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Sample Support Group Newsletter
A sample newsletter produced by the North Texas Support Group
07.08.01
Newsletter for the June Meeting

The North Texas Myeloma Support Group had its June meeting on the 14th at the usual time and place. It was surprisingly well attended considering that it was the Father's Day weekend. Some of our regulars couldn't attend and they were missed. We had quite a variety of snacks (some actually nutritious) to go with the coffee and iced tea. Although I'm somewhat biased, I think that our group hostess Lucy Tischler did a great job with her Flag Day (and early Independence Day) decorations. Not bad for a transplanted Canadian!

This month we had 29 people, including 14 with myeloma. Your meeting facilitator welcomed everyone and did the customary administrativia. We learned that Arthur and Alice Roberts would be going to Cedars-Sinai in Los Angeles next week for a consultation with Dr. Durie. We heard, too, that Bob Haskins had rafted down the Colorado River through the Grand Canyon with friends - and survived to fly back to Spain where he's presently working. Senor Bob's wife Laura had the good sense to stay on dry ground. Just can't keep that big guy down!

Albert Michaels and Danny Barth were with us for the first time in a while. Since we saw them last, Danny has been through surgery to remove a five inch tumor from his colon, and Albert has been through very difficult times with his paralysis. He says that the latest speculation is that he has “radiation onset myelopathy” which, everyone hopes, will leave as suddenly as it arrived. In the meantime, Albert has little feeling or control in his legs and is restricted to a wheelchair. They are pretty sure that it is not nerve damage, but involves the spinal cord, perhaps damaged from radiation to a tumor at his T-9 vertebra. It was so good to see them both after a long, though understandable absence. Lucy draped a “winner” medal around Albert's neck and presented him with a Dalmation hand-puppet (someone to talk with when the walls close in). Sometimes I get the impression that Albert is Lucy's favorite (but don't tell her that I noticed).

Wilson and Carole Johnson were back after missing last month. Willie has started Aredia (60 mg) and seemed to tolerate it fairly well. After more than a year of chemotherapy, Willie had a bone marrow biopsy done which showed “minimal residual disease.” Willie's oncologist wishes to continue the chemotherapy, however, in hopes of driving the IgG number even lower. That biopsy result was certainly good news for the Johnsons.

Ed Stone, who consulted with Dr. Durie as well, has started his new protocol of pulsed Dexamethasone and Aredia. Ed has had a difficult time getting his oncologist and Dr. Durie onto the same page in his treatment songbook. It sounds like things have settled down for the moment. Edith and Sandra Corrigan (Ed's daughter and internet helpmate) were also at the meeting.

We had a new couple - Merry and Roger Shanks from Plano. I could tell right off that Roger was the one with myeloma as he was sporting that special hairstyle we associate with chemo - bald. Roger was diagnosed as Stage 3 in November of 1996 with what sounds like the light chain variety of myeloma. He had 3 doses of chemotherapy followed by a stem cell harvest and transplant. He took Neupogen to stimulate stem cells. He's had both Groshong and Hickman catheters. He takes Aredia (which helps with pain) as well as Interferon. Roger has a herniated disk in his lower back. His myeloma caused a broken rib and lesions in his spine. Roger and Merry are delightful people. In spite of all he's been through, Roger has a twinkle in his eye and seems to enjoy life.

Rob Peters came all the way from Tulsa, Oklahoma. His wife, Jennifer, who has the myeloma, was unable to make it this month. We would so like to meet you, Jennifer, so please come to our next meeting. Rob can tell you that we are harmless and loving. Jennifer was diagnosed in December of 1996, has had Cytoxan and Prednisone, and has bone pain all over. We urged Rob to help her find the proper people who can figure out exactly what is causing the pain and then find the people who can relieve that pain. Thanks for coming over 200 miles to share with us, Rob.

Joe Elliott attended for the first time and his daughter Jane was with him. Joe's wife Kay was off to New York this weekend. Joe originally came from the same neck of the woods I came from (thought I detected a familiar accent). Joe was diagnosed in March of 1994 with Stage 3 myeloma (light chain). He's had chemotherapy (VAD), but currently only takes Aredia, Interferon, and gamma globulin. Joe had severe involvement all over his body and has lost 5 inches in height from collapsed vertebrae. He's had a laminectomy in his lower back. We will be interested in finding out more about Joe's myeloma journey and hope that he brings his wife with him next month. Jane is hoping for a career in the medical profession and I've challenged her to find us a cure for myeloma - go Jane!

Denise Conners came to our meeting with her friend Evelyn. John Conners, Denise's dad, is 80 years old and has been exhibiting some signs characterized as dementia. His diagnosis was confirmed by bone marrow biopsy and he tests positive for Bence-Jones protein in his urine. He has had one round of melphalan and Prednisone chemotherapy and is on Aredia. He feels good and has a positive attitude which precludes being ill, much less having a cancer. Denise was looking for some information about myeloma from others who have been there. She has a hard time dealing with the medical aspects, on the one hand, and her dad's perception that he's just fine, on the other. It is unknown, at this time, whether or not the “dementia” observed has anything to do with the myeloma. We're glad you came, Denise, and we encourage you to come back.

Having voted last meeting on a contribution toward expenses of $5 per family at the meetings, we belatedly passed the hat and collected $60. Your faithful facilitator is keeping track of contributions and expenditures for the group.

Willie's friend Mark Cox has created a web page for our support group. Please visit the site and let Willie know if Mark needs to make any changes or additions to it. You can visit our site at: http://www.flash.net/~larman/support.htm

Jack Leven has talked with the people at the Leukemia Society. There is up to $700 available toward certain expenses for myeloma patients per year. If you are interested in pursuing that, contact Susan Akers (Patient Services Manager) at 972-239-0959. Our thanks to Jack for bringing that to us.

Peter Tischler talked about the reason for this recent trip to see Dr. Durie at Cedars-Sinai in Los Angeles and the results of the consultation. Peter and Lucy spent three days with the doctor and having tests done. The NTx (bone resorption test) and the PCLI (Plasma Cell Labeling Index test) were both negative, and the two nuclear medicine scans showed a low level of myeloma activity. Because of a new lesion in his left femur, a lesion/plasmacytoma in his skull, and Bence-Jones protein being observed for the first time in his urine, it has been recommended that Peter take 3-6 months of chemotherapy which would start later this month (if his local oncologist agrees). Peter also started Aredia and had some flu-like side effects from that infusion.

I am sorry that we weren't able to give everyone a chance to share this week. We may, at some point, have to discuss whether or not to expand our meetings. We did not get a chance to hear from Robert and June Dean and daughter Paula, Lon and Mary-Jane Parkland, Bob Jones, Mike and Edith Bartlett, Peggy Bonds, Silvia Oliver, and John Fletcher. I can only hope that we didn't miss anything about myeloma that would have benefited the group. I did notice that we had quite a bit of sharing and networking after the meeting was formally closed.

Remember that our next meeting will be July 12th, which is the second Saturday of the month. The meeting after that will be on August 2nd.

We always miss those of you who are unable to attend, and we look forward to seeing you next month. We are thinking of putting together a luncheon to commemorate our group anniversary. How does the October meeting sound to everyone? It would be a “bring a covered dish and all your loved ones” affair.

As always, if I have misquoted or left something out, I apologize. No offense is ever intended. You are all very special to me and I welcome contact with any and all of you, whether by phone, in person, or via the internet. Until July 12th, I remain your friend and fellow MMer,

Peter Tischler


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