the monoclonal antibodies, though it has some effects, mostly positive on our immune system. Best to think of it as a novel targeted therapy.
I am a 75-year old man and my CLL is well managed on Imbruvica. I need to get IVIG every 8‑12 weeks. Is it safe to get a routine dental cleaning?
Answer from Dr. Koffman: With the proper precautions during the pandemic, there should be no reason not to get your teeth cleaned. As some procedures such as the electric polishing carry a risk of aerosolization, my dentist’s office skipped those. Also, I take prophylactic antibiotics one hour before, so ask your doctor or dentist about that extra level of protection. That may not be necessary.
My platelet count is 63 K/uL and currently asymptomatic. At what point will I have to worry about not being able to take BTK inhibitors, since they can decrease platelet counts?
Answer from Dr. Furman: There is no level that excludes the use of ibrutinib. It depends upon the clinical scenario.
My friend has had CLL with 17P and TP53 mutation for over three years. He entered into a clinical trial at MD Anderson in February 2019 that includes a combo of Ibrutinib and Venetoclax. On his last check-up in Houston, the doctor told him that he is more concerned with the TP53 mutation then the 17P – saying this is more dangerous. My friend is not MRD negative but just had another bone marrow biopsy and he may be now (he was very close before). The trial ends in February and he was told by MDA doctor that he has less than five years before it comes back out of remission.
Over the past few years, we have been to several CLL conferences where they were not so concerned with the TP53 mutation. During one of these, Dr. Susan O’Brien from UCI Health said they are less concerned with this TP53 mutation. Have findings now indicated that TP53 is more of a bad marker then 17P? Is this the new consensus?
Answer from Dr. Furman: Every cell has two copies of every gene (except for men due to the Y chromosome), one on each chromosome. Deletion 17p represents the loss of the short arm of chromosome 17. This area of the chromosome contains the gene for p53, called TP53. The absence of the TP53 gene, or a pathologic mutation in it, will result in the same loss of one copy of p53. What is problematic is when both copies are missing. Many patients with deletion 17p will have a mutation in the other allele, and have both alleles missing. It is also possible, although unlikely, to have mutations in both alleles. These two situations will result in complete loss of p53 protein and its function as a master regulator.
CNN reported a recent large study that showed taking baby aspirin can make a cancer worse. I have CLL though not yet treated, and have taken aspirin daily for 30+ years. Based upon this study, do you feel I should stop the aspirin?
Answer from Dr. Koffman: There are years of research that suggest ASA may offer a small benefit in terms of lowering cancer risk, especially colon cancer. Until any new data is reviewed by experts in a peer reviewed journal, I would be skeptical of anything medical from a commercial news outlet. See this link from the National Cancer Institute:
I have been prescribed Imbruvica but am concerned about the possible side effects. What is your opinion on this medication and its benefits?
Answer from Dr. Koffman: Ibrutinib was approved for mantle cell lymphoma in late 2013 and for CLL in early 2014. In my opinion, it is great drug that has revolutionized the management of CLL. A huge leap forward. Like so many other drugs, it does have many side effects (including some rare and serious ones), but most are usually manageable and get better with time.
I am an 87-year old CLL patient treated with Imbruvica. The CLL booklet says: CLL patients should repeat the pneumonia vaccines every 5 years. How should I space out repeating my pneumovax 23 and prevnar 13 vaccines? Can I get one or both at the same time I get my flu vaccine? Also, which flu vaccine do you feel is best for me?
Answer from Dr. Koffman: The CDC has good guidelines for us on the pneumonia shots. I believe only the pneumovax 23 is repeated x 1 after 5 years if less than 65 when you got the first one. Only one Prevnar shot is suggested. You can get either pneumonia shot with the flu shot, but not with each other.
This is from the CDC:
- Age 19 years or older with immunocompromising conditions (congenital or acquired immunodeficiency [including B- and T-lymphocyte deficiency, complement deficiencies, phagocytic disorders, HIV infection], chronic renal failure, nephrotic syndrome, leukemia, lymphoma, Hodgkin disease, generalized malignancy, iatrogenic immunosuppression [e.g., drug or radiation therapy], solid organ transplant, multiple myeloma) or anatomical or functional asplenia (including sickle cell disease and other hemoglobinopathies): 1 dose PCV13 followed by 1 dose PPSV23 at least 8 weeks later, then another dose PPSV23 at least 5 years after previous PPSV23; at age 65 years or older, administer 1 dose PPSV23 at least 5 years after most recent PPSV23 (note: only 1 dose PPSV23 recommended at age 65 years or older…
As to the flu shot, this is from Dr. Furman: It is unclear whether the high dose or standard dose flu vaccine affords any advantage to CLL patients. The only downside to the high dose is a greater chance of side effects.
That said, you are in the age group where the high dose flu shot is often recommended. Remember no live vaccines.
I am a 69-year old female with CLL, diagnosed 3 years ago in watch and wait. Feeling fine with no symptoms other than low neutrophils/high lymphocytes/compromised immune system. Do you feel I should get the high dose flu shot?
Answer from Dr. Furman: It is unclear whether the high dose or standard dose flu vaccine affords any advantage to CLL patients. The only downside to the high dose is a greater chance of side effects.
I was on watch and wait for 5-1/2 years and have now been on Acalabrutinib for one month. So far, lab numbers are heading in the right direction. Although always prone to canker sores, over the past four weeks I have noticed several of these come, go, and come back again. I take acyclovir which helps lessen the severity of the canker sores. Do you know of a better treatment to help prevent these sores? Do you feel they are attributed to the Acalabrutinib? Will they subside some as my body continues to adjust to the Calquence?
Answer from Dr. Furman: Aphthous ulcers (aka canker sores) are a reported side effect of ibrutinib, but not nearly as much with acalabrutinib. While anything is possible, they may just be related to the CLL and everything else that is going on.
My lymphocytes percentage is 43%. Do you feel I need to take medication?
Answer from Dr. Koffman: Thanks for your question. This is one of the most common inquiries that we receive. Please ignore percentages found in the complete blood count or CBC. Only look at the absolute counts, in this case the absolute lymphocyte count or ALC. Moreover, in CLL, even a very a high lymphocyte count (ALC) is never on its own a reason to treat. We cover this topic with a fun quiz on the CLL Society’s website in this article: CLL: When to Watch and Wait and When to Start Treatment. CLL generally should only be treated when it is causing troubling symptoms or is heading in that direction. Hope that helps.
My Lymphocytes are at 10.8 which is low, my neutrophils are at 82.6 which is high, and my eosinophils are 0.9 which is low. What is this indicating? I have had extreme Benzene exposure (including hours of physical contact with Benzene as a liquid, as well as fume exposure) and don’t know if this could be the reason.
Answer from Dr. Koffman: I assume you are sharing percentages. Please ignore them and only look at the absolute counts. I can’t comment without those absolute numbers, but the percentages would not suggest CLL where the lymphocyte count is high (not low as in your case) and there are many possible causes for what you shared. Again, without the absolute counts, this is really “guess” work.
Benzene increases the risk of some leukemias, but not CLL which is the only blood cancer where our nonprofit provides support and education. Follow-up with your local medical team about your labs. Sorry we can’t be of more help. We are laser focused on CLL.
Following a CBC Diff blood test prior to foot surgery, I was informed my WBC is elevated and I have CLL. Should I take antibiotics before surgery? Should I instead have antibiotics added to my IV during surgery?
Answer from Dr. Koffman: CLL is often incidentally discovered during an unrelated blood draw as it was in your case. Many folks do great for years and many never need treatment. We at the CLL Society are here to help on what is likely to be a long journey.
Antibiotic prophylaxis is often used in orthopedic surgery and antibiotics are used more liberally in CLL patients due their increased risk of a serious infection. You definitely should let your surgeon know that you have CLL and that you are immune suppressed, so that he can take appropriate action. The decision will also depend on the type of surgery.
Is there a shingles vaccine that does not contain a live virus and is safe for a person with CLL?
Answer from Dr. Koffman: Yes, the newer Shingrix vaccine for shingles is a not a live vaccine, and though not well studied in CLL patients, it is very likely safe. It is very effective for those with normal immunity, but we don’t know how well it will work for us. Many CLL patients are getting the new vaccine as the risk/benefit seems positive.
Following a recent blood test, my 19-year old boyfriend (a smoker) was diagnosed with CLL. Considering CLL is more common in older patients, can you estimate the life expectancy for such a young patient at Stage 1? Up to 10 years? Longer than 10 years? Would getting chemotherapy increase his life span? What other therapies would you recommend? How soon should he begin treatment?
Answer from Dr. Koffman: Sorry to hear about your boyfriend. CLL is so rare at such a young age that your boyfriend should really get a second opinion before starting any treatment to confirm the diagnosis. I have concerns that the diagnosis might not be correct, so please confirm. The test to confirm the diagnosis is called flow cytometry. Without that test, the diagnosis is not certain.
Most CLL patients don’t need treatment at time of diagnosis and many never need treatment and have a normal life expectancy.
Moreover, chemotherapy can be avoided for most with CLL as there are several other great non‑chemo therapies to consider.
If treatment is needed, and that is a big if, normal life expectancy is often possible.
Tell him to stop smoking immediately. That will very likely shorten his life.
Please have him get a second opinion.
I am basically Stage 0 for CLL and have been since 2014. I do not have any aggressive markers such as TP-53, Q11, or p17. With all my blood work and symptoms, what is the difference in CLL and Waldenstrom Macroglobulinemia? They sound the same…
Answer from Dr. Koffman: Glad you are doing so well. About ¼ of CLL patients never need treatment and I hope you are one of those. I can see why you asked the question because both Waldenstrom Macroglobulinemia and CLL are cancers of the B lymphocytes and share some similarities in their clinical course and treatment options, but there are distinct cancers with many important differences. When you were diagnosed, your doctor likely did a fancy test called flow cytometry that looks at the classic “immune fingerprint” of the cancerous cells. Assuming that was done, the diagnosis of CLL then would be certain. If it wasn’t done, ask for it. It is a simple but somewhat expensive peripheral blood test.
I was diagnosed with CLL 27-years ago and have been on Ibrutinib for two years. All of my counts are normal except I GG. Do you feel a a cessation or lessening of dosage be considered…280?
Answer from Dr. Furman: BTK inhibitors need to have a threshold of inhibition to be efficacious. A lower dose, as long as it is still therapeutic in the blood, would be effective. The question is, if you are tolerating your current dose, what is the potential benefit to be gained from lowering the current dose.
I would add that the effective dose is 2.5mg/kilogram so for a 70 kilo man, he would exceed that with a daily dose of 280 mg.
I am a CLL patient that was diagnosed in 2014 and had three rounds of FCR in 2018, without achieving remission. My current WBC is 19.6 and Absolute Lymphocyte of 16, with an Absolute Neutrophil count of 0.6. How often is a bone marrow biopsy (BMB) used in the treatment of CLL? Can CLL be successfully treated without this procedure?
Answer from Dr. Koffman: BMB is not routinely required in the management of CLL, but only if there is a specific indication such as a question that needs an answer. Finding out why you have a low absolute neutrophil count might demand a BMB as part of the diagnostic workup if it is a persistent problem and there is no clear cause. It could be just a hangover from the FCR.
What do we know about COVID-19 vaccines and their development regarding CLL patients? Will it be a “live” vaccine? Will CLL patients be able to be vaccinated given that we cannot be vaccinated with “live virus?”
Answer from Dr. Koffman: Multiple types of vaccines are in development, some live and most not. Generally live vaccines are contra-indicated for CLL patients. Some live COVID-19 vaccines may be new “vector” vaccines and we will need to wait to see if these will be safe for immunocompromised folks like us. All of this is in development and the data will change. Almost no research is being done on patients like us with impaired immunity.
Are there additional risks of COVID-19 for CLL patients and care?
Answer from Dr. Koffman: CLL patients are at higher risk for serious outcomes if they need to be hospitalized for their CLL during the pandemic.
What would be your recommendation for a 58-year old CLL patient on watch and wait, when faced with returning as an Instructor for an early childhood daycare program? I would be in a classroom with 10 four-to-five-year-olds who would not be wearing masks, for six hours a day.
Answer from Dr. Koffman: While some CLL experts would likely advise you to follow the general guidelines in your local community as to social distancing, masking, and sanitizing, I personally would not take the risk of entering the classroom unless there was almost no COVID in my county and state. Sadly, some of the data suggest that being younger and untreated doesn’t necessarily translate into better outcomes with COVID-19 for CLL patients.
Here is southern California, schools are not re-opening and I am glad from a safety point of view, though sad for the students.
These are tough personal decisions.
A few days after my first line of therapy (an obinutuzumab infusion four weeks ago), I developed a fever and was hospitalized with neutrophil count around zero for several more days. I am now recovered and must decide whether to restart obinutuzumab (and adding venetoclax later) or switch to Acalabrutinib. Do you feel my neutropenia is likely to be as bad in subsequent infusions of Omab? Do you feel it is more likely to diminish each time?
Answer from Dr. Furman: Neutropenia is a very common adverse event with obinutuzumab. Unlike chemotherapy induced neutropenia, this neutropenia is not due to the neutrophil precursors being killed, but due to the neutrophils being activated and going into the tissues. The first cycles might be worse only because the marrow has significant amounts of CLL. Once there is some clearance, the neutropenia is often lessened. Overall, neutropenia associated with anti-CD20 monoclonal antibodies alone are not typically associated with febrile neutropenia. Hope that helps in your decisions.
Why does Imbruvica increase WBCs at first?
Answer from Dr. Koffman: Ibrutinib blocks the “homing” signals that keep the cancerous B cells in the bone marrow and in the lymph nodes where they are protected, nurtured and reproduce, and send them out into the blood stream where they are more likely to die and they don’t proliferate.
The rise in the WBC is because of this and can last weeks to over a year. It does not mean that the treatment is not working. If the nodes are shrinking and the other counts are improving, there is no need for concern.
I have been on Ibrutinib for three months and for the last six weeks have had constant drooling on the right side of my mouth. Could this be a side effect of Ibrutinib?
Additionally, for most of the past three months I have had a terrible backache with a feeling like I am being pulled through the floor. Is there a known reason for this?
Answer from Dr. Koffman: Sorry to hear you are having problems. Muscle aches are common with ibrutinib and some folks get mouth sores but a terrible backache and drooling on one side need to be worked up and cared for as there are many possible causes, some minor and some serious. Please consult your medical team and get assessed quickly.
My husband will complete a three-year Ibrutinib clinical trial in September and works outside the home, though isolated from others 95% of his workday. School will soon start for our son with the option of online learning vs. physically being in the classroom. The school intends to follow all recommended COVID-19 safety guidelines (i.e., daily sanitizing, use of masks, social distancing, etc.) and is process of installing HVAC technology to promote clean air.
From a medical viewpoint, which of my son’s learning options would you recommend when considering my husband’s condition?
Answer from Dr. Koffman: Tough question! The answer will depend on your risk tolerance. Certainly, at a minimum you need to follow the local guidelines to protect your husband who is quite vulnerable. Please look at our recent review of the literature on this topic: https://cllsociety.org/2020/07/covid-19-severity-and-mortality-in-chronic-lymphocytic-leukemia-cll-patients/
There is no question that online learning would be safer from the COVID-19 perspective for your family, and would be my personal choice today in California, but everywhere the risks are different. And online schooling is not ideal for many students.
Everyone will decide what’s best for the family, but personally I would not chance physically sending a child to school where we live. The risks are too high for me.
What information and specialists can you offer on treatment of Necrobiotic Xanthylgranuloma (NXG) when this disease accompanies CLL?
Answer from Dr. Furman: Necrobiotic xanthylgranuloma is an extremely rare condition that can be found in association with other hematologic malignancies. There really is no information regarding necrobiotic xanthylganuloma and CLL occurring concurrently. There certainly are some treatments that are used in both conditions that might afford control of both simultaneously.
I am scheduled to see a CLL specialist in Nashville soon. Had received Imbruvica for two‑weeks in 2017 and have been okay since that time. However, I am Dep 17/mutated and have lost ten pounds over the past six months. How do I know when it is time to treat the CLL? What questions do I need to ask?
Answer from Dr. Koffman: We have an article on when treatment is needed under our BASIC section, but it sounds as if you need to discuss treatment option with your doctor.
Ask your doctor about what factors he or she is using when deciding about your need for therapy, what testing is planned, and what are the treatment options including clinical trials. Is there a recommendation and if so, why?
Do smudge cells indicated CLL?
Answer from Dr. Furman: Smudge cells are the results of cells breaking apart during the making of a blood smear. They are almost always lymphocytes because they are more fragile than the other cells. A smudge cell itself is not diagnostic of CLL, but in CLL patients they are very frequently seen because of the increase in the number of lymphocytes.
When on the combo treatment Venetoclax (Venclexta) and obinutuzumab, is it recommended to avoid crowds, not travel…all things considered with COVID-19?
Answer from Dr. Furman: The data suggest that all CLL patients are at increased risk regardless of treatment. In addition, Venetoclax may lower neutrophils as might Obinutuzumab which will also kill off all your good and bad B cells, limiting your ability to make protective antibodies. These two drugs theoretically could increase your risk, but the risks are high already for CLL patients who get symptomatic COVID-19. I would avoid crowds and travel now.
I am 23-years old and feel my condition is abnormal. My neutrophils are 81 and lymphocytes are 14. I am suffering from a 99-degree fever, feel very week with body pain. Can you provide some advice on what may be causing my condition?
Answer from Dr. Koffman: With the information you have sent, it is impossible to give any helpful advice other than to see your doctor. There are so many possible causes for what you describe, and your local doctor should be able to help.
I am 80-years old and have had CLL for ten years, awaiting chemo treatment this autumn. My grandchildren are visiting and one has measles. I had measles in the past and have antibodies. Do you feel I am at risk? How should I prevent infection?
Answer from Dr. Furman: Immunity to measles is life-long in those people who had measles as a child. This typically includes everyone born before 1955. It is unclear if vaccination immunity is life-long. It is also unknown whether the immune issues associated with CLL leads to loss of immunity against measles. Since measles is so contagious, and possibly lethal, it would be best to avoid contact with the patient and anyone exposed to them.
I have been taking Imbruvica for 10 months and have now developed gingivitis, a gum condition. Do you feel this is a side effect of Imbruvica?
Answer from Dr. Furman: Gingivitis is not a condition associated with ibrutinib use. Gingivitis is usually the result of bacterial overgrowth along the gum line. I would add that some patients get more sores with ibrutinib.
I was diagnosed with proliferative B cell disease in August 2019 though not enough data to sub classify – mantle cell vs. CLL vs. marginal cell. Doctor felt 99% sure it was mantle cell. Treatment included rituxan and Revlimid. I have now been told I am in remission, but symptoms are back. An appointment has been made for a 2nd opinion as I am wondering if this is really CLL. What do you recommend I do to get an accurate diagnosis?
Answer from Dr. Furman: It is really important to have the correct diagnosis as it helps predict what is the best treatment and what one could expect from the future in terms of prognosis and outcome. Additionally, clinical trials, which possibly offer what some believe to be the best treatments will be available to you only with a correct diagnosis. I would encourage clarifying the issue.
I would add that a true CLL expert 2nd opinion might be able to review or order the proper testing to help nail the diagnosis.
I was diagnosed with CLL Stage 0 in November 2019 and all of my prognostic indicators are favorable. Does this mean I have a lower risk of acquiring another cancer?
Answer from Dr. Furman: The risk of secondary malignancies, with the exclusion of myelodysplastic syndrome (MDS) / acute myelogenous leukemia (AML), is thought to be related to the immunosuppression associated with CLL. This does not correspond to prognostic markers. For MDS and AML, the risks are associated with mostly prior fludarabine based chemotherapy.
Is excruciating back pain normal for a CLL patient?
Answer from Dr. Koffman: No! Please have it assessed quickly by your medical team. Back pain is not a common CLL symptom and there are many possible causes, most but not all, unrelated to CLL.
Are there any natural remedies for fatigue when blood counts are not (too) abnormal and no enlarged spleen or lymph nodes are present?
Answer from Dr. Koffman: Please review the article I wrote on fatigue on the website that I think might be helpful – https://cllsociety.org/2018/09/cll-related-fatigue/
My WBC is 18. When do you believe I will need treatment?
Answer from Dr. Koffman: There is no way to predict when you will need treatment based on a single lab result. On the CLL Society website, we have some helpful articles on watch and wait and when treatment is indicated.
A high WBC is almost never a reason to treat by itself and yours in quite low for a CLL patient.
What would you advise regarding going back to work as an elementary classroom teacher if we are fully in person in the fall? Schools would need to follow DESE guidelines. I have been watch and wait for one year (thus far) with a 38000 WBC.
Answer from Dr. Koffman: The data are thin and premature, but it does seem at this moment in time that young and untreated CLL patents are at similar high risk of severe disease as those who are older and have had therapy. There should be more data released soon that should help clarify your choice.
Unless you can have similar PPE as a healthcare provider, I personally would not return to work. Too risky if you have CLL. Others who are more qualified than me might disagree.
I am a mutated, predominantly trisomy 12 patient who was treated two years ago with obinutuzumab. I am now considering options for my second treatment; however, am concerned how much the discovery that I have the BIRC3 mutation should factor into that choice. Prominent consideration has included the use of Ibrutinib though I recently came across an article in Haematologica 2020 addressing the clinical implications of BIRC3 mutations in association with this medication. How would the presence of the BIRC3 mutation factor into your recommendation for treatment with Ibrutinib vs. Venetoclax?
Answer from Dr. Furman: BIRC3 mutations do not factor into my treatment decisions. While we have data on BIRC3 mostly impacting time to treatment, there are no data that it predicts for a worse outcome with either ibrutinib or venetoclax. Additionally, disease progression is still the most important indicator of when to treat, so the BIRC3 mutation should not impact timing of treatment as well.
A rash developed on my shoulder which a dermatologist stated looked like lupus rash. It is now getting larger and a couple other spots are appearing as well. I have an appointment scheduled for further review; however, a nurse who works dermatology indicated it may be mycosis fungoides. Do you feel it is rare for a CLL patient to also develop mycosis fungoides, considering it is a T cell lymphoma?
Answer from Dr. Furman: Mycosis fungoides is a very rare lymphoma and is unrelated to the CLL, as best we can tell. We do typically see an increase in second cancers in patients with CLL, and this would fall into that category. Fortunately, both can be treated simultaneously if necessary.
I have CLL with slightly elevated white counts and am immunocompromised. Should I consider delaying returning to my workplace (school system), even though they will be partially opening? I am concerned about exposure within crowded classrooms and hallways.
Answer from Dr. Furman: Working with the PPE is safe for everyone. We don’t know how much longer the COVID pandemic will be with us, nor the relative risk based upon rise and falls of new infections. As such, following your school’s guidelines and, if desired, N95/face shields, will provide necessary protection.
Additional information from Dr. Koffman: Let me add that Dr. Furman is referring to N95 masks that are different than the more commonly available surgical or cloth masks that are used primarily to protect others from you, though they do provide some real protection to the wearer. A N95 mask, properly fitted, along with a face shield protects you at a significantly higher level.
These are difficult individual decisions that need to be made with your treatment team. Consider how practical will it be for you to consistently use PPE and proper precautions.
Does IVIG have any role to play in the treatment of AIHA secondary to CLL?
Answer from Dr. Koffman: IVIG can be and often is used for AIHA in CLL, though it a “non‑remitting” therapy. In other words, it may control the auto immune process temporarily when the levels are high enough, but it does not lead to knocking the process back (a remission) as can happen with rituximab or cyclosporin and other options where the treatment can be stopped with the realistic hope that the AIHA won’t return.
Having a CLL expert on your team can help with a potentially serious complication such as AIHA. If that is difficult in your circumstances, consider our free Expert Access Program.
My CLL has been in remission for 14-years, but my immunoglobulin numbers are always below the bottom of the ranges. What is your opinion about my starting Immunotherapy?
Answer from Dr. Koffman: Both low immunoglobulin and recurrent serious infections are the indications for starting immunoglobulin replacement therapy. You need both to qualify according to most doctors.
My neutrophil count was driven to zero by my first Obinutuzumab infusion. How low is the neutrophil count “normally” driven by the first Omab infusion? Also, if it is driven to zero, how do doctors get the neutrophils back up to a safe level again?
Answer from Dr. Furman: There is no normal level for the neutrophils to fall to while someone is receiving obinutuzumab, it is just typical for the neutrophils to fall due to the interaction of the obinutuzumab with receptors on the neutrophils. This interaction does not kill the neutrophils, but activates them, pushing them into the tissues.
Is there any connection between CLL with ulcerative colitis?
Answer from Dr. Furman: There is no connection between IBD and CLL.
Immunophenotyping from a recent bone marrow biopsy (BMB) shows my B cells are “essentially negative” for CD20. Does this mean that CD20-directed antibodies like Obinutuzumab and Rituximab would not be effective treatment options?
Answer from Dr. Furman: There are actually no data regarding the efficacy of anti-CD20 monoclonal antibodies in patients who have loss CD20. We do assume the antibodies will not be efficacious given the loss of CD20.
I was diagnosed with CLL eight years ago, am being monitored and still Stage 1. Recently I developed an exaggerated response to insect bites and found literature indicating this is not uncommon for CLL patients. I have many dozens of bite-like lesions on my arms, legs, back and torso, some lasting more than seven months. Dermatologists have prescribed external analgesics which mostly have been ineffective. Is there anything you could recommend that would provide some relief from the pain and severe itching?
Answer from Dr. Furman: Exaggerated immune response to insect bites is a problem that we see with CLL patients. There are some treatment options that might work. In general, I suspect there are several different causes of the response and which intervention helps is in part related to the cause, and if no cause can be found, trial and error. Treatment can include anti-CD20 monoclonal antibodies and BTK inhibition.
I am 64-years old and have been on watch and wait for five years with an ALC around 210,000. A prostate biopsy has indicated significant infiltration of CLL cells throughout my prostate, though it appears that CLL infiltration in the prostate is somewhat rare. My prognostic markers indicate that my frontline treatment will likely be a BTK inhibitor. Will the BTK inhibitor “flush out” my CLL cells from the prostate like it does for your lymph nodes and spleen?
Answer from Dr. Furman: CLL cells will infiltrate every organ in the body. Prostatic infiltration with CLL is actually common and is of no consequence.
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.