Medical Advice: Surviving A Clinical Trial For Cancer


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Possible risks factors, side effects and the need to educate yourself about clinical trials for cancer before taking this major step.

The letter loomed larger than life, it read, “You are invited to participate in a “chemo-prevention” therapy trial, to study patients with a high risk of developing Multiple Myeloma or a reoccurrence of cancer. This study is currently recruiting patients. It is not known if the treatment you receive will offer any increased benefit than that currently available outside of participation in this research. It is possible that this treatment will shrink your cancer or improve your symptoms or improve the functioning of your immune system.”

Well, what can you possibly say to this? It would be easy to get lost in our fears and anxiety. IF my tumor responds, my symptoms MAY decrease and I MAY feel better and my life expectancy MAY increase for as long as I respond to the treatment. The objective of these trials is to evaluate safety in these disease settings and to observe reduction of existing cancers.

“It is possible that the drug you receive will do you more harm than good.” But of course if you do not benefit from taking part in this study, information gained by taking part may help other patients. Am I a hero? You bet you are! You must feel confident in your treatment decisions before you begin. “Be pro-active or be a doormat”, as the saying goes.

Is it worth the hassle? Of course it is, you have been diagnosed with an incurable cancer. Zilch, nada, nil, zip, zero, no cure has been found. What do you have to lose? Even with chemotherapy, radiation, harvesting of bone marrow stem cells from your blood, (so they can be re-infused following treatment) and the bone marrow transplant itself may only buy you a few extra years and a bit of hope if you are very lucky.

“Long-term consequences are unknown, health risks are undiscovered. Unanticipated side effects may occur.” The effects of the drugs used are potentially teratogenic (deforming). Risks to a fetus are unknown. Many clinical trials will request that you sign a waver declaring that you will not become pregnant or that you will use effective birth control during the trial.

Educate yourself. Pay attention to detail. Ask about biological therapy. Research alternative therapies. Thalidomide is Back! The bad boy of the 50’s and 60’s has resurfaced in clinical trials to combat cancers. It caused over 10,000 birth defects during the 1960’s. Celegene, the manufacturer that produces Thalidomide is testing a new drug that will hopefully work as well with no side effects.

The need for immediate treatment decisions are rare. There is little to be lost in taking time to obtain a second or even third opinion. Studies have shown that treatment decisions change 25% of the time after a second opinion.

The best time to act is before any therapy has been undertaken for your cancer. Go to the medical library of your local hospital and ask for current medical literature on your cancer. Contact the pharmaceutical companies directly. They are developing innovative products designed to provide improved, cost-effective treatments for patients with cancer.

Call the National Cancer Institute. Your tax money pays for this service. They can provide you with a list of studies the government is subsidizing, apropos to the type of cancer you have. They will even send you updates in an e-mail if you so specify. Access to cancer information from NCI via the World Wide Web is available on CancerNet.

You will find that the Internet’s Information Super Highway is a phenomenal place to find “real time” data. Most hospitals and Cancer Centers are online. You can e-mail a doctor, get a response, print out a map to the center, find out what the cafeteria is serving for lunch and study a layout of the good parking spots, all before your second cup of coffee!

Join an online Cancer Patient Support group or newsgroup. Use these forums to talk and ask questions. Your local hospital will know of Cancer Support Groups. You will find many knowledgeable caring people, caretakers, patients and healthcare professionals there to share there experiences of going through the same thing. It helps to be able to hear other people’s trials and tribulations and to know what to expect or at least what is within the range of normalcy.

Life itself is a challenge! It is difficult to function effectively with all these challenges. The physicians in charge of clinical trials are aptly named “investigators”. The sharing of the grief and pain of this disease turns cancer patients and caregivers into warriors. You will hear them speak of strategies, battles, kicking ass or stamping out this disease. It is known as “Crapola” or the “Beast” in the online circles. ” The Beast” is bitterly hated by the warriors.

Get all the opinions prior to agreeing to treatment. In this way, the strategy is set at the beginning. Continue to ask questions and demand answers that are based on the medical literature. Be prepared for weekly blood draws and peeing in a cup. Watch for dehydration, fever, diarrhea, vomiting, infections and extreme fatigue. There is always the possibility of complications, all procedure have potential dangers. The clinical trial is no exception. Knowing who to call is just as important as when to call.

Always remember you have rights, you may choose to opt out of a trial at any time. Ask lots of questions and do your homework. Get copies of your medical records and blood work, put them in a binder. Carry this with you to all appointments. Elect a friend or family member to go to the appointments with you or carry a personal size tape recorder and tape the doctor as he gives you information. Management of clinical trials are a team effort. They require coordination and cooperation among surgeons, oncologists, hematologists, your primary care physician, your insurance company and you!

Written by Yvonne James-Henderson

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