Fall 2007 - International Waldenstrom's Macroglobulinemia ...

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HELP LEAVE A LASTING LEGACY TO IWMF by Dave Lively and Dick Weiland At the mid-August IWMF board meeting in Chicago there was agreement among those board members present to consider a recognition society for all planned giving donors. Official action for this heritage society will be taken at our next board meeting after a special task force puts together some facts and figures, policies and procedures. One set of facts we need is a roster of all folks who have left a lasting legacy to IWMF already and of those who have arranged, or will have done so by April 1, 2008, to include IWMF in some aspect of their estate plan. These “founding members” would be recognized in a special way, probably at the 2008 Ed Forum. Each year thereafter new members would be introduced and recognized at such a special event. So, if you know of someone, or if you intend to include IWMF in some aspect of your own “planned” or “deferred” giving, such as a bequest, a gift annuity, a trust arrangement, an insurance policy, or a similar planned gift, please feel free to contact Dave Lively at livelyfish@aol.com or call him at (608) 783-4552. Or complete the Inquiry Form below and return it in the enclosed envelope with your membership dues, and Dave will get in touch. PAGE 10 The following is a brief set of definitions of some of the options for easy admission to the IWMF lasting legacy program. A Bequest through your Will or a Codicil to your Will provides for a percentage of your estate, a fixed amount of money, or a specific item going to IWMF. A Charitable Remainder Trust provides income to the donor’s beneficiaries and the remainder to IWMF. Payments are determined annually and depend on the value of the trust assets as recalculated yearly. A Gift Annuity provides the donor with a contractual promise of fixed income each year. The payout rate depends upon the age of each beneficiary at the time the gift is made and when the payments begin. Payments can be deferred for several years. A Life Estate provides IWMF with a gift of residence or farm while allowing the donor the right to continue to live there for the remainder of his or her life. A Charitable Lead Trust provides IWMF with income for a term of years and leaves the remainder to the heirs of the benefactor. Life Insurance designations allow a charity to receive benefits upon the death of the insured. Be sure to see your attorney or tax adviser as you put your plans on paper. PLANNED GIFT/HERITAGE SOCIETY INQUIRY FORM I would like to support IWMF in one of the following ways. Please contact me about: ❏ A Bequest in my Will or making a Codicil ❏ A Charitable Remainder Trust ❏ A Gift Annuity ❏ A Life Estate or Real Estate Gift ❏ A Charitable Lead Trust ❏ Life Insurance ❏ Other_ ____________________________________ ___________________________________________________________________________________________________________ Signature Name (please print) ___________________________________________________________________________________________________________ Address/City/State/Zip ___________________________________________________________________________________________________________ Telephone Number E-mail Address
FROM IWMF-TALK by Mitch Orfuss Over the summer months the IWMF-Talk participants aired their views on many topics concerning treatment options and coping with the side effects of WM. Some of the livelier discussions are revisited below. Is there a “magic” PN drug?–Dianne Perry writes that Mayo Clinic’s web site recommends B-12 for PN. Guy Sherwood talked about four candidates for treating PN: L-glutamine (if taken before chemo); B-6 (with caution not to exceed 50 mg/day); lysine; and what Guy called the clear winner for him–morphine after Velcade a few years ago. Ann Tygart wrote about B-12: not just for PN but perhaps for memory problems as well, especially when taken in combo with other B vitamins. However, Liane Cochran- Stafira raised the possibility that B-6 actually makes PN worse. And Patti takes the supplements acetyl l-carnitine and alpha lipoic acid in search of better skin, only to learn that they are both good for PN. Shingles–Since WM patients are susceptible to Herpes zoster, commonly known as shingles, there is frequent discussion on IWMF Talk about this extremely unpleasant condition. Rob Selden wrote that though shingles is contagious only through direct contact with open lesions, such contact does not result in shingles—it causes chicken pox and does so only if the receiver never had chicken pox previously. Minnie Hattori sent several short notes to shingles newcomers describing the symptoms of this numbing, tingling, burning, itching, eruptive, blistering and in all ways relentless illness. Fay Langer emphasized that while shingles did not cause her pain, it did cause constant itching severe enough to keep her up at night. June Canter had another take on how sly shingles can be. When June came down with shingles during Rituxan treatment there was no rash at all—so no one immediately recognized her symptoms as a case of shingles. The result was that it became too late to make use of an antiviral, leaving June to three months of pain meds to help her get to sleep. Laure Van Kerkhove told a story of having shingles along with spinal encephalitis at age nine, causing pains in her side that she remembers nightmarishly almost four decades later. Sybil Whitman recounted having suffered from shingles four times, occurring both before and after her autologous SCT last year. After five rounds of chemo Gerri McDonald attempted to wean herself down to a half dose of the antiviral Famvir and, sure enough, it was weak enough to allow for a shingles outbreak. Once the outbreak had passed Gerri went back to the dose of Famvir which had originally been prescribed for prevention of shingles. There was also discussion on how long to keep taking a preventive antiviral after treatment, and our participants reported a range of directives from their physicians. Velcade, Leukeran, Campath–Ellen writes that though she experienced unpleasant side-effects from Velcade with cortisone–head and neck ache, sleeplessness, shortness of breath, and edema in the legs–her blood work did improve, with hemoglobin and WBC back to normal and a 50%- reduced monoclonal spike. Ron (The Hermit) Romeis, for a variety of reasons, elected a 13-month course of daily Leukeran (chlorambucil) in pill form starting in 2004, with very satisfactory results—but Ron mused on how difficult it is to know when sufficient treatment crosses over to too much. Frank Citrone, Jr., enjoyed a partial remission from Campath (with hydrocortisone) prior to a SCT. Guy Sherwood wrote that he had a result similar to Frank’s except that he had Velcade after Campath at Dana-Farber before his successful auto transplant. Mike writes that he was diagnosed at 32 and had Campath as a first treatment with mixed results: a seven-month partial remission but a knocked-back immune system. About Rituxan–After Peter DeNardis referenced an article about fast-infusion of Rituxan, many replies and comments were received on IWMF Talk. Corinne wrote that she is given her Rituxan infusions very slowly. During treatment she tends to get an itchy head and a puffy, red face, and she has trouble breathing with a heavy feeling in her chest—plus “restless leg” from the Benadryl. She actually starts taking prednisone, Benadryl and Zantac the day before treatment. Her infusion crew adds Atavan to the IV cocktail along with the Benadryl, and Corinne sleeps for the entire 12 hours. Maria writes that she didn’t have side effects after the treatment—just during. Her blood pressure would drop to a dangerous level. She could not sit still–it felt like “being plugged in to a wall socket.” So Maria went to the hospital, the staff infused her over a 24 hour period, and the problems evaporated. From IWMF-Talk, cont on page 14 PAGE 11 How to join the IWMF-TALK Here are two ways to join: 1. Send a blank e-mail to: iwmf-talk-subscribe-request@lists.psu.edu Make sure to enter the word subscribe as your subject, and do not sign or put anything in the message area (make sure you do not have any signature information in there). Also, do not put a “period” after “edu” or it will reject. Once approved you can post by sending e-mail to iwmf-talk@lists.psu.edu 2. Contact Peter DeNardis at pdenardis@comcast.net and provide your full name
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: More Funds, More Research, cont fro
Page 13 and 14: NEW ENGLAND (cont.) Western MA, VT
Page 15 and 16: Support Group News, cont from page
Page 17 and 18: SOCIAL SECURITY DISABILITY Howard P
Page 19 and 20: In memory of Harold Zfaney (cont.):

Fall 2007 - International Waldenstrom's Macroglobulinemia ...

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