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
I am newly diagnosed, after being followed for one year as Monoclonal B Cell. My last 6-month visit was in early April. My white count had gone from 18000 to 24000 and Lymphocytes were 15000. In 3 TD week of, I was out of the country on a trip and got a cold with a cough and can’t beat it, now on day 18. Lymph nodes popped out on both sides of my neck, with ones on left side very painful to touch. Saw doctor at a resort in Dubai who said no sign of infection. I’m getting weaker daily, but still getting around. Should I be alarmed? Is this just what I need to get used to?
Answer from Dr. Koffman: The best answer to your questions depends on many variables and would benefit from a review of your chart. If you live in the USA, I suggest you apply for our free Expert Access Program that provides a free online HIPAA compliant consult with a CLL expert to provide information to guide your management. It will give a more detailed answer.
If interested, please consider applying at https://cllsociety.org/cll-society-expert-access/
I have low levels of CLL, on watch and wait (WBC at 14). Due to swelling ankles and Lymphocyte count at 19,000, my doctor is recommending a full torso CT scan to check for blocked lymph nodes. Is there any other way to get the results he needs without radiology? Thermography, ultrasound, etc., but not MRI because I am highly claustrophobic. I have scoliosis and was over-x rayed as a child. Every three months for 7 years, several views of back at each occasion. I’ve had further CT’s of back and lungs. I’m worried I am getting too much radiation, if not absolutely necessary.
Answer from Dr. Furman: There really is not another means for obtaining the information other than MRI. Fortunately, the amount of radiation in x-rays is extremely small and will likely never be of consequence.
I would add that sometimes a good technician and radiologist might be able to assess the lymph nodes in the groin using ultrasound and there would be no ionizing radiation. Enlarged lymph nodes in the groin might cause ankle swelling.
Also, please take a look at our website for the articles by Wayne Wells on CT scans.
I had 3 CBC tests completed over 6 months with results within the normal range, except Lymphs (absolute) which was 5.4 10(9)/L 5.2 10(9)/L and then a repeat test from a different lab with a result of 3.4E3/uL. Is this something I need to worry about? I’m a 61-year-old male and healthy in good condition.
Answer from Dr. Furman: There will be lab to lab variation, but more importantly and of much greater significance, there will be day to day variation. These small changes are of no consequence. This is also the reason the Rai criteria places emphasis on the hemoglobin and platelet counts.
Best treatment for ITP in CLL client, after years of steroid therapy, rituximab? I am Dep 17 marker.
Answer from Dr. Furman: There are many treatment options for CLL patients with ITP, including rituxumab, ibrutinib, and chemotherapy. The best one depends upon each patient’s particular situation.
I would add cyclosporin and IVIG.
I was diagnosed with CLL in April 2019 during an annual physical exam. My primary provider referred me to an oncologist who has determined I am stage zero and will be on watch and wait. But, as I speak with a few people within the SLL and local CLL communities, I hear questions about if I have seen another oncologist for a second opinion. Would obtaining a second opinion come across as second guessing my oncologist? Could my blood test panel be the reason not to obtain a second opinion?
WHIT BLOOD CELL SMEAR REVIEW /MANUAL DIFFRETIAL check = 18.36×10’3
WHITE BLOOD COUNT WITHOUT AUTO DIFFERENT check = 24.98×10’3. Thank you in advance for your feedback.
Answer from Dr. Koffman: It is never a bad idea to get a second opinion. Your results are reassuring but there are studies that show a survival advantage to having a CLL expert on your team. Most good doctors welcome a second opinion.
If you live in the USA, we offer a free online second opinion through our Expert Access Program.
I’m 78 and have been in watch and wait for 3 years. I feel OK, work out about 75 minutes a day at a fitness center. A year ago, I had sputum tests and was Dx with MAC and mycobacterium abscesses. I’m currently seeing an ID physician at National Jewish in Denver and am presently on watch and wait for that too. Are these two NTM infections common amongst CLL patients? Do you have any suggestions?
Answer from Dr. Furman: These mycobacterial infections are not typically seen with CLL patients. There are some interesting associations, but not CLL.
My white count is at 80,000, all other counts seem somewhat normal. How and when do I consider treatment? I also have A-fib.
Answer from Dr. Koffman: There is no specific white count that requires treatment if the rest of your labs are good and you feel well. CLL is treated when treatment is needed. A-fib is a risk with ibrutinib.
For more on when to start treatment, please see https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
Do I need treatment when my lymphocytes are at 79.5%?
Answer from Dr. Koffman: The important number is the absolute lymphocyte count (ALC), not the percentage of lymphocyte, and even with the ALC there is no level that demands treatment. Patients are generally treated when they are symptomatic.
The CLL Society website has a good basic article on when treatment is needed. Please review here: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/.
I’m from the UK and have a question on behalf of my 80 year old mother, who has been living with CLL for 6 years now, and after a couple of rounds of chemo (sorry unsure what) over the last few years has most recently been treated with Ibrutinib (3 x 120mg daily) since Feb 2019. She lost vision in her one good eye starting in March and this has rapidly deteriorated over the last 3 months to complete blindness in this eye. Recent trip to eye specialist confirms that this has nothing to do with the front of the eye (NOT cataract, retina, macular damage etc.) and is most likely a reaction to the drug behind the eye in the brain (clot?). Vision related side effects seem to be common with Ibrutinib and I wonder if anyone else has had similar issues. In particular, has stopping the treatment reversed any of the vision side effects?
Answer from Dr. Furman: There are no adverse events that are “typical” for ibrutinib involving the eye. While anything is possible, given that this is not a classic adverse event, it will be important to make sure this is not something else.
I am assuming brain MRIs have been obtained given the seriousness of blindness? Given that one eye is already not working, what your mother is experiencing might be bilateral, and just appear unilateral. Bilateral would also indicate something in the brain. I would also wonder whether what caused the blindness in the first eye is playing a role in the second one.
Please let us know what the outcome is.
Is there any way to reduce lymph node swelling at home? Would using ice help?
Answer from Dr. Furman: Treatment is the CLL.
Answer from Dr. Koffman: What Dr. Furman is saying is that the way to shrink the nodes is to treat the CLL; that is correct. I would add that some patients claim to get temporary relief with warm castor oil compresses to the affected node though I don’t think it has ever been studied in a clinical trial. Except for the mess, there isn’t much downside to trying this old folk approach.
I’m 52 and have been on watch and wait for 7 years. Cd38: negative. Zap-70: negative.
IgHV: hyper mutated (87.5%). Fish: deletion of tp53 is 13%. My hematologist told me that a good result is also good prognosis. My spelean is large, and last CBC result: WBc:115000, Lymphocytes: 94%, and Neutrophils: 2%. Hgb:11.4 Plt: 104000, LDH: normal range. I checked every 2 or 3 months, CBC.
My question is, is it dangerous to be deletion 13% of tp53? What treatment is better for me if I start treatment? I live in Tehran/ Iran.
Answer from Dr. Koffman: Generally, the results are good, but the 13% of tp53 is a real concern that I would push to avoid chemotherapy and use a drug like ibrutinib or venetoclax or a clinical trial of drugs that work well, even with tp53 deletion. You really should consult a CLL expert if possible.
Are there situations in which it is recommended that Rituximab should be exclusively infused to boost a CLL patient’s platelet count? If so, could you please identify the appropriate presenting “conditions” for this type of treatment?
Answer from Dr. Furman: Rituximab is frequently used as treatment for immune mediated thrombocytopenia in patients with CLL. Rituximab could also be used to clear the bone marrow if bone marrow infiltration was the cause of the thrombocytopenia, but there are far more effective therapies than rituximab for that purpose.
Please explain mutated vs nonmutated.
Answer from Dr. Koffman: I assume you are referring to IGVH mutation status. If so, Dr. Leclair wrote a nice article to explain this: https://cllsociety.org/2018/09/what-is-igvh-and-why-is-it-important/
Our website is worth searching as we have answered so many common questions, you may find what you are looking for.
What do you recommend for the skin rashes caused by imbruvica? I’ve been taking doxycycline, but it has become less effective over time.
Answer from Dr. Furman: The most important thing is to discontinue the ibrutinib. If it is a typical drug rash, it should resolve fairly quickly. If it does not, then it is likely something else and not the “typical” drug rash. Topical steroids do help.
My first and only BMBx was in November 1998. I received treatment in 2007 – 2008. Should I have a more recent and possibly more thorough BMBx given the passage of time? I would assume testing methods may have improved in the last 20 years.
Answer from Dr. Furman: Unfortunately, methods for obtaining the bone marrow have not really improved over the past 20 years. A bone marrow biopsy is really only necessary if there is information that it would provide information that will help manage the patient. If there are low blood counts and you need to determine if they are the result of marrow infiltration, toxic effect, or autoimmune, then a marrow would provide helpful information.
In my patients who I am treating with targeted agents, I often don’t perform a bone marrow biopsy.
Please let me know if 37% value of lymphocyte in full blood count should be considered high.
Answer from Dr. Koffman: All that matters is the absolute lymphocyte count (ALC). Please take a look at this: https://cllsociety.org/2019/06/ask-the-lab-scientist-q2-2019/.
I had my 6 month check up with Dr Byrd yesterday. My immunoglobulin G level is at 80 or super low. I received a note from a NP stating to keep a close eye on persistent infections and may need to start IIg replacement therapy. I have had two bouts of pneumonia in the past 60 days. Are there any resources about this and CLL? I have a ton of questions around this topic. Such as, is this the beginning of the end, insurance coverage/cost, lifelong and when I start, etc.
Answer from Dr. Koffman: I have been on IVIG for 13 years now. It’s inconvenient, but not a big issue. Insurance covers the cost. The indication is that you need to have both low IGG and recurrent serious respiratory infections. It seems you would qualify. Most people who start on it, stay on it as immunity does not tend to improve. There is a national shortage now.
Here is an interview with Dr. Kennedy on the topic: https://cllsociety.org/2016/12/immunogobulins-and-ivig/
Here is a question to Dr. Furman, scroll down: https://cllsociety.org/2018/06/ask-the-doctor-q2-2018/
You can find most things on the website with our search function; click on the magnifying glass in the top bar towards the right.
My mother was diagnosed with CLL over 30 years ago and never needed treatment. A few years ago, her GP put her on low dose ASA for her CLL. Is this actually protocol after years of no treatment? She doesn’t like being on the Aspirin due to recent studies; she is 87 years old and in good health.
Answer from Dr. Koffman: I know of no specific CLL indication for ASA and its use prophylactically for an 87-year-old without existing cardiovascular disease and is generally not recommended. Ask her doctor about whether she should stop.
This is from the New England Journal of Medicine: “The use of low-dose aspirin as a primary prevention strategy in older adults resulted in a significantly higher risk of major hemorrhage and did not result in a significantly lower risk of cardiovascular disease than placebo.”
I am 84 years old. Chlorambucil Oct/14 – March/15; Ibrutinib 280 Mg Aug 17-April/19
Trisomy 12, Unmutated. I stopped taking Ibrutinib in April 2019 because my oncologist wished to see if it was causing my extreme light sensitivity. The result after 3 months was that indeed, Ibrutinib was aggravating an existing condition. My oncologist recommended staying off Ibrutinib for an indefinite period while doing monthly blood tests. Other than the eye issue and muscle cramping, I was doing well on Ibrutinib. Now, after over 3 months without any Ibrutinib, my blood work remains normal, I have no symptoms, my energy has increased and there are no visible enlarged nodes. If I become symptomatic, my doctor intends to prescribe 140 mg of Ibrutinib a day.
My question is whether others have had similar experiences and perhaps Dr Furman can advise as to whether this is a reasonable approach. As I live in Canada, other targeted drugs are not available to me yet.
Answer from Dr. Furman: Light sensitivity is not an adverse effect reported with ibrutinib. Since the symptoms resolved with holding the ibrutinib, it is very suggestive. I would not recommend 140 mg/day of ibrutinib if it brings your dose to below 2.5 mg/kg, as it will be a subtherapeutic dose.
Let me add that that would mean you would need to weigh 123 pounds or less to be an adequate dose of ibrutinib at 140 mg a day.
My husband has CLL with 17p deletion. He is currently being treated with Acalabrutinib in trial, which started in 2016. No history of prior treatment. His IGG levels are low. I have noticed, in particular, that there seems to be a steady decline within the past year. Last level was 375. At what point is IVIG indicated?
Answer from Dr. Koffman: There are guidelines on when IVIG should be given, generally when both your IgG levels are < 400 mg/dL and you are getting two or more serious respiratory infections annually. Without the infections, most doctors would not recommend IVIG.
I have been on Ibrutinib almost three years now, my spleen has returned to normal and all nodes except one have shrank. Everything is normal except my WBC. It was 299k when I started, shot up to 747k, and has slowly came down about 20k every three months. Last visit it was 70k and my doctor says as long as it continues that downward trend it’s working. All other counts returned to normal within first few months except WBC & ALC.
Answer from Dr. Koffman: There is no concern that it is taking a long time for the count to fall, as long as the trend is good. In fact, some data suggests that the longer it takes to get to normal, the more durable the response.
My dad was recently diagnosed with Richter’s Transformation, his CLL transformed into DLBCL. He has shown a response to DA EPOCH R chemotherapy. The doctors at our hospital recommended an allogenic stem cell transplant using a donor’s cells at first, but then recommended switching it to an autonomous stem cell transplant using his own stem cells. Which is the preferred treatment for a patient with Richter’s Transformation? We are hearing conflicting information from various doctors at our current hospital.
Answer from Dr. Furman: This is a question that only the physician caring for the patient can answer. There are two types of Richter’s Transformations, those clonally related and those not. Those that are not, can be treated similarly to standard DLBCL. For those clonally related, allogeneic transplants are an option, but require that patient to be in good shape physically. All of these factors need to be assessed.
I would add that I believe allo transplant is the usual choice rather than auto when a transplant is recommended.
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 Q3 2019.