Alternative treatments

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Alternative treatments can be defined as either treatments that are used in place of conventional medical treatments or treatments that may have unknown or adverse effects when used in addition to conventional treatments. Sometimes alternative treatments are illegal or unavailable in the United States or Canada, and patients travel to other countries to obtain them.

Alternative treatments are usually based on word-of-mouth endorsements called anecdotal evidence. Medical therapy is based on scientific studies using large groups of patients. In treating cancer, these large clinical trials have resulted in increases in survival rates in the past three decades.

Many alternative treatments can help parents and children feel that they are aiding the healing process. Even with a good prognosis for your child, it is difficult to ignore the advice of friends and relatives extolling the virtues of various alternative treatments. Parents just want to help their children in every way possible; they often feel helpless, and they agonize over the pain that their child endures for many months or years while on conventional therapy.

It is extremely important that any therapy that involves ingestion or injection into the body (herbs, vitamins, special diets, enemas) only be given with the oncologists knowledge. The involvement of the physician is necessary to prevent giving something to your child that could lessen the effectiveness of the conventional chemotherapy. For instance, folic acid (a type of B vitamin) replaces methotrexate in cells and reduces or eliminates its effectiveness, allowing cancer cells to flourish. The oncologist will be much more knowledgeable about these potential conflicts than a parent, herbalist, or health food store salesperson.

If you want to evaluate claims made about alternative treatments, here are several ways to collect enough information to make an educated judgment:

• Contact your local American Cancer Society or Canadian Cancer Society's division office and ask for their information on the therapy you are considering. They have compiled information on many therapies describing the treatment, its known risks, side effects, opinion of the medical establishment, and any lawsuits that have been filed. The American Cancer Society has an online database at http://www.cancer.org with information about many alternative treatments.

• Check the National Institutes of Healths National Center for Complementary and Alternative Medicine to see if any scientific evidence exists on the treatment that interests you. The office can be reached at (888) 644-6226 or online at http:// nccam.nih.gov. Additional information can be found at http://www3.cancer.gov/ occam/.

• Ask specifically what this treatment is expected to do for your child; ask what is in it; ask what tests will be done to determine whether your child needs it and whether your child is benefiting from it.

• Collect and study all available objective literature on the treatment. Ask the alternative treatment providers if they have treated other children with cancer, what results have been achieved, how these results have been documented, and where they have reported their results. Ask for the reports so that your doctor can review them.

• Talk with other people who have gone through the treatment. Inquire about the training and experience of the person administering the treatment. Be sure to find out how much the therapy costs, as your insurance company may not pay for alternative treatments.

• Beware of any practitioner who will give your child the alternative therapy only if you stop taking the child in for conventional treatments.

• Never inject any alternative product into a central line. Children have developed life-threatening infections and have died from this.

Take all the information you have gathered to your childs oncologist to discuss any positive or negative impact that it may have on your child's current medical treatment. Do not give any alternative treatment or over-the-counter drugs to your child in secret.

Some treatments negate the effectiveness of chemotherapy, while other substances, such as those containing aspirin or related compounds, can cause uncontrollable bleeding in children with low platelet counts.

At one point, we decided to try some alternative therapies with our son. Our plan was to use it in conjunction with his conventional treatment. I scheduled a meeting with his oncologist and discussed the alternatives with him. I wouldn't dare attempt to start anything, not even vitamin supplements, without first talking it over with the doctor, because I was scared that I would cause my child more harm than good. I was grateful that the oncologist was willing to listen to what I had to say and offer his opinion.

We both agreed that the alternative therapy we had in mind wouldn't do any damage or interfere with the chemotherapy my son was receiving. Two months later, we decided that it was doing absolutely nothing for him, so we stopped. I figured the money would be better spent at the toy store than on a useless therapy I learned a valuable lesson from that experience. I'm much more skeptical now than I used to be. My new motto is "show me the proof."

I gave my son echinacea when he received chemotherapy. I checked with his doctor first. He didn't think it would hurt but didn't think it would help, either Still, all the nurses in emergency swore by the stuff. We got good results, too. We started the echinacea after lots of treatment, and it was the first time that he didn't have to be readmitted three days after chemo for febrile neutropenia. I'm convinced that it helped him during the recovery period when his counts would bottom out.

If, after thorough investigation, you feel strongly in favor of using an alternative treatment in addition to conventional treatment and your child's oncologist adamantly opposes it, listen to her reasoning. If you disagree, go get a second opinion.

My daughter Meagan was diagnosed with average-risk ALL over seven years ago. She had many chemotherapy-related side effects, including severe high blood pressure and ongoing liver problems. We were constantly adjusting her doses or taking her off chemo altogether

I was so obsessed about it that the doctor took me aside and told me that it's easier to treat leukemia than liver failure, and he just had to take her off her medications. He told me I had to stop worrying, but I couldn't.

When her hair fell out again during maintenance, I just worried more. I realized that every child seemed to have something that went wrong, but I was amazed at how many different "somethings" there were.

Now she has a head full of gorgeous hair. She was just chosen for the select soccer team and is quite an accomplished skier She has no long-term effects, and is healthy and happy.

CHAPTER 11

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