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 have been on Imbruvica 3 capsules 140 mg per day for 11 months. My only issue is my blood pressure staying under control. I am looking for a cardiologist who understands this disease and try to get on a medication that works. Thanks
Answer from Dr. Koffman: Hypertension is common in CLL patients on ibrutinib. Treatment usually involves the same anti-hypertensive medications that would be used based on your other meds and illnesses. Some patients may need 2 or 3 drugs to get optimum control.
Your local primary care provider or cardiologist should be able to help you.
I was diagnosed with CLL 2 months ago and was told that I do not have to do anything just now but to take blood test every 3 months. I wonder if I could take any supplements or to do anything instead of just waiting.
Here is a quote from Dr. Furman on this topic: There are no data of any supplements being able to help control or prevent CLL. Many have been studied, including resveratrol, curcumin, and ECGC (green tea). There was a change in the laws in the mid-90s that allows natural products to be marketed as food supplements instead of as pharmaceuticals. This allows claims to be made without having to substantiate them or obtain approval from the FDA. In essence, they can state that Frosted Flakes are great (Tony the Tiger) without proving it in a randomize controlled clinical trial.
Here is a link to a patient who shares his personal experience with exercise, diet and supplements including curcumin and ECGC
After watching an interview with Brian and Dr. Mato discussing the precursors to an ibrutinib a fib event, I was confused by a comment in the CLL Society article that these precursors weren’t necessarily reasons not to use ibrutinib …but that one could be ‘watched more closely.’ For example, having a PR interval equal to or greater than 200ms was mentioned in the report from Dr. Mato. Does this mean that someone with a first degree av block would be advised against ibrutinib?
Answer from Dr. Furman: Every medication has risks and benefits, the value of each needs to be weighed to decide whether it is worth moving forward with treatment. I would add consider a cardiology consult or acalabrutinib that may have a lower risk of AF.
What is the best diet to be on when first diagnosed with early CLL?
Answer from Dr. Furman published on the website on 2017: There really is nothing that can be done from the patient’s perspective to avoid progression of disease. It really is something biological about the cell itself.
Answer from Dr. Koffman: Since then there has been this study from Spain: Adherence to the Western, Prudent, and Mediterranean Dietary Patterns and Chronic Lymphocytic Leukemia in the MCC-Spain Study that concluded “this study provides, for the first time, evidence of an association between adherence to a Western dietary pattern and CLL.”
It does not say anything about the Mediterranean diet once you have CLL, only before, so it is imprudent to make assumptions about its benefit for CLL patients. Here is more on this: https://cllsociety.org/2018/09/the-impact-of-diet-on-cll/.
I am vegan and I think it helps, but there is no proof. Search diet on our website and you will find some individuals’ stories. A healthy diet lowers our risks of co-morbidities and that may help us CLL patients to live longer.
I get blood tests on a quarterly basis, should my hematologist test total lymphocytes counts in each of those tests? What specific tests should be run each time?
Answer from Dr. Koffman: A standard CBC (complete blood count) with a differential (sometimes abbreviated to “diff”) will always include the absolute lymphocyte count or ALC that should be followed for its trend, however, treatment is never based on the ALC alone. Follow the trend by downloading on Excel spreadsheet here:https://cllsociety.org/toolbox/keeping-track-of-lab-results/
A blood chemistry panel and LDH are often checked too in order to quantify any other issues or concerns. Immunoglobulins (IGA, IGM, and IGG) can also be measured, though likely less often than quarterly.
There are more advanced tests, such as flow cytometry, FISH and next-generation-sequencing (NGS), but those would not be done on a routine basis.
My white blood count was at 282 with increasing fatigue, decreasing RBC and decreasing hemoglobin when my hematologist said it was time for treatment. She leaned to Gazyva and I leaned to ibrutinib, thanks to the wonderful information available here. My hematologist was happy with ibrutinib also. When I reviewed the video of Dr. Kipp’s presentation at 2015 ASH, he mentioned obinutuzumab not be recommended to patients with a high white blood count. I am just a patient, but I thought my white blood count was pretty high. What parameters are used to judge a high white blood count? Is there a cutoff number above which obinutuzumab is not ideal? I was open to using it after ibrutinib lowered my WBC, but I don’t know where my WBC needs to be, to safely use obinutuzumab without an excessive reaction. Thank you for your time.
Answer from Dr. Furman: There is no set threshold for WBC regarding obinutuzumab. It is just an issue that the higher the WBC, the greater the likelihood of infusion reactions. A WBC of 282,000 does qualify as high by anyone’s standards.
I read about some people who are on watch and wait for years. Does that happen to anyone with a TP53 deletion? Or, do people with a TP53 deletion have a short W&W and have to begin treatment quickly? Thank you for any help.
Answer from Dr. Furman: By and large, patients with TP53 mutation (or deletion 17p) tend to progress rapidly. It is important to remember that statistics are only capable of predicting how a population will do, never the individual. There will be patients with deletion 17p who will do far better than those without deletion 17p.
I recently had a flu shot. I had side-affects such as swelling, pain at injection site, and had a low-grade fever. I feel extremely fatigued, even with taking 40 mg of Vyvanse for my ADD.
Just wondering if this strain of flu shot was harsh on my body and why I am feeling like I am.
Answer from Dr. Koffman: Reactions to the killed flu vaccine are quite variable and unpredictable in CLL patients. I would take that fact that you did have such a response to suggest that your body mounted a defense against, suggesting you may be part of the ¼ to ¾ or so of CLL patients who do get some immune response to the flu from the vaccine. Still in the NIH study, 36% of patients got the flu within 6 months of having received the vaccine.
What is significance of the BIRC3 mutation in regard to progression, and which flavor of treatment? My chromosomes are normal. My LDH is in normal range. ALC 94k+.
Answer from Dr. Furman: A mutation of BIRC3 is associated with a higher risk of progression (shorter time to treatment). It is also associated with a poorer response to chemotherapy, but not with novel agents.
What can cause steadily decreasing WBC and Platelet counts in long term (>10 years) patients with CLL?
Answer from Dr. Furman: Most commonly the CLL, but this is a question you have to ask your physician.
Questions re: immunoglobulin replacement therapy for CLL patients. What criteria indicate its advisability? When would it be contra-indicated? What, if any, are the possible serious side effects? How often is it prescribed? Given that the immunoglobulins come from blood donors, what, if any, is the risk of cross-infection? How is this possibility avoided or minimized in the manufacturing process? (Apart from brief mentions, I can’t find anything on this site more recent than the interview w/Dr. Ben Kennedy. And my search in the literature has so far been fruitless, though perhaps I just don’t know where to look.) Thanks much.
Answer from Dr. Koffman: You can find most things on the website with our search function; click on the magnifying glass in the top bar towards the right. IVIG is a popular topic for Ask the Doctor.
Here is the interview you referenced 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/
These quotes are from recent Ask the Doctor:
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.
Regarding IVIG, the classic indication is for patients who are hypogammaglobulinemic and are symptomatic from recurrent infections or have had a life- threatening infection. The Ig criteria only specifies being below normal.
Given the shortage of IVIG, many who meet these criteria are not receiving IVIG.
I would add that while infection is possible with any blood product, especially a pooled product, the steps to sanitize IVIG have prevented this from being an issue. Please see attached articles that goes much deeper into these concerns and others.
My father is a CLL patient from 2012. Now his WBC count is 61thousands. Hb is 13.6. What should we do now?
Answer from Dr. Koffman: There is nothing in the labs that says your father needs treatment. When you do treat, please see: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
He should get his appropriate medical checkups and vaccines and enjoy his life.
My white cells have gone up from 18 to 21 in 6 months. Is this normal?
Answer from Dr. Koffman: That small movement means nothing and if anything suggests stable disease. No reason to worry at all. And treatment is almost never based on the white count
My husband was diagnosed with CLL. He underwent chemo infusion and was on the imbruvica (ibrutinib) pill for one year. He is now in a remission. He was told to stop the pill in October 2019. I’m wondering how long it takes that pill to completely leave the body. He still has fatigue which is the only side effect he experienced from the pill. Thank you!
Answer from Dr. Koffman: The ½ life of ibrutinib is only 4-6 hours. Most of it eliminated in the gut in 2 days and some in urine. After a few days it is mostly eliminated, and its biological effects may take a week or so to disappear. There are many other causes of fatigue beside the medicines. Hope things get better from your husband. It is unusual to be told to stop ibrutinib unless there is disease progression or intolerance. I would ask your doctor about why he recommended stopping it or consider a second opinion. Our free Expert Access program might be an option.
I’m 65 yrs old and in very good physical condition. Six ft tall and 200 lbs. Due to previously uncontrolled high blood pressure and High Blood Sugar numbers, my kidney function has been reduced to about 65%. With medications, both of those are now under control. I have been recommended for a Phase 3 Clinical trial using Ibrutinub, Obinutuzumab, and Venetoclax. I would like to know if there is any information available where these drugs have been used on patients with my listed conditions. If yes, how did they effect, in particular, the kidney functions? Thank you.
Answer from Dr. Furman: The trials included patients with different levels of comorbidities. As this is a clinical trial, there will be specific criteria that you must meet to be eligible. If you meet the kidney criteria, then your function is good enough to not be of concern.
About a year ago at this time, I had my annual blood test (mostly to check my A1C) and I was subsequently diagnosed with CLL from a flow cytometry test. My WBC count for the last year has hovered around 11 to 13 and my lymphocytes always around 6. I was referred to Dr. Hany Guirguis, Hematologist at Centenary Hospital in Toronto and he told me that he thought I had MBL, not CLL. I was so happy to hear the news, that I didn’t ask him to explain why he thought that I had that, and not Stage 0, CLL. He told me that it will grow at 1-2 percent per year and he thought that maybe if I ever do get to treatment, they won’t even use chemotherapy on me. They will give me immunotherapy. He told me to come once a year for a blood test and to not worry so much and make sure that I live a good life. In any event, I have no CLL physical symptoms (night sweats, fevers, swollen lymph nodes) and my family doctor said that I might continue like this for a long time. I had a battery of MRIs and bone scans of all my organs. They found two small lesions in my prostate…Gleeson 6. Again, I was told, nothing to be done about it at this time, just watch and wait. Here is my question: what is there about a blood test and a flow cytometry test that indicates a person is MBL and not CLL and is MBL really just CLL Stage 0? I read a lot about CLL, but there is not much information on the internet about MBL, that I can find. Maybe it doesn’t matter. Maybe I should just take his advice and stay busy and focused on living well. If you can give me any insights, I would appreciate it.
Answer from Dr. Koffman: Please take a look at this for a more in-depth review to answer the question:
Briefly, if the clonal population is > 5,000 it’s CLL, if it is less than, it’s MBL. It is that simple.
When the absolute lymphocyte count (ALC) is relatively low as in your case, being over 5,000 is no longer enough to make a diagnosis, though it was enough in the past.
The news is good either way. MBL patients don’t have CLL and most never will develop it though there is some immune suppression. Many CLL patients will never need treatment and many of those who will need treatment will also live a normal life expectancy. Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.’
I also would agree that almost no one needs to have chemo these days, with most receiving targeted therapy which are not necessarily immunotherapy.
Should I take the shingrex and/or hep b vaccine before beginning Ibrutinib?
Answer from Dr. Furman: We do not know the impact of ibrutinib upon one’s response to a vaccine, but there are some data to suggest that the immune system functions better once the CLL is under control. When we look at rate of infections in patients on ibrutinib, the rate decreases the longer one is on the ibrutinib and has their disease under better control.
Hi, because I’ve been Watch & Wait for nine years, I’m hoping that I can have the TB vaccine & MMR Booster vaccine, so that I can go to the Philippines. Can I go to the Philippines? Thanks.
Answer from Dr. Koffman: There is no TB vaccine recommended in the USA. BCG is a live vaccine that is used is some countries. Live vaccines such as MMR or BCG are to be avoided in CLL patients. If you received the usual 2 doses of MMR as a child or if you had the diseases, you should be protected for life. No need for a MMR booster. I would check your local doctor about your risks with travel to the Philippines.
There is currently a Dengue Fever outbreak, so I personally would avoid it or at a minimum be extremely cautious about avoiding mosquito bites.
I was just recently diagnosed with CLL after going for a regular physical at my primary Dr. All normal blood results except for absolute Lymphocytes of 6.4 and flow test came back positive for CLL. I have no symptoms and no swollen lymph nodes. My hematologist ordered blood work and a pet scan. After a bit of research on my part I found out that he ordered all the right blood test BUT the PET scan? So my question is should I go for a pet scan or question my hematologist. I do not want to put radioactive solutions in my body if it is unnecessary at this point.
Answer from Dr. Koffman: There is no role for routine PET scans at time of CLL diagnosis unless your doctor suspects another problem. They are often ordered by doctors less familiar with CLL because they may help with the workup for other types of lymphoma, but not CLL/SLL.
Also you may not even have CLL, but MBL or monoclonal B cell lymphocytosis depending on your flow result. If you have more than 5,000 monoclonal cells, it’s CLL, less then it’s MBL. Please see: https://cllsociety.org/2017/03/cll-facts-5/ plus we have much more on this topic on the website.
I am 49 yrs old currently doing FCR, I am due for my fourth-round next week. I am FISH Normal and IGHV Mutated 97.83%. I have requested to do a Flow Cytometry to check for MRD after this round…in Canada where I live the test checks for 1 in 10000. My bloodwork is Normal, no visible lymph nodes. I am thinking of stopping if I reach MRD negative to reduce toxicity. My Dr has discussed that is not protocol and it can lead to a False reading, but she said it is my decision. Are there any other tests or criteria I can do to help make my decision to stop? A BMB? Any insight would be appreciated. Thanks.
Answer from Dr. Furman: There are no data available regarding the use of MRD to guide therapy at this time. Most of the historical data is using MRD as a predictor of duration of response. With regard to novel agents, we are looking at MRD as a tool for guiding therapy, but those data will not be available for some time.
Answer from Dr. Koffman: I would personally recommend stopping FCR soon as there is some evidence that it is the depth of the remission with FCR that determines duration of response, not the numbers of rounds of therapy. More FCR may lead to more risks, both long and short term, so stopping makes sense especially since you will be able to get ibrutinib if you relapse. Just my thoughts and I get your desire to know your MRD status to help you decide.
My immune system (IGG) slowly going down. Doctor scheduled me for infusion of GammaGobulins (?). Any comments pro or con re this treatment.?
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. It is a pooled blood product, often in short supply and quite expensive. Side effects are quite rare but can include serious renal problems and blood clots. Headaches are not uncommon. Some people are hypersensitive to the infusions.
Please see this: https://cllsociety.org/2016/12/immunogobulins-and-ivig/
If a patient does not display b-symptoms, or a rapid lymphocyte doubling time, but has a massive splenomegaly, is it appropriate to start treatment? It is unclear from the cll flow documents how much of a factor organomegaly, specifically of the spleen, is in deciding when to start treatment.
Answer from Dr. Furman: Splenomegaly that is massive is an indication for treatment. I would add if it’s painful, then that can be a reason to treat also.
I was diagnosed with CLL 9 months ago. Flow Cytometry results for Zap 70 and CD 38 were both negative. My oncologist said that my CLL will be slow growing and my first set of blood results showed a very small increase in my Absolute Lymphocyte count after 6 months. Even though my Flow Cytometry results were good, if I have the unmutated form of CLL or have bad genetic markers such as 17p del or 11q del, don’t these prognostic indicators outweigh or negate the Flow Cytometry results. Is the only way to see the “Big Picture” is to have FISH and igHV testing performed?
Answer from Dr. Koffman: There are multiple predictive and prognostic factors in CLL. Please see: https://cllsociety.org/cll-101/what-doctors-say-about-test-before-treat/
This is a simple one pager: https://cllsociety.org/2019/08/test-before-treat-one-pager/
We recommend FISH and IgHV mutation testing before each and every treatment as they are generally the most important in helping guide therapy choice. Generally the “worse” marker largely determines the prognostic, however, keep in mind statistics predict for groups, not individuals. Add to that that the significance of predictive factor is changing in the era of novel therapies.
I’ve been scheduled for an IVIG infusion for the first time since my diagnosis (2017) next week, due to below normal immunoglobulin levels (IgA 48, IgG 325, IgM 29). Will I have to do this on a regular basis from now on? Is this a signal that other treatment will be indicated soon? My white count doubled in the last year. Thanks so much for taking my question! I just found this website yesterday!
Answer from Dr. Koffman: IVIG is indicated for those both with low levels and recurrent infections. While some only use it over the winter, most are on it continuously. Once started, it is usually given continually, often once a month. It should not be used in my opinion unless one is having recurrent infections as it is an expensive pooled blood product that is often in short supply. Low immunoglobulins are not an indication to treat the CLL and sadly, likely will not improve with CLL treatment.
Please see https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/ on when treatment is indicated.
Consider joining one of our CLL support groups. And signing up for our weekly Alert. And getting a CLL expert physician on your team. All three will help you get up to pace with this slow-moving cancer.
I was diagnosed with CLL after a routine blood check. I am a ‘watch and wait’ patient. I am in great need of a total hip replacement and I’m quite nervous. Would I need to go to a larger medical center (ie: Emory in Atlanta) where they deal frequently with CLL patients or would it be ok to have it done in my hometown hospital? Are there any studies I can read about?
Answer from Dr. Koffman: This question is best answered by your CLL physician who knows the specifics of your case. There is nothing regarding the CLL in general that requires special attention, but there are always exceptions.
I was diagnosed 2+ years ago here in Reynosa, Mexico (B cell CLL zap-70 NEGATIVE, CD-38 NEGATIVE with my hematologist, Dr. Magallan, saying I was hovering between Stage 0 Rai, and Stage 1 Rai. Past biometry/C.D.C since 2011 showing no real changes. Total LEUKOCYTE count ranging between 10.4 and around 15.5, and absolute lymphocyte count hovering around a bit over 6,000, with percentage of Lymphocytes around 40 to 45%. I have been taking a MICARDIS generic as per my cardiologists’ diagnosis of light hypertention about two+ weeks ago. My CBC bloodwork from yesterday shows a return to NORMAL TOTAL LEUKOCYTE, and ABSOLUTE LYMPHOCYTE VALUES of … TOTAL LEUKOCYTES 10,200 … ABSOLUTE LYMPHOCYTES 3,570 … PERCENTAGE OF LYMPHOCYTES 35%…(!) I just googled reports of rare spontaneous remissions of, more or less, “indolent” CLL, and amongst other possible factors use of ANTI-HYPERTENSIVE MEDICINE was suspected in initiating these very rare spontaneous remissions of C.L.L. What is your perspective/advice vis a vis this most recent of developments in my bloodwork? (I only come here to Reynosa, Mexico because since 2014, I STILL have not managed to secure medical coverage. I’m 40 years in the U.S. Merchant Marine (58 yrs old), and (hopefully I will get the requisite 90 days sea-time employment before June 1st 2020 to start initiating Union Medical coverage. Heading back to Port of Houston in a few days.) THANK YOU VERY MUCH Doctor, and a VERY HAPPY NEW YEAR TO YOU! Sincerely,
Answer from Dr. Furman: There really are no spontaneous remissions. Some people, possibly yourself included, are better described as monoclonal B lymphocytosis, a “precursor” to CLL. The circulating number of cells is not the important determinant. Just like some patients will fluctuate between 80,000 and 120,000, people can fluctuate between 10,000 to 15,000. I am sure the CLL cells are still there, but importantly, they are not progressing, which will hopefully indicate an insolent course.
Have you seen many incidences of all over fluid retention as a side effect of the CLL? Fluid around heart, lungs, genitalia and just over all weight. Thanks
Answer from Dr. Furman: No. It is important to look for other causes. These causes might be secondary to the CLL, such as amyloid, but not CLL itself. I would add that really needs to be quickly and carefully assessed as it is an unusual and potentially worrisome symptom. It is not just the CLL. Something else is going on and you urgently need to get a diagnosis and proper treatment.
Diagnosed CLL July 2019, upon discovery huge spleen 25 cm 3 times+ normal growing rapidly. Developed severe pain but I recognize severe regular weakness/exhaustion, oversleeping back to 2006 to 2007 continuously until now. Hematologist foregoing Tx, not concerned about spleen but should it be removed? He said spleen would return to normal size within a short time and I would feel much better, but feels other benchmark triggers such as night sweats, fevers, or further weight loss (already 35 lbs and poor appetite).
Answer from Dr. Koffman: A massively enlarged or painful spleen can be an indication for treatment.
For more on when to treat, see: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
As you see, severe fatigue and weight loss are also indications for therapy. The spleen will shrink with therapy, but not usually without. Splenic removal is rarely indicated.
Please consider getting a second opinion, either through our free Expert Access Program that provides an online consult at https://cllsociety.org/cll-society-expert-access/ or see a true CLL expert (we have a list online).
I was diagnosed with CLL two years ago. I am on the watch and wait. For the past year I have been experiencing pressure in both ears. I thought that it was the swollen lymph nodes pressing behind my ears. I asked my doctor, but he did not seem concerned. I feel like I might be losing a bit of my hearing too. Is this common? Thank you.
Answer from Dr. Furman: Anything that can block the eustachian tubes can affect hearing and ear pressure. This could be the adenoids, lymph nodes or inflammation.
What does rash associated w “Watch and Wait” look like, and does it signal possible need for treatment?
Answer from Dr. Furman: There is no rash associated with watch and wait.
Is a white blood cell count of 13k considered the first stage of CLL? Also with that count, how long do you think I have had CLL? Oh it went up by 1000 in 2 mo from 12k to 13k.
Answer from Dr. Koffman: To diagnose CLL, one needs to have a count of >5,000 monoclonal CD5+ B cells as measured by flow cytometry. A rise of 1,000 is of no significance. The Rai staging of CLL is explained here: https://cllsociety.org/2016/03/rai-staging-cll-chronic-lymphocytic-leukemia/. This is what is commonly used in the USA to stage CLL.
Platelets dropped suddenly some six months ago, now stable but in the high 30’s. Diet help appreciated, travelling soon to Caribbean. Any advice?
Answer from Dr. Koffman: The most important thing is to determine the etiology of the thrombocytopenia. Whether it is due to ITP or CLL infiltrating the marrow, treatment would be indicated and likely advisable prior to any traveling. There are no dietary suggestions that would help with ITP or thrombocytopenia related to CLL, unless it were medication or drug related.
I would add that I agree that while a platelet count of 30,000 is usually not imminently life threatening, especially if ITP is the cause, there is no safety margin and even a minor injury or the need for surgery could be catastrophic. You need a diagnosis (likely a bone marrow biopsy would help) and then a treatment plan. I personally would not travel with such a count. Diet is not likely to help, but some believe there is possible benefit from consuming sesame oil. Evidence is not strong.
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors, but I am happy to talk if I can be of any personal help my friend. Cell is 949-463-6533.
My spouse had a painful lump to form (within 24 hours) on his biceps. Biopsy showed it to be CLL in the muscle. It was removed at the time of the biopsy and the pathology report showed some dead tissue inside. My question is how common is this? I could find no other reports of such an event. Can this show up in other muscles, say the heart?
Answer from Dr. Furman: This is very unlikely and typically of no consequence.
62 yr F recently diagnosed with CLL. WBC trend was discovered after finding 2 brain aneurysms, the need of a lot of bloodwork over the last 6 months. I have to take Plavix or Brilinta since having the aneurysms treated via vascular with stents/coils. Plavix overacted to my blood, and levels were very very low, also intense body itching. Adjusted then, wound up switching to Brilinta, because they thought I might be allergic to Plavix, and levels are where neuro wants and did a 6-day series of steroids for itching which temporarily relieved it. Can the CLL affect blood thinners/platelets and be attributing to the itching/reaction?
Answer from Dr. Furman: There are some conditions associated with CLL that can cause itching, but by and large, the issues with platelets is not going to be related to the CLL. I would add to follow-up with your local treatment team.
My wife has CLL. She has had a chronic cough for over 1 year. Her oncologist has not shown great concern about the cough and has not treated her for it. Is a chronic cough a side effect of CLL?
Answer from Dr. Koffman: There are many possible reasons for a chronic cough, most not related to CLL, but some where her CLL may be a factor. It deserves a workup by your local treatment team. Push to have it taken seriously and consider a second opinion with a pulmonary doctor.
I was diagnosed with SLL in July 2019, and now learn I have to change to a different osteoporosis med because it has stopped working after several years. My question: how much will the osteoporosis negatively affect my (so far indolent) SLL? I’m worried that it will give the lymphoma a hideout. Just to make things fun, I am Rh neg. and have no spleen after a car crash.
Answer from Dr. Furman: Osteoporosis will not negatively affect CLL. There are rare times that CLL might exacerbate osteoporosis, but they are most likely unrelated.
Does this radiologist’s comment on a breast ultrasound indicate anything about my CLL stage: “There are multiple lymph nodes noted far laterally on the right (breast) consistent with patient’s history of CLL.”
Answer from Dr. Furman: Lymphadenopathy does make a person Rai Stage I, although mammograms tend to be very sensitive. Technically, the Rai criteria is supposed to be based upon physical exam.
This question is about my husband. He found out he had CLL after a random blood test .. white cell was 43,000 that was in May. It is now 95,000 in Dec. he has no symptoms except swollen lymph nodes on neck. We have gone to a oncologist/ hematologists. We are on W/W. Can you tell me how high your white cell count can go without treatment?
Answer from Dr. Koffman: There is no level of increase in the number of lymphocytes that would indicate a need for treatment, though the rate of increase in the count or “lymphocyte doubling time (LDT)” can be an indicator that treatment will be needed soon. Please see this article that outlines the guideline for when to start treatment and the underlying rationale: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
I’ve been diagnosed with early stage CLL, would a clinical trial be beneficial to me while helping others. Regards,
Answer from Dr. Koffman: Good for you thinking about a clinical trial. As one of the most important things you can do is consult a CLL expert as part of your team, there is the Natural History trial at the NIH in Bethesda, MD, that will not only offer you free expert care, but also help others understand the disease. I recommend you consider this trial. You will get expert care with expenses paid. Here is a link:
If you are interested, email me and I can connect you with the NIH. The other possible type of trial for newly diagnosed patients is for those at high risk to see if they would benefit from early intervention, but those are only open to high risk patients. And there may be other observational trials looking at anything from clonal evolution to anxiety to finances in CLL patients.
I was just diagnosed yesterday with Atypical CLL. However, after reading I see that it as a worse prognosis that standard CLL. My report is as follow CD 19,cd20 BRIGHT, Cd 23 cd 5, cd 10 cd22 and bright lambda light chain. I can’t find much info on the web regarding what makes the atypical CLL have a worse prognosis. I’m not sure if you have any insight on this. Thank you.
Answer from Dr. Furman: Atypical CLL is not an exact term, but rather one that pertains to any case that does not meet the exact diagnostic definition for CLL. In actuality, there are far more important predictors of prognosis than atypical versus typical CLL.
I was diagnosed with CLL in July of 2019. My question, is there anything I can take for being extremely tired? All I want to do is sleep. I work full-time and am not sure how long I can keep it up without something to help. Thank you for your time.
Answer from Dr. Koffman: Fatigue is one of the most common symptoms in CLL and grossly underappreciated and undertreated. I wrote an article on this with several options that are used by CLL specialists that you might want to discuss with your treatment team.
As my husband’s caregiver and after searching for information, I am surprised that no site related to CLL offers information as to foods to “avoid” or foods to “include” for a patient/husband with CLL. Can you suggest a website or at least a short list of foods to eliminate – or – better still, foods to include? Any website with information would be appreciated. Many thanks.
Answer from Dr. Koffman: A study from Spain suggested that a Mediterranean diet is the best for CLL and that makes sense to me. A Mediterranean diet is best for just about everything.
Other than just the common wisdom that a healthy diet high in vegetables and fruit and low in processed or sugary or salty foods lowers the risk of other problems, no particular foods have been shown to help or hurt CLL.
I am vegan, and avoid alcohol and processed foods when I can, but I do that to lower my risk of secondary problems.
My husband has been diagnosed with CLL stage 0 for 5 years. Because of diabetes 2 and multiple autoimmune disorder he has been taking a course of 20 vitamins and supplements, including D3 and turmeric. After several unchanged blood tests, the most recent revealed not only no change in platelet counts but a decrease in white blood cells and smeared leukocytes. I understand that testing has supported this improvement to D3 and turmeric. What further information on this can help him or help CLL research?
Answer from Dr. Koffman: Glad your husband is doing well with his protocol. My best advice is to follow the trend and not become too excited about any one result, good or bad. The trend is your friend. Five years of stage 0 is pretty great.
There is evidence that those who have higher Vitamin D levels when they were diagnosed with CLL do better, but there is no evidence that taking Vitamin D slows CLL once diagnosed.
There is promising preclinical data on turmeric but no strong human trial evidence.
Except for a specific green tea extract, there is paucity of good data on other vitamins and supplement for CLL. That means just what I said – not that they don’t work, but there is no evidence to show if they do or don’t.
Glen Sabin has written a good book, N of 1 on his CLL journey and his success with diet, exercise and supplements that you might want to read. We have an excerpt on the website.
Do you have any treatment suggestions for the dual diagnosis of CLL and sarcoidosis?
Answer from Dr. Furman: We don’t have any data regarding the efficacy of the novel agents on sarcoidosis, but often steroids are the first line treatment. Treatment could consist of a BTK inhibitor or Venetoclax plus prednisone for someone in this situation.
My wife having CLL for five years is still being monitored and not ready for any treatment yet. My question is: Does a CLL condition affect Lipid readings? Her Triglyceride reading is now 226 (range 20-150) has more than doubled in one year. She takes medication for Hypertension and known cardiac risk in her family. Thanks.
Answer from Dr. Furman: Not that we know of.
I come from a large Italian family whose grandparents came from Sicily to the United States early in the last century. We seem to have CLL running in our family. I am 56 and currently not diagnosed with CLL. As I understand it, my grandmother died from CLL (and I am told her father in Sicily had it as well). Four of her six children (3 men and 1 woman) had CLL, including my father. Now, we have found out that at least 3 of my cousins (of 26 total) have been diagnosed with CLL. I am sure that number will rise.
Is this kind of genetic distribution in one family normal for CLL? Is there a test one can get to determine one’s risk of developing it? I would like to have the relevant researchers in CLL answer this. If that is not you, can you please help me get in contact with the right people? Thanks.
Answer from Dr. Furman: Dr. Jennifer Brown is one of the leading researchers in familial CLL. I am certain she would be interested in adding your family to the database.
Answer from Dr. Koffman: Let me add that Dr. Brown practices out of Dana-Farber in Boston.
Why is my CLL referred as B- CLL? Are T-lymphocytes not involved in the overpopulation of the excessive WBC count?
Answer from Dr. Koffman: CLL is a cancerous clonal expansion of the B cells alone. There are T cell lymphomas, but they are not CLL.
I’ve been diagnosed with SLL and have no spleen, after a car accident. Where will to-be-discarded bad blood cells be culled now? I am specifically leery of meds with tumor lysis as a significant factor, like Rituxan and imbruvica? To top things off, I’m O-.
Answer from Dr. Furman: The functions of the spleen are often taken up by cells in other organs, most notably the liver. The risk of tumor lysis is not increased in patients without spleens.
Just curious with the newer therapies, does someone that is diagnosed in their mid-40’s have hope to live a normal life span? Or will it be shortened more than the elderly patients with CLL? 40’s is very young to have this. Thank you for your time.
Answer from Dr. Furman: It is too early to tell what are the long-term possibilities without new therapies. We have excellent 8-year data with Ibrutinib, but that is the longest yet. The prognostic markers also have a significant impact upon predicting outcome.
Happily, my CLL is in remission since July of 2019 and CBC is generally within normal values. But the immunoglobulins levels are as follows: IgM 25, IgG 520, and IgA 45. Are this immunoglobulin levels anything that should be concerning? Lab work performed 2/6/2020.
Answer from Dr. Furman: Hypogammaglobulinemia occurs in almost 80% of patients with CLL. This hypogammaglobulinemia occurs even without treatment and will often not correct over time. Since most of our previous treatments destroyed the immune system further (chemoimmunotherapy), we don’t see improvements with treatment. Whether this would change with our novel agents is not yet known.
Most of the time, the hypogammaglobulinemia is only present on laboratory testing and not of clinical consequence. Only if it were to result in frequent infections would intervention be necessarily, most commonly IVIG.
I am in remission with CLL and about to travel to home to the UK from Spain, then on to Finland for a holiday. Are there any precautions I should take?
Answer from Dr. Koffman: Until we have more information, other that following the guidelines of the CDC or your local health authority as I explain in this article:
https://cllsociety.org/2020/02/2019-novel-coronavirus-or-2019-ncov-whats-the-risk/. We really do not know much at this juncture other than careful handwashing.
I started on Imbruvica 420 mg a month ago. I am having a real problem with mouth sores. Is this unusual?
Answer from Dr. Furman: Aphthous ulcers (aka canker sores) are a known side effect of Ibrutinib.
My husband’s IGHV MUTATION ANALYSIS came back borderline. I know mutated is good and mutated is not. What does it mean when the IGHV is borderline? Thank you very much!
Answer from Dr. Furman: The Ig mutational analysis is not perfect. We will always see some differences test to test. For example, one test may show a patient to be 1.9% mutated on one test and 2.1% mutated on another. Ultimately, these borderline cases probably behave more like unmutated, but this is a relatively unimportant prognostic marker today given all of our novel therapies.
Answer by Dr. Koffman: I would add that some recent yet to be broadly confirmed research has suggested that IgHV mutations may be better interpreted with more shades of grey, rather than strictly black and white.
What is the most effective way to stop/reduce “night sweats” associated with CLL? Not getting much sleep!
Answer from Dr. Furman: It is always important to determine whether the night sweats are secondary to the CLL or another process. If you are having night sweats, that is an indication for treatment initiation. Any effective treatment will be effective in controlling the night sweats.
I have recently been diagnosed with Chronic Lymphatic Leukemia. I was told that it was low level leukemia and no scan or biopsy was necessary. It seems to come into the category of ‘wait and watch.’ Can you give me your opinion of this advice. Thank you.
Answer from Dr. Koffman: Watch and wait is the most common approach to those newly diagnosed with CLL. There is no role for routine scans or biopsies at time of diagnosis.
See this on watch and wait and when to treat: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
Due to the increase in the spread of COVID-19 in Northern Italy in the last month, is there an increase of infection? I have CLL and a holiday booked to Northern Italy in 2 months.
Answer from Dr. Koffman: CLL patients are at higher risk for serious complications from COVID‑19, though it is not clear that we are at higher risk for actually getting the infection.
At the CLL Society we have canceled all our March meetings and we are constantly monitoring the situation. Personally, I would not go to Northern Italy, but the situation might be quite different in 2 months from now. I am avoiding all unnecessary and canceled two trips this month. The precautions recommended by the CDC and WHO should be followed.
Are there medications other than the Ritalin/Provigil/Adderal (sp) complex that have been found to be of benefit in treating CLL fatigue?
Answer from Dr. Furman: If the fatigue is related to CLL, treating the CLL would be the best approach. I would add that you might review my article on fatigue here:
https://cllsociety.org/2018/09/cll-related-fatigue/. I discuss some of the medications you mention and other non-medication approaches.
Started Calquence 3/1/2020. Prior to treatment, white count averaged 45. Count then to 135, 195, and as of today 3/ 13 at 244. Is this generally what happens initially?
Answer from Dr. Koffman: Acalabrutinib works, among other ways, by blocking homing signals in the CLL cells to the lymph nodes so the cancer cells flood out of the nodes into the blood stream and cause the lymphocyte count to shoot up. This is nothing to worry about and tells us the drug is working. It can take a very long time for the count to fall back to normal.
I have been diagnosed with both CAD (Cold Agglutinin Disease) and CLL/SLL. Will that affect how I am treated?
Answer from Dr. Furman: Any of the treatments for cold agglutinin disease and CLL are the same, but not all. Which you need to be treated with will likely depend upon what is driving the need for treatment.
Hello. I was recently diagnosed with CLL in January. Female 46 years old 50% bone marrow involvement, normal fish and negative cd 38. I don’t have my mutation status yet as my doctor stated he would order it, but due to my anxiety I opted not to at this time. However, I don’t see him again until July and was just curious the rate of clonal evolution before first line treatment, and, if the newer novel Agents could potentially slow down Richter’s and/or clonal evolution with the research out now. Further, are there are any interviews with Dr. Furman or any of the other CLL specialists that discuss CLL patients living a normal life span when diagnosed at a young age? Most of the info I find relates to older patients over 65. Thank you for all your information and research.
Answer from Dr. Furman: Clonal evolution most commonly occurs in the setting of chemotherapy. By avoiding chemotherapy, the hope is that there will be no selective pressure for more resistant clones to emerge. The new agents are effective enough to work regardless of the prognostic markers. Evolution to a Richter’s transformation is fortunately rare.
Living with CLL for anyone is a tough process. It will take time to acclimate to the “new normal”. My advice is always to strive for normalcy. With our new agents, we can expect excellent outcomes and the ability to be around for the next round of novel therapies that are still on the drawing board.
Answer by Dr. Koffman: I would add that you read through some of the Living Well with CLL articles that speak to you and also catch the webinar on the Emotional Rollercoaster: https://cllsociety.org/2019/07/cll-society-webinar-a-psychological-perspective-dealing-with-the-cll-emotional-roller-coaster/. Many CLL patients now live a normal life expectancy.
My doctor tried to perform a biopsy on my bone marrow and was only able to get the solid part, not the liquid. Is that okay?
Answer from Dr. Furman: The “solid component” is the core biopsy and provides helpful information from the “liquid component” (the aspirate). Getting both is always preferable but depending upon the reason for the doing the biopsy, one is often adequate.
I have CLL, my liver is 22 and my spleen is 20. My doctor feels that it is not concerning but I am concerned. Should I go for a second opinion? Do you think it’s something I should be concerned about?
Answer from Dr. Furman: There is absolutely no issue with seeking a second opinion. It is always good to hear different perspectives on patient management and treatment decisions.
Answer by Dr. Koffman: I totally agree. I would add, make sure the 2nd opinion is with a real CLL expert. We have a list of CLL doctors on our website.
I am 3 years into active surveillance with CLL and have also developed a MAC infection – also active surveillance. I have a well-maintained private home swimming pool (rarely used by anyone). In the present “lock-down” situation, is it advisable to use the pool or should I just exercise by walking? I live in hot and humid South Florida. Thanks.
Answer from Dr. Furman: No reason to not use the pool. Whether it is chlorine or salt water, they are both good antiseptics.
I am at the first stage of CLL (watch & wait) and work as a Prison Officer. I have had flu-like symptoms for the last 10 days. Should I return to work after 14 days or am I in the high-risk category, even if I’m not on any medication for my CLL?
Answer from Dr. Koffman: You really need to talk with your personal physician(s) to answer these questions. Generally, all CLL patients are considered in the high-risk category regardless of their treatment status so personally, as a CLL patient myself, I would stay at home.
Can CLL cause ridges and bumps in the skull?
Answer from Dr. Furman: Bumps along the skull may be lymph nodes, or they may just be bumps along the skulls.
I’ve been on Ibrutinib for five years (diagnosed 29 years ago) and have had bronchitus for the past four to five months. Last night I coughed up a blood clot. How worried should I be? Would you recommend me switching medications to acalabrutinib? I also have microscopic blood in the urine. Many thanks for your help!
Answer from Dr. Koffman: You need to contact your doctor. Don’t delay.
Regarding healthcare workers not working with patients, does this include someone diagnosed 2 years ago with no CLL symptoms and has not needed CLL treatment? Thank you.
Answer from Dr. Koffman: All CLL patients are immune suppressed to some extent and hence, a vulnerable group. I personally would not be doing direct patient care these days. I have also directed your question to our CLL expert panel to get their answer on our Friday virtual community meeting.
Is a pleural effusion known to be a side effect of CLL or Imbruvica?
Answer from Dr. Furman: In my experience, pleural effusions are a very rare side effect of Ibrutinib. They are extremely rare in CLL and are often due to other conditions.
My wife is 17p deleted/TP53 mutated and is 3 years into Venetoclax, after being refractory to Ibrutinib after 4 years. She is getting excellent care by her doctor but seems to be slowly showing signs of the Venetoclax not working as well. Her LDH has increased over the last six months (trending higher) and a lymph node in her thigh seems to be growing again. What is next for any oral treatments similar to Venetoclax for high-risk patients. Please share any information you may have. Appreciate the help. Thank you!
Answer from Dr. Furman: There are additional treatment options for patients progressing on Venetoclax, including combinations of BCR antagonists and BCL2 antagonists, PI3K inhibitors, and clinical trials.
My dad was diagnosed with CLL/ SLL during 3rd week of March with following symptoms:
- Weight loss @ 23 kgs during last 5 months (.I.e. from 100 to 77 kgs)
- Loss of appetite (40% loss as compared to his regular diet)
No Fever, No night sweats, No pains at all. We’re posed with a dilemma to choose between two alternative treatment regimens:
- Bendamustine-rituximab (BR) regime 4-6 monthly cycles, or
- Ibrutinib 420 mg oral tablet daily
Please guide us on the best safest treatment plan with longest and healthiest of survival in his case (irrespective of treatment cost).
Answer from Dr. Koffman: I think your dad would get more 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/. That said, recent data comparing the two treatments you mention suggest that for most older patients (such as your dad) would have better survival outcomes on ibrutinib than BR, and that would be my clear choice. There are safety issues with both therapies that you would need to discuss with his doctors. Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.
My husband has Stage 0 CLL, recently diagnosed. Having lost a lot of weight and being very lethargic since Christmas, he had more blood tests done and a scan. Consultant says CLL is stable but cannot explain other symptoms. Bloodwork through GP testing has shown a possible auto-immune disease and now awaiting an appointment with a rheumatologist. Is CLL and autoimmune disease related? Thank you.
Answer from Dr. Koffman: Yes, CLL is associated with many different auto-immune disorders, but there are also many other possible causes for weight loss and lethargy that need to be worked up.
How can I relieve pain from swollen lymph glands in my groin? Thank you.
Answer from Dr. Furman: I would suggest acetaminophen or ibuprofen. CLL lymph nodes should not hurt though, and it is important to make sure they are not the result of an infection.
Answer by Dr. Koffman: I agree with Dr. Furman but would add some folks have reported temporary relief with castor oil packs, though there are no scientific studies that I know of that support this treatment.
Should I be taking extra vitamin C and Zinc or other vitamins? (I have been on Calquence ACP-196 for 5 years in an MD Anderson Phase 1/2 trial). I am now in good health and have no side effects.
Answer from Dr. Furman: There are no data that extra vitamin C or zinc provide any benefit.
I had pneumonia in December. My IgG level was down to 369 so I am being treated with IGIV. Looking at my recent blood tests, I see I also have very low IgM and IgA. What does this mean?
Answer from Dr. Furman: CLL patients typically have panhypogammaglobulinemia, meaning all of their immunoglobulins are down. IgG is the most important one for fighting infections and is the only one repleted (brought back to normal) with IVIG therapy.
Does CLL cause leg pain? I was diagnosed in January 2020, but I was told that I have most likely had CLL for at least 2 years. I have noticed over the last year that my legs ache/hurt and they feel tender to touch on occasion. It is not a cramp. Other than the leg pain and fatigue, I feel fine.
Answer from Dr. Furman: No.
Answer by Dr. Koffman: I would add that you need to see your doctor and work up your leg pain. Legs should not be tender to the touch.
I was diagnosed in November 2019. I had had high lymphocytes for several years but finally went to an oncologist. No other symptoms and my lymphocytes were actually in the normal range on the last visit. The doctor said mine is of an Indolent nature and I shouldn’t have much problem. How important do you think it is to get the prognostic indicator labs done?
Answer from Dr. Furman: It is important to note that prognostic markers predict how a population will do, never the individual. Historical performance is a good predictor for most patients and will trump the prognostics. There are always people on the bad curves doing well long after some of the people on the good curves have done poorly.
I was diagnosed 5 years ago with CLL and had chemo, and have been stable since with no medications or treatments. The only effects I can tell from the disease is fatigue and bruising. I am 82 and in reasonably good health. I take fish oil and vitamin D supplements and was considering vitamin B12. After buying a bottle (from Costco), I noted that it was 2500 mcg – 1,000 times the daily requirement. My red cells and platelets are slightly lower than normal but not in dangerous territory. I am not sure that the 2,500 dosage may be dangerous but in general, the vitamin is supposed to aid the anemia and the fatigue. Research online indicates that too much B12 could lead to lung cancer in some individuals. What is your medical opinion? (I have not yet started taking the B12.) Thank you.
Answer from Dr. Koffman: Next time you have a blood test, ask your doctor to check your B12 and methylmalonic acid levels. If they are okay, you should not need supplemental vitamin B12. Extra B12 is helpful to those deficient in it, but its role beyond that is controversial.
I and 56 have had CLL for 10 years and have now been diagnosed with Polymyalgia. As the recommended treatment is steroids, what impact (if any) does taking steroids have on CLL?
Answer from Dr. Furman: Steroids are frequently included in many regimens as treatment for CLL and lymphomas given their ability to induce lymphocyte apoptosis (cell death). The steroids used as treatment for the PMR will help prevent some progression of the CLL. As an aside, CLL patients do have significant immunosuppression as part of their CLL and seem to be very sensitive to the additional immunosuppression from steroids.
Are there any good or bad effects of taking channel blockers such as Diltiazem, Verapamil, Amlodipine to treat Hypertension on patients with CLL under observation for five plus years?
Answer from Dr. Furman: No.
I am a CLL patient with “adverse” p17 mutation, doing well on venetaclax and now in the fifth month of therapy. However, I continue to need ongoing chest drains for pleural effusions (on average, about 1 liter per week). What implications, if any, as a generality, does this suggest for the future? I assume it does not bode well.
Answer from Dr. Furman: If the CLL is responding and the pleural effusions are persisting, it suggests the pleural effusions are not related to the CLL. The drainage may need more time to slow, but other etiologies should be entertained.
In November 2019 my WBC was marked abnormal at 13:1. On April 21 my WBC was 15.8. Should I be worried at this stage? My Haematologist has suggested a “wait and watch” strategy.
Answer from Dr. Koffman: Assuming you have been diagnosed with CLL, those counts are reassuring. Watch and wait is a common strategy assuming your other counts are good, and you have no other symptoms. I think you might 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/
My CT impression is “there are borderline enlarged cervical level II lymph nodes, bilaterally. A greater than expected number of small but prominent cervical lymph nodes are identified, as well as axillary lymph nodes.” My flow cytometry results are consistent with SLL/CLL. What RAI stage is my CT showing?
Answer from Dr. Koffman: Rai stage I patients are described as patients with palpable lymphadenopathy on exam or pathologically enlarged lymph nodes on CT. By CT criteria, we typically require lymph node size greater than 1.5 cm to qualify as pathologically enlarged. “Borderline” make indicate lymph nodes that are visible to the CT scan, but less than 1.5 cm and would thus not typically count. Of importance, the original description of Rai staging and the data it is based upon only used physical examinations.
My oncologist has recommended ibrutinib for treatment of CLL; however, I have not qualified for a grant or patient assistance for this medication due to my income being beyond their cut‑off for patient assistance. I would prefer to follow my oncologist’s treatment recommendation of ibrutinib, though the co-pay for this drug without patient assistance is prohibitive. Any suggestions for starting treatment using this drug? I’m considering writing a letter to J & J explaining my circumstance in more detail. I don’t know if a clinical study would be an option for me as I’m working full-time. I will be discussing this with my oncologist when I see him in two-weeks. Thanks.
Answer from Dr. Koffman: Sorry to hear of your challenges. There are many options to help with payment that depend on your insurance – Medicare versus commercial insurance. I would reach out to Pharmacyclics – they have a generous plan that can help. Next try LLS – their nurse advice line is the best with these situations.
I was diagnosed with Parkinson’s recently, but could signs and S.C. be related to Ibrutinib?
(Unsteadiness, fatigue, etc.)
Answer from Dr. Koffman: Parkinson’s can be difficult to diagnose. Ibrutinib and the CLL itself can cause fatigue. There are many possible causes for being unsteady. We suggest a second opinion from a neurologist to sort this out.
I miss certain fruits with skins such as grapes. Are grapes forever off the table for a CLL patient? Further, if fresh vegetables such as zucchini and squash are (boiled for 3 minutes) cooked, are they then safe to eat?
Answer from Dr. Furman: There are no data that CLL patients need to avoid or do any special preparation of food. Some physicians advocate for avoidance of certain raw vegetables, but this is mostly for neutropenic patients, and even that is not well supported by data.
I’ve been taking Imbruvica pills for about three years. It’s been working for my CLL – I feel good. Is there any way to tell when I should stop taking them? How do you know if you are in remission?
Answer from Dr. Furman: Remission is defined by not having any evidence of disease. This will be demonstrated by a normal blood count, normal CT and physical exam, and normal bone marrow biopsy. The question regarding when to stop treatment is one that we do not have the answer to at this time. Even patients in remission will have CLL present and it will relapse with stopping therapy. Whether that poses a problem or not for the patient’s long-term outcome is unknown. Clinical trials are currently testing this idea.
I am on a drug called Ibrutinib. Is this classed as a corticosteroid?
Answer from Dr. Koffman: Ibrutinib is not a steroid, but rather an oral targeted therapy in a class of drugs called tyrosine kinase inhibitors, basically enzymes.
I am taking Calquence and the side effect is a headache. I only get it at night and it’s hard to sleep. My doctor said it will go away in time, but it is not. Driving me nuts. Advice?
Answer from Dr. Furman: The headache resulting from acalabrutinib can be very difficult for some patients. For most patients, the headaches respond to acetaminophen or caffeine and they lessen over 2-4 weeks. For the night-time headache, it might be worth trying migraine headache remedies. Some patients will require alternate therapy due to the headaches.
Answer by Dr. Koffman: I would add getting a consult from a headache specialist – that may not be your local neurologist.
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.