PUTTING TOGETHER YOUR INDIVIDUALIZED TREATMENT PROGRAM
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Presenters: Carole O’Toole, M.S., Joan Runfola, L.C.S.W., A.C.S.W.,
Richard Steinberg, M.D., and Alan Stone
Moderator: Pali Delevitt, Ph.D.
Session: Sa13; June 12, 1999I. Abstract
Four presenters offered their suggestions on creating individualized treatment programs. Each of the presenters have had cancer and were kind enough to come and speak to this group about their stories and also to offer suggestions on how to go about creating an individualized treatment plan. Advice was given on how to make a decision and on how to research and follow an integrative plan. The theme most stressed in all of the presentations was to follow your instincts and to find a treatment plan that you feel comfortable with.
II. The Program
A. Ms. Carole O’Toole, M.S.:
Ms. O’Toole coaches cancer patients on integrative care and organizes and plans cancer conferences. She is in the process of writing a book with Dr. Steinberg (mentioned later). Carole was diagnosed 5 years ago with the very rare inflammatory breast cancer. She used complementary and conventional treatments to control her illness. She used conventional treatments such as radiation, chemotherapy, mastectomy and a bone marrow transplant. While doing the above she incorporated alternative therapies. In her presentation, Ms. O’Toole spoke mainly about how she developed her plan, which included both alternative and conventional therapies. She listed the important guidelines she followed in creating her plan and emphasized how important it is to realize that each plan is highly personal and individual. Also realize that it is a process that must have structure and be pieced together over time.
- At the onset, define your expectations and limits:
a. What are your goals?
Example: to boost the immune system, have better coping skills, decrease side effects, how much research do you need to feel comfortable.
b. How much time, money, travel,… are you willing to devote to your individualized treatment plan (ITP)?
Answering these questions will help to give your ITP direction.
- Talk to everyone you know about your plan and do as much research as possible on it.
Got to the library, surf the web, talk to friends, meet with healers and doctors, and talk to acquaintances and strangers you meet. It is important to learn as much as possible about the options you have in order to decide what is right and comfortable for you.
- Follow your heart!! If you listen, your intuition will tell you what to do.
Make sure to include quiet time in your day and space. Meditate, pay attention to your dreams, be open and pray. All of the information you will be collecting will be overwhelming and scary. Try to sit and let the information digest. This will allow you to follow your heart and do what is right for you. Also don’t get stuck on time. Doing the above allowed her plan to take a form with which she felt at peace.
- Interview healers before you decide on one.
Make sure you find doctors and healers that you are comfortable with and that are in line with you and your goals. Remember that you may make mistakes with this and that you should not get discouraged. It is simply a sign that it is time to move on.
- Have Patience!!
It is so important to have patience and take time to listen to your body and how it heals. The process of creating a plan is just as important as the outcome. Developing a plan is a dynamic flexible process that changes with time. Remember that healing takes on different forms at different times. Have faith in yourself and your healer by being in touch with your body and its changing needs. But, be careful to know when to stop and start different programs. If something was working and now it isn’t, your body is telling you it is at a different level of healing and it is time to move on.
- Express yourself and communicate.
Express what you want and how you feel. The patient must take charge of his/her own individualized plan. Sharing information with doctors and healers makes this process a partnership and will bring your relationship to a different level.
- Find support for what you decide to do.
Enlist family, friends, healers, doctors,… to support you and your plan. Take notes and keep a journal on your needs and wants and express this with your support group and other survivors to help them.
In conclusion, trust yourself and try to find joy in the midst of the pain of cancer. The above guidelines helped her move from a position of fear to love!
B. Richard Steinberg, MD:
Dr. Steinberg was an emergency room physician, who is also trained the in the art of acupuncture. He was diagnosed with Non-Hodgkins Lymphoma in 1996. Developing his treatment strategy was the greatest challenge of his life. In his talk he gave some suggestions, based on his experience, on how to deal with the process of developing an ITP and what he did to keep his disease at bay.
- Interview!
Get all of the information you can get your hands on regarding the people who will help treat you. See what they have to offer and explore treatment options and the side effects with practitioners. Try to determine what is life threatening. In his experience, he saw 6 oncologists in 6 weeks. All presented a wide range of options, stressing that he needed to get treatment immediately. Most said he should do chemotherapy but it did not make a lot of sense to him to treat a cancer affecting the immune system with toxic substances that attach the immune system. So he decided to wait and research alternative therapies.
- Meditate!
He decided he needed to learn how to meditate. He needed to find a quiet, restful, stress-free place to help him relax and sort through what he was thinking and learning as he did his research. This helped him tap into his inner resources to become aware of his thoughts and feelings. He used biofeedback and yoga to do this.
- Homeopathy, acupuncture, detoxification.
He believed that his body had all of the resources it needed to heal the cancer so he used homeopathy, acupuncture, and a detoxification protocol to heal his body.
- Diet and Nutrition.
He changed his diet to create a more health in his body. His goal was to decrease the stress on his body of a poor diet. This was difficult to find the right combination for him and he revised his diet several times until he found what worked for him.
- Emotional and Psychological issues.
In order to address the emotional and psychological issues he was facing, he spent a week at Smith Farms Center for the Healing Arts. There he shared fears and feelings with 7 other cancer patients. This was a very loving and nurturing environment that helped him to work through some issues. He still meets with most of the people he met there on a regular basis as a support group. He also talked to friends and family and saw a therapist in order to tap into unresolved conflicts and discuss dreams. All of this helped him to find peace and appreciation for who he is and accept what life has to offer.
- Life style changes.
He changed portions of his life that did not make him happy or caused him stress. He left his job as an ER doctor to practice the kind of medicine he enjoys most, alternative medicine. He also does yoga daily.
- Stay current on Conventional Therapies.
He kept up on conventional therapies and when one felt good to him, he would add it to his program. For instance, he took monoclonal antibodies because it would help boost his immune system and it had low toxicity and side effects.
This whole process he experienced has allowed him to live life with greater joy. He learned to search for what made him happy. He also stressed in closing that we all have unique paths. Therefore we must have different ways to heal. Patients need to be active in the process of healing. Empower yourself (this is a prognostic indicator of survival)!
C. Joan Runfola, L.C.S.W., A.C.S.W.:
Ms. Runfola works at Cancer Care Inc. in New Jersey. This is a corporation that has for several years been a resource for cancer patients. Their goal is to help cancer patients make decisions on what type of treatment program is best for them. They encourage alternative therapies. Since she was recently diagnosed with breast cancer, this whole process that she has been counseling people on for years has taken on a very different and personal meaning for her. Ms. Runfola spoke about the decision making process used in developing an ITP, a process she has taught and is now using herself.
In order to decide whether you will use complementary, conventional or a combination of therapies, one needs to explore how you feel and determine with what you feel most comfortable.
- Follow your instinct.
- During this process, you will need space and time. Try relaxation techniques and meditation. So much information is thrown at you that it is very helpful to take the time and space to process it all.
- Enlist people to help you. Talk to and use family, friends, healers, practitioners,…. In order to find out as much information as possible and for support.
- Get an Attitude! Show respect for yourself and that you have the right to decide what is the best for you. Someone once said, the difference between a cancer victim and a cancer survivor is attitude.
- Really do your homework. Ask anyone you can and try to integrate different therapies.
- Communicate with your practitioner, oncologist and healer. Try to have them communicate with each other, if possible.
- Educate!
Bring articles and information you have discovered to your oncologist and healer. Educate them on what you feel and what therapies you are using.
- Find information on the web and evaluate it. Be careful because some of the information you encounter may be inaccurate or the methods used are not the best.
- Obtain support and guidance from: a counselor, support groups, nurses, doctors, family, friends. They can often help navigate you through the decision making process.
- Question!
When looking into various treatments, ask yourself questions like:
How does the method work?
What are your goals? (Quality of life, prolong life, tumor shrinkage, etc.)
What are the statistics like and what type of research study was done?
What are the side effects of the treatment?
Does insurance cover the costs of the treatment?
What are the credentials of the practitioners you are interviewing?
What is your belief system?Talk to other patients who used the types of therapies you are interested in.
The above questions and ones like them will help you chose a program that is in line with your lifestyle and who you are and what you believe in. Her last remarks were to "Follow your instincts!!"
D. Alan Stone, (NCW):
Alan Stone, joked about "NCW" as being is a man with "no credentials whatsoever". He is just an ordinary man with cancer. Alan was diagnosed with prostate cancer, gleason 9, stage III in 1997. He went to many oncologists who said he needed surgery immediately and radiation. Alan explained he doesn’t like to be told what to do. He did not feel comfortable with the radiation and surgery plan so he talked to his wife about it. She suggested he go to see a man named Donnie Yance. Donnie is a herbalist that Alan had gone to see back in 1992 for a heart condition. His herbal program worked amazingly well for him so he decided to take his wife’s advice and call Donnie.
When he told Donnie the situation, Donnie said he could take care of it. Alan proceeded to repeat the diagnosis to Donnie and Donnie yet again reassured him he could take care of it. Donnie recommended an oncologist to him and together they put him on a combined program that included alternative and conventional therapies.
The first thing he did was take SPES. This is a mixture of 8 Chinese herbs (developed by Sophie Chen) designed to attach prostate cancer. He also changed his diet (mostly vegetables), took L-glutamine, anacetyl cystine, Co enzyme Q10, aloe vera gel, did raiki, and exercised. (Just as a side note, he had been taking the CO enzyme Q10 since his heart condition developed in 1992. He increased the amount once he had cancer, as was suggested in the literature.) During this process, he developed a strong support group consisting of family, friends, co-workers, doctors, and healers. He prayed and meditated to stay relaxed and to sort out how he was feeling.
During his research he came across some interesting articles. He read an interesting paper on teeth and cancer. It discussed how often cancer patients have many infections in their mouths. He went to the dentist and sure enough his mouth needed fillings and root canals. Being the optimist that he is, he had all of the work done on his teeth to improve his smile!
He also read about CSCT (Cell Specific Cancer Treatment, 519-792-5155). This is a method of using electromagnetic wavelengths to kill cancer cells. There is a center, located in the Dominican Republic, which performs this type of treatment. After researching this and speaking with the people who run the center he became very interested in trying this out. He told both his doctor and Donnie about it and they advised him not to do it. He decided to follow his instincts and do it anyway. He went to the Dominican Republic for 4 ½ weeks. First they magnetized him to see if he could handle the treatment. From this process, they concluded that he had cancer in 9 areas of his pelvic region. While he waited for his treatment to begin, he talked to many of the cancer patients there receiving the treatment. Just by talking to them, he felt very relaxed and he for the first time felt as though he could conquer the cancer. After the 4-½ weeks of treatment, they told him that there was no more cancer left in his body. They advised him to go back to America and immediately begin a detoxification program. He took their advice and used a program found in the book, Prostate Health in Ninety Days by Larry Clapp. They advised him to wait 5 weeks before he had his PSA levels measured. When he did, they had dropped 3 points. During his detoxification he did Chi Gong and took Thymine Protein A (stimulates the immune system).
While this was going on, his wife had read about a place called the Mission Bay Medical Society. They do a complete blood chemistry analysis and then make recommendations to help you fortify where you have any deficiencies. When the woman called to give him his results, she questioned him on his age. She could not believe that he was 66 years old because he had the blood chemistry of a 20 year old. She told him not to change a thing. He asked her about the cancer and she replied, "What cancer?" He told her he had prostate cancer. She said that there was no evidence of any cancer at all. There are several markers they check for in the blood to detect cancer. She said that if someone had cancer in their hair they could detect it because their tests were so sensitive. She said he did not have cancer any more. He decided to have a PET scan done to confirm and sure enough, no cancer was detectable. Both his doctor and herbalist told him to stay on a modified program. He has been cancer free for 2 years now and still has ice cream every once in a while!
III. Resources
Donnie Yance is located in Connecticut and can be reached at: 203-333-6007. Alan Stone suggested a good book on herbal therapies called: The Definitive Guide to Cancer by Berton Goldberg.
IV. Audience Questions
Are there any good books on integrating complementary and conventional therapies?
There is a new book coming out from PDR (Physician’s Desk Reference) that completely details integrating conventional and alternative therapies. Look for it soon.
Is there a place to go in the area if someone is interested in alternative therapies?
the Center for Mind Body Medicine is an excellent place to call in the area.
What is the most useful way for family and friends to present information/advice to cancer patients?
First try to assess their interests. Then confront them and ask them if it is a good time. Explain that you have information/advice for them and that when and if they want to hear it, you would be happy to sit down with them and talk.