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Does ibrutinib need to be stopped if a rash develops?
If the rash is related to the ibrutinib, it should be stopped. One option is to try a lower dose and see if the rash recurs. We do not know if the rash is a dose-related adverse effect, but since it is likely due to the off-target effect of ibrutinib inhibiting EGFR, it might be. For those who develop a rash on ibrutinib, acalabrutinib is still an option.
My husband is 74 years old and has relapsed CLL. He received BR treatment in 2014. Twenty-four months later we must deal with treatment again. He will be starting Imbruvica shortly. My question is: My husband has always been very fit and still walks 5 miles a day after giving up running 7 years ago. Consequently, he has a low heart rate hovering at about 55. He doesn’t have any heart issues, but can this become an issue for developing afib after going on Imbruvica?
The risks factors for developing atrial fibrillation while on ibrutinib include prior episodes of atrial fibrillation, hypertension, other cardiac issues, and acute infections. Having a low heart rate due to being fit will not increase one’s risk of complications from ibrutinib. While we have not data, it might even protect against complications. The heart rate will increase while in atrial fibrillation, but once back in sinus rhythm, the heart rate should return to baseline.
Can you explain the role that a Notch 1 mutation has as a prognostic indicator? Furthermore, does it matter if it there’s a “slight” mutation? Or are all mutations created equal?
Notch1 mutations are not all created equally. There is one particular notch1 mutation that is most common and results from two base pairs being deleted, which results in a “frame shift” in the DNA sequence and leads to a shortened protein. Any mutations that do result in the truncated protein will lead to a more aggressive CLL course and an increased risk of transformation.
I have brittle, splitting fingernails as a side effect of Imbruvica. Does the supplement biotin help with that and is it OK to take it. Thank you.
Some patients have had success with biotin supplements and they are safe to take. Others have also used coconut oil applied to the fingernails as well.
Since my original diagnosis in 2012, I have had 3 FISH tests and 4 IGVH tests. The first two FISH tests showed that I was 13Q deleted. The first IGVH showed me mutated (5%), the second done two months later when I changed doctors said I was not mutated. The new doctor ordered a third IGVH from a different lab and the results of that one was unable to determine if I was mutated or not. In 2015 I changed to a CLL specialist and he repeated both the FISH and the IGVH. Now the FISH shows me as having no deletions (Normal FISH) and the IGVH shows that I am mutated (3%) right above the 2% level that determines whether I am mutated or not. Is this normal to have such varied results? Also, the specialist says is recommending FCR when I start treatment because I am mutated and 60 years old. I am apprehensive of this because of the varied IGVH results and the now normal FISH. Any thoughts?
It is always possible that there could be lab to lab variability due to the quality of the testing. It is also possible that the variability in the iFISH is due to the normal cutoffs present in the labs. The only means to really know which is correct would be to examine the data. It is also important to note that if you have gone 4 years without requiring treatment, you are likely having somewhat indolent disease (which is great). I am not sure all of these prognostic markers would change anything, because you are going to be followed until you progress.
It is also important to understand that not everyone agrees with using FCR for mutated CLL. Second opinions are always important.
Does the ketogenic diet help patients who have indolent CLL? Are there any diets or alternative medicine treatments that help this condition?
There is no data supporting diet having any impact upon CLL outcomes, beyond a well-balanced diet and healthy living extending life.
There are many myths out there regarding sugar and cancer. The theory that gave rise to this is that high sugar diets lead to increased insulin secretion. Some solid tumors have insulin receptors, which might stimulate their growth. This is only a theory and has never been proven.
I am W&W with few symptoms. I have many aches and pains especially in my knees, which I think are mainly non-CLL related. Can CLL be triggered by physical trauma? If my CLL started near my knees, in the early stages would just my knees ache or would all the bone marrow in one’s body ache? Does CLL spread throughout the bone marrow or is it usually confined to one place?
CLL cannot be caused by physical trauma and since the blood and bone marrow are one compartment, it is usually disseminated at the outset.
I’ve never been especially prone to rashes or dermatological issues, but since pretty much the time I was first diagnosed with first MBL in 2015 and then CLL a little later, I’ve had a rash, diagnosed as eczema, that just won’t go away. In fact, it was this condition that got me into my PCP’s office for the visit that eventually resulted in a blood draw, and my MBL diagnosis. I’m on watch and wait, have no other symptoms, have never had treatment, and have normal or near-normal blood counts.
I’ve heard of CLL patients experiencing rashes, but isn’t it a little early for this? In the alternative, could this “eczema” in fact be a fungal or bacterial infection that my immune system, already somewhat compromised, can’t fight off?
Eczema is best thought of as an abnormal immune response, either to foreign antigens, self antigens, or to no specific antigen. In this way, it is possibly related to the immune dysfunction that results from CLL. It would be unusual for a person with MBL to experience these types of immune abnormalities though.
I recently started seeing a new Hematologist/Oncologist who says I am on the cusp of needing treatment, with labs for example showed hemoglobin at 10 g/dl, platelets at 141 and WBC 207. Not long before seeing him, I had a root canal because of longstanding infection, and stomach problems over several months and having taken antibiotics (CT showed severe diverticulosis, but no diverticulitis). I don’t have severe night sweats, fevers, or extreme fatigue; can I hold out until some of the new non-chemo treatments are available?
It is not possible for anyone to answer your question without knowing all of the salient information. There are many possible explanations and treatment options. You should seek a second opinion by a CLL expert. Additionally, non-chemotherapeutic treatments have been available for some time.
I just started my fourth month on ibrutinib. My white blood cell count spiked to 350 after two months and hasn’t dropped yet. How many months does it normally take for the WBC count to drop?
The median time to resolution of the lymphocytosis is approximately 14 weeks, but with a range that extends up to 104 weeks. The one factor that correlates with a longer time to resolution of the lymphocytosis is having a mutated IgVH. The prolonged lymphocytosis does not predict for any poorer outcome.
I was diagnosed in June of 2014 and was treated with FR in September and October of that year. I had a bad reaction to the treatment and it was discontinued. I was in remission in 2015, but then relapsed in January 2016. I started Imbruvica in March of 2016. My question is: I have breathing issues since FR. Furosemide has mitigated most of the problem. Can CLL cause water retention in the abdominal area that would put pressure on my lungs? I have no deletions.
It would be unlikely to be from the CLL. It is important to see a CLL expert.
I am CLL Stage 0, and have been for over 4 years. I am one of those people who are trying to take vitamins and supplements and eat mostly a vegan diet, juicing along the way. I understand the concern many doctors have about overdoing over the counter and untested pills and powders. However, there is one question I would like to ask on nutrition. IS A HIGH PH DIET WORTH IT? Many articles I’ve read suggest Leukemia patients should be concerned about acidic foods.
There are no data available suggesting any impact of the diet’s pH on health outcomes (short of acid being bad for teeth enamel).
Richard Furman, MD is Director of the CLL Research Center at Weill Cornell Medical College and a member of the Lymphoma/Myeloma Service in the Division of Hematology/Oncology.He is a member of the Medical Advisory Board for the CLL Society.
Originally published in The CLL Tribune Q3 2016.