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
- The reference value of lymphocyte here is 0.20-0.35 but my result is 0.40, and monocytes reference value is 0.02-0.06 but my result is 0.01. Is there any problem with my result?
Answer from Dr. Koffman: It’s difficult to give advice based on the partial results you shared, but the tests are only mildly out of normal. I would ask your doctor to follow-up with a repeat blood count and discuss the results with him or her if they are of any significance.
- How often should I have blood test for white blood cells and lymphocytes? I am in the watch & wait stage and was diagnosed with CLL in January 2019.
Answer from Dr. Koffman: The answer depends on the trend of your counts. If you are stable and feeling well, every 3- 6 months should be fine; every longer if it’s been stable for years.
If it’s changing or you have symptoms, your doctor may want to see you and check labs much more often.
- I have gout in my knee and hands and have stopped taking ibrutinib temporarily. What medication would you recommend for this condition?
Answer from Dr. Koffman: Gout treatment involves multiple drugs to treat the different aspects of the disease. Allopurinol is often used to lower the uric acid and is generally safe in CLL. Various meds can be used for flare prophylaxis and treatment and that choice would need to be individualized. This decision really needs to be discussed between your hematologist and rheumatologist.
- Is there any treatment for low IgA/IgM for CLL patients? I’m RAI 0 and my IgG is 1186; IGa is is 16 and IGm is under 10. I have a chronic, upper respiratory sinus infection and cough that inhibits leading a healthy day-to-day life. It subsides with a monthly IVIG but recurs within 3 weeks and is in full force by the 4th week. I’ve taken antibiotics in the past which temporarily work, but it always comes back. Is it common for CLL patients to have this problem and what are the best ways to approach it? I hope this question is generic enough that a response would be helpful to others as well!
Answer from Dr. Furman: IV IG only contains IgG, which is the most important immunoglobulin. We really don’t have any means for increasing IgA or IgM.
Regarding the sinus infection, there are possibly some anatomical or other interventions that could be done that might be helpful.
- I am a 68-year-old female diagnosed in July 2020. Oncologist is 3-1/2 hrs away. Recently experiencing indigestion, burning sensations and fullness with frequent burps. (Yuck!) Should I see the oncologist about this or my local family doctor?
Answer from Dr. Koffman: CLL can cause many GI symptoms from enlarged nodes and the spleen pushing on the GI tract, but so can many other more common untrelated problems. I would start with your local doctor and remind him or her of your CLL and let the doctor decide if your oncologist needs to be involved.
- I just watched a seminar from Canada for the Lymphoma Society that immune compromised patients should have taken the Viral Vector vaccine. Is the Pfizer vaccine a Vector vaccine? I have CLL.
Answer from Dr. Koffman: Thanks for the question. The Pfizer and Moderna vaccines are mRNA vaccines and should be safe for all CLL patients, as are the viral vector vaccines such as AstraZeneca/Oxford and Johnson & Johnson. Most CLL doctors say take what you can get, though some prefer their patients get the mRNA. There are no data on efficacy or safety in CLL, so it is all conjecture.
Please check out my article on vaccines for CLL patients: https://cllsociety.org/2021/01/cll-societys-official-statement-concerning-sars-cov-2-vaccine-in-cll-patients/
It should answer most of your questions and explain the difference in vaccines.
- Diagnosed with CLL July 2020. “‘Watch and wait“ diagnosis then and confirmed again February 2021. Question: is there a vitamin supplement program suggested to combat it to lessen the chance of it progressing?
Answer from Dr. Koffman: No vitamin has been shown to slow the progression, BUT those who are replete with Vitamin D at the time of diagnosis do tend to do better. That does not mean taking Vitamin D slows CLL but do check your levels and make sure you are well above the lower acceptable limit.
Also, a Mediterranean diet and exercise is associated with better outcomes.
- At what point do you start treatment ? My WBC is 65000.
Answer from Dr. Koffman: The WBC count almost never determines when you need to start treatment. Please take look at this article: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
It should answer your questions.
- I’m a CLL patient diagnosed in 2017, del(13q)+unmutated+Notch1, FCR in 2018, now in remission. Is the combination Venetoclax and obinutuzumab advised as treatment when my remission ends?
Answer from Dr. Koffman: The combination Venetoclax and Obinutuzumab is certainly one strong option worth considering in discussion with your treatment team, though it would be “off label” as venetoclax is approved for use with rituximab in the relapsed setting. There will be other good choices too, but hopefully you won’t be facing a decision any time soon.
- I would like to ask something about my Lymphocytes. I got the result of 0.53 and I don’t know what it means. Can someone help me with this?
Answer from Dr. Koffman: I assuming that the 0.53 refers to the absolute lymphocyte count (ALC). If so, that would be low. There are many reasons for a low ALC from treatment for CLL to infections and side effects from some medications. This is best discussed with your doctors.
- I was diagnosed with CLL/SLL in 2013. W&W since. Have had visible enlarged nodes since August 2019. Had needle aspiration of Rt axillary today which has continued enlarging. Why? What is the purpose? What results can I anticipate?
Answer from Dr. Koffman: I am not sure why you had the biopsy and without knowing more of your history, I would be just guessing. Lymph node biopsies or aspirations are rarely done in CLL unless there is a particular node that seems to be growing more rapidly than the others, and there is worry that might have transformed into a more aggressive lymphoma. This is called Richter’s Transformation (RT).
I asked lab scientist, Dr. Leclair, and she also agreed that except when there is a concern about RT or some other cancer, node biopsies or aspirations are usually not done. Again, we don’t have all the facts, so we are not making any specific recommendations or comments related to your particular case.
Please consider getting a second opinion for your overall CLL care.
- If after 2 doses of the Moderna vaccine, is there a serology test to determine if a CLL patient has achieved immunity to SARS-CoV-2 ?
Answer from Dr. Koffman: Thanks for the question. Elecsys® Anti-SARS-CoV-2 S test specifically detects antibodies against the SARS-CoV-2 spike protein that should be seen post vaccination. Other tests may also be available to specifically look for the spike protein. The more usual antibody test used post natural infection looks for antibodies to nucleocapsid (N) protein and should not be used as it would not be expected to rise after vaccination.
That said, there are no data in CLL patients to suggest that presence of antibodies confers protection, or even lack of antibodies means no immunity.
- I am 17p deleted and have been on IB for two years. My LKC count has gone down steadily, and I want my doctor to do another FISH test. Is this a reasonable request? Could my genetic markers have changed? What about the NGS – is it better than FISH?
Answer from Dr. Koffman: FISH and NGS results can change over time so repeating them makes sense but usually only when there is a treatment decision upcoming. That said, I think it is legitimate to want to know how your CLL is evolving.
The two tests look for different markers, so we recommend doing both.
It is rare for del 17p to disappear unless the CLL disappears or nearly disappears. If there is very little CLL detected, the 2 tests can be less accurate.
- I am currently receiving Truxima infusions every 8 weeks to reduce my lymphocyte load. This treatment began this past summer. Would you recommend that I receive the Pfizer Covid vaccine despite the likelihood that Truxima infusions further weaken my immune response?
Answer from Dr. Furman:
This is for the person’s physician.
I would add consider getting a second opinion as the use of Truxima to “to reduce my lymphocyte load” is not a usual therapy and in consultation with your medical team, could be stopped.
- If you get Hodgkins lymphoma after a CLL diagnosis and treatment, is it curable, or is it chronic, much like CLL?
Answer from Dr. Furman: Hodgkin lymphoma represents 5% of the cases of Richter transformation. It is treated the same as Hodgkin lymphoma not associated with CLL and has the same outcome and prognosis.
I would add that I urge you get a second opinion.
- I have been dealing with a skin rash under my breast and now under my stomach. The dermatologist gave me cortisone cream and antifungal cream. It seems to be getting worse. I have been using the cream for about one month. The cream clears up the rash but it comes back again. Are CLL patients at risk for yeast infections that are hard to treat?
Answer from Dr. Furman: Here is the answer from CLL expert Dr. Rick Furman at Weill Cornell, NYC.
There are no data that CLL patients in general are more at risk for difficult to treat skin conditions.
- I was diagnosed with SLL/CLL in 3/2014. Since beginning treatment with ibrutinib in January 2018, I have had multiple periodic Afib events. My numbers seem to be stabilized – in the normal range at this time. Would it make sense to change to Acalabrutinib in order to minimize Afib? I have 17-P deletion, if that helps with your response.
Answer from both Drs. Furman and Koffman: We recommend that you have a discussion with your physician about switching.
- Do you know if there are any germline studies currently being conducted? I did see your interview with Dr. Brown several years ago. I have 17p deletion, unmutated CLL. My mother died from CLL at age 70 five years post diagnosis with aggressive disease. She had 7 siblings, all died of cancer, her father of polycythemia Vera (actually died of PE). Just curious of studies, and how can I enroll. Currently in treatment at Hopkins.
Answer from both Drs. Furman and Koffman: Sorry, but neither of us know of any such research.
- My mother is a CLL patient whose weight is around 90 pounds. She still is on wait and watch but is getting there, and the doctor recommends ibrutinib. My question is as a starting dose, does she have to start with 420 mg – or – can she use the 2.5 times your weight formula – or – does this apply only after starting off on full dose of 420 mg?
Answer from Dr. Furman: The current recommendations are to always start with 420 mg daily of ibrutinib and dose reduce based upon side effects. The dose of 2.5 mg/kg of body weight is the minimum dose necessary to inhibit BTK, but there is always the possibility of variability. This is a decision to be made in discussion with your physician.
- I participated in the CAR-T clinical trial at the SCCA during the summer of 2018 shortly after Dr. Koffman. I have two questions: Is it safe for me to take the COVID vaccine – and – is it safe for me to curtail taking Imbruvica?
Answer from Dr. Koffman: Welcome to the post Seattle CAR-T club. Hope you are doing great. Thanks for the question. I assume you mean 2018.
Without knowing more details about your present labs and disease status, it is impossible to give any specific advice. Generally, it should be safe to get vaccinated this long after CAR-T assuming your counts have recovered. How well you will respond is not predictable. If your CLL is no longer detectable, stopping ibrutinib is something worth discussing with your treatment team. I stopped mine and so do most patients who have undetectable measurable residual disease (uMRD). Talk to your treatment team about this choice.
- I have CLL and now having joint and muscle pain. What must I do for the pain?
Answer from Dr. Koffman: There are many causes for muscle and join pains, some related to CLL and the medications used to treat it, and most unrelated.
You should first have the cause of the pain diagnosed by your local doctors in order to then recommend the best treatment options.
- The count of lymphocytes 44.20 indicates what? Is there is any problem?
Answer from Dr. Koffman: Assuming that the 44.20 refers to the absolute lymphocyte count and not the percentage of lymphocytes, it indicates a high count that needs to be worked up. CLL is certainly a possible diagnosis, but your local doctors can best guide you as to any underlying issues.
- CLL patient, had CT scan, enlarged spleen, and retro peritoneal lymphadenopathy and lymph nodes behind abdomen. Is this worse than CLL – and – what is the prognosis and treatment?
Answer from Dr. Koffman: Sorry to hear of your concerns. CLL is often associated with enlarged lymph nodes throughout the body and with an enlarged spleen. It is an important aspect of your CLL but is just one of the many factors that will determine your disease’s course and its management.
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.
- Can CLL metastasize to the bone?
Answer from Dr. Koffman: Being a blood cancer, CLL is nearly always present in the bone marrow. It does not usually cause damage to the bone as seen with other cancers that may metastasize to the bones such as can occur in lung or prostate and other cancers.
- I am newly diagnosed with CLL, discovered during blood work for breast cancer (DCIS). I wanted to know if I need to fly (from Hawaii) to see a CLL specialist or is my regular oncologist (he specializes in hemoglobin) going to know how to treat me.
Answer from Dr. Koffman: Sorry to hear of your double cancers. We always recommend having a CLL specialist on your team.
I think you would benefit from our free online Expert Access program that would allow a CLL expert to review the medical records, and then provide a 30-minute HIPAA compliant online visit with that expert to answer questions and to provide ideas and notes to take to the local treating doctor.
A diagnosis of CLL and USA residence are the only requirements.
Here is the link to apply: https://cllsociety.org/cll-society-expert-access/
- Should all CLL patients get an antigen or antibody test after receiving both vaccinations and how long after should it be administered?
Also, can you tell me why quantitative tests [for example, ‘LabCorp’s Cov2Quant IgG test, which was developed to specifically detect and quantify antibodies to SARS-CoV-2 (but) is available only for use in clinical trials and research’] are not available for the immunocompromised? This is a group it would seem is needing to know the level of the immune response and protection the vaccines created – assuming the 95% effectiveness announced wouldn’t apply?
Answer from Dr. Koffman: Most CLL experts do not recommend testing antibodies after vaccinations as we don’t have any data on how the test results correlate with immunity and protection and should not make a difference in how you should behave. Moreover, you would need to order the specific test to the spike (S) protein and not the usual antibody test to the more commonly ordered nucleocapsid (N) protein to specifically check for the response to the vaccine.
That said, CLL Society is working with several researchers to assess our B and T cell response to the vaccines, so please pay attention to our website as we announce how to enroll in the trials.
- I have been in a watch and wait period since February 2018. I have 11q deletion CLL/SLL, un mutated IGH V, and am 64 years of age. My oncologist (not hematologist) has provided the options of BR or ibrutinib. I need to begin treatment soon – I have VERY enlarged lymph nodes, etc.
Answer from Dr. Koffman: Thanks for your question. With your markers (see CLL Society’s articles on Test Before Treat), under most circumstances you would be much better off with ibrutinib.
Ibrutinib works exceptionally well with del 11q and helps shrink nodes. BR is less effective in patients with your markers.
- I’ve read through your site and have a question about alternatives. Have you looked at any of the ‘natural’ things that might help with CLL like Keto, or taking higher doses of Vitamin D3 and Curcumin, etc., or is that all voodoo? I was on Keto for 3 years and my levels stayed steady but when I went off and ate like a madwoman during the first global year of coronavirus, my levels almost doubled from December 2019 to July 2020. I’m wondering whether this is because of the absolutely abdominal diet of junk food and all sugar infested goodies I have eaten or was I just unlucky. My hematologist said that neither diet nor stress has any effect on CLL. I’m skeptical of that position. Any insights you can offer me would be welcome.
Answer from Dr. Koffman: Thanks for the question. Folks replete with Vitamin D3 at time of CLL diagnosis tend to have less aggressive disease, but that doesn’t mean that taking Vitamin D will slow the CLL once you have it. Still, we recommend that you check your blood level and take what you need of D3 to be in the normal range. The data on curcumin is very weak. There is some data on a green tea extract, ECGC having a mild benefit. We have several posts on it including this: https://cllsociety.org/2016/04/37-trillion-reasons-eat-healthy-diet/. I generally do not recommend it.
A Mediterranean diet has been shown to be best for CLL. It’s best for almost everything health wise. (See: https://cllsociety.org/2018/09/the-impact-of-diet-on-cll/). Sugary diets are not healthy with or without CLL, but I wouldn’t beat yourself up. CLL blood counts can go up and down for no reason at all.
Stress doesn’t help anything, but I know of no data about it in CLL.
Exercise has generally been shown to improve survival for many cancers.
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.
By the way, personally I am vegan (some fish), drink lots of organic green tea, and take Vitamin D3 daily.
- On higher side, what count of lymphocytes is dangerous for blood cancer?
Answer from Dr. Koffman: Thanks for the question. In CLL, in most circumstances there is no dangerously too high lymphocyte count. We cannot answer for other blood cancers.
- I completed chemotherapy for CLL 4 years ago. Since then, I have been doing SCIG therapy weekly. I am wondering if now that my CLL is not active, as shown by lab tests and no symptoms, might I be able to generate my own immunoglobulins? My immunoglobulin numbers are stable-at least IgG and IgM are, IgA still low-while I am taking SCIG, so I’m thinking no, but thought I would ask. Also, am I probably making some normal lymphocytes?
Answer from Dr. Furman: Thanks for the question. The decision to continue or discontinue IVIG/SCIG should be based upon the initial indications for starting it and the recent treatments. Many patients who are on IVIG/SCIG for recurrent infections can do well off of the IG replacement therapy.
- I live with a man who has CLL. What should I be most concerned about, or watch for, when he won’t tell me anything?
Answer from Dr. Koffman: Sorry to hear of your dilemma. CLL is very variable. For many it is very slow growing, and for some it may never even need treatment. In others it can be more aggressive.
All CLL patients are immunocompromised, so infections including COVID can be very dangerous and need to be taken seriously. We are also at higher risk for second cancers, so proper screening, especially for skin cancers is important.
The most important thing is that he get a true CLL expert to guide his care. Expert care is so critical. Saves lives. We have a list on the website. And learn what you can about the disease. Start with our FAQs and review the BASICS on our website.
Would he join one of our support groups? You could attend. Many caregivers do. They are all virtual now.
- Should I be extra concerned that my WBC dropped by 77,700 in a two-week time span? On December 7,2020 it was 150,000, though on December 21 it dropped to 72,300. My Onc/Hem said he didn’t believe it was correct. On January 4, 2021 it was 87,700. The Onc/Hem then said to repeat it on February 1. All labs are done at same local hospital (lab). I feel like I was dismissed with no explanation/concern.
Answer from Dr. Furman: The WBC can jump in response to any physiologic stress, most notable infection. This jump can be extreme, and the WBC will return to the baseline or lower afterwards. This is one of the reasons Dr. Rai in the Rai staging system emphasizes the hemoglobin and platelets are more important than the WBC in assessing need for treatment.
- It seems like the general recommendation is that we CLL patients should get the Sars-CoV-2 vaccine. I personally have had warm AIHA 03/2017 treated with Rituximab (Rituxan) intravenously and I am still in remission. My lab results November 2020 were the best I have had since my diagnosis December 2008.
CBC normal except for:
-Thrombocytes 153 (160-390 x10*9/L)
-Haptoglobulin 1,2 (0,24-2,2 mg/L)
-beta 2 mikroglobulin 2,7 (0,8-2,2 mg/L)
My doctor says I am a slow poker. I feel fine but I have to get IVIG every 4 weeks. I do not have any (own) production of Ig G. I have been treated with reduced FC (only 2 days and 5 cycles) from October 2012 to February 2013. Do you know if the CLL experts associated with the CLL Society even recommend patients who have had AIHA to get the vaccine?
Answer from Dr. Furman: I do believe everyone should be vaccinated. The risks associated with the vaccine, even with a history of AIHA, are less than those from being infected with COVID-19.
Please check out my article on vaccines for CLL patients: https://cllsociety.org/2020/11/dr-koffman-on-covid-19-vaccines/
It should answer most of your questions.
- Diagnosis with CLL on 03/12/2018. Two ago weighed 165lbs. – on 01/16/2021, 1 I am 130 lbs. What can I expect because my doctors don’t really have a real answer?
Answer from Dr. Koffman: Unintentional significant weight loss can happen but is not that common in CLL. Be sure you are worked up to rule out other non-CLL related causes of the weight loss.
- Any studies using Venetoclax as mono therapy in 17 p deleted, unmutated, untreated patients?
Answer from Dr. Koffman: There are multiple trials in CLL with venetoclax, most in combination, but some as monotherapy on clinicaltrials.gov.
- Is CLL the same as Non=Hodgkins Lymphoma? This consistently confuses me.
Answer from Dr. Koffman: CLL is one type of the many different types of Non‑Hodgkin’s Lymphoma (NHL).
- I received an “Earthing Mat” as a gift (bed sheet size) and have used it but am concerned. Is it okay to use with CLL? I am 86-years-old and have had CLL since 2011. Had virtual visit with Dr. LaManna, on watch and wait.
Answer from Dr. Koffman: Sorry, but I know of no research on earthing mats and CLL. Hard to image how it could have any positive or negative effects, but I just don’t know enough to advise.
- My doctor just informed me I had chronic Leukemia; said my blood count was 8.2. What should this number be? I have no symptoms and am feeling fine.
Answer from Dr. Koffman: There are two common chronic leukemias – CLL and that is what we are all about, and CML which is entirely different. You need to know which. Both are slow-moving and many folks die with the disease, not from it.
Assuming it’s CLL, then welcome to our club that no-one wanted to join. Watch our welcome video on our home page at www.cllsociety.org.
I am not sure which count is 8.2 but if it’s your lymphocyte count, that is slightly high but of no clinical significance. High lymphocyte counts are usually not important in CLL.
The most important thing you can do is get a true CLL expert on your team – we have a list on the website. Then sign up for our weekly Alerts – read the website to get smart about the disease. Listen to Dr. Kay’s webinar on newly diagnosed CLL. Join one of our virtual patient and caregiver support groups
Most patients feel fine and don’t need treatment when diagnosed, or many never need treatment.
- I was diagnosed with CLL in August of 2018. My oncologist and I have been monitoring my blood every 6-8 weeks. My initial WBC was 49K. It has slowly increased and is now at 217K. Treatment is scheduled to begin on January 8, 2021. Over the past 3 nights, my temperature has spiked to 101. I feel pretty good during the day but have quarantined myself to a bedroom in my home, which only my wife and I occupy. I received a negative COVID test result on Monday, and a negative flu test result on Wednesday. My question is what else could cause such a spike in temperature and am I contagious? Thank you in advance for your prompt response.
Answer from Dr. Koffman: Thanks for the question. First, I am not sure why you are starting treatment. A high white count is not an indication to treat.
There are many reasons for a fever including the CLL itself, but infections are common and need to be ruled out, usually in advance of treatment as most can lower immunity.
- I was recently diagnosed in October of 2020, as a result of an annual health screening. I have always been a very healthy person, rarely have I been sick in my life. Since my diagnosis I don’t know what is normal and what is not. I was told I was in stage 1 as my numbers were just above abnormal, but apparently my peripheral smear showed CLL. I had a flu shot (left arm) in November, and my lymph nodes on that side along my clavicle swelled up and were very tender. I have never experienced this before. I received my 1st COVID vaccine last week and the lymph nodes swelled up again, but this time on both sides.
I find myself wondering with all aches and pains or lumps and bumps, what is normal and what is not normal, what is CLL related and what is not. I am really struggling with wrapping my head around “watch and wait” but do understand this. I am looking for information to read about what is normal and what is not…when to reach out to a doctor etc…
Answer from Dr. Koffman: Glad you were vaccinated. Swollen nodes after vaccines or any infection, or even an insect bite, are common with CLL. Your response suggests that your immune system responded which is very good news.
Lymph nodes also can go up and down for no good reason.
Fatigue is a common symptom. But not all symptoms are from CLL and other common medical problems for age and gender can still occur and cause problems.
Consider joining one of our CLL support groups to learn from other patients about their experiences. They all meet virtually these days.
- I was told by a doctor if you have CLL and contract COVID-19, you could stay contagious for a long time if you still testing positive after 30 days. Is this true? Doug has COVID but no fevers or anything. I thought after 20 days, critical care was no longer contagious. He was never put in hospital.
Answer from Dr. Koffman: Some few patients, especially immune compromised patients, may shed the virus long-term, even those who have few or no symptoms. The best way to be more sure is to have Doug screened – that he is no longer carrying the virus in his nose, though even that is not 100%.
- I was just diagnosed with CLL October 29, 2020. I have now been diagnosed with COVID. My primary doctor was on vacation – I went to the emergency room. I felt they didn’t want to treat me due to having leukemia. Then my doctor’s office connected me to an on‑call doctor, when again, I felt they didn’t want to treat me. They told me to go to the emergency room. Then I called my oncologist – she told me to call my primary doctor. The emergency room gave me a Zpak and cough medicine. I asked each one about getting the antibody treatment – no one wants to give it to me. They keep passing me on to some else. Can you be of help?
Answer from Dr. Koffman: Sorry to hear of your struggle to get the monoclonal antibody (MAB).
This is a message about the importance of having a COVID plan in place, but it sure doesn’t help when your doctor is on vacation.
The antibody can be hard to come by and I have no inside track to get it, but I have heard that some pharmacies are offering this through home infusions so I would work on that angle.
This link to the Minnesota Department of Health includes a screening tool on Page 3 as to whom qualifies to get the MAB, which of course includes you, and might be helpful ammunition in your fight.
I would be relentless and call everyone. Call the manufacturers too.
Make sure you are replete with Vitamin D, getting plenty of sleep and good nourishment, and keep the stress level low.
That said, many CLL patients have mild disease and do well.
- My husband is in the middle of a CLL clinical trial of obinutuzamab and imbruvica. We are unsure if getting the COVID vaccine now will be effective or if he should wait until the obinutuzamab portion of the trial is over. That would be another 3 months, and then some time before his immune system begins to recover. We are seeing different opinions on this. Some say the vaccine will offer some benefit, while some say because of the obinutuzamab, the vaccine won’t offer him any benefit at all. We are not worried about the safety of the vaccine, only concerned that because of this treatment, it may not be the right timing. What is your opinion on getting or not getting the vaccine in this case?
Answer from Dr. Furman: Many patients are on different treatments during this period. We don’t know whether any of these treatments will impair the immune response to the COVID-19 vaccine. While we have some anecdotal evidence of BTK inhibitors helping prevent severe COVID-19 illness, the clinical trial data are still emerging. The acalabrutinib trial in COVID-19 (non-CLL patients) did not show a benefit, but there were some issues with that trial that might not make it generalizable to everyone. I suspect that BTK inhibitors do help and have been continuing my patients on them. With regard to the vaccine, any temporary interruption will likely not be sufficient to make a difference and I would recommend just continuing the inhibitor. I am also recommending the same for the PI3K inhibitors and venetoclax. Anti-CD20 monoclonal antibodies would be different, and it might make sense to defer vaccination until after therapy is completed if there is an option.
Answer from Dr. Koffman: I would add that this is area where there is limited data and conflicting opinions, so you need to check with your doctors as to your particular circumstances.
Please also check out my article on vaccines for CLL patients: https://cllsociety.org/2020/11/dr-koffman-on-covid-19-vaccines/
It should answer most of your questions.
- I am experiencing memory issues and went to a specialist. The neurologist confirmed
(after an 8-hour test) that I definitely have cognitive problems. Does CLL cause this? The doctor really does not know why I am experiencing the issues.
Answer from Dr. Furman: No, it is not from the CLL.
- Since we have advanced so much in treatments for CLL, is there any known consideration for treating Watch n Wait? If having CLL increases chances for other cancers, wouldn’t it be prudent to treat CLL, regardless of the stage?
Answer from Dr. Koffman: Thanks for the question. There is no evidence that early treatment improves outcome, though it is being studied in patients at high risk for aggressive disease. Also, there is no evidence that treatment would lower risk of second cancers as they generally don’t improve, and some may worsen immunity.
- Does the percentage of Igvh mutation have any significance if you have mutation status? Or in other words, the higher the percentage, the better the outcome? Also, same question for the 13q deletion. Does the higher percentage indicate worse prognosis?
Answer from Dr. Furman: The majority of the data only assessed prognosis from the perspective of unmutated (less than 2% mutation) and mutated (greater than 2% mutation) and demonstrated mutated had a better prognosis than unmutated. Some investigators have looked at mutation as a continuous variable and did find more mutation indicative of a better response than less mutated (but still mutated), although these data are not robust. Mutation rates over 2% are associated with a better prognosis.
- Thank you for the CLL Society statement regarding COVID 19 vaccination. Is there utility in checking antibody titers following vaccination to see if there is adequate response? Would this allow the return to work and other activities, maintaining precautions, as long as they are relatively low risk environments? And is there availability of this testing? (Reported as part of the studies but do not know if it is available for routine patient care.)
Answer from Dr. Furman: We do not have any data regarding the role for checking titers after vaccination as a means for predicting protection. Protection from viruses come from antibodies and T cells, so it is theoretically possible that even without antibodies there might be some protection. Most people’s titers to COVID-19, as well as all viruses, do fall over time but that also does not mean protection is lost. The cells needed to make them are likely still there and ready to respond when needed.
CLL patients might be a different story, as we see longer time periods for viral shedding and less antibody production. We don’t know whether a different schedule or repeated vaccinations will make a difference.
Answer from Dr. Koffman: I would add that it is possible to ask your doctor to order a blood test to check antibody levels after vaccination as commercial tests are readily available, but as Dr. Furman points out, we really don’t know how the results translate into protection.
- Immunoglobulin treatment and CLL – is it possible that this treatment is not effective? I got two infections right after it. (Rarely any infections before.)
Answer from Dr. Koffman: Immunoglobulin or IVIG treatment is only indicated if both your level of IGG is low and you are having recurrent infections, so I am not sure why you were getting it in the first place – if you rarely had infections. If it was prescribed for infection control and it’s not helping, discuss with your doctor stopping especially because it is very expensive, in short supply, has potential serious side effects, and requires a trip to the hospital or infusion center, especially fraught in December 2020 in the middle of a pandemic.
- 1am 73-years-old with CLL, 5 years on watch & wait. I have a question on a recent 3‑month follow-up lab test (results are shown below). What is the significance of:
-Bilirubin @ 255
-Lymph’s @ 79.8
All of these numbers went down from 3-months, as did my ‘immature granulocytes’ from 1.0 to .2. Can you explain the granulocytes implication?
Answer from Dr. Koffman: Without having a lot more information about your past and present labs and your clinical conditions, we can’t answer these questions. What I can say is in general, ignore ratios and percentages and concentrate on the absolute numbers. In most (not all), they are all that really matter. If they are okay, no worries.
- What is the mortality rate of CLL patients diagnosed with COVID-19?
Answer from Dr. Koffman: Thanks for your question. The news is not good. See:
BAD! However it is improving: See: https://www.nature.com/articles/s41375-020-01030-2
CLL Society is helping with some not yet completed research that suggests as of the end of 2020, the mortality rate might be much lower, but is still too high.
We are working on all this.
- Has the latest research on CAR-T made improvements in the reduction of the side effects?
Answer from Dr. Koffman: Please take a look at our CAR-T Tribune for some answers here: https://cllsociety.org/car-t-special-edition-volume-6-issue-4/
The Transcend Study reported at ASH showed less tumor lysis syndrome when ibrutinib was used with liso-cel.
There is much progress being made on genetically modifying the CAR-T cells themselves, adding new medications and better using existing meds to dampen side effects as experience with CAR-T has grown in patients and in the lab.
- I am 64 with CLL and have been on Calquence for 5 months and doing great. I am temporarily living with my daughter and her twin 2-month-old babies. They are receiving vaccines. Do I need to be concerned about being around them after they receive any specific vaccines? I know I cannot receive any live vaccines but wasn’t sure about any risk to me from any vaccines they receive.
Answer from Dr. Furman: There is a theoretical risk of live vaccines administered to children being transmitted to immunosuppressed patients and therefore we would recommend avoiding contact.
- I’m writing for my partner who was diagnosed with CLL about 6 years ago. He had a course of FCR chemo in autumn 2017 and suffered sepsis in the 5th month. He survived and completed the chemo course, and since has been symptom-free. However, last week he had rigors over 2-3 days (4 episodes) and in the following 5 days had severe night sweats, which have now tailed off.
Are these symptoms things that might come and go, seemingly at random, or will they necessarily continue and worsen? In other words, should he seek treatment now (given the danger from COVID) since he is still free of other symptoms? Recent blood test shows decline of his counts, but not drastically so. He is 64 and generally fit.
Answer from Dr. Koffman: Sorry to hear of your partner’s challenging few days. This is a question that we really can’t answer, and you really need to talk with his healthcare team. Here are my thoughts that might provide some guardrails in making this decision.
Generally, rigors and night sweat demand a workup. It is not possible to advise as to whether it is nothing such as a passing viral infection or is a sign of more serious infection, or issue related to his CLL or even a new malignancy.
If he has no recurrent symptoms at all, the likelihood of anything serious going on is less, so you have to weigh the risk of missing something serious against the risk of COVID exposure in your community. Most medical facilities are extremely careful and should have excellent PPE, but there are no guarantees on either side of this equation.
Personally, for me living in Southern California in the midst of a massive COVID surge today, I would watch and wait if I remained asymptomatic, but another night of any symptoms would change my calculation.
- We have a beach house that other family members who are not being careful want to use. How long after they leave, would it be safe for us to go there?
Answer from Dr. Koffman: Thanks for the question. I would follow the latest local recommendations about cleaning, airing out, and waiting after potential exposure.
There is published literature about how long the COVID virus can live on certain surfaces (several days in the best circumstances for the virus) and in air as aerosol particles (several hours), but what that means in term of transmission risk and when it is safe or not safe has not been worked out.
- Diagnosed in September, Stage 0 so no treatment/medication. I am experiencing unusual and rather rapid weight gain in spite of a healthy diet and exercise regime. My stomach is quite bloated. There is no pain. Functions are normal. I am 66. Is this CLL related or is it simply a dramatic age-appropriate shift? Do you know if other cases with this symptom?
Answer from Dr. Koffman: Thanks for the question. Weight gain and bloating are not normal and need to be worked up by your doctors. There are many possible causes related and unrelated to the CLL. Or it could be nothing. Hard to know without proper examination and testing.
- If after a CBC my WBC was 12.1 and my lymphocytes were 8.0, does this mean I have progressed from MBL to CLL?
Answer from Dr. Koffman: Thanks for the question. To be diagnosed as having CLL, one needs a monoclonal population of 5,000 or more B lymphocytes that have the immunophenotype or fingerprint of CLL. The only way to be sure is by doing a flow cytometry. If your absolute lymphocyte count (ALC) is 20,000 and you have been diagnosed with CLL before, you can be assured that most of those 20,000 cells are clonal and checking by flow cytometry is not needed. If it’s only 7,000 it could be a mix of normal and abnormal lymphocytes and you may not have over the 5,000 CLL cells needed to qualify as having CLL. When your ALC is 8.9, odds are that there are enough clonal B cells (>5,000) to qualify you as having CLL, but without doing a flow cytometry it would not be certain. Another option is to just wait and see where the count is trending and how it declares itself. If next time it is 12,000, then the answer is clear.
- The CLL Society has provided me with an abundance of useful information on CLL. One topic that I would like to know more about is: ‘What’s new with prevention (of CLL)?’ Why are there no research presentations at ASH on prevention? I think we have a general understanding of 2 general preventative actions: 1) lifestyle (exercise and weight control); and 2) carcinogen avoidance (smoking). Is this all science can tell us? Is no one investigating means of prevention?
Answer from Dr. Furman: Unfortunately, there are no data available regarding the prevention of CLL by any lifestyle modifications.
Answer from Dr. Koffman: I would add it just makes sense to avoid carcinogens to prevent cancer in general. In CLL, we know that both Agent Orange and radiation exposure increase the risk, but not much else is known to increase risk.
- I have been watch and wait for a few months since diagnosis. No other symptoms aside from platelets about to drop below 100,000; went from 124 3 months ago to 105 now. No sweats, fatigue, or swollen glands or spleen. I have 11q deletion. Lymphocytes are at 17.72. At this level of lymphocytes, are the low platelets more likely to be because of my immune system attacking them, as opposed to them not being produced?
Answer from Dr. Furman: There really is no correlation between whether thrombocytopenia is related to CLL infiltration of the marrow versus ITP (immune destruction). Frequently, a bone marrow biopsy will not be helpful as it will only find CLL cells, even in situations where there is immune destruction. Other clues, including giant platelets on review of the smear can be helpful.
- My mother, 74, 13q deletion, is about to start treatment and the haematologist has suggested Ibrutinib. My mother is only 40 kgs/90 pounds. However, her doctor is prescribing for her to take 420 mg. I raised this with the haematologist but she said she hasn’t read anything that indicates the dose should be less than 420. Is it that initially one needs to take more and then taper off?
Answer from Dr. Koffman: Generally, the ibrutunib dose is not reduced based on weight and it is recommended that most everyone be started on the standard dose of 420 mg, but if there are side effects, it can definitely be reduced. It takes 2.5 mg per kilo to saturate the BTK receptors and block the B cell receptor. That is how the medicine will work. In theory your mother would only need 40 x 2.5 or 100 mg, so a single 140 mg tablet would suffice in her case with some wiggle room.
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.