From BMT Newsletter September 1994 Issue #25 - BMT's for Acute Myelogenous Leukemia Reprinted by NYSERNet with permission from BMT Newsletter
(Readers: Please note that we have deleted the names, addresses and phone numbers of the people who have contributed their experiences and ideas to "Your Turn". However, we would be happy to direct you inquiry or communication to them. Please contact us through our email: help@bmtnews.org, by phone: 847.433.3313 / 1.888.597.7674, by fax 847.433.4599, or by mail: BMT Newsletter 2900 Skokie Valley Road Suite B, Highland Park, Illinois 60035. Thank you.)
"In response to EP of Illinois who wrote in the July 1994 issue of BMT newsletter about her adult daughter who was in denial about her mother's CML: I had a BMT for CML (leukemia) and celebrated my second anniversary this February.
I can remember my experience with my family like it was yesterday. My brother did not want to accept the fact that I had CML. He wouldn't call me, come by or discuss it at all. He never asked me any questions before or after the BMT. He was in denial as your daughter is. This is the way some people handle stress. My brother just wasn't able to handle the fact that I might die.
Eventually your daughter may come around or she may not. To this day, my brother never asks how I am doing. Sure, it hurts, but I have to accept him the way he is. He offers me no support but I have other family members who do. Your concentration now must be on yourself and the fight. Your daughter's situation will work itself out.
You might ask your doctor about support groups for family members in your area. A hospital psychologist talked to me on a daily basis. If you have the same resources, they may be able to help you understand why your daughter feels this way, or may be able to refer your daughter to someone who can help. I am also a BMT-LINK volunteer and counselor. BMT-LINK volunteers are available to listen to your concerns and help you get through your BMT. Phone 800-LINK-BMT." S.T.
"My 31-year-old husband nosed with CML (leukemia) ber 1990. In July 1991, he had a BMT with his oldest daughter as the donor. He went back to work full time in March 1992.
ln August 1994, three weeks before he was to enter a body building contest, the doctor said he may have graft-versus-host disease (GVHD) of the liver. He's depressed and wonders why now, three years after transplant? But if CML and a BMT didn't beat him, nothing will - not even GVHD! It's hard to see his ups and downs, but he's a true fighter and a real winner. I sure love him for the strength he even gives me when I feel scared. Please publish this letter to give encouragement to other wives. and to let them know that they too can be strong and can get strength from the survivor. A marriage is together. We made it through the BMT so we can make it through anything." M.R.
"I am a three-year survivor of a BMT for ALL (leukemia). My cancer developed as a result of chemotherapy I had for ovarian cancer in 1988. Has anyone else had a similar experience? I am a nurse and work full-time at the VA hospital in Topeka Kansas. I started a support group for cancer patients and survivors. Two months ago I felt confident enough about my health to buy a small house. I am a single parent so it has not been easy for my son and I, but we are stable now and he is attending college." G.H.
"I had a BMT in March 1992 for non-Hodgkin's Iymphoma at the age of 33. I'm interested in any side effects resulting from total body irradiation and high dose chemotherapy. I am having a lot of minor problems and wonder if others have similar problems. I also wonder what kind of aftercare they are receiving. It seems like anything that comes up with my health is attributed to the radiation and chemo." J.W.
"I am donating marrow for my brother in a couple of weeks. There seems to be no information for donors about emotions. I talked to another bone marrow donor and she felt the same way. I feel like the weight of the world has been placed on my shoulders and no one can really understand." C.S.
Editor's Note: Anyone who was a hone marrow donor and would be willing to be interviewed for an upcoming issue about donors should contact BMT Newsletter, Spruce Ave., Highland Park IL 60035.
"I underwent a BMT for CML using marrow from my brother in July 1990. I was doing fine until April of this year when my leukemia returned. I'm now taking Intron shots. Has anyone else had a similar experience?" E.W.
"I am a 26-year-old nurse. It's been 2 years since my autologous BMT for AML(leukemia) and I feel good. I am newly married and back to work part time. I have three problems which I wonder if others share: (I) lower back pain in the harvest area (especially in the winter months): (2) very slow hair growth - it's thin and scarce in areas; (3) infertility - I haven't had a period and my hormone levels are those of a post-menopausal woman. I know there are women out there who have had children after BMT. I would like to hear from others who have had similar experiences." S.D.
"On Tuesday, my wife Gail went to be with the Lord. It's been 5 1/2 years since her BMT for breast cancer. She cared for a lot of kids in that time that were abused, neglected, molested or addicted (mostly infants and toddlers). The next time someone asks whether BMTs are financially good for the country, use Gail as an example. Her mothering saved the State of Indiana tens of thousands of dollars of institutional care costs, and 11 foster kids have a far better life because of Gail. Please accept our donation in memory of Gail, our wife and mommy." B.E.
"I have assembled an 80 page handbook with information about multiple myeloma and current treatments. Copies are available for $10 each plus $2.00 shipping and handling. Write William J. Pollard, 2139 Ascot Road, Ann Arbor, Michigan 48103."
In August 1993 I had BMT for AML (leukemia). I was just starting to feel good when I got shingles in my left eye and along the bridge of my nose up to my forehead. I have extreme itching when I put on my glasses. Occupational therapy made a splint to keep the pressure of the glasses off my face. Now I can wear my glasses without itching. It is a temporary solution until the problem heals. I would love to hear from anyone who has had a similar problem, or has had dental problems following radiation therapy and mild GVHD. M.W.
"I just had a stem cell transplant last month and am recovering at my mother's house. I will start looking for work soon and have many questions about the process and employment issues. Although I may not be ready for full time work for many months, I have to apply now to committees that take forever to make a decision. Are there any librarians in your readership who can understand what I am going through?" N.T.
"I have been under medical care since 1986 for a bone marrow related condition called Essential Thrombocythemia (ET). It is characterized by high platelet counts and myelofibrosis of the bone marrow. The only cure for the disease is a bone marrow transplant. My older brother is a matching donor, but I've been unable to have a BMT because my insurance company says it is an experimental procedure and refuses to pay for it. There are only five or six thousand ET patients in the US and I doubt much research is being done on treatment protocols. I would like to hear from others who have Essential Thrombocythemia and myelofibrosis, or who have information about this disease." R.T..
"I have a four-year-old son who was diagnosed with aplastic anemia when he was 10 months old. He needs a BMT and I'm desperate to talk to someone who has a child with aplastic anemia and is having or has had a similar experience." S.H..
I would like to hear from anyone diagnosed with myelodysplastic syndrome. I want to know whether they chose a BMT or waited to see how the disease progressed. B.D..
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