Anxiety unwarranted

The visit with Dr. Treon was by any measure a big success.  The facility is world-class: several of Boston's biggest and most prestigious hospitals (Beth Israel Deaconess; Brigham & Women's; The Children's Hospital) are all located within a few blocks of each other, and the whole complex seems to be closely related to the Harvard Medical School.  There's a branch of the Harvard Coop (basically the Harvard University bookstore) right across the street from the Dana-Farber institute.  The whole area is bustling with doctors, nurses, students, clinicians, and other health-care workers.

Dr. Treon's research center - the Bing Center for Waldenström's Macroglobulinemia - has two full-time physicians (Dr. Treon and Dr. Irene Ghobrial) and a staff of nurse-practitioners, administrators, and other support staff.  It's supported by all the labs and research centers that make up the Harvard research facility.  Dr. Treon said that he gets help from the best geneticists in the world when he needs it.

My visit started with registration, a quick review of vital signs (blood pressure etc), and then 40+ minutes with Patricia Sheehy, Dr. Treon's nurse-practitioner.  She reviewed my symptoms, confirmed that I have WM, and discussed several treatment options with me.  She also patiently (very patiently) answered all my questions about the disease mechanisms, the definition of various terms, and some symptoms that I thought might be related (ringing in the ears; blurry vision).  The tinnitus (ringing) might be related, but the blurry vision is probably not, because rubbing my eyes can make it go away.

Tricia invited me to join a statistical trial where they're tracking about 1000 patients.  This will help them try to identify causes of WM and keep track of which treatment regimens are effective.  I signed right up for that one.

She also described a trial of a drug called everolimus.  Everolimus has been approved in transplantation medicine (as Zortress in the US and Certican in Europe), and for cancer of the kidney in the US (as Afinitor). It has also been approved for second-line treatment of WM, i.e. for treatment of WM if Rituxan therapies proved ineffective.  (To use some of my growing vocabulary of jargon, for treatment of patients who are "refractory" to Rituxan therapy.)  Dr. Treon is working on a trial of everolimus as a first-line treatment, and they invited me to join that trial as well.

After Tricia provided all that information, she left us to read the info about the everolimus trial while she brought Dr. Treon up to speed on my situation.  Dr. Treon came in, and gave me a brief physical exam, including probing the lymph nodes in my neck, stomach, and groin, and looking at my hands and feet for evidence of cryoglobulins (I think).  After that, he spoke with me for 30 minutes or more about the treatment options.  There are several variations of Rituxan treatment, all of which involve Rituxan in combination with chemotherapy and a steroid.  The steroid just seems to make everything work better.  The chemotherapy options are Cytoxan, Velcade, Cyclophosphamide, and Bendamustine.  Each has its pros and cons.  They are what are known as alkylating agents, and they basically stop cells from dividing and cause them, ultimately, to die.  It's not clear to me how they target the correct cells.  He did say that the course of these drugs is limited, because aggressive treatment with them can, in the long term, result in other malignancies.  He didn't indicate how the particular set of drugs is chosen.

My impression had been that with Rituxan therapy, one can expect to go into remission, more-or-less, and enter a phase called "watching and waiting."  In this phase, most of the symptoms have gone away, and your blood levels and bone marrow are monitored.  If the indications (IgM, bone marrow invasion) come back, you go on the therapy again.  Dr. Treon said this level of remission is relatively rare, and that it is much more often the case that after the initial course that a maintenance course is necessary.  The initial course is an infusion of the Rituxan cocktail every three weeks, for 18 weeks (six treatments).  The maintenance is an additional infusion every three months.  An infusion pretty much takes all day, with constant monitoring of your vitals and any effects you may feel (chills, unusual tastes in the mouth, ...).  Also, the chemotherapy can cause hair loss and other "classic" chemotherapy side effects.

Everolimus is a pill.  You take one a day.  For the trial, they require a visit to DFCI (Dana-Farber Cancer Institute) every 4 weeks for the first 3 months, then another visit every three months after that.  The trial lasts 48 months, or until the drug isn't helping your symptoms.  If it's not helping, you can go to the traditional therapy (Rituxan etc).  At the end of the 48 months, either the drug will be approved, and you can stay on it with insurance paying for it, or you can buy it yourself, or you can go to Rituxan.

I'm leaning towards joining the everolimus trial.  I've still got a few questions about it, and they also had to take some blood to make sure I'm eligible.  I went into the blood lab, and they drew 21 separate vials of blood!  I asked them if they could get both arms going at once to make it go faster.  I'll post separately on my thoughts on joining the trial.