Ask The Doctor Q4 2020

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

1. I have had low-grade, stable CLL for six years, along with Sjogren’s Syndrome. I feel very lucky to be stable, yet I have experienced increasing, intense fatigue, in the absence of anything else wrong that a doctor (and her machines) can find. I also have intense discomfort up the back of my neck and head, again with no findings, bruise easily, get huge mosquito bites, and have required three rounds of antibiotics and two antivirals in the last 18 months, despite exercise and good diet. Is it possible to have wonderful “numbers” and still have CLL symptoms? Or should I just blame autoimmunity?

 Answer from Dr. Furman:  It is possible to see CLL impact the immune system without having a significant disease burden.  This could manifest as recurrent infections and exaggerated responses to insect bites.  The classic B symptoms, fevers, chills, night sweats, weight loss, are typically seen only with large amounts of disease present.  The important question for you is CLL vs rheumatologic disease.  The rheumatologic disease activity is often measured in other terms than disease burden.  (No elevated WBC in rheumatologic diseases.)  Many of treatments do treat both though, so it is not always essential to differentiate one from the other.

 

2. Several years ago, I was treated in the hospital with IV antibiotics for a serious foot infection. The infection developed very quickly, and I was hospitalized for three days.
   Currently I am having sciatica leg pain and will be going to a pain management clinic soon. I am concerned they may want to do a corticosteroid joint injection. Based on my history, I am afraid an injection will cause a problem for me. I have been taking Ibrutinib for four years. I hope this is an appropriate question and would be helpful to others, as well as myself.

Answer from Dr. Furman:  The amount of steroid in an epidural is not sufficient to have systemic effects and should not be a concern.

 

3. 59-year-old male, healthy except for CLL. I had a j pouch 26 years ago for UC. I am trisomy 12 (Complex with a few additional trisomies-18,19) and am mated IVGH. My last WBC was 9.1 but it has been up to 15 – not sure why it is decreasing. Total lymphocytic count is around 3500 and neutrophils are about 2500. My Hgb is 15.7 and stable. Platelets started at 138k at diagnosis. The platelets went to 109k then 122k and are now 95k. Spleen is enlarged and measures 15×16.5 cm. Sometimes I think it causes flank/ back ache. Would splenectomy be an option instead of steroids or immunoglobulin therapy or novel agent? If the spleen were removed would the ITP still persist? I haven’t had a BM yet, but the peripheral smear looks ok. B cells are small and other cells look ok. Unfortunately, I am a surgeon who is thinking too much.

Answer from Dr. Furman:  It is unclear that your thrombocytopenia is due to ITP.  Classic ITP is seen without any splenomegaly.  Additionally, platelets of 95,000, if due to purely ITP would not require treatment.  Making the distinction between ITP versus CLL infiltration of the marrow is extremely important as that would be the best guide to determine therapy.  If it is ITP, splenectomy is rare ever used.  The spleen does play important roles in immune system function.

Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.

Answer from Dr.  Koffman:  On a different note, we are putting together a physician only CLL online support group. As a fellow physician with CLL, besides sharing many of the common concerns of any leukemia patient, we have unique issues when it comes to our cancer journey. Anyone who is interested in joining this support group should contact us at support@cllsociety.org.

As always, the resources of the CLL Society and I are here to help. 

4. My lymphocyte count was 49; is this normal? If high, would I require medicine?

Answer from Dr.  Koffman:  I am not sure if the 49 refers to the absolute lymphocyte count (ALC) or the percent and doesn’t include the units so I can’t comment as to whether it is normal or not without more information. 

Either way, the lymphocyte count on its own is almost never a reason to treat CLL. We have articles on the website about when treatment is indicated in CLL in our basic section. Start with this one: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/

 There are many non-CLL causes for a high lymphocyte count (if you have one) that you should discuss with your doctors as we can only give you information related to CLL. Also, the lab results should indicate the normal range of the test so you can tell if it’s high. Or ask your doctor. Focus on the ALC.

5. Got diagnosed last year in November, had two CT scans, no issues. My doctor, who is listed on your website as a CLL specialist, wants me to have another CT scan. My doctor became rather hostile when I questioned its use. I am Watch & Wait, WBC 30.000, no real health issues beside a low IGG (285 but no recurring infections). Is there any use for a CT scan? According to my doctor it is to establish a baseline for any changes in the one year since diagnosis.

Answer from Dr.  Koffman:  There is no reason for a CT to monitor the CLL and even one CT at time of diagnosis is not generally recommended or part of the guidelines unless there is a specific indication such as a painful mass or organ dysfunction. CTs increase 2^nd cancer risks and should be used only when needed to make a decision. Consider a second opinion or using our Expert Access Program for a free online consult. Let me state my personal opinion: Hostility from a doctor when a patient asks about the necessity of a 3^rd CT in less than a year is a tip off to me to seek a second opinion.

 

6. I was diagnosed in 2015 with CLL and had six months of chemo (Bendamustine/Rituxan) since then I have had no symptoms or treatment. My blood numbers are normal except for RBC and platelets which are about 5-10% below low normal, but stable on three-month testing. I am also a LLS volunteer. My question is: Is there a reason to be MRD tested and what would I gain by it. I am somewhat confused about it. Thank you.

Answer from Dr. Furman:  There really is no role at this time for MRD testing in routine clinical practice.  MRD testing is prognostic, but since it is a “post-treatment” prognostic test, and no change in clinical management is undertaken, its results will not change   management.  We are doing several clinical trials that will possibly identify uses for MRD testing in the clinical management of patients.

 

7. I was just tested for my IGHV Mutation and I am mutated at 5.1% of the VH segment 3-15 gene. I was curious to how people do TTFT and OS with this percentage, as well as in the segment of that family 3-15.

Answer from Dr. Furman:  Regarding mutational status of IgHV, the results are truly only relevant at mutated or unmutated.  The standard definition of mutated is having greater than 2% mutations.  We do not have data indicating the amount of the percentage matters.

 

8. My mother diagnosed with CLL two years ago and has been started chemotherapy since then my question is that can low platelet count indicates CLL is getting worse?

Answer from Dr.  Koffman:  The short answer is yes. Low platelets can be caused by the CLL growing in the bone marrow causing less room for normal cells to grow such as a platelet, an enlarged spleen trapping the platelets an auto-immune problem where the body makes antibodies that destroy platelets called ITP (Immune Thrombocytopenic Purpura). And rarely secondary blood cancers. But the chemo itself can lower the platelets and that is a likely cause.  It needs a work-up and appropriate management.

 

9. Can platelet count remain low after remission?

Answer from Dr.  Koffman:  Yes, it can take a long time for counts to come back to normal after some treatments, especially chemotherapy

 

10. Is it a common occurrence for CLL bruises or Leukemia bruises (the ones you wake up with that you don’t know how you got) to have hard lumps under them? But yet, bruises from where you bumped into something or banged yourself thinking that will leave a “lump” under the bruise, doesn’t.  I have spoken to my Oncologist and my primary physician and no one can explain why this is happening, or what these even are. My Oncologist says he doesn’t think this is CLL related but yet he doesn’t know what it is either. I get bad bruises with bad lumps and I don’t know where else to turn. They do eventually go away but it takes a few weeks for them to do so. All of my labs for PT & INR come back normal. They have run so many tests for varying blood disorders, but they have all come back negative. My mother had Factor V (57), her brother died of AML (53), their father died of a stroke (49), and I am about to turn 52 and my health is getting worse.

 Answer from Dr. Furman:   It does sound like a great deal is going on and needs to be addressed by your physicians.  Regarding the bruising, if the platelet count is above 50,000, there is no other process affecting the vasculature, and the platelet function is normal, than CLL patients should not develop bruises.  There are many things that might masquerade as bruising, including petechiae, vasculitis, etc. that could be going on as well, which are seen in CLL patients as well.  These can also cause symptoms without the blood counts being very abnormal. 

 

11. My brother (and kidney donor to me in 2008) William Luther was diagnosed with CLL in October 2018. His local oncologist is now recommending treatment with either Venetoclax or Ibrutinib. Are there special considerations for a kidney donor with one kidney? He is my hero and I am very concerned that the right treatment is chosen. He is a resident of FL and I have urged him to meet with Dr. Khan at Jacksonville Mayo Clinic. He has a second home in MI and saw a doctor in that area for diagnosis. Please advise.

Answer from Dr. Furman:  As long as the creatinine (measure of kidney function) is normal, there should be no issues.

 

12. Is it safe to get the flu vaccine while you are on Venetoclax?

 Answer from Dr.  Koffman:  Yes. Good idea to get the vaccine.

 

13. If IWCLL standards indicating Tx have not been met yet a long term CLL patient with favorable markers and relatively stable disease is desirous of strengthening their immune system via Tx, couldn’t it make sense for impatient patients to switch from ‘Watch & Wait’ to ‘Treat & Watch’, given the new, increasingly safe and highly effective Tx choices?

 Answer from Dr.  Koffman:  There is no evidence that early intervention improves outcome in CLL, though there are trials looking at this. No treatments have been shown to strengthen immunity and all have potential side effects.

 

14. If a frontline treatment with a novel oral agent is advised (for me, next month V+O, fixed two-year duration), is genetic testing, especially FISH, always warranted since new discoveries from such tests seem mostly to be used to warn patients from chemotherapies?

Answer from Dr.  Koffman:  The testing is still helpful as patients with poor prognostic factors should consider dual therapies or clinical trials rather than a mono therapy in my opinion.  And vice versa- Those with good markers might want to use single agent and keep more options available down the line. Also, helpful to know if you relapse if there has been any clonal evolution. Just my opinion.  You are right that it is less critical if chemo is off the table.

 

15. I was diagnosed with CLL a year ago and put on R-CVP chemotherapy. But poorly responded to chemo and then recently had my blood tested for genomic aberrations and found to be positive for trisomy 12 (40%) with negative IGHV status. I have been advised by many fellow CLL patients and different experts from their experience that i will not do any better if put on the older chemoimmunotherapy drugs such as R-CVP, FCR and BR unless my treatment option is switched to newer drugs such as ibrutinib, acalabrutinib and venetoclax which will do better for trisomy 12 and other genomic aberrations like 11q, 13q and 17p deletions. since these drugs are not locally available in Ethiopia what would you advise me as well as my local doctors to have access to these or other newer drugs in order to have long remission time? my doctors in Addis Ababa are willing to allow access to my medical records or have some sort of consultation links with you to exchange experience on modalities of treatment options. Thank you for your considerate reaction.

 Answer from Dr.  Koffman:  Sorry to hear of your problems. The trisomy 12 does not preclude chemo-immunotherapy such as FCR or BR unlike 11q and 17p deletions as trisomy 12 is an intermediate risk factor. I am not sure what you mean by “negative IGHV status” but most trisomy 12 patients have unmutated IGHV which confers a poorer prognosis with chemo. Might help to be tested for NOTCH1 and TP53 if possible.

 As to treatment, you might look and see if there is any compassion access to any of the drugs by reaching out to the companies in Ethiopia such as Janssen, AbbVie and AstraZeneca. You might be happily surprised.

 I strongly agree that the novel agents are a better choice for you, particularly after relapsing after chemo.  Sorry I can’t be of more help.

 

16. My partner is a 77-year-old white male w a 13Q, CLL deletion diagnosis made two years ago. His labs have been relatively stable – w H/H is 12.7/37.5, lymph’s 28.9, Neuts 3.17, Lymph’s 28.95. He is very vibrant – works full-time, exercises more than one hour per day, and eats no prepared foods and sustainably raised meats and organic fruits and vegetables. His PMH includes CAD w a single 10-year-old stent. He also has ITP. (Platelet counts remain stable at 80+/-. Haptoglobin:98. No bone marrow biopsy).

How often should he be getting labs done. He has a CLL specialist at Moffit in Tampa, FL whom he sees every six months and a general oncologist in Sarasota who orders labs every six weeks. Every time these include CMP, Immunoglobulins, haptoglobins, Bêta-2 microglobulin, ferritin, folate, iron panel, LDH, réticencyte profile, serum light chains, transferrin, Utica acid, B12. Are all of these necessary?

Answer from Dr.  Koffman:   Every doctor has their own protocol, and I would defer to your local treatment team who know your partner best, but I think the whole lab panel 2 times a year and a simple CBC every 6 weeks could suffice. If the CBC is off, he may need a second draw. 

 Honestly if someone has normal B12, folate and iron studies, I don’t see a need to recheck unless there is a good clinical reason to do so. The other tests are looking at CLL and ITP activity, but the CBC will drive what action is needed, not the other tests almost all the time, so I don’t see them as necessary at that frequency.

 Sometimes tests get set up in an automated way to reduce the paperwork for the doctor.

 

17. First line treatment 2001 FCR, second line Obinutuzumab 2017, trying to decide between Acalabrutinib and Venetoclax. I have a high tumor burden and am concerned about which drug carries a higher risk of tumor lysis.

 Answer from Dr.  Koffman:  Venetoclax has a higher risk of tumor lysis syndrome (TLS) but with the appropriate ramp up, that risk is very low and manageable. I would definitely have your predictive tests redone before treatment (repeat FISH and TP53 for sure and IGHV if not already done), as the results can change and might push you to consider a trial or taking two meds together. Also, a sequenced combo might lower the risk of TLS if venetoclax is added in later. Lots of good choices.

 

18. Besides the concern for COVID 19, what is the general recommendation for CLL patients re: vaccines. Are vaccines for international travel a general recommendation due to compromised immunity?

Answer from Dr. Furman:  The recommendations for vaccines are the same for CLL patients as they are for everyone else with the exception of avoiding live vaccines.  These include MMR and some other travel related vaccines.

 Answer from Dr.  Koffman:  I would add that the CDC has vaccine guidelines specifically for immunocompromised folks like us that we link to on the website.

 

19. Could you tell me what the differences between Obinutuzumab and Rituximab are?

Answer from Dr. Furman:  Obinutuzumab and rituximab are both anti-CD20 monoclonal antibodies from Genentech.  Rituximab was first approved in 1997 for the treatment of follicular lymphoma.  Rituximab is a chimeric antibody which means that it was first generated in a mouse and the half of the antibody responsible for binding the target (the CD20 protein) was fused to a human half of the antibody that is responsible for activating the immune system.

 For obinutuzumab, Genentech took the DNA sequence from the targeting end of the antibody and cloned it into a human antibody gene.  This antibody is completely human except for a few of the sequences where the antibody binds the target.  They also made some changes to the end of the antibody that activates the immune system in order to make it more effective in activating the immune system.

 Rituximab is a chimeric antibody because it is half mouse fused to half human.  Obinutuzumab is humanized, as it only contains some mouse sequences in a human antibody.  Both antibodies bind the target exactly the same, but obinutuzumab, because of the additional changes made to the immune activating end, is more effective and likely causes more infusion reactions.  People thought the antibody being humanized versus chimeric would also be advantageous as there would be less chance of a patient developing immunity against the antibody, but this has not proven to be an issue.

 

20. I am a member of a CLL Society Support Group. Patients have shared their experiences on various drugs. One patient will receive a drug (e.g., venetoclax) and have little or no side effects to it. Another patient will receive the same drug, and after a short period of time end up in the ER with severe side effects. Are there are any studies underway to test how a patient will respond to a drug before it is administered? That way the drug would not be administered to the patients who cannot tolerate it.

 Answer from Dr. Furman:  Much research has been done with the class of PI3 kinase inhibitors (duvelisib and idelalisib).  These agents can cause autoimmune side effects and the research has been focused on changes in the regulatory immune cells.  Some research has been done on BTK inhibitors and the side effects of atrial fibrillation and bleeding.  While the etiology of the atrial fibrillation is unknown, bleeding looks like it is due to inhibition of BTK and TEC kinases.

In general, some side effects likely relate to these drugs being dosed the same in all patients instead of weight-based dosing, but we mostly are not sure.  What we do know are some clinical features that might predict for adverse events, such as age, history of hypertension, left atrial enlargement, etc. predicting for atrial fibrillation with ibrutinib.

 

21. 13q34 deletion, normal bloodwork, enlarged inguinal nodes right side. Question:  In SLL, can you be determined to be mutated or unmutated? If so, through what kind of testing?

Answer from Dr. Furman:  There are no differences between CLL and SLL.  The same testing for one is of benefit in the other.

 Regarding IGHV mutation analysis, this does require cells to analyze, which can be obtained from any tissue, although commercially, lymph nodes are not typically performed.

 Answer from Dr. Koffman:  I would add there are CLL cells in the blood in SLL, just less than 5,000 per microliter of blood and also in the bone marrow.  ou need to know before you are going to treat.

 

22. What could be a possible explanation for a decrease in absolute lymphocyte count? Over six months it has dropped from 21 to 13 – I cannot seem to find any explanations. Other blood cells are within normal range (RBCs, platelets).

 Answer from Dr.  Koffman:  Small fluctuations in the absolute lymphocyte-count (ALC) can happen in CLL and often there is no obvious cause. Resolution of a mild or more serious infection, or inflammatory process, or even stress reduction can sometime lead to lower counts. Hope that it remains low for a long time.

 

23. I spoke to a member of this group and she said I could schedule a consultation with a specialist for my husband. Please let me know how I can do this. My husband will need to start treatment soon and because of the pandemic we prefer not to travel (from Florida) to Ohio to see Dr. Byrd at the present time.

Answer from Dr.  Koffman:  Thanks for your question.  I think your husband would benefit from our free online Expert Access program that would allow a CLL expert (considering he cannot see an expert now) 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/

24. On Saturday’s webinar I missed the information about vaccines. Just tagging in at the end, it was looking very dismal for CLL patients to have a response to a vaccine. I just got the high dose flu vaccine. Was that a waste, or might I have some protection?

Answer from Dr.  Koffman:  Dr. Wiestner quoted research that CLL patients have had variable but significant responses to the flu vaccine, so no guarantee that it will help, and with little downside, we recommended it.  It certainly helps some of us. There is not enough data in CLL to comment on whether the high dose is a better choice.

 

25. Has the Pfizer Biontech vaccine been tested on CLL patients? Can the mRNA vaccine trigger a cytokine storm in a CLL patient?

Answer from Dr. Furman:  No information.

Answer from Dr.  Koffman:  I would add that the vaccines are almost never tested on immunocompromised patients such as us with CLL at this stage of R+D.

 

26. I have CLL but am currently in remission. Recently (every week) I have been getting severe headaches and my sinuses hurt too. I have been to the emergency room twice. I had bloodwork done, an MRI – everything came back normal. I have been like this for months, please help me.

 Answer from Dr.  Koffman:  Sorry to hear of your headaches. There are so many causes for headaches that will not show up on bloodwork and MRI, and many excellent treatments. I recommend you get yourself to a headache specialist quickly for assessment and management.

 

27. I was advised (HealthUnlocked) to submit my question here. I would like to know whether a vaccine can cause your lymphocyte count to go up and then decrease again. Prevnar13 in particular. I have had a bad reaction to it (lymph nodes at the back of my head became swollen and terribly painful, throbbing headache as a result of that for 2.5 days, fatigue, body aches). Over the next week or two the lymph nodes went back to normal. My GP sent me for a blood test 6 days after the vaccine was administered to rule out an infection. There didn’t seem to be an infection, but lymphocytes increased from about 40 to 50. The GP is not able to comment whether that is likely to be more due to CLL or due the vaccine. I have just had a flu vaccine and am having pneumovax in a month’s time. I will be having another routine blood test after that so want to know if I can expect a lymphocyte count to go up as a result of these vaccines or not. If it does go up, how long before it gets back to the pre vaccine level? Or does it even get back? More likely to do with the CLL itself?

Answer from Dr.  Koffman:  Sorry to hear of your problems. Reactions to vaccines similar to those that you describe are not uncommon including higher lymphocyte counts. Blood counts can go up and down though a change of 10,000 in a CLL patient is usually not that significant. Nodes can also go up and down. Follow the long-term trends and don’t worry too much about weekly changes.

 

28. Following my CBC, I am worried because the lymphocytes count was higher than expected. My WBC is normal (it’s within range); however, lymphocytes is a little bit high. Please help me.

Answer from Dr.  Koffman:  It is impossible to advise you without knowing more of your medical history and knowing the exact details of the count. There are many causes, minor and major, for high lymphocyte count.

 I would recommend repeating the blood count, and if the absolute lymphocyte count (not the percentage as that usually means nothing) remains high, then consult a hematologist for a work‑up.

 

29. Any studies related to benefit of early treatment in asymptomatic, 17p deleted, IgVH unmutated, with progression of doubling time?

 Answer from Dr. Koffman:  There is one active study I know of looking at early intervention for high risk CLL: https://clinicaltrials.gov/ct2/show/NCT03207555?term=early+intervention&recrs=ab&cond=CLL&cntry=US&draw=2&rank=3

 Early results suggest that early ibrutinib may stabilize the disease and slow time to next treatment, but it is complicated to interpret and too early to say if that leads to better long‑ term outcomes.

 

30. I am a 70-year-old white male, diagnosed with CLL in April of 2014. The diagnosis was “Population of monoclonal kappa-restricted B-Cells (CD19+, CD5+ & CD23+).” My blood results have not changed much since then. At that time, my WBC: 21.3: RBD: 5.60 and Platelets: 264. Total WBD: 31.2, RBC: 560 & Platelets: 196. Seeing a Leukemia doctor at University of Chicago Hospital. I get blood tests every 4 months and I am on the “Wait & See” stage. 

Answer from Dr.  Koffman:  Great question. 

• • Get a true CLL expert on your team. We have a list on our website as a starting reference. 
  • Watch our welcome video on our home page.
  • Study Dr. Neil Kay’s archived video called Just diagnosed: What do I need to know- lots of practical advice. It’s here:https://cllsociety.org/2020/04/cll-society-webinar-archive-just-diagnosed-what-do-i-need-to-know/
  • Frontload your knowledge. CLL is slow moving. You have time to learn. Our website will help
  • Join the local Chicago CLL support group online and learn from fellow patients:https://cllsociety.org/venue/kolping-center/. The link gives you contact info, but the meetings are all virtual during the COVID era.
  • It does get better.

 

31. I have CLL Leukemia Stage 0. What can I do now myself that has shown some support at keeping my CLL at bay?  From diet, foods to eat, supplements, safe early treatments.  Why wait and see if there is some concrete thing I can do now.  I just changed my primary care physician and Cancer Center. Looking into Dana Farber and with my new Primary care physician, I feel good.

Answer from Dr.  Koffman:  Great question.

• • Take a look at Dr. Kay’s lecture on this:Just Diagnosed: What do I need to know?
  • Get a true CLL expert on your team. I recommend Dr. Matt Davids or Jennifer Brown at Dana Farber. This is THE most important thing to do.
  • Join the local Boston CLL Society patient and caregiver support group that now meets virtually:https://cllsociety.org/venue/newton-wellesley-hospital/.   They are a great group of wise patients and loved ones.
  • No strong evidence that anything helps slow the disease but staying physically active and eating right will help. ECGC (green tea extract) and turmeric have the most buzz, but the data is not strong, and they are not without their risks.
  • There are trials looking at early treatment in high-risk patients.

Here is a link to a patient who shares his personal experience with exercise, diet and supplements including curcumin and ECGC.

 Here is a quote from Dr. Furman on this supplement 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.

 

32. What is the reason for stopping Calquence few days before and after for any medical procedures such as colonoscopy, or even needing to take certain steroid shots?

Answer from Dr.  Koffman:  Calquence may increase the risk of bleeding due to its effect on platelets.

 

33. During the CLL society seminar held 10/10/2020, Dr Koffman kept referring to and drinking green tea.  My first question is what is the science behind green tea and CLL?  Secondly, what kind of green tea do you drink? I have powdered matcha tea which I incorporate into uncooked foods like guacamole.   Is there any benefit to that?

 Answer from Dr.  Koffman:  There are a few published studies that a very specific formulation of the green tea extract ECGC may slow CLL progression for a few patients in its early phase CLL.

Here is a link to a patient who shares his personal experience with exercise, diet and supplements including curcumin and ECGC

 I drink 2-3 pots of organic sencha or tencha daily that I import from Japan because I love it. Studies clearly suggests green tea is overall healthy. But so is dark chocolate and broccoli and lots of other foods.

Here is a quote from Dr. Furman on the supplement 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.

 

34. I was recently diagnosed and was told to wait until I started to get symptoms. Are there any supplements that I should be taking to prolong the onset of symptoms?

 Answer from Dr. Koffman:  Here is a link to a patient who shares his personal experience with exercise, diet and supplements including curcumin and ECGC. The green tea extract Mark references from the Mayo trial is not available at this time in the USA and there has been liver and other problems with ECGC so we do not recommend it. It was not particularly helpful to him. You can email him if you want more info.

 I would add is that it makes sense to check that you are replete in Vitamin D.

Here is a quote from Dr. Furman on this supplement 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. 

 

35. I was diagnosed with COVID-19 two days ago. My symptoms started three days ago. The first night I had a cough and minor troubles breathing. The body aches have been pretty severe. I am feeling pretty good today and no longer have a fever. Is there any special treatment that I should ask my oncologist about to keep me safe and out of the hospital?

Answer from Dr.  Koffman:  I may have more for you later as I have forwarded your question to Dr. Furman, but I personally have a pulse oximeter at home (you can get one for $20 or so from almost anywhere), and if that is in the normal range, I know at least the respiratory aspects of COVID-19 are not life threatening. Ask about that. Remember some folks are fine for a few days, but get sicker after a week or more, so do what you can to rest and strengthen yourself including fluids, enough sleep, some exercise. I will feel better when you are 10 days out and feeling well.  It may be important to be replete in Vitamin D. Ask your doc about that too.

 

36. My doctor said I would soon be in ibrutinib. Medicare says my copay is close to $3,000 per month. Where do I go to look for help?

Answer from Dr.  Koffman:  That’s a common and upsetting question. Sorry you must deal with this. I assume you have a Medicare drug RX plan. I am no insurance expert and advice you ask for help. Maybe a social worker who works with your doctor or hospital

Please watch our webinar on financial toxicity: https://cllsociety.org/2019/06/cll-society-webinar-money-matters-help-is-there-to-prevent-financial-toxicity/ and download the resources, Great info there,

• • The estimate seems high to me. Usually, you must pass through the modified “donut hole” where you pay a much higher percentage of the cost in your first or second month of taking the drug each calendar year so if it’s clinically okay, waiting to January helps.
  • After passing through the donut hole (somewhere around $5-6,000 I believe), then you only pay 5% of the cost per month, so 5% of $14,000 to $16,000 or $700 or $800 a month.
  • So, say $5,500 in the first month plus 11 months of $800 or approximately $14,300 a year. Still very high, but better than $33,000. Again, this is my understanding. I am no expert and the rules keep changing.
  • LLS offers financial help, check out Needy Meds and the Pan Foundation for help. We have links to them all on our web site. Call Pharmacyclics or visit their website and ask what they can do.

 

37. I have been on ibrutinib for about four years and have noticed that my blood pressure is slowly rising. That is the only side effect that I have experienced. I am not overweight, and I exercise (aerobics and weightlifting, five to six days a week).  Do you find that many patients have to start BP medicine? What are your thoughts on Ibrutinib/blood pressure? Also, I have been in clinical remission for 1.5 years.

Answer from Dr.  Koffman:  High blood pressure (BP) is a well-recognized side effect of ibrutinib that tends to increase in prevalence over time, so you would not be alone in needing meds for BP treatment. I do.

I recommend that you continue with the exercise and a DASH diet but see your primary care provider to get on meds for BP control. In the unlikely event that you can’t control your BP, then you might switch to acalabrutinib, but with you doing so well, I am hesitant to suggest a CLL therapy change now.

 

38. I have SLL and took a long time to get diagnosed because my bloodwork is normal. I was first diagnosed w/ Chronic Fatigue. Even w/ treatment and a good response for the lymphoma, I still have profound fatigue and it’s been suggested that I have both SLL and CFS. Have you heard of this?

 Answer from Dr. Furman:  There really are no data describing the association of chronic fatigue syndrome and CLL.  Given the difficulty with making a diagnosis of chronic fatigue syndrome and the overlap of symptoms with lymphomas in general, it is often hard to distinguish the two.

 

39. For a person with CLL over 65 and on IVIG therapy, what are the recommendations for the timing of flu shots and supplemental pneumonia vaccine? There are mixed suggestions on the internet ranging from no delay after IVIG to 2 months delay which is not possible with monthly infusions.

 Answer from Dr. Furman:  This is an interesting issue and one there are no data governing.  We do often use IVIG as an immune suppressant, but that is usually with a dose that is far higher than what we use as monthly replacement.  We do not expect this dose to be immune suppressant.  I would suggest waiting one week after the IVIG and then receiving the vaccination.  This is without any supporting data though.

 

40. My lymphocyte count keeps increasing but is still in the normal range. All of my other white blood cells are in normal range too. I worry that eventually my lymphocyte count will be above normal since it is increasing at a small rate but consistently. Is there anything I can do to reverse the consistent increase in lymphocytes?

Answer from Dr.  Koffman:  Lots of causes for a rising lymphocyte count, but if it’s in the normal range, there is little reason to be concerned.  Counts can fluctuate up and down. If it does go above normal, then a workup with your local doctors could look for some signs of infection, inflammation and even blood cancers if deemed necessary.

 

41. My one-year-old granddaughter just had her vaccinations and a couple of them were live viruses. Do you know how long I should wait to be with her? (I heard that the virus could shed for a week or so.)

Answer from Dr. Furman:  There are no hard and fast rules, but we usually say two weeks, although this only means close contact.

 Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.

 

42. Are ZAP70, CD38 and beta-2-microglobulin results still an important part of CLL prognosis, even if you are 13 del and mutated? And should they always be tested for?

Answer from Dr. Furman:  There are many important prognostic markers that could be followed in CLL.  ZAP70, CD38 and beta-2-microglobulin are just a few of the more clinically obtainable ones.  Overall, these do predict time to needing therapy, but with novel agents, all respond equally well to therapy, and are thus less important.

 

43. I am 64 and diagnosed with CLL in 2013. I came down with COVID in late March. My last WBC test before COVID was about 250. After a difficult period of months, I was able to make it back for my periodic monitoring and my WBC dropped to about 158! A retest in September confirmed the surprising drop with a WBC of about 186, and unfortunately a return to my previous upward trend. My oncologist offered no explanation for the drop in WBC with COVID. Can someone suggest a plausible explanation?

 Answer from Dr. Furman:  It is very common for fluctuations in WBC to occur due to acute changes in the day-to-day stresses on the system.  Regarding more long-term changes, we do see infections and other immunologic stresses result in shrinkage (and expansion) of disease burden due to cytokines produced during the infection.

 

44. My father is 50 and has been diagnosed with CLL three months ago. The doctor has said that it’s a Wait and Watch cycle, but my father’s B2M (beta 2 immunoglobulin) levels are increasing – 3.32 in September and now 4.47 in October. Should I worry?

 Answer from Dr.  Koffman:  B2M is one of many prognostic markers that can predict time to treatment for a group of patients. However, please remember while such predictions are helpful when looking at different cohorts, in that cohort, there are many outliers with much better outcomes.

 

45. If CLL is not causing symptoms and there is normal hemoglobin, white counts, and absolute lymphocyte and absolute neutrophil counts without lymphadenopathy and not experiencing night sweats or repeat infections, what would be reason to treat? This is in a patient who has had several previous treatments with Gazyva and was to be started on Gazyva and Venclexta but had an episode of feeling dizzy, nauseous, and cold sweat on low dose of Venclexta. Cannot take Ibrutinib due to chronic afib. Would Gazyva alone be a treatment or just monitor until there is progression?

Answer from Dr.  Koffman:  If counts are good and CLL is asymptomatic, there is no indication to treat. We have a whole section on this on our BASICs section on the website. Gazyva is not approved as monotherapy and is usually not recommended but has been used that way “off label” with good results.

 

46. Was on 40mg Lisinopril/12.5 HCTZ for years. BP was running low so HCTZ discontinued two years ago. Started ibrutinib seven months ago – nice response, minimal side effects except return of hypertension 155 / 85. 65-year-old male.  Resting heart rate 40s so no beta blocker or calcium channel blocker. Still on 40 of Lisinopril. My doctor prefers not to add HCTZ creatinine 1.2 to 1.4 with 45 to 50 clearance. Says spironolactone easier on kidneys. So, started 25 of Aldactone, later decreased to 12.5 because I began feeling dried out. Drinking 80 oz of water. Wondering your thoughts on diuretics and ibrutinib. I know I should drink lots of water. Is this to flush cells, or to stay hydrated, or both? Seems like diuretic will make it difficult to stay hydrated.

Answer from Dr.  Koffman:  Please be sure your doctors carefully monitor your potassium as both lisinopril and spironolactone can push it up, especially in the context of decreased creatinine clearance.

The treatment decision for BP control is based on your unique situation and co-morbid conditions. Can’t really comment without more data and knowing you, your preference and co-morbidities, and your full medical history.

 I know of no direct interaction between ibrutinib and hydrochlorothiazide, the most commonly used thiazide diuretic.

 Drinking lots of water is smart. Sorry we can’t help more.

 

47. Do you know if calquence interacts with curcumin?

Answer from CLL pharmacist and CLL patient, Tom Henry:  Yes, curcumin which is the active ingredient in turmeric does interact with acalabrutinib. The primary issue is that both these products thin the blood. While the anticoagulant properties of acalabrutinib are not as significant as with ibrutinib the potential exists for excessive bleeding or bruising when curcumin and Calquence are used together. 

 Because CLL patients often have low platelets that are necessary for normal blood clotting, I would recommend against using the curcumin unless your CLL team believes that the anti-inflammatory benefits of curcumin outweigh the risks of bleeding.

 

48. My husband is newly diagnosed CLL. He had an igVH test recently, but I cannot understand the results. The interpretation line states “igVH Somatic Hypermutation was not detected.” But below that it shows assay type (igVH mutation Analysis), detection parameters (VH1-7), and result (not mutated 0%). My question is … mutated or unmutated?

 Answer from Dr. Furman:  This result indicates that the CLL clone is unmutated.  Somatic hypermutation is the process where mutations are introduced into the immunoglobulin variable genes to make better antibodies.  This test did not detect any.

 Answer from Dr. Koffman:  I would add that CLL with mutated IgVH is thought to be a cancer of a more “mature’ “better educated” form of the B lymphocyte because it has been “mutated” to recognize a threat, and therefore it is better behaved and slower growing than the less mature B cells with “unmutated” IgVH.

 

49. In CLL, if your blood work is pretty good but you are having CLL symptoms such as bad night sweats, loss of weight not trying, no appetite, frequent infections, etc., should treatment begin at that point?

Answer from Dr.  Koffman:  Great question. Sorry to hear of your symptoms.  As we outline in our websites article: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/, bothersome symptoms that you are sure are caused by the CLL are an indication for treatment, and with the novel therapies, you should feel much better soon. Have your doctor assess that nothing else is going on, then I personally would start therapy.

 

50. I have unmutated CLL and I am currently watch and wait but I may be nearing the start of treatment. In addition to a generally healthy diet, are there scientifically validated dietary supplements that may be helpful for a person like me?

Answer from Dr.  Koffman:  There are no known supplements that help. There is evidence that those replete in Vitamin D at time of diagnosis have slower growing disease so check your level and some evidence about a very particular green tea extract that is no longer available slows CLL in some with mild disease. Tumeric shows some promise in lab studies. Bottom line- nothing proven to make a big impact.

 

51. I am a CLL patient who is trying to get on Disability (Social Security). A cancer doctor recently told me she could not help me but would write down my symptoms and I would have to find a GP to help me. I have been burned before. Is this true? Is it usually a GP who gets the ball through the Disability goal post or did she just lie to me to get the appointment over? 

Answer from Dr.  Koffman:  I believe that any doctor can help you apply for disability but the paperwork is no fun, so some may try to pass if off. It’s important that the application is properly worded to increase your chances, so I am not sure it makes sense to twist the arm of your hematologist. When I was practicing as a family doctor, I completed a lot of these forms.

 

52. I have had chemo twice and was on imbruvica for 3+ years, before it turned toxic. The chemo has wiped out my immune system and I get infusions to boost it. I am now itching and have a rash around my neck, under my arms and in my crotch. No doctors know how to correct this. Any help is appreciated.

 Answer from Dr.  Koffman:  Sorry to hear of your rash problem. If you haven’t already, consider seeing a dermatologist and getting scrapings for fungi, cultures and a biopsy to help make the diagnosis.

 

53. I am being treated for CLL with Venclexta and GAZYVA. So far I have tolerated everything very well – I’m on my last dose of GAZYVA. Because my platelets dropped (95), I am currently on 100 mg of Venclexta. Everything else is great. My hemoglobin is 14.9 and my WBCs are 7.8 – everything else is in line. I have always had psoriasis and it is flared up to a nine, when usually it is about a two or three. I went to a very highly respected dermatologist and they believe I should go on one of the new Biologics which will probably clear my psoriasis, and also reduce my inflammation. Neither my dermatologist nor oncologist feel that it will have any negative affect on my CLL treatment.  Have you ever heard of anybody being treated for CLL going on a psoriasis biologic?

Answer from Dr. Furman:  While I am not aware of any published data, many physicians likely have experience worth this and would be good resources. Your own physician may even have their own experience. 

Answer from Dr.  Koffman:  I would add that both the venetoclax and Obinutuzumab can lower the platelets.

 

54. I am 68 years old and otherwise healthy, diagnosed with Stage 0 CLL in January 2020. Follow-up in July and all was stable. Now that the weather is getting colder, can I safely meet up with my daughter and grandson in an indoor setting with COVID hanging over our heads? My wife and I have been very wary about doing this. What are your thoughts?

 Answer from Dr.  Koffman:  I don’t think there is a clear answer to this.  Personally, I do not see my adult children or grandchildren indoors who have not been quarantining for at least 2 weeks. Instead, we only meet outdoors > 6 feet apart with masks. Since nothing is 100% safe, it depends on the risk you are willing to take and several other factors: 

1. 1. Are your daughter and grandson quarantined? Really quarantined? – If they have not been in contact with anyone for 2 weeks, then that’s pretty safe.
   2. How big is the meeting room and what is the circulation and HEPA filtration?
   3. How long will you be together? The longer, the higher the risk. Visits under 20 minutes are likely lower risk.
   4. How far apart are you? Six-feet is a minimum. Further is better. 
   5. Are you all wearing properly fitted masks, preferably high quality N95s or KN95s? They help.

 Hope that helps with your decision. Again, I personally don’t see my family indoors, but I have friends who do. Younger grandkids also may not be maskable or controllable as we well know.

 

55. My mom has CLL and was recently diagnosed with shingles. She went through one round of antivirals and steroids, but it appears to be spreading. Should her oncologist be involved in a treatment plan?

Answer from Dr.  Koffman:  Herpes Zoster is usually managed by an infectious disease specialist, but it makes sense to have all hands on deck in a cancer patient where it is spreading so I agree with your sentiment to have her CLL doctor looped in.

 

56. Two statements in the November 17 CLL Society newsletter (“Vaccine Candidate” article) confuse me. (1) That we don’t have enough information about COVID and CLL, and (2) the abysmal mortality rate of CLL patients w/COVID. Can you clarify?

Answer from Dr.  Koffman:  The abysmal mortality is in symptomatic patients who are being followed for their COVID by the reporting hematologists. What we don’t know is how many CLL patients are asymptomatic or have very mild disease and don’t report it.

 

57. I am a 51-year-old CLL patient that was diagnosed 2012, treated with Bendamustine/ Gazyva in 2015 and currently has no CLL in my bone marrow. On November 12 my husband, daughter, and I were directly exposed to a person with COVID (less than six-feet away, unmasked) for approximately 20 minutes. I do not have symptoms (but my daughter has some mild ones). We were tested today (day five). How can I see if I am eligible to receive the FDA approved monoclonal antibody bamlanivimab, should I test positive? I contacted my doctor (Dr. Sharman at Willamette Valley Cancer Institute) and he says they do not have access to this drug. Is there an avenue for compromised CLL patients (I receive IVIG) to get this? I understand that there is a very small window of time that this can be administered.

Answer from Dr.  Koffman:  This is from the NIH on 11/18/2020 concerning their expert review panel (https://www.covid19treatmentguidelines.nih.gov/statement-on-bamlanivimab-eua/ ).  I have no inside scoop on getting the antibody, but I would probably want it.

• • At this time, there are insufficient data to recommend either for or against the use of bamlanivimab for the treatment of outpatients with mild to moderate COVID-19.
  • Bamlanivimabshould not be considered the standard of care for the treatment of patients with COVID-19.
  • An interim analysis of the BLAZE-1 study, a Phase 2, randomized, placebo-controlled trial, suggested a potential clinical benefit of bamlanivimab for outpatients with mild to moderate COVID-19. However, the relatively small number of participants and the low number of hospitalizations or emergency department visits make it difficult to draw definitive conclusions about the clinical benefit of bamlanivimab.
  • More data are needed to assess the impact of bamlanivimab on the disease course of COVID-19 and to identify those people who are most likely to benefit from the drug. Health care providers are encouraged to discuss participation in bamlanivimab clinical trials with their patients.
  • Given the possibility of a limited supply of bamlanivimab, as well as challenges distributing and administering the drug, patients at highest risk for COVID-19 progression should be prioritized for use of the drug through the EUA. In addition, efforts should be made to ensure that communities most affected by COVID-19 have equitable access to bamlanivimab.
  • Bamlanivimab should not be withheld from a pregnant individual who has a condition that poses a high risk of progression to severe COVID-19, and the clinician thinks that the potential benefit of the drug outweighs potential risk (see the criteria for EUA use of bamlanivimab below).
  • Patients who are hospitalized for COVID-19 should not receivebamlanivimab outside of a clinical trial.
  • The Panel will continue to evaluate emerging clinical data on the use of bamlanivimab for the treatment of outpatients with mild to moderate COVID-19 and anticipates updating these recommendations as more information becomes available.

 

58. I currently gave CLL Stage 1 with a very high blood cell count of 77.8. Is a COVID antibody test useless for me to take?

Answer from Dr.  Koffman:  If you think you may have recently contracted COVID and have recovered, an antibody might be helpful, though there are no data on how well we with CLL mount antibodies against COVID, so a positive test would be helpful, not so much a negative in my opinion. No recent to do the test unless you think you had it and are curious. A positive antibody test does not necessarily mean you are protected and immune. It just hasn’t been studied.

 

59. I am on Wait and Watch and have favorable prognostic factors, besides ZAP70. I tested positive for COVID-19. My first symptoms started 30-days ago. I was not hospitalized but had a severe cough and O2 levels of 93-95%. I am doing much better but still have a minor cough and severe night sweats. Please see my questions below:

What is the risk of COVID-19 reinfection for CLL patients? My guess is that immunocompromised patients are at a much higher risk. Is this true?

Answer from Dr.  Koffman:  There are no data on the re-infection risk in CLL. We believe that it is low in the general population at least in the short term, so that is encouraging.

My dad is on hospice in an assisted living facility and I would love to see him before he dies. Without knowing the risk of reinfection, I can’t weigh the risk and benefits to make a decision if I can see him.

Answer from Dr. Koffman:  I understand and wish I had data to guide you.

Will the vaccine work for CLL patients? What are the theoretical considerations in immunocompromised patients?

 Answer from Dr. Koffman:  Again, no data. CLL Society is looking to study exactly this question and is trying to raise finding for a study. We do know our response to other vaccines is inferior.

There are some very promising COVID-19 vaccines on the horizon. I understand that there are no immunocompromised people in the trials. Am I correct in believing that it is harder for me to make antibodies so the vaccine seems like it will most likely not work and that I would be much more susceptible to reinfection? Are there any thoughts on what kind of immune response we should expect in the future, or will CLL patients have to stay on lockdown for another year?

Answer from Dr. Koffman:  The CLL itself and its treatment impair our ability to make antibodies. How this will affect our response to a vaccine or re-infection risk is unknown. Sorry.

Should I get retested to protect others? I have not had another COVID-19 test since I tested positive. Northwestern Hospital mandates that two negative COVID tests are done at least 24 hours apart before returning to office care.

Answer from Dr. Koffman:  Yes. There is at least one case report of a CLL patient being a carrier for > 3 months with no symptoms.

 

60. What is the latest info on whether the vaccines will help us with CLL or not?

Answer from Dr.  Koffman:  I assume you are talking about a possible COVID vaccine. Sadly, there are no data as we were excluded from the trials. Based on our inferior response to other vaccines, I think it would be unwise to assume our immune response will mimic that of the general population. CLL Society is looking to secure funding to study the vaccine in folks like us.

 

61. I have now had five of six scheduled chemo treatments. Although treatments one through four were easy, after my fifth treatment I have been fatigued with low grade headaches, and low-grade fever at times. I feel like I have the flu much of the time. I have gone nowhere since my last treatment. Is this normal?

Answer from Dr.  Koffman:  Without knowing the type of chemo you received, it is impossible to be specific in any advice, but generally chemo gets more difficult to tolerate deeper into therapy, as the side effects can be cumulative, especially on the bone marrow. In fact, many cannot tolerate the full 6 courses of chemotherapy such as FCR due to the adverse events. With FCR, if the patient is in a complete remission with no detectable measurable residual disease, there may not be a need to finish therapy.

 

62. I am 64 and was diagnosed with CLL seven years ago. My condition has been fairly stable since then and I am still at stage one and on the watch and wait program. Will the new COVID-19 vaccines to be expected soon will work for me?

Answer from Dr.  Koffman:  I think it is reasonable to expect 2 or even 3 good vaccines to be broadly available in the first ½ of 2021, maybe sooner. Sadly, there are no data on how it will work for us as we were excluded from the trials. Based on our inferior response to other vaccines, I think it would be unwise to assume our immune response will mimic the robust response seen in the general population. CLL Society is looking to secure funding to study the vaccine in folks like us.

 

63. How fatal is CLL in adults above 50 years?

Answer from Dr. Furman:  With all of our new therapies, we don’t know whether CLL patients can expect a normal longevity, but the prognosis is excellent, which enables CLL patients to take advantage of therapies that are not yet even made it into early clinical trials.  The first patient to receive ibrutinib was in 2009 and it has quickly been added to by idelalisib, venetoclax, acalabrutinib, duvelisib, and zanubrutinib.  We do know that almost 80% of patients can expect an excellent long-term remission (7 years thus far) on ibrutinib.

 

64. I have CLL and have been on Ibrutinib treatment for that past 21 months. My latest bloodwork looks good. My latest CT scan shows my spleen is enlarged again and I have some enlarged abdominal lymph nodes. How can my bloodwork be normal but still have internal organs and lymph issues?

Answer from Dr. Furman:  Whether CLL cells circulate or not is one of the mysteries we still don’t understand.  Disease progression could be manifested as an increase in WBCs, lymph nodes, or spleen size.  There is not a particular meaning to which one.

 

65. Do you think the following would have an impact on developing antibodies after receiving a COVID vaccine (and actually should it be called a coronavirus vaccine): Stopping ibrutinib for dental surgery – before, during, or after receiving COVID vaccine.

Answer from Dr.  Koffman:  There are no data on immune response of CLL with or without ibrutinib. Doubt dental surgery would have an impact. Ibrutinib should be held for certain dental procedure.

 

66. Wondering thoughts about an intentional weight loss diet (40 lbs.), while being treated with ibrutinib (stable CLL).

Answer from Dr. Furman:  No contraindication for weight loss while on ibrutinib.

 

67. I am a 24-year-old female and my linofocitos (lymphocytes) are 4,1 ×10⁹/L. Is this high for linofocitos (lymphocytes)?  Normal?  Please reply.  I am scared.

Answer from Dr.  Koffman:  If I understand your question correctly, your lymphocyte count is very likely normal, and at worst, just slightly above normal depending on the local lab. Nothing to worry about. The lab report should have a normal range that you can reference. Just repeat it if it’s bit high, but it is not in the range that you would be diagnosed with CLL.

 

68. I am a CLL patient of four years.  In my discussions with my oncologist, he has mentioned of future possibility of need of Imbruvica. I am not in any medications now, 62 years old and will be eligible for Medicare part A and B in January 2021, through disability.

Currently I have BCBS of FL insurance. I need to find a Medicare replacement plan that would have imbruvica on their formulary. Can you or anyone in the Society help me my find out which plans have imbruvica in their formulary. Is there any way to find out?

Answer from Dr.  Koffman:  You need to check and compare Medicare Part D to see what is covered in their formulary and what isn’t but expect for ibrutinib with deductible and donut hole and your 5% share of catastrophic coverage to spend somewhere between $12,000 to $14,000 a year.  Without insurance, that would be the monthly cost. Most formularies include ibrutinib.

 It is possible that some all-inclusive MEDICARE advantage plans would do a much better job covering the drug cost and you would only pay the deductible, resulting in considerable savings. I am unfamiliar with all the advantage plans, so please get some other advice.

 Much of this is searchable online and sometimes you need to get on the phone to the various plans or get a trusted broker to help navigate, or directly call Medicare- they can help too.

 I spent hours deciding among plans with the help of a broker and the Medicare website that allows you to compare plans based on where you live and the meds you need.  You have to do your homework.

 

69. Are the prognosticators absolute? I have read in some articles where there’s a grey area and some tests are difficult to get a completely true reading. Everything seems to hinge on mutated/non mutated. Are there other markers that can balance out the nonmutated?

Answer from Dr.  Koffman:  Prognostic markers predict for groups, not individuals. There are many outliers. Specifically, as to IgVH, some researchers believe IgVH prognostic significance should be gradated and there is not an absolute cut off. Moreover, IgVH mutation is not important in predicting outcome with novel therapies such as ibrutinib, but it is important for predicting response to chemo. Finally, the most important marker is how you have done. The past can help predict the future.

 

70. Does CLL cause dental problems? I have been in watch and wait for over seven years but have had lots of dental problems. Should I get cleanings and checkups more than two times a year?

Answer from Dr. Furman:  CLL is associated with an increased risk of dental carries likely due to a decreased level of immunoglobulins in saliva of patients with CLL.  How often to see your dentist should be determined by what they observe inspecting your teeth.

 

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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.