Ask-the-Doctor Programs

Since the "Ask the Doctor" feature began on the IWMF talk list, many patients have e-mailed questions to be answered by our current responder, Dr. Morie Gertz. Here is a sampling of the questions and answers:

Question: Is it advisable to drink 8 glasses (including fruit juice) a day? My oncologist said it would reduce my serum viscosity.

Dr. Gertz: There is no clinical evidence to support 8 glasses.

Question: My doctor advises me to totally abstain from alcohol.

Dr. Gertz: No alcohol while on steroids. Otherwise, moderate consumption is ok.

Question: Although the cause of WM is not yet known, can you state how long the root cause can linger in the body before symptoms can be recognized? Can this period be as long as 40 to 50 years?

Dr. Gertz: It is common for patients to have the protein 5-10 years unrecognized. I have patients with IgM documented for 20 years but I believe 40-50 might be a conceptual stretch.

Question: At what IgM count would you start treatment? What is the most favorable treatment for the majority of WM patients?

Dr. Gertz: There is no level of IgM that mandates the initiation of treatment. All patients are different and many remain asymptomatic at levels that would be considered extremely high. It is very controversial as to what the initial therapy should be.

Different centers have different philosophies all of which can be successful in a given group of patients. Consult with your physician as to the pros and cons of each treatment.

Question: When a person is anemic and is only being treated with plasmapheresis, at what hemoglobin count would you recommend red blood cell transfusions?

Dr. Gertz: In general plasmapheresis is not an effective treatment for anemia. Anemia is an indication for procrit to try to stimulate blood production or chemo to reduce the bone marrow burden of IgM. There is no specific threshold which requires transfusion. Transfusion is indicated by the patient’s symptoms of fatigue, shortness of breath, or lassitude.

Question: I have had heavy night sweats for two years. Are they doing harm to my body and should I be treated?

Dr. Gertz: Night sweats in the presence of WM is not known to have any adverse effect on any of the body’s internal function and if all other aspects are stable, sweats alone are not a compelling reason to treat.

Question: I am sorry for my English. I am an Italian woman. I am 50 years old. I am suffering from Waldenstrom’s disease. I would like your advice: the address of institute in Italy or Europe for to follow a treatment. I tank you.

Dr. Gertz: Would refer to Dr. G. Merlini and G. Pallidini who are in Pavia, Italy, and have extensive knowledge. Merlini trained under Dr. Waldenstrom 25 years ago!

Question: Most WM patients respond to their first line of treatment going into partial or complete remission. The cancer is nearly defeated but recurs. Why is there such a delay in getting a clean-up vaccine to keep the cancer from recurring?

Dr. Gertz: The ability to produce a safe and effective vaccine is the focus of an enormous research effort. It is difficult to find an immunizing protein that is strong enough to evoke an immunity response from the patient. The protein must be unique to the cancer cell and not evoke a response that would damage normal tissue. Medical science is actively addressing this problem.

Question: Has anybody with WM had a problem with autoimmune hemolytic anemia (antibodies attacking healthy red cells)? I have undergone standard chemo treatments, splenectomy, and gall bladder removal and the only thing that seems to stop it is 10 mg doses of prednisone.

Dr. Gertz: Most clinicians agree that steroids and splenectomy are the primary modalities of treatment. After they have been used, great controversy exists and no consensus exists as to the steps the patient should take.

Question: How does one get a blood sample sent to a different lab when Medicare is footing the bill? Also, how does one get lab work checked at Mayo Clinic?

Doctor: Mayo Medical Laboratories is the laboratory commercial arm of the clinic. If patients want Mayo processing of samples, they may need to request Mayo Med Labs. Often there is a contractual agreement.

Question: Why is there such a wide fluctuation in IgM results from lab to lab?

Doctor: On one level, a major problem with Waldenstrom’s protein is that there are several assays that aren't great but well established and used extensively. But there are some newer assays, which have improved this situation. So it is possible that some labs are using the old tried and true methods while others are using the newer methods.

Question: What is the difference between Procrit and Aranesp, both used to treat anemia (and also illegally to improve athletic performance).

Doctor: They are equivalent in terms of effectiveness. Aranesp has a longer half-life in the blood and is given once weekly. Procrit is given from 1 to 3 times a week. No studies indicate any therapeutic superiority of one over the other.

The speaker, Dr. David Agus, is a well-known Waldenstrom’s expert, who has been at Cedars-Sinai for about a year, having come from Memorial Sloan Kettering in New York. Agus was involved in the early research on Rituximab (trade mark Rituxan) and served on Genentech/Idec Pharmaceuticals medical advisory committee for Rituxan.

After brief introductory remarks, during which he distinguished between traditional chemotherapy such as chlorambucil, the purine analogs 2CdA and fludarabine, and Rituximab, which he classified as immunotherapy, he took questions from a very enthusiastic, responsive audience. It immediately became clear that Agus’ intent was not to sell the audience on any specific treatment, that the choice of treatment must be made between physician and patient. The following are a few of the questions and answers in abbreviated form.

Question: Will large doses of Vitamin C strengthen the immune system?

Doctor: Vitamin C is good for cancer cells. It may strengthen the very cells we want to destroy. Vitamins are chemical compounds. Go back to nutrition, back to exercise. Radically altering one’s diet is not effective. Eat a balanced diet, heavy on vegetables, lighter on meat, and add tofu.

Question: Can WM affect memory loss?

Doctor: We don’t know. The stress of the disease, chemotherapy, high IgM all can affect cognitive function.

Question: How often should we have CT scans?

Doctor: Because it is important to know what is going on inside the body, CT scans should be done regularly, on a schedule determined by patient and physician.

Question: What is the average life expectancy of a patient with Waldenstrom’s?

Doctor: Throw out the statistics! There has been so much progress toward control of the disease that the former figures are no longer relevant.

Question: Is it necessary to test serum viscosity?

Doctor: Not regularly. The test is often unreliable, and IgM is a good indication of viscosity.

Question: Should we harvest and freeze stem cells for possible future transplant?

Doctor: Not routinely, I do not recommend high dose therapy and stem cell transplant for the treatment of WM. It has never cured WM and there are no studies demonstrating that it is better than standard therapy.

Question: What about thalidomide?

Doctor: Thalidomide has shown only marginal activity with WM, and at the dosages required, it is quite toxic.

Question: Bexxar/Zevalin?

Doctor: Bexxar/Zevalin are radioactive antibodies which have significant activity in WM, but are more toxic than Rituximab. More studies are necessary to understand their place in the treatment course of WM.

Question: Do antiangiogenesis agents hold promise?

Doctor: Angiogenesis relates to the formation of blood vessels, which malignant cells need to grow and multiply. Even though WM is not a solid tumor cancer, the cells require blood vessels, and therefore antiangiogenic compounds should be effective.

Question: What about vaccines?

Doctor: Vaccines are potentially exciting. It takes significant time, however, to produce a vaccine for an individual patient.