While late relapses are rare, they have been observed and studied. Relapse diagnosis at any point is devastating, but a “late” relapse (3 or more years after finishing frontline treatment) can be especially unexpected. Being thrust immediately into treatment decisions after a hiatus from keeping up with the developments in the treatment of NB can be overwhelming. Quickly obtaining records of cumulative doses of chemotherapy and radiation received during frontline treatment is very important. After late relapse a child can sometimes receive aggressive therapy again, similar to frontline treatment. Late relapses often demonstrate prolonged response to treatment.
Maximizing your child’s treatment options is an important part of the relapse decision process. (This is also the case with refractory neuroblastoma, hence very similar considerations are discussed in that chapter). Without knowing if the child will respond to any given treatment beforehand, it is wise to plan for more options later. This means looking at the eligibility criteria of trials and keeping a close eye on the child’s organ function. For example, the liver enzymes may be elevated and eliminate the child from a particular trial. Some trials do not allow prior allogeneic (donor) transplants or radiation to more than 25% of the bone marrow. Others require the availability of stored stem cells. There are many such criteria, and looking at all the possible trials (including those that may open in the near future) helps parents consider and determine the maximum possibilities.
In other words, it is important to take the long view when deciding between trials. Some trials may prevent you from being treated with another drug/trial down the road; some may have long periods of recovery with low counts and transfusions; and some may have high risk of side effects that will rule out subsequent treatments. Read the trial documents and consent forms carefully, and talk with your doctors about a possible series of treatments that will make the best use of the available treatments while not precluding the possibility of other effective treatments later. It may seem unimportant now, when the situation is so critical—but it is also worth considering and asking the doctors about side effects from the treatment that may affect hearing, cognitive, and/or physical development.
Weighing Quality of Life and Other Considerations
Providing a child with maximum quality of life during relapse treatment without eliminating some promising “harsh” treatment may present difficult choices. Every parent wants a treatment that ultimately brings cure, but after already seeing the hardships of frontline therapy, parents and children understandably may gravitate to what is “easiest” of the promising choices given. One of the goals of relapse treatment is commonly “tolerability,” and researchers recognize this – the reason so many studies report something along the lines of “this combination was well tolerated in heavily-pretreated children with resistant neuroblastoma.”
Moreover, attention may have to be given to some non-medical concerns. In addition to direct financial cost of treatment, there are a host of social, psychological, and emotional considerations that may bear on the treatment choices. For example, one important consideration may be whether a treatment would be available through a local facility, or only through a regional medical center. Many families have elected and successfully maintained a treatment “partnership” between their local oncologist and an NB specialist in another part of the country. If the treatment requires travel and extended out of town stays, then careful consideration must be given to balancing time away from school, a caregiver’s time away from work, time away from other family members, and even time away from the ordinary, everyday sort of activities that might provide a sense of stability for the child. Whether absence from home is temporary or long-term (some families choose to stay near remote treatment centers for months and even years), consideration of the impact on marriage, family, income, and the child’s social development may be required. If possible, it may be helpful to discuss these concerns with families who have experienced the course you are considering. Some parents have found it valuable to have fairly clearly established and regularly reviewed “rules of disengagement” – i.e, an exit strategy that will determine when it might be best to return home and/or suspend certain treatment regimens.
These are difficult issues indeed, and very personal in nature.
Investigating Doctors and Clinical Trials
Presented with such complex issues and decisions, it is not surprising most parents of relapsed children eventually find themselves doing research themselves. You may simply wish to understand better your child’s situation and treatment options, or you may wish to bring more informed questions to your child’s doctor about different treatment possibilities. Alternatively, you may feel your child’s doctor is not sufficiently pro-active in exploring treatment options or is not fully informed about certain specific options available for children with relapsed disease.
Whatever the rationale, your research may involve exploring online the relapse protocols offered at other cancer centers; speaking to principal investigators (the oncologists heading up the research) of new clinical trials; and/or obtaining second opinions from one or more neuroblastoma specialists based on their comprehensive examination of your child and his or her history. Many parents also speak with others whose relapsed children have been treated on certain clinical trials; be mindful that every child is different and the experience of others may have limited relevance to your child’s situation.
Getting a Second Opinion
If you are being treated at a medical center that sees very few cases of neuroblastoma, you may decide upon your child’s relapse that this is an appropriate point in the journey to get a second (or third) opinion.
For a list of neuroblastoma specialists in the U.S. and their contact information, see “Confronting the Diagnosis: US NB Specialists.” in the NB Parent Handbook or clink here (embed link to 1.2.3). Keep in mind that this is not a comprehensive list and some of these specialists treat a large number of patients, and they often receive dozens of calls and emails a day. It is advisable to speak with the doctor’s secretary first and find out if the doctor prefers to be contacted first by email or phone and the best time to call.
Also, a doctor cannot give you an informed second opinion over the phone or in an email! To recommend a course of treatment the consulting doctor will require:
- a complete treatment summary;
- recent medical records (such as scans and biopsies);
- a physical examination of your child; and
- possibly additional tests and scans.
You must take the responsibility to get a treatment summary completed by your child’s current doctor and have copies of pertinent medical records sent to a consulting physician. This can take time and may require patience with some frustrating administrative delays.
Even if you decide to move your child’s primary treatment to another center, your child’s initial oncologist is an invaluable resource when weighing relapse treatment options. Having intimate knowledge of the child’s specific history and his or her present condition, your child’s initial oncologist is in a unique position to help you consult with additional NB experts as you seek new treatments for your child.
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