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 regards 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.
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.