A rapid response is necessary when faced with a recurrence of childhood leukemia. Treatment plans for a first relapse may be specified in your childs protocol, or your physician may suggest a different approach. Suggestions for treatment may include radiation to the head and spine, radiation to the testes, more intensive chemotherapy, a clinical trial, bone marrow transplantation, or peripheral blood stem cell transplant.
Physicians make recommendations based on knowledge, experience, and consultations with other experts in the field. Do not hesitate to ask your physician why she has suggested a certain approach to your childs relapse. Ask your doctor about treatment goals, methods, and possible side effects. Ask your doctor if she has consulted with others in the decision-making process, and if so, with whom. Older children and teens need to be involved in decisions regarding their care and treatment choices.
JaNette was diagnosed with AML with the Philadelphia chromosome. Four months into treatment, after a routine bone marrow aspiration, I got a phone call from the doctor saying that she had relapsed. I remember going to the hospital where they did another bone marrow. At exactly four o'clock in the afternoon, they gave me a relapse protocol to read. I was sitting on the floor in the hallway reading it, and it was so horrible because I knew what it meant! I understood what we were in for, and I started to bawl and couldn't stop.
Health Canada's publication, This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers, states:
This [relapse] is a time of crisis and ambivalence. The decision to be made is whether to continue to try to achieve a remission or to replace this hope with the hope for comfort for the child and a special time together. Each parent, and the child who is old enough to understand, requires differing amounts of time to reach a decision about how to proceed. Careful and frequent discussions with the medical team, as well as with trusted friends and relatives, may help clarify issues and bring some peace of mind.
Just like at diagnosis, time is a pressing concern. Parents know that treatment should begin as soon as possible. But beware rushing into a new treatment plan if you feel uncomfortable. Your child needs to know that you are 100 percent in favor of proceeding, and children have radar for parents' feelings. There is always time for answers to all of your questions and time to get a second opinion.
Making the decision as to what treatment to choose was much more difficult when my son relapsed. The stakes were higher While I had faith in the skills and judgment of my son's oncologists, I could not rest easy unless I had educated myself on the options available for relapse treatment. His relapse had been suspected for weeks, so I had time to investigate possible treatment choices. His relapse site was rare, which made the usual channels less effective in our case. I started with the online NCI-PDQ and a PubMed search. I asked friends to search for me. From there I contacted a physician from the other leading children's oncology research group and asked what type of treatment protocol they had to offer for my son's type of relapse. I learned that the options were few in terms of protocols addressing my son's type of relapse. At this point I contacted a ombudsman program offered by a national cancer organization. This program sent the details of my son's situation to several pediatric oncologists for their anonymous opinions.
When we sat down with the ped oncologists, I already had some background and knew what was available in terms of treatment. When they presented their choice of protocol, I asked for and was given a copy of the protocol. Reading the rationale and background of the study they were proposing helped me to understand why this protocol was suggested. As a result, I was able to make a difficult decision and enroll my son in a clinical trial with confidence that he was getting the best treatment available. Since it was a very difficult and intense treatment protocol, it also helped my teenaged son to understand why this was the path we were following. Once begun, neither of us had any serious doubts that we'd made the best choice. Now, almost three years later, I am still very pleased that I was able to make a fully informed decision. My son is now a healthy young man away at college. He completed relapse treatment over a year ago and is doing great. His concerns these days are about the dorm food, his next mid-term, and when he can see his girlfriend. He sees his oncologist every three months and they primarily discuss his college life, as he has no signs of any serious long-term effects from his treatment.
Chapter 6, Forming a Partnership with the Medical Team, suggests ways to obtain a second opinion. One excellent resource is the Childhood Cancer Ombudsman Program (see Appendix C, Resource Organizations.) Panels of volunteer pediatric oncologists give second medical opinions or medical record reviews at the request of families or the treating oncologist. The program is particularly valuable in helping families make well-informed treatment choices, as well as becoming comfortable with the therapeutic approach chosen.
The occurrence of relapse does not signal an end to the possibility of cure. Many children or teens with relapsed ALL are cured with further chemotherapy or stem cell transplantation. Prognosis for relapse is better when relapse occurs more than eighteen months after entering initial remission, and when the relapse is confined to non-bone marrow sites (e.g., the CNS or testes).
Initial treatment of relapse is combination chemotherapy, usually with four drugs (prednisone or dexamethasone, vincristine, asparaginase and an anthracycline). Most children will then receive some form of multi-agent intensification treatment for one to three months. Those who relapsed in the bone marrow or testes less than eighteen months after attaining initial remission will then have a stem cell transplant, if a suitable donor can be found. Children with early CNS relapse and those with a longer duration of initial remission may receive additional chemotherapy, with or without irradiation to non-bone marrow sites of disease. Individual considerations may indicate different treatments for specific children.
Treatment for children with recurrent AML depends on prior treatment. It is much less likely to be curable if they have had a prior transplant. Often, treatment plans include high-dose cytarabine (ARA-C) given in combination with other medicines, such as mitoxantrone, fludarabine, idarubicin, and/or L-asparaginase. There is also a newer medicine called Mylotarg, which is an antibody that attacks AML cells. A stem cell transplant usually follows, if the chemotherapy has been effective. Children with recurrent acute promylocytic leukemia (APL) are often given treatments that include arsenic trioxide or all-trans retinoic acid. They may not be treated with a stem cell transplant.
To learn about the most up-to-date treatments, refer to the PDQ for health professionals. These can be obtained by calling (800) 422-6237 (800-4-CANCER) or on the Internet at http://www.cancer.gov/cancer_information/pdq/. Information about ongoing clinical trials is available from the NCI at http://www.cancer.gov/clinical_trials/.
The information gleaned from second opinions and/or research may reinforce what your doctor recommended, or it might provide you with some additional treatment options. Either way, it may increase your comfort level during the treatment planning process. The following are questions that you might want to ask your doctor when discussing the treatment plan:
• What is the goal of this treatment? Is it likely to cure my child, or is it to increase comfort?
• Why do you think that this treatment is the best option? What are the other choices, and why are you recommending this one?
• Have you consulted with other physicians? If so, with whom? Did you all agree on this treatment, or were several choices suggested?
• Is there a standard treatment for this type of relapse? What is it?
• What clinical trials are ongoing for this type of relapse?
• Explain the potential benefits and possible side effects of the suggested treatment.
• What are the known or potential risks of the treatment?
• How often will my child need to be hospitalized?
• How long will my child need this treatment?
• If the treatment is investigational, is there scientific evidence that it works for leukemia?
• Does insurance cover this type of investigational treatment?
After his CNS relapse while on maintenance, Stephan (8 years old) received cranial and spinal radiation and went through another induction, and they started to give him spinals with ARA-C, methotrexate, and hydrocortisone. Even with ondansetron it's bad. He's very sick to his stomach and just feels queasy all of the time. After the reinduction, he went back on his maintenance schedule and will finish at the expected time. But it's much harder for him now. His ankle bones ache, he's limping, and he can't run. Six days after vincristine, he gets severe back pain, like someone is pounding on his back hard. If he is bumped or jarred, he cries out in pain. He creeps along looking like an old man.
When Greg relapsed, they threw his protocol in the trash can, and our oncologist started making phone calls to other doctors in the Children's
Cancer Group network to decide on a plan. Greg was put successively on three different relapse protocols in an attempt to keep him in remission. When his counts went down, the blasts would temporarily disappear, but when his counts rose, the blasts would creep back. His CNS relapse was followed by a bone marrow relapse, and the only option left was a bone marrow transplant, but we didn't know if he would be strong enough to survive it.
After another relapse, they wanted to try a chemotherapy with limited possible results, and we really didn't want our 11-year-old Caitlin to go through any more. But she talked it over with the doctor and concluded, "Of course I have to do it. I'm a fighting Irish."
When older children and parents disagree on the details of how to proceed, use the hospital social worker or psychologist to help you negotiate and make compromises. These discussions will help clarify each family members thoughts and feelings, and will allow the childs emotional and physical well-being to be part of the equation.
Jesse relapsed four times, and in some ways it got harder and in other ways it got easier. We knew each time that her chances for survival were fading, and that was hard. But each time we grieved and worked through the feelings, and our skills at handling relapse improved. I turned to God for comfort, and I think that helped me feel that I was standing on a rock out in the ocean, rather than thrashing around in the water. My faith gave me solace. Jesse handled the relapses better than anyone else in the family. She would calmly listen to the doctors' explanations, then she would say, "Okay, what do we have to do?" She was never angry. She was sometimes sad, but mostly accepting.
In the Spring 1995 issue of the Candlelighters newsletter, Arthur Ablin, MD (Director Emeritus of Pediatric Clinical Oncology at the University of California, San Francisco) writes of the importance of goal-setting in the decision-making process after relapse:
Before determining which treatment is to be chosen, a decision must be made to determine the goal of treatment—in other words, what is it that we are trying to achieve. This crucial first step is the basis upon which any decision concerning treatment must be made. But it is too often omitted from consideration and/or discussion, even by the most experienced. The frustrations accompanying the previous failure of treatment, the fear of the loss of the hope for cure, the pressure of urgency to find solutions, the new awareness of the possibility or probability of death, lead us all to want to consider treatments first rather than these more difficult considerations involved in establishing goals. These also force us to deal with reality earlier, which could mean the almost intolerable confrontation with the death of a very-much-loved child, a tragedy to be avoided at all cost.
After you have set goals, received answers to all of your questions, obtained a second opinion if desired, and decided on a treatment plan, it is time to proceed. Your knowledge and experience may prove to be a double-edged sword. You have no illusions about the difficulties ahead because you've done it before, but you also will be strengthened by your ties with the cancer community, your comfort with your physicians and hospital routines, and your ability to work the system to get what your child needs. Many parents shared how their child took the lead about relapse treatment. While the parents agonized, their child said simply, "Lets just do it." And they did.
I encourage people to try to keep things in perspective. Attitude is a big part of survival. As difficult as it is, try to maintain a good attitude and keep focused on the future. I always thought, "I have cancer, this is a bad thing, but I am going to beat it." My analogy was a boxing match. When I relapsed, I was knocked down. But I always got up and kept fighting.
I had a total of three relapses, two of which were on treatment. Every time we relapse, statistics say our chances of survival are less likely. But I survived those three relapses, and now I live a life as normal as if cancer never touched it. After cancer, I finished high school and went to college. I gave birth to a beautiful, healthy baby girl. My daughter (still beautiful) is now 7 years old. For me, life does go on after cancer.
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