From: BMT Newsletter, November 1994 Issue # 26 - BMTs for Acute Lymphocytic 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.)
"Could you please tell me in your own. words about the true nature of the pain involved in bone marrow extractions? My neighbor and I have breast cancer, and we're interested in learning about the procedure. We've found that doctors always understate the amount of pain involved in treatments, and we'd like to hear the truth from another patient." J.C.
Editor's Reply: You enclosed with your letter a news article describing one child's painful experience with a bone marrow aspirate. Although a bone marrow aspirate is similar to a bone marrow harvest - the procedure used to collect bone marrow for a transplant - there are some significant differences.
During a bone marrow aspirate, a small sample of bone marrow is withdrawn from the patient, usually by inserting a needle in the rear hip bone where large quantities of marrow are concentrated. Typically, the patient is given a local anesthetic prior to the aspirate that numbs the skin and tissues around the bone, but does not numb the bone. Depending on the skill of the person performing the bone marrow aspirate and the patient's tolerance for pain, the experience may be moderately uncomfortable or very painful.
During a bone marrow harvest, one to two quarts of blood and marrow are extracted, requiring multiple punctures of the bone. Patients are usually put under general anesthesia for a bone marrow harvest and thus, do not feel pain during the procedure. Afterwards, there can be pain in the harvest area for several days or weeks, similar to the pain you experience when you fall on the ice and bruise your hip. The pain is usually controllable with Tylenol.
Many patients find bone marrow aspirates to be much more painful than physicians believe them to be. If you have a low tolerance for pain or are anxious about the procedure, don't hesitate to request additional pain medication or sedatives prior to the procedure to ease the discomfort.
"Six years ago I was diagnosed with CML and am waiting for a donor. I'm married with four children ages 7 to 14.
I'm looking for a transplant center that uses a holistic approach to treat the patient AND family, as well as provide top medical care. I'd like to hear about other patients' experiences with their transplant centers. Please write or call collect." E.H.
"I had a peripheral stem cell transplant for breast cancer in April 1994, followed by radiation in June/July 1994. While undergoing the radiation, l started experiencing a numbness and tingling sensation in my fingertips. My doctors say it is a side effect of the treatment, but it's getting more severe as the days go by. Has anyone else experienced this problem?" P.R.
"In August 1993, I underwent a successful autologous BMT for AML (leukemia) at age 64. I was in my third remission at the time. My doctor was against it, but my sons and I refused to give up. As far as I know, I was the first 64 year old person to undergo an autologous BMT for AML. At my first year check up last summer, the transplant center said I should come see them again in four years. In January, 1995, I plan to write a book about my experience." B.O.
"I'd like to hear from someone diagnosed with myelodyplastic syndrome. I'm interested in whether they decided to have a BMT or waited to see how the disease progressed." B.D.
"I have a 4-year-old son who has had serious medical problems since birth. They diagnosed him at 10 months of age with aplastic anemia. We have been through a lot and now they say he needs a BMT.
I'm desperate to talk to someone who has a child with aplastic anemia and is going through the same experience. Please contact me. Call collect if you need to." S.H.
"I am 27 years old and was diagnosed with AML in July 1992. I found out I was going to have a baby in July 1993 and three days later I found out I had relapsed. I lost the baby and in September I had a BMT. In January 1994, I separated from my husband after finding out he was having an affair. I've learned from talking to others that separating from your spouse during an illness is common. I would love to hear from someone in a similar situation." D.W.
"I would like to hear from people who have undergone a BMT for inflammatory breast cancer." C.O.
"I am a 23-year-old woman diagnosed with CML in March 1994. I will have a BMT in October and am interested in hearing from others in my situation. I have talked to older people faced with cancer and a BMT, but I am very interested in talking to younger, single people that may be facing some of the same problems I face such as infertility or relationship problems. Please write." M.J.
"The September 1994 newsletter on AML was very informative. However, it left out an important piece of information. Although BMT is the best and perhaps only hope for AML patients, there is a risk patients should know about - cytomegalovirus (CMV). If the virus activates in the lungs and causes pneumonia, it is almost always fatal." K.J.
Editor's Note: You are correct that CMV pheumonia is a major risk of a BMT Unlike bacterial infections, it cannot be treated with antibiotics and does not respond well to anti-viral agents. Three to 4 percent of patients undergoing an autologous BMT develop CMV pneumonia. Depending on the age of the patient and type of donor used, 10 to 20 percent of patients undergoing an allogeneic BMT develop CMV pneumonia. For more details on CMV see pages 87-88 in "Bone Marrow Transplants: A Book of Basics for Patients," available from BMT Newsletter.
"I had a BMT for breast cancer in Au- gust 1994 after a mastectomy and four months of chemo. I am now about to start 6-8 weeks of radiation. I am interested in hearing from any women who had radiation after a BMT about what side effects I might expect. I feel fine now except I constantly feel like I am rocking or swaying when I walk or move. Thank you." C.W.
In June 1994, I had an autologous BMT for non-Hodgkins lymphoma. I am a 20-year-old college student and looking for someone close to my age who had a similar experience. I'm especially interested in hearing from someone who has been well for a few years. I'm having a frustrating time getting back my energy." H.H.
The electronic version of this document was created by NYSERNet, Inc. through a grant funded by the New York State Science and Technology Foundation as part of the Breast Cancer Information Clearinghouse.