TORONTO & DISTRICT MULTIPLE MYELOMA SUPPORT GROUP NEWSLETTER Website:

Transcription

1 TORONTO & DISTRICT MULTIPLE MYELOMA SUPPORT GROUP NEWSLETTER Website: May 2018 Newsletter # 124 In This Issue Next Meeting Details Last Meeting Announcements: Upcoming Guest Speakers Drug Access News Member Interest Survey Social Events for the Support Group Myeloma Canada National Conference Myeloma Canada Newsletter Mailing List Videos from Previous Presentations Suggestions or Requests Major Events Princess Margaret Walk for Myeloma Research, Bloom Chair June 17, 2017 Myeloma Canada Multiple Myeloma Marches Our Journey with Multiple Myeloma Dawne Warner and Al Willy Fundraising Summary of Presentation at April 7, 2018 Meeting News in Myeloma Treatment and Research Member Interest Survey Form Hello Fellow Members and Friends, If you are now receiving paper newsletters, and you have an address where we could instead you the newsletter (in colour) please contact Dave McMullen see contact below. Thank you! Next Meeting: Saturday, June 2, 2018 Open to patients, family members, caregivers, and any other interested people. Speaker: Dr. Shira Taylor, MD Psychotherapist. Dr. Taylor is a family physician who specializes in mind/body/spirit approaches to healing and wellness. Through individual psychotherapy, workshops and retreats, she helps people use the tools of mindful awareness and reflection to find deeper meaning and connection in their lives. Dr. Taylor has experience working with myeloma patients. Topic: Mindfulness and Multiple Myeloma: Minding Your Inner Monkey Meeting Time: Location: 2:00 4:30 p.m. Jubilee United Church 40 Underhill Drive North York, Ontario The meeting starts at 2:00 p.m., but you are welcome to come any time after 1:30 p.m. to enjoy refreshments and socialize. How to get there: Driving Directions Take the Don Valley Parkway, exit east on Lawrence Ave. Immediately turn left at the first intersection, Underhill Drive, and continue north two blocks to the church. There is plenty of available parking. Enter by the north door. 1

2 How to get there: Public Transportation 1. Take the Lawrence Ave. East bus (Route#54) from the Yonge and Eglinton subway station. Exit the bus at Underhill Drive and walk two blocks north to the church. 2. Take the Woodbine 91C bus from the Woodbine Station on the Bloor-Danforth subway line. This bus goes up Underhill Drive past the church. Google Maps Link: Meeting Contacts: Dave McMullen , Don Hunter , Munira Premji , Jan Wleugel , Bob McCaw , Patrick Taylor , Last Meeting: April 7, 2018 Guest Speaker: Dr. Anca Prica, Staff Hematologist, Myeloma Program, Princess Margaret Cancer Centre. Topic: News in Myeloma Treatment and Research. A summary of the meeting can be found later in the Newsletter. Announcements 1) Upcoming Guest Speakers August 11: October 13: Ingle International Insurance Travel Insurance for Cancer Patients Dr. Jonathan Sussman, Radiation Oncologist, Director of the Supportive Care Research Unit, Juravinski Cancer Centre Survivorship and Overview of Radiation Therapy for Myeloma Patients December 8: Dr. Ernie Mak, Palliative Care Physician, Princess Margaret Cancer Centre Symptom Management in Myeloma 2) Drug Access News If you have any questions on whether you might be eligible for any of the treatments below, please consult your doctor. Carfilzomib (brand name Kyprolis), a proteasome inhibitor (the same drug class as Velcade), has very recently been approved for funding in Ontario for patients with 2

3 relapsed myeloma, as a triple therapy with Revlimid and dexamethasone, or a double therapy with dexamethasone. Ixazomib (brand name Ninlaro), an oral proteasome inhibitor, is still available for myeloma patients in various situations, on a compassionate access basis, from the drug manufacturer Takeda. Daratumumab (brand name Darzalex) is currently in the process of pricing negotiations with the provinces, through the pan-canadian Pharmaceutical Alliance, which coordinates pricing negotiation between most of the provinces and the drug companies. 3) Member Interest Survey At our April 7 Support Group meeting, we invited everyone there to provide comments on members interests, and any suggestions, on a very simple two page survey sheet. We received useful feedback from those who contributed thank you. The survey questions we used are attached at the end of this newsletter. Please feel free to return any comments or suggestions from the survey by , or in person at the June 2 Support Group meeting. 4) Social Events for the Support Group We are seriously considering having one or more social outings during the summer and early fall. This might include meeting for a luncheon at one or more modest restaurants, a Toronto harbour cruise similar to what we did last year, and possibly other events. These outings were suggested by a number of people in our April 7 survey. If you have any suggestions, please let any executive member know. 5) Myeloma Canada National Conference Myeloma Canada held its 13 th annual National Conference in Vancouver, on May 12 & 13. This was one of the largest National Conferences to date. It had an excellent agenda over two full days, with 23 guest speakers. Many of the presentations were recorded, and will be placed on the Myeloma Canada website. 6) Get on the Myeloma Canada Mailing List We recommend that anyone affected by myeloma consider joining the Myeloma Canada mailing list. This way, you can keep up to date on any bulletins, notices, newsletters, and other information ed from Myeloma Canada. You can sign-up for the newsletter through the Myeloma Canada website, on the Find Support tab, at: 7) Videos from Previous Presentations We have a selection of DVDs from previous presentations available for lending at our meetings. (Please remember to return signed-out DVD s at the following support group meeting. If you need more time, let Bob McCaw know at the meeting or by at robert.mccaw038@sympatico.ca, if you are not attending the meeting.) Many of our presentations are on the Myeloma Canada website, under Resources/Myeloma Canada Educational Videos/Videos. They are also available on the Myeloma Canada YouTube channel: 3

4 8) Suggestions or Requests If anyone has any topics or items you would like included in future meetings or newsletters, or other suggestions or requests, please contact anyone on the Executive. Major Events Princess Margaret Walk for Myeloma Research, Bloom Chair Sunday, June 17, 2018 Every spring, members of the Toronto Myeloma and District Support Group join thousands of walkers and runners to raise funds for myeloma research and new and better treatments through the Bloom Chair at Princess Margaret Cancer Centre. This is an inspiring and empowering event, full of life and hope, where teams large and small show that they can make a difference. If you have not participated before, consider joining this fun-filled, family event and meet other patients, caregivers and supporters. All participants have to register, but there is no minimum amount that participants have to fundraise. To register or donate, follow the link below: Register or Donate Myeloma Canada Multiple Myeloma Marches Each year in September, communities across the country rally for a 5km walk to increase awareness and raise funds for clinical research and to support advocacy, for accelerated access to new therapies for Canadians living with myeloma. Some members of our support group will participate in the following walks: Hamilton, Sunday, September 16, 2018, Willow Cove Pavilion, Confederation Park, Hamilton Kitchener-Waterloo, Sunday, September 9, 2018, Victoria Park Pavilion, Kitchener Mississauga Sunday, September 23, 2018, Lake Aquitaine Park, Mississauga 4 Register or Donate

5 Our Journey with Multiple Myeloma - Dawne Warner and Al Willy Dawne Warner had her autologous stem cell transplant 14.5 years ago with no relapse or other treatments other than oral steroid maintenance despite oncologist expectations that the transplant might not work or might only give her a year or two in remission. The lesson is that every patient is different, and there is always hope, as there was even back in 2003 when much fewer treatments were available. In 2004, Dawne and Al began attending the Toronto and District Multiple Myeloma Support Group and in early 2008 they replaced Dorothy and Charlie Plourde on the executive helping out with meeting setups. They still attend support group meetings and assist when needed. Dawne and I, her husband and caregiver, began our journey in late March 2003 when Dawne was diagnosed with multiple myeloma (MM) at Mount Sinai Hospital in Toronto. She had been experiencing pain (fractured ribs) and fatigue (anemia) since October 2002 which eventually led to visiting her family doctor for extreme chest pain (a fractured sternum) and nausea in early March Following a bone scan, an ER admission and tests, she received her diagnosis. An outbreak of SARS, a new highly infectious lung disease, resulted in intense hospital admission protocols and presented additional challenges to Dawne s early treatment. The Toronto and District Multiple Myeloma Support Group meetings were also suspended due to SARS. The founder and leader of this first Canadian multiple myeloma support group, Marion State, kindly visited us at our home providing us with support materials, including literature, videos of recent group meeting speakers and much helpful advice. Dawne and I greatly appreciated Marion s visit as well as the opportunity provided by the Canadian Cancer Society to speak on long distance telephone calls with a MM patient who was the leader of her support group in Fredericton, New Brunswick. Dawne was diagnosed with Stage 3a IgG lambda MM M-spike 45 g/l q13 chromosome deletion, having several fractured ribs, a fractured sternum and many holes (thinned areas) in her skeleton. She had one collapsed vertebrae (T9) associated with a plasmacytoma and a pain level of 10/10 requiring IV pain medicine. Dawne was first treated by hematologist Dr. Dominick Amato of Mount Sinai Hospital who was also associated with the MM oncologists at the Princess Margaret Cancer Centre (PMCC). In 2003 treatments for MM were limited to VAD (vincristine, Adriamycin generic name doxorubicin and dexamethasone) or thalidomide followed by an autologous stem cell transplant (SCT) using high dose melphalan chemotherapy, although Velcade and Revlimid were available in trials. Dawne s initial chemotherapy consisted of high dose dexamethasone alone and it worked very well, knocking down Dawne s M-spike from 45 g/l to 3 g/l by July. In addition she was put on pamidromate, an IV administered bone strengthener drug. Dawne was referred to PMCC for an autologous stem cell transplant and Dr. Suzanne Trudel became her oncologist. Dawne s stem cells were harvested in August 2003 and her SCT was done in late September, involving a two week admission to PMCC. In 2003, chromosome q13 deletion was considered a sign of poor outcomes, suggesting that Dawne might not get any response or only get a year or two before a relapse. There were no complications, although it was no walk in the park, and her M-spike was below detection limit of 3 g/l. Dawne had a very tiny Thanksgiving dinner and we all were very thankful she was now in very a good partial 5

6 remission. In December, she had radiation treatments to a plasmacytoma surrounding her T-9 vertebrae with no side effects. Full recovery from the SCT took Dawne almost 6 months though some patients can feel better sooner. In February 2004, Dawne was put on a post-sct maintenance regimen of 50 mg prednisone every other day. She remains on this today and is, 14.5 years later, in a very good partial remission with an M-spike below 3 g/l. She has developed Type II diabetes because of the prednisone. No MM oncologist can say for sure that the prednisone is the reason for Dawne s very long remission, but we would like to think so. She has other challenges such as peripheral neuropathy pain in her feet and legs and pain in her back and legs from a herniated disc in her lumbar spine. However, the MM is under control and we enjoy life despite the health challenges. Dawne and I are very happy to live in Canada where universal health care is a lifesaver when a medical crisis like MM arises. We are also very fortunate to live in Toronto, where we can be seen by top medical professionals of all disciplines, including MM oncologists at PMCC, one of the best MM research hospitals in the world. It is our hope that all MM patients can reach and surpass Dawne s continuing survival of 14.5 years; survivals over 10 years are common with all the new treatments available. I often tell people that during the first year of a MM patient s battle they probably go through more medical procedures than some entire families do in their lifetimes. However, most people survive that first year, and there is hope for many more years of survival, with much support from fellow patients and support groups such as ours and Myeloma Canada. Fundraising If you are interested in making charitable contributions to organizations dedicated to Multiple Myeloma, the following are noteworthy. Myeloma Canada Myeloma Canada is the only Canadian national organization dedicated solely to the benefit of Canadians affected by myeloma, through education and support, research, promoting access to new therapies, and public awareness. Myeloma Canada has charitable status and donations will be deductible for tax purposes. Donations can be made online at Myeloma Canada info@myeloma.ca 1255 TransCanada Hwy, Suite 160 Website: Dorval, QC H9P 2V4 Telephone: Princess Margaret Cancer Foundation Myeloma Research Fund (Bloom Chair) The Princess Margaret Cancer Foundation 610 University Avenue, Toronto, ON M5G 2M9 Telephone: info@thepmcf.ca Please make sure to specify the Myeloma Research Fund in the memo area of the cheque, as the funds will otherwise go into the hospital s general cancer research fund. The Princess Margaret Cancer Foundation, c/o Myeloma Research Fund, has charitable status for tax 6

7 deduction purposes. Donations may be made online through the Princess Margaret Cancer Foundation, at: Select the Myeloma Research Fund. International Myeloma Foundation (IMF): Dedicated to improving the quality of life of myeloma patients while working toward a cure. International Myeloma Foundation Riverside Drive, Suite 206 North Hollywood, CA 91607, USA Tel: CURE Donations may be made online at Unfortunately, the IMF does not have Canada Revenue Agency recognition for tax deduction purposes. SPECIAL THANKS TO MYELOMA CANADA FOR THEIR FINANCIAL SUPPORT OF THE TORONTO AND DISTRICT MULTIPLE MYELOMA SUPPORT GROUP Summary of Presentation - April 7, 2018 Meeting News in Myeloma Treatment and Research What s new in 2018? ASH Update Anca Prica, M.D., MSc, FRCPC Princess Margaret Cancer Centre Note: Below is an abbreviated transcript of the presentation. The full 90 minute video recording of presentation is linked here: I'm pleased to be here to talk to you about things that are important to us, activities in the advancement of science in myeloma and update you on what has been going on in research and options for treatment. So, what are clinical trials and why should you participate? Clinical trials are research studies that involve people. They are the final step in the process to develop new treatments. In cancer, clinical trials are designed to answer questions about new methods of prevention and treatment. The process of a drug s going from an idea to treatment is quite lengthy, but that is designed to prove that the drug is safe and efficacious with added value to the care of a patient. It starts with an idea and some basic research in the lab, where it is tested firstly on things such as mice and cell lines. If it looks promising, it moves on to clinical trials. There are different phases of clinical trials, depending on how developed the drug is. If it passes the clinical trial phase, it moves on to regulatory approval and finally into a standard of patient care. 7

8 At all times at Princess Margaret Hospital, there are drugs in different phases of trial. Phase one trials are the first to test a drug on humans. Out of the approximately one hundred drugs that enter phase one, only about 16 ever make it to approval. Phase one trials are mainly to test the drug for safety. In cancer drugs, phase one patients have usually exhausted all other lines of therapy. If it's shown that the drugs are safe and show signs of possibly working, the drug moves on to a phase two trial, which checks for efficacy and response rate. If it does look like there is some efficacy, it will move to a phase three trial where the new drug is compared to the standard treatment. Some drugs do go to a phase four trial, which is usually a surveillance study looking for long term side effects. There are also different types of trials in terms of who runs them. We tend to look for investigator trials, which are usually developed by doctors or investigators looking for a response to a specific question. They usually involve fewer participating centres and take longer to complete. There are cooperative group trials where several groups will run the same trial across the country. Canada has the Canadian Cancer Trials Group (CCTG). There is also the MCRN, which is an offshoot of Myeloma Canada (Myeloma Canada Research Network). The idea is to try and connect all centres across the country to ensure everyone has access to the trials. There are also pharmaceutical company driven studies, which are really what a lot of trials are these days. The advantage to that is that large groups are used to move the information forward. However, there is not much control on how the trial is designed as it is determined by the pharmaceutical company. So, why are large phase three trials important? Large groups provide a wide range of comparative data for researchers. The more participants, the more diverse the results. There are several positive aspects for patients who enter clinical trials. They may feel they receive a higher quality of care. They have access to novel therapies which may have fewer side effects. There is the possibility the drug may help many others. Usually, the cost of the drug is subsidized. And, participating in a clinical trial makes many feel they are actively involved in their treatment. Of course, there can be negative aspects to participating in a clinical trial as well. There may be unknown or worse side effects than the current treatment. The new treatment may be ineffective. It does mean more visits to the treatment centre and more tests. If the trial is randomized, you may not receive the new drug. And lastly, the new treatment may not be available once the trial has ended. However, these days most patients continue to receive the drug once the trial has ended, as long as it is still effective. How do you get on a trial that is of interest? First, ask your myeloma team. At Princess Margaret, we are kept apprised of trials across the city. Because they are trials, there can be very specific eligibility criteria so be sure to inquire what those may be. Obtain an overview of the study, its length and expected outcome. As always, you should take someone with you when discussing any possible treatment. Take time and review any consent forms thoroughly. 8

9 Some questions to ask: What are the details of the treatment oral, injections, how often, how long is the treatment? Is it randomized? Is it a blind study? What tests are required? In 2016, carfilzomib, elotuzumab, ixazomib and daratumumab were found to be effective in the treatment of multiple myeloma. Carfilzomib will likely move towards funding in Ontario as it has been found to be very effective in combination with Revlimid and bortezomib. At Princess Margaret, we work with the pharmaceutical companies to supply drugs to our patients before they are approved for funding. At Princess Margaret, if a patient is transplant ineligible, for the first line of treatment the current process is to give oral Revlimid and dexamethasone or melphalan and prednisone in combination with Velcade. Melphalan, prednisone, and thalidomide are still an approved regimen although it is not used very often due to the toxicity. For transplant eligible patients, induction therapy is given using CyBorD (cyclophosphamide, bortezomib and dexamethasone). This is followed by stem cell collection, a stem cell transplant (one or two, depending on high risk features) and then maintenance with lenalidomide. If there is a relapse or if the disease is refractory to treatment, there are many pathways patients can go down, depending on their age and their previous treatments. Now I'd like to discuss the front line treatment for transplant eligible patients and whether everybody should have two transplants or whether one is good enough. The concept of tandem transplantation is that patients start with one stem cell transplant. If it goes well, a few months later they have a second one, with the idea that more therapy or treatment might be better than less. Most tandem transplants were done in an era with no novel agents. The patients mostly had chemotherapy with dexamethasone and there was no maintenance. The advantage was about five months. So, overall, we have not felt that it is necessary. We know that for high risk patients and those with cytogenetic changes, tandem transplants may be an option. Last year at the meeting of the American Society of Hematology (ASH), a trial looked at three different randomizations testing that question. The induction therapy was more aggressive than what is used in Canada. It is used more in the U.S. and combines Velcade with Revlimid. When the patients had that induction and were randomized to having a transplant followed by maintenance, or having more chemotherapy and then maintenance, or having a second transplant and having maintenance, there was really no difference between the three strategies in how people did. This year, a study was reported which looked at what is more commonly done in Canada, which begins with an induction of Velcade, cyclophosphamide and dexamethasone (VCD). Patients were then randomized between more chemotherapy and no transplant or having a transplant (which could be one or two). This study showed there were deeper responses achieved after a second transplant. One other update: we know that lenalidomide maintenance after transplant improves progression free survival. There have been a couple of trials to prove this. The most recent one showed almost a 20 month difference between having lenalidomide maintenance and not. 9

10 However, lenalidomide is not as effective in patients who have translocation t(4;14) or deletion 17p. It is important to note that these patients do worse in all current treatments we have, but even in these patients, using lenalidomide is better than not. How about for the transplant ineligible, can we do better? There are some well established front line regimens for transplant ineligible patients. We use Revlimid and dexamethasone continuously until progression as a standard, based on a trial which compared giving it for 18 months versus melphalan, prednisone and thalidomide. There have been a couple of other studies adding thalidomide to VMP (Velcade, melphalan and prednisone) and adding carfilzomib to melphalan and prednisone. Preliminary results show progression free survival (PFS) of about 22 months, but there is really no difference between the two arms. The drug that is much talked about today is daratumumab, which attacks the protein on the myeloma cells and causes cell death. It has been proven to be an effective myeloma drug, even as a single agent. One trial looked at patients on VMP with daratumumab added for nine cycles. The patients remained on daratumumab as a maintenance drug until progression. Patients taking daratumumab remain in remission considerably longer than those without. At about 18 months, approximately 72 per cent of the patients were still in remission versus only about half of the patients who received the standard VMP. One challenge with the treatment is that Velcade is given by subcutaneous injection and daratumumab intravenously. I'll move on now from first line treatment to discuss treatment for relapse and refractory myeloma. Presently, there are three categories of treatment. Firstly, if someone has had at least a couple of years from their first transplant and they are still eligible from an age/fitness perspective, it is possible to do a salvage transplant. There are clinical trials which are always an option, but for the majority of patients, the most common protocol would be a combination of established agents (bortezomib with dexamethasone and lenalidomide, lenalidomide with dexamethasone, or pomalidomide with dexamethasone). There have been some novel agents that have been tested in the relapse setting for less heavily treated patients. One study added carfilzomib to Revlimid and dexamethasone. This showed a very promising 26.3 months of progression free symptoms. A second study added elotuzumab to Revlimid and dexamethasone and showed 19 months of PFS. A third study added ixazomib, the oral version of Velcade, to Revlimid and dexamethasone for 20 months of PFS. And finally, daratumumab was added to Revlimid and dexamethasone. The median PFS in this study has not yet been reached. Three new therapies made a splash at ASH. The first therapy targets BCMA (B cell maturation antigen) on plasma cells. The drug, called GSK287916, has an antibody against the BCMA protein leading to cell death. The overall response rate was 60 per cent in phase one trials. It has been tested in patients who have been previously heavily treated. CAR-T therapy is revolutionizing haematological malignancies by using the body s immune system. The CAR (chimeric antibody receptor) gene is inserted into T cell DNA by a virus. The T cell now recognizes the cancer and is activated to kill the cancer cells. Not every one will be able to endure this treatment. It can be very toxic. 10

11 The preliminary data on this for myeloma is from the BB2121 trial, which uses an anti BCMA Car-T cell therapy. The data is based on the 21 patients who have received it. It is akin to having a stem cell transplant. There is a very specific toxicity called cytokine release syndrome, which is similar to an extreme infection. You do need to have an infusion of a great number of cells to achieve results. The response rate appears to deepen over time. One interesting study was whether antibiotics should be prescribed to myeloma patients. Ten per cent of myeloma patients die within 60 days of diagnosis due to infection. Levofloxacin antibiotic has been proven to reduce infection. It is not common to prescribe antibiotics, but the data shows it might be worth considering. At PMH, there is a big focus on molecular profiling of myeloma cells from the bone marrow and blood. There are a number of studies focussed on different combinations and sequencing of drug therapies. We do have some drugs in early phases of development which are targeting 17p mutations and t(4;14) mutations. We are also looking into anti-bcma antibody therapy. A CAR-T therapy study will be open soon as well as studies for patients with amyloidosis Q. What are the ethics of offering a trial where there might be a placebo given as a control drug? A. These days, it is very rare to have a placebo given as the comparator drug. The only time we still have a placebo is if there is truly a clinical question whether the drug works or not. Otherwise, patients are always given an active comparator. Q. Is there a decision to do one or two transplants depending on how many stem cells are harvested? A. In our practice, we always collect enough stem cells for two transplants. Although we may not do a tandem transplant, we sometimes do a salvage transplant. For most people, we are able to obtain enough stem cells. It is very rare not to be able to achieve that. Q. How long can you store frozen stem cells? A. We have some in our freezer from 10 to 15 years ago. I don't think we have any data that say they go bad. The truth is we may have the ability to re-collect more stem cells after a transplant. Q. When patients enter clinical trials, are they ever categorized by what stage their disease was when diagnosed? A. Yes, in a lot of trials patients are analyzed by the stage of their disease. We already do tandem transplants for high risk patients and we feel those are the patients who derive the most benefits from tandem transplants. Q. How would you know a patient is high risk? A. That is determined through a couple of blood tests and testing of the bone marrow. It's very standard to test the bone marrow to detect genetic changes. Q. I know of someone on Ninlaro, Dexamethasone and Revlimid who has been told his cancer is now dormant. What does that mean? How is that different than in remission? 11

12 A. I would say they are the same terms. Dormant would be a different way of explaining remission. Myeloma is not a curable disease, but it is treatable and remission means we ve gotten rid of it to a certain extent. Q. Am I right to assume that three drug combinations are better than two drug combinations? A. In most lines of therapy, three drugs are better. In most lines of myeloma therapy, we feel that is the case. Q. Is there a likelihood of more side effects with three drugs versus two? A. Yes, if you add an extra drug there will be more side effects. Daratumumab is a very well tolerated drug. The main reaction is infusion site reaction, which usually only occurs with the first few doses. Q. Is it true that complete remission detection is limited because it is too expensive? A. For blood monoclonal protein, there are quite sensitive assays and they can still identify the abnormal protein in a very small amount versus not detecting it at all. Does that mean there are still some myeloma cells in the bone marrow? No. The definition of complete remission is based on the bone marrow. So, we cannot tell based on blood work alone. You have to do a bone marrow test to look for the monoclonal cancer cells. Q. Can you have stem cell transplants if your platelets are greatly decreased? A. Yes, especially if it is related to treatment. Q. Why do blood counts vary so much? A. Our bodies vary and there are different factors that affect platelets and white cells in the blood. They can go up from infection. As well, chemotherapy can change your blood counts and it will vary based on what part of the cycle you are in. Q. Can cytogentics of a person change? A. The type of myeloma you have doesn t change. It always stays the same. However, the cytogentics can change as treatment goes on. The myeloma cells can mutate and become more aggressive in relapse. Q. How about other things, adjunctive therapies, to improve quality of life, such as yoga? A. I think those are very important. It is not standard to integrate them into our patient care but there are studies that look at this question. Q. There was a clinical trial for smouldering myeloma. Is there any data? A. That has just closed so the data is not available as yet. There was a study at ASH this year by a Spanish group for smouldering myeloma, but it has not been finalized. Q. There was a group at McMaster injecting live virus into myeloma patients. I'm wondering if therapies you related that awaken the immune system are an offshoot of that? A. The concept is the same. Vaccines have been researched for a long time. I haven t heard more about the measles patients. 12

13 Q. Are they looking to a Daratumumab sub-q injection? A. There was some discussion at ASH. It seems to be as well tolerated and as efficacious. We do have a trial of that at PMH. Q. Has there been any progress in determining the cause of multiple myeloma? A. The short answer is no, but I'm not sure we are going to have a particular aetiology to blame. Blood cancers are part of an active system. Sometimes your body just goes crazy. Q. Have there been any studies looking at stress and multiple myeloma? A. Not that I am aware of, but those are very difficult studies to do. How do you capture stress in retrospect and how do you homogenize what stress is to different people? Q. Do you have a positive test conclusively for amyloidosis? A. Yes, but that has to be on a tissue that has an amyloid in it. So, based on imaging, looking for organ involvement, if the physician suspects it, they would perform echocardiograms to see organ thickening. Dr. Tiedemann is collecting blood from patients who might have amyloidosis to see if you can detect it through the blood. As well, Dr. Trudel is testing whether myeloma cells can shed some DNA into blood which would allow for testing for mutations. Originally created April 7, 2018 Toronto and District Multiple Myeloma Support Group Survey Any comments or suggestions you might have are most welcome and appreciated. Please feel free to return any comments or suggestions from the survey sheet by to any member of the executive, or in person at the June 2 Support Group meeting. 1) Are there any topics you would like for future meetings? 2) Are there any topics you would like to see in our newsletter? 13

14 3) We are considering possible social outings for 2018, and future years. Would any of the following outings interest you? - Saturday lunch gathering at a modest restaurant - Meeting for a meal at another time - Toronto harbour luncheon cruise, similar to what we did last year - Museum visit and restaurant (such as the Aga Khan Museum) - Blue Jays game - Picnic in a park - Social meeting in someone s home - Any other suggestions? 4) Would you have other suggestions or comments about the support group? Is there anything else we should do, or do differently? 5) Would you like to volunteer to help our support group? - Help in meeting set-up and tidy-up - Welcoming those attending meetings - Kitchen/food help - Secretarial/ administrating help - Executive committee - Social outings - Any other activity? 6) Include your name, with , or phone, if you wish: Thank you, Support Group Executive Committee: Dave McMullen Don Hunter Jan Wleugel Munira Premji Bob McCaw Patrick Taylor 14