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Can you explain IVIG therapy, when should it be used and for how long? Also, what are the side effects?
IVIG (=intravenous immunoglobulin) are antibodies (immunoglobulins) pooled from healthy blood donors that can be used to augment the immune system of patients with hypogammaglobulinemia. These antibodies are collected and treated in order to remove any infectious particles.
In CLL patients who have recurrent infections and are hypogammaglobulinemic (have low antibody levels), benefit from receiving IVIG by developing fewer infections.
My question pertains to neutropenia. What steps can I take as my wife’s caregiver to help her maintain her amazingly good health despite the fact that she has CLL? We know about avoiding buffets, sick people, washing hands thoroughly, and washing vegetables and fruits –is there anything else we should be doing or not doing?
It is unclear from your question why you are concerned about neutropenia. Very few CLL patients have neutropenia. Often, when present, as long as it is not associated with chemotherapy, it is very well tolerated. The most important step to take to prevent getting sick is just good handwashing. The others are usually not necessary.
My biggest concern is what is the right diet for a person diagnosed with CLL?
I read about all plant based diet and many testimonies, yet they come from people who have tumor cancers. There is the ketogenic diet, but I haven’t heard any testimonies of CLL patients being helped with this type of diet. Is it better to take a balanced approach while eliminating processed sugars and fake foods, rotating protein sources as to get all types of nutrients and vitamins?
There is no particular diet that benefits a CLL patient beyond a well-rounded, balanced diet. There are no data that any of the diets describe help treat cancers of any type. There are diets that have been shown to help decrease the risk of certain cancers, but none for CLL. There are laboratory data supporting green tea, flavonoids, curcumin, resveratrol, but no clinical data has supported the use of these agents. Many things work in the laboratory and have no impact clinically.
I was wondering if getting a massage would be okay, as long as it didn’t involve a deep tissue or a trigger point massage. Would that contribute to the release of more white cells from the lymph nodes into the blood?
There is absolutely no concern regarding CLL patients receiving massages. The massage itself does not release WBCs into the blood or induce any disease progression.
I was on the idelalisib/rituximab trial that was stopped due a toxicity problem. The trial worked for my CLL and I have been in remission for 7 months without treatment. One of the side effects seems to have been an autoimmune response affecting most of my joints. I have no previous history of any type of arthritis. My question: Is this symptom transient or is it going to be an ongoing problem?
Everyone is different and it is not possible to know. Most patient’s joint aches related to idelalisib stop when the idelalisib is stopped.
I have been on ibrutinib for 2 years and have had a great response. My blood work is now normal. I have gotten through many side effects and have noticed that many have subsided. The one side effect that has not improved is muscle and joint pain. Is there any data about when this should subside? I go to a pain clinic and that helps, but would like to not depend on that treatment. Also, if and when this drug stops working, is it more difficult to respond to other treatment? I definitely have a love-hate relationship with ibrutinib but it beats the chemo I had.
Muscle and joint aches associated with ibrutinib typically resolve after a period of time. It is unclear what to expect this far out. Regarding other treatments, there are several that are available if the ibrutinib does stop working.
With all the advances we are making in CLL in the United States, are we learning anything from research from other countries that are applied to CLL treatments? Do patients from other countries have options we don’t?
All of the recent advances in CLL have been approved in the U.S. before elsewhere and the vast majority of the studies were done in the U.S. It is safe to say that the access to novel therapies in the U.S. far surpasses that of anywhere else.
After 3 1/2 years on ibrutinib, I continue to do well. Looking to the future, I know that with high-risk CLL (-11q and unmutated status) my benefit will not continue forever. I wonder if I should look to combine ibrutinib with venetoclax sooner rather than later which might prolong my survival with quality of life.
The important concept that if you are responding to a treatment, there is no need to try anything different. We do know that after five years, almost one-half of the 11q patients are in remission on ibrutinib.
What do you do if you have a chronic shingles virus infection? Who are the experts that may be able to help with continued health problems related to the shingles virus?
All shingles virus infections are chronic. There is no means for ridding the body of the virus. Acyclovir or valacyclovir can suppress the virus and prevent a reactivation from occurring, but cannot clear the infection.
What is the recommended dose for ibrutinib? Is there a relationship to a patient’s weight and the appropriate number of pills?
The approved dose for ibrutinib is 420 mg daily. We have some data suggesting it be necessary to have a dose of at least 2.5 mg/kg/day. Some toxicities do appear to be dose related, so it is possible in smaller patients to decrease the dose and diminish the toxicities, without losing efficacy.
How many CLL/SLL patients are there in the US? My understanding is that even though they are the same cancer cell, most are diagnosed with one or the other, and not both.
CLL and SLL are the same disease and are considered one entity, CLL/SLL. The government’s statistics do separate them, but patients can present with one form and relapse with the other. Overall there are approximately 20,000 new cases of CLL/SLL in the United States each year.
I am taking ibrutinib and am doing very well. Is cosmetic surgery safe for me to consider? Also, are cosmetic fillers safe? I know that Botox is contraindicated for me because I also have Myasthenia Gravis, but will other fillers cause a problem?
Since ibrutinib does affect platelet function, it is necessary to hold the ibrutinib prior to and after any surgical procedures. Otherwise, there is no problem with cosmetic surgery.
Has the relevance of prognostic markers (e.g. FISH, IgHV) changed with the advent of new therapeutic approaches?
Yes, markedly. Many of the prognostic markers still predict time to treatment, but the response rates to the novel agents are not impacted by any prognostic marker. There are some prognostic markers that demonstrate differences with progression free survival with ibrutinib though, like deletion 17p.
With CLL cells occurring in various parts of the body, why is FCR, particularly, so hard on the bone marrow especially (‘myelosuppressive’)?
FCR is particularly hard on the bone marrow, because the bone marrow and CLL cells are very similar biologically. Therefore, the biology that enables FCR to work so well on CLL cells is present in the bone marrow cells and results in them being sensitive.
After having all the usual tests for CLL, including IgHV mutated versus unmutated, followed by a FISH test; why is it then necessary to have a bone marrow biopsy? What exact extra information could be provided that would determine the type of treatment?
It is often not necessary to have a bone marrow biopsy. The only reason to perform a bone marrow biopsy would be if it were able to provide any information that would change clinical decision-making. At diagnosis, this is unlikely, but when treatment is required, it may help differentiate causes of low blood counts.
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 Q4 2016.