You can explore clinical trial information at clinicaltrials.gov. (This is a US government registry of all clinical trials held throughout the world.)
As WM is an orphan disease, most current therapies are hand-me-downs from other cancers such as leukemia, non-Hodgkin lymphoma and multiple myeloma. Clinical trials to evaluate new therapies for WM are rare, especially in Canada. If we are to accelerate progress towards a cure, more of us need to step forward and participate in clinical trials.
Clinical trials offer the patient an extra treatment option in that the conventional treatments will always be available.
There are three phases of clinical trials:
Phase 1– establishes the safe dosage of a new drug.
Phase 2– determines the efficacy of new drug for a particular cancer.
Phase 3– compares the new drug against current therapies.
Clinical Trials for WM patients are available in the US. Please consult your physician and the US hospital and research clinics involved as to your compatibility for the trial. Further information can be obtained by contacting the WMFC.
WMFC maintains a current list of active or upcoming WM clinical trials in Canada.
Dr. Berinstein at the University of Toronto Odette Sunnybrook Cancer Centre, is currently planning and has funding to initiate a new trial in previously untreated WM. The trial is a phase 2 trial of the combination of two very effective treatments: Bendamustine + Rituximab, and the new second-generation BTK inhibitor Acalabrutinib Neil Berinstein MD, FRCP(C) Professor of Medicine/Immunology University of Toronto Odette Sunnybrook Cancer Centre Toronto, Ontario M4N 3M5 416-480-5248 Neil.firstname.lastname@example.org
Research Project: Dr. Chen, in a WMFC funded project, is researching confirmation of a WM diagnosis through blood samples rather than performing a bone marrow biopsy. Open for Participants. Use the contact below for additional information.
“The Canadian Agency for Drugs & Technologies in Health (CADTH) is an independent, not-for-profit organization responsible for providing Canada’s health care decision-makers with objective evidence to help make informed decisions about the optimal use of drugs and medical devices in our health care system.” The review of cancer drugs by CADTH is carried out by the pan-Canadian Oncology Drug Review. This “is an evidence-based, cancer drug review process. The pCODR process is designed to bring consistency and clarity to the assessment of cancer drugs by reviewing clinical evidence, cost-effectiveness, and patient perspectives, and using this information to make recommendations to Canada’s provinces and territories (except Quebec) in guiding their drug funding decisions.” More details can be found at https://cadth.ca/pcodr
Please note that the provinces have final authority on whether or not the drug in question will be funded and for which types of cancer if the drug is funded.
Once your Oncologist recommends a treatment, make sure you are comfortable with the decision. Conduct your own research, contact the Canadian Lifeline or discuss with your fellow support group members in case they have had to make a similar decision. In certain cases, it might involve getting a second opinion. With a disease as rare as WM, seeking a second opinion may benefit you as well as your Oncologist, as he/she, may have had very limited exposure to treating WM or may not be familiar with all the treatment options that are available to treat your symptoms or minimize side effects. Speaking with a consulting oncologist who may have experience with treating your specific symptoms or at least having treated numerous WM patients, could be very beneficial. This approach might be particularly useful in situations involving relapsed (cancer has returned) or refractory (treatment was not successful) treatment. It is very useful to maintain and forward copies of all your medical records and tests to minimize costs and time for the second opinion.
In Canada: Ask your GP or Oncologist to refer you to a second Oncologist for a second opinion. No one knows all the answers for this disease and requesting a second opinion is valuable to both the patient and the referring Oncologist. You need to be comfortable with your Oncologist’s recommendations especially given the rarity and the few patients with WM your Oncologist may have treated.
In the United States: There are a few hospitals in the United States that conduct research in WM and also specialize in treating WM patients. Just by the sheer numbers, these Oncologists typically see a significantly larger number of WM patients than Oncologists in Canada and may have seen other patients with similar concerns. Medical work in the United States can be expensive, so we recommend considering the following suggestions:
Request a Doctor with Doctor Consultation: Discuss with your Oncologist as to whom he should contact for a second opinion. A few WM experienced US Oncologists are prepared to offer this type of consult as a courtesy to your Oncologist at no cost or nominal cost to you. The WMFC can make some recommendations as to whom to contact should you have some concerns. This is definitely the quickest and the least expensive route, although you may be left out of the discussion.
Send your medical records and tests directly to the consulting Oncologist: This will take more time and there will be a cost involved. Quite often, the consulting Oncologist will be familiar with the Canadian treatment protocols and drug approvals and can make recommendations for treatment in Canada. Also, the consulting Oncologist may request further testing that, with the approval of your Oncologist, can be conducted in Canada. This can take a few days or weeks to evaluate your records and make recommendations for treatment and any further testing that is required and will be moderately costly.
Travel to the United States and see an Oncologist: This can be expensive; however, it might be worth it especially for those patients who want to be directly involved in the second opinion process. Again, the consulting Oncologist may work with your Oncologist and arrange to have as much testing and treatment done in Canada to minimize the costs. There is also the added advantage of possibly being exposed to the opportunity of participating in Clinical Trials in the US, that may be compatible for treatment in Canada, to offer you a different treatment option. Typically, many of the costs associated with Clinical Trials are assumed by the hospital or drug companies involved, in an attempt to encourage your participation.
The WMFC has, through a research funding relationship with Bing Centre for Waldenstrom’s Macroglobulinemia, at the Dana Farber Cancer Institute in Boston, become familiar with their second opinion protocols, which we summarize below. It is our hope that in time the WMFC will be able to expand the listing of US institutions offering second opinions to Canadian WM patients.
Request a Doctor with Doctor Consultation:
Dr. Castillo, at the Bing Center, who has seen literally hundreds of WM patients, is willing to have a phone discussion with a Canadian patient’s oncologist to answer questions about the patient’s unique case. This is a courtesy that Dr. Castillo offers to Canadian oncologists and there is no fee for this service. Please note, this is a doctor to doctor phone call and the patient does not participate in the call. This is definitely the quickest and the cheapest route. Your oncologist can contact Dr. Castillo at JorgeJ_Castillo@dfci.harvard.edu
Sending your medical records to the consulting oncologist:
Travel to the United States and see an Oncologist:
To arrange an appointment, the patient can contact Christopher Patterson, Administrative Director at the Bing Center. Mr. Patterson connects the Canadian patient with The DFCI New Consult Coordinator and he/she can assist the patient in scheduling the next available time slot to see the WM specialist and all the required logistics that are needed for the appointment. The costs are explained in the breakdown during the set up of the appointment by the consult coordinator. It’s all a matter of what is needed prior to the appointment; CT scans, bone marrow biopsy, blood work, just the visit or any combination thereof. Insurance plays a part in factoring the costs, too, which is explained by the new consult coordinator. All in all, the costs vary depending on the person. Christopher Patterson can be contacted at email@example.com or directly by phone at 1-617-632-6285.
A Second Option for US Second Opinions:
As an alternative to travelling to Boston, the Mayo Clinic in Rochester Minnesota is also an excellent choice with a strong focus on both the treatment and research in WM. They are very receptive to discussing treatment options with Canadians and will definitely provide second opinions. Should you be interested in pursuing discussions with the Mayo clinic, please refer to the contact information below.
Mayo Clinic Hematology
200 First St SW
Rochester, MN 55905
Should you encounter any difficulties in arranging an appointment, please contact Dr. Stephen Ansell at firstname.lastname@example.org directly.