Fall 2007 - International Waldenstrom's Macroglobulinemia ...

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PAGE 14 From IWMF-Talk, cont from page 11 Betty McPhee writes regarding the phenomenon of Rituxan flare to remind us that not everyone experiences it. Guy Sherwood says that many oncologists recommend plasmapheresis before Rituxan therapy when IgM reaches a certain level, though this level varies by doctor. Matt raised the issue of one downside to a great treatment result: after a course of fludarabine and Rituxan no less than eight years ago that brought his hemoglobin and IgM all the way back to normal levels, Matt’s IgG worsened with every blood work report. Could the combo treatment have caused that negative despite the positive results with other important blood readings? Should Matt seek the fludarabine/Rituxan combo treatment again if it becomes time to treat? Jeff Atlin writes about Velcade and Rituxan in combo, referencing a Phase-II trial in which the amount of Velcade was halved. The result: excellent response—and fortunately without the PN previously associated with higher dose Velcade. Another thread of Talk that sparked interest concerned a rapid-infusion test of Rituxan. The standard infusion rate for Rituxan, established empirically taking potential adverse reactions into account, is slow, ranging between 4-7 hours. But, as recently reported, 1200 patients in British Columbia tolerated Rituxan delivered by a severely compressed infusion schedule in which 20% of the total drug was infused in the first 30 minutes and the remaining 80% in the next 60 minutes. What a potential improvement in resource utilization! Betty McPhee said that she had recently had a rapid infusion of Rituxan without problem. Finally, there continues to be considerable passionate discussion on IWMF Talk about the many unknowns concerning maintenance Rituxan. Bob Bent, Ron Draftz, Dave Johnston, Dr. Tom Hoffmann, and this writer, among many others, weighed in with a wide array of thoughts and speculations. Though the evidence does not now exist to show that maintenance-R is or is not a treatment approach superior to Rituxan-As-Needed, this topic continues to excite the imaginations of the readers of Talk as much as, if not more than, any other topic that pops up. There have been many reports from patients who say they were, or are, on maintenance-R schedules, with spirited responses from others. Perhaps Guy Sherwood has the last word-–for now, anyway!–with a reminder from the scientists working so hard for us. A panel of experts at the recent 4th <strong>International</strong> Workshop on WM on Kos Island, Greece, addressed the issue of maintenance Rituxan, and there was a virtually unanimous decision that the recommendation in favor of maintenance (every 3 months for 2 years or similar protocol) could not be made at this time because of lack of data. By the time the next <strong>International</strong> Workshop on WM is held in two years, Guy expects that sufficient data will be available to make a confident, fact-based recommendation, be it for or against maintenance Rituxan. In the meantime, we can expect this topic to continue to surface again and again. SUPPORT GROUP NEWS edited by Penni Wisner New support groups continue to blossom and expand. Here in California, in the south, a new group formed, and the Orange County group is very active. One of the most exciting developments for groups has been the visits of Drs. Irene Ghobrial and Steven Treon, both of Dana-Farber Cancer Institute. Their cutting edge research and clinical expertise is very much on display in their presentations at these small (compared to the annual IWMF Educational Forum), meetings. And summer appears to be a social season for support groups as many host annual barbecues and picnics. A recent post to IWMF-Talk concerned research into what patients wanted from support groups. Run by and for WM patients and their families and friends, they reflect our unique concerns. Read on to discover what the groups in your area are discussing. CALIFORNIA Los Angeles Katie Coen organized the Los Angeles support group which met for the first time in July. They had a good turnout and plan to continue to meet regularly. Occasionally, the group will join with its neighbor in Orange County for programs such as the October 6 presentation of Dr. Irene Ghobrial. Orange County Marty Glassman, co-leader of the Southern CA support group, organized the October 6 meeting featuring Dr. Irene Ghobrial at the Hoag Cancer Center in Newport Beach. Sacramento and Bay Area Does it count as a meeting when two members meet? Talk on the telephone? Perhaps the most important—and most enjoyable—role of support group facilitators is that of “first responder.” Newly diagnosed patients find the name of the local group leader on the web and call or email. Hopefully, after that initial call, patients can more easily navigate the often confusing path before them. At first some patients are reluctant to attend a meeting: they are afraid a room full of WMers will be a room full of sick people. Or they just do not want to think about their disease. But then, gathering their courage, they show up. And discover homemade cookies and a caring group of active, intelligent, curious, dedicated peers. And from these, they can learn what lies ahead after diagnosis, the subject of the group’s fall meeting October 14. COLORADO & WYOMING The Colorado-Wyoming support group (also known as the Rocky Mountain support group) enjoyed a wonderful presentation in September by Dr. Irene Ghobrial. She spoke to a joint meeting of the IWMF group and the local chapter of the Leukemia & Lymphoma Society. The winter meeting will feature Dr. Steven Treon on February 9. Support Group News, cont on page 15
Support Group News, cont from page 14 FLORIDA South Florida Dr. Daren Grosman fielded questions in an “Ask the Doctor” format for the summer gathering of the South Florida IWMF support group. Each patient was able to discuss his or her status and treatment. Dr. Grosman discussed the various options available to patients including when to start with Rituxan, Rituxan maintenance, use of Velcade, identifying the monoclonal spike, peripheral neuropathy, plasmapheresis, and treatment side effects. Handouts of the new IWMF publications were also provided. The next meeting is being planned for early December and the hope is to have another guest speaker. GEORGIA The Georgia and South Carolina support groups will meet on Saturday, October 20, to hear the latest from Dr. Steven Treon. Anyone who would like to attend, please contact Mal Roseman by email. IDAHO The Eastern Idaho support group is quite small with just four patients and four caregivers. We welcome all WM patients in the Snake River Valley as well as patients in Western Wyoming and Southern Montana. Despite thin population density and great distance, in June the group held its third annual barbecue at a member’s home. Proving that “the third time’s a charm,” it did not rain. We traded WM-educational DVD’s from our group library. A new addition this year is the “Weeds in the Garden” DVD by the Mayo Clinic’s Dr. Morie Gertz. In August the group met informally for lunch at a local restaurant. Since three out of the four patients are in treatment, the group feels it is important to meet, or at least communicate by telephone/email, as often as possible. The next meeting will be during the holiday season. We continue to reach out via IWMF-Talk and the Torch as well as through the local newspaper and with notices placed at cancer centers and oncology offices in our area. MINNESOTA & WESTERN WISCONSIN Plenty of laughter, feasting, playing games, and getting to know one another better were the featured menu items for the Minnesota/Western Wisconsin support group’s first annual summer picnic. Sixteen members frolicked through the lovely afternoon. A nutritionist spoke at the group’s September meeting. SUPPORT GROUP LEADERS TALK LIST This list is only for support group leaders to use in communicating with each other about support group issues. It is used by the leaders to share their experiences and ideas for facilitating our IWMF support groups. Please email Support Group Coordinator, Karen Pindzola at kpindzola@yahoo.com if you would like to participate. NEW YORK Rochester, Western and Central NY In July the group enjoyed a good turnout and lots of great conversation and food at the annual summer picnic. Pam and Frank Fox-Ferro were perfect hosts. Usually meetings are held at the Albany Medical Center where the free parking is greatly appreciated. At the September meeting the group was particularly excited about the upcoming October 13th Regional Lymphoma Research Foundation (LRF) Ed Forum in Brooklyn, at which Drs. Ghobrial, Coleman, and Nichols will give presentations during the WM sessions. The support group meets next on November 17. OREGON/SOUTHWEST WASHINGTON The Oregon and Southwest Washington WM support group meets quarterly. At this summer’s meeting two members and their spouses who had attended the IWMF patient education forum in Atlanta shared their impressions. Following their presentation, the group broke into two small groups (patients and caregivers) for sharing and Q&A. The patient group was moderated by IWMF support group leader Joan Berglund, RN, MSN. The caregiver group, including spouses and friends, was moderated by Sue Sumpter, RN, MS, Patient Services Manager, The Leukemia & Lymphoma Society, Oregon and S.W. Washington Chapter. The feedback from this meeting, our fourth, indicated that it was one of the best so far. Attendees felt they learned from the presenters and also had an opportunity to get better acquainted in the small groups. They were able to ask questions and learn from each other and to get ideas by group brainstorming. The group plans to meet the 4th Saturday of every third month (January, April, July and October). Our next meeting will be October 27. This is a change from the previously published date. The January meeting will be postponed until February 2. PENNSYLVANIA Philadelphia Sixteen Philadelphia-area folks and Heidi, the Pindzolas’ white dog, met in August at the Bryn Mawr Hospital for a wonderful session of sharing and discussion. We covered people’s experiences with many of the current treatments, various symptoms and how they were handled, and a couple of more serious problems that were perhaps in need of a second opinion. In addition, the group discussed the whys of support group attendance and came up with quite a little list including: 1. Feels good to see old friends and keep up with WM acquaintances. 2. Hearing firsthand experiences of symptoms and treatments is very educational. The group decided it is particularly encouraging to hear about people who are doing well. 3. Gathering feedback for managing new symptoms. Support Group News, cont on page 16 PAGE 15
Page 1 and 2: iwmf torch Fall 2007 INTERNATIONAL
Page 3 and 4: President's Corner, cont from page
Page 5 and 6: Medical News, cont from page 4 in i
Page 7 and 8: Research Clinical Highlights, cont
Page 9 and 10: More Funds, More Research, cont fro
Page 11 and 12: FROM IWMF-TALK by Mitch Orfuss Over
Page 13: NEW ENGLAND (cont.) Western MA, VT
Page 17 and 18: SOCIAL SECURITY DISABILITY Howard P
Page 19 and 20: In memory of Harold Zfaney (cont.):

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