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10/12/2009

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Dear Dr. Frank,

Congratulations on your new blog! I've read and recommended your terrific book to many people since reviewing it on my blog on Healthy Survivorship: http://www.tinyurl.com/HS-080509

I'm a physician who has been in-and-out of treatment for an indolent lymphoma since 1990.

All the textbooks say my type of cancer is "incurable." Although none of the many treatments I've received over the years has cured my cancer, and even though there are no known cures available today for my type of cancer, my cancer is not incurable. Rather, it is simply one of the types for which researchers are still working toward cures.

Advances in science and technology over the past two decades have changed how we understand the word "cure." Nowadays different people mean different things when they use this word. I discuss the confusion surrounding this term in an article entitled, Chasm of a Cure: http://tinyurl.com/ykfxwqq

I'm looking forward to learning from your blog. Thank you for all your efforts to help patients become Healthy Survivors (i.e., survivors who get good care and live as fully as possible).

With respect and hope, Wendy

Dear Dr. Harpham,

With your many books, lectures, blog and regular column "Beyond the Stethoscope" in Oncology Times you have provided inspiration and hope to thousands of patients and families facing cancer as well as educated your fellow physicians. Thank you for your great leadership and compassion and thank you so much for your comment. Every visitor to this site should visit your blog, which is a click away on my home page.

I agree 100% with your perspective on cure. I made a specific point of defining cure (?the other "C" word) in my book because it is often not mentioned in books on cancer by physicians. As a big example, would you believe that the bible of cancer medicine "Cancer: Principles and Practice of Oncology" by DeVita, et al., does not index or define cure?

With regard to the young person diagnosed with a low-grade or indolent lymphoma (such as Follicular grade 1 or 2, chronic lymphocytic leukemia (CLL)/small lymphocytic, lymphoplasmaytic (Waldenstrom's), MALT or marginal zone) or multiple myeloma I frankly tell them that "though I am supposed to tell you that the cancer is incurable, the goal here is cure."

Why do I say this and am I giving false hope? My statement is built on my experiences as a specialist in the care of patients with hematologic malignancies which mirror the latest data. For example, data using the combination of fludara, cytoxan and rituxan (FCR) to treat CLL indicate an approximate 70% complete response rate (no evidence of the disease)with over 50% of patients still in remission 7 years out. That is a remarkable result compared with historical treatments with medicines such as leukeran and prednisone (no complete remissions). The treatment of other types of lymphoma has been revolutioninzed by the development of Rituxan,which may be given alone or with chemotherapy depending on the situation. Other options such as the radioactive antibodies Zevalin and Bexxar, new chemotherapies such as Bendamustine, stem-cell transplant and an abundance of truly promising drugs in the research pipeline give me the evidence to state realistically that indolent "incurable" lymphomas can be cured in some cases if not controlled for many years in most. As you wrote in your column on cure referrenced above, the difference may be one of semantics.

Dr. Frank,

Would you comment on why there is such a time lag between exposure to a carcinogen and the actual development of the disease?

M. Brooks

My husband has been fighting Renal Cell Cancer which spread to bones eight years ago. His left kidney was removed fifteen years ago. He has been using Interferon for eight years. Three weeks ago a chest scan showed he had active lung tumours. He is now using Sutent 50mg, which is really hard on his body. I found your book recently and it has given us great comfort and hope. Your very positive approach has made me think he can survive this again. Thankyou Marg

Dear Ms. Shelton,

Thank you so much for sharing the inspiring story of your husband's survival with advanced kidney cancer. His prolonged response to interferon is a hopeful indication that his cancer will respond well to some of the newer agents for this disease, one of which he has just started.

There are now 4 drugs approved for advanced kidney cancer that operate to block the blood supply that feeds a growing tumor: Sutent, Nexavar, Avastin and Pazopanib (just FDA approved). There are also 2 recently approved drugs, called Torisel and Everolimus that affect a molecule called mTOR, involved in cancer cell growth.

Oncologists usually begin with one drug such as Sutent and then change to another one when it appears the cancer is no longer being controlled. If your husband is having difficulty with Sutent 50 mg per day (given 4 weeks on, 2 weeks off), then you may ask the treating physician about changing to 37.5 mg daily without interruption. It is an alternative dosing schedule that appears to be better tolerated.

I wish you and your husband continued good health and long lives.

Dear Ms. Brooks,

Thank you so much for your question. A carcinogen is a cancer causing agent, such as an environmental toxin, radiation or some of the chemicals in tobacco. Regardless of the type of carcinogen, the conversion from normal cell to cancer cell usually occurs because of damage to the normal cell's DNA. The altered DNA enables the cell to either grow faster or simply not die when it is supposed to; often it is a combination of these properties that gives the mutant cell a growth advantage in the body. These changes accumulate over years, which is why there is a "lag time" between exposure and the development of cancer.

Interestingly, the carcinogenic or cancer causing properties of industrial or environmental chemicals was described as far back as the 1700s. Among the first link was the description of lung cancer in european miners who were being exposed to uranium and its decay products.

There is a long list of agents considered carcinogenic and which are banned from use or exposure to humans. On the other hand, I do worry if we are being sufficiently protected by our government from the many potential carcinogens in the food we eat and air we breathe. Perhaps you have some thoughts on these.

Dear Dr. Frank,

Yes, there is a long list of environmental carcinogens and at the risk of boring your readers I will list some of them.

ionizing radiation: Radon - a colorless odorless gas found primarily in basements and in water.
risk; lung cancer
X-rays - industry and medical facilities
Radioactive Substances - industry, and medical uses

Pesticides: Of the 900 actively used and registered pesticides 20 of these are known or suspected to be carcinogens
Some of these are; ethylene oxide
amitrole
chlorophenoxy herbicides
DDT
dimethylhydrazine
hexachlorobenzene
hexamethylphosphoramide
chlorodecone
lead acetate
lindane
mirex
nitrofen
toxaphene

Drugs: Estrogen in oral contraceptives is known to increase the incidence of breast cancer and endometrial cancer.
Diethylstilbestrol which is no longer in use but was prescribed for pregnant women from the early 1940's till 1971,
increased the chances of rare forms of vaginal and cervical cancers in daughters born to these women.

Solvents: used as paint thinners and grease removers and in the dry cleaning industry.

benzene (known to cause leukemia)
carbon tetrachloride
chloroform
dichloromethane
tetrachloroethylene
trichloroethylene

Fibers and Dust Particles: asbestos (causes mesothelioma) found in insulation
ceramic fibers (lung cancer) used as an asbestos substitute!
silica dusts (lung cancer)
wood dusts (nasal cavities)

Dioxins: produced by the paper industry and incineration of waste materials of which the most potent carcinogen is
TCDD (2,3,7,8-tetrachlorodibenzo-p-dioxin)

Polycyclic Aromatic Hydrocarbons: found in gasoline and diesel exhaust, soot, smoked, barbecued, and charcoal
broiled foods, associated with lung, skin and urinary cancers

Metals: Arsenic compounds found in drinking water, mining and copper smelting, wood preservatives, insecticides and
pesticides associated with kidney, skin, lung, and bladder cancers.
Beryllium used in glass, plastics, dental applications, recycling of high tech equipment such as computers and
cell phones, small amounts in food, water and tobacco, is associated with lung cancer.
Cadmium used in industry, fungicides, metal coatings, batteries, found in tobacco, and is associated with lung cancer.
Chromium used in paper, cement, floor covering products, stainless steel production, welding and widely
distributed in air, water, and soil. associated with lung cancer.
Nickel used in industry, steel, dental fillings, storage batteries, is associated with nasal, lung and larynx cancers.
Lead Acetate used in cotton dyes, metal coatings, some hair dyes, associated with kidney and brain tumors.

Diesel Exhaust particles - associated with lung cancer.

Toxins produced by Fungi - aflatoxins in grains and peanuts. Agricultural workers are the ones primarily exposed to
these toxins and they are associated with liver cancer.

Vinyl Chloride: found in wrapping film, electrical insulation, drain pipes, hosing, flooring, and windows. Mainly industrial
exposure. Associated with lung cancer and blood vessel tumors in the liver and brain.

Benzidine: found in textile, paper, and leather dyes. Associated with bladder cancer.

I hope this is helpful,

Sincerely, Margaret Brooks (Brooks Environmental Consulting LLC)


Dear Margaret,

This is wonderful and informative. What advice would you give private individuals to test for and diminish toxin exposure in their own lives/environment?

Rich

Thank you Dr. Frank.

The things which are most commonly found in homes that we test for are:

mold
asbestos
lead
radon in air
water pollution of different kinds (radon, lead, bacteria such as ecoli, mercury, arsenic,
pesticides)

Many people in this area have wells which should be tested every year or two.

In addition to the items listed above, if you are selling your house, the buyer (and the bank) will want to know of any pollution problems such as a leaking underground oil tank, or whether any toxic dumping has occurred on the property.

People should also be aware that cleaning compounds used in the home can include toxic ingredients, and they should make every effort to use "environmentally friendly" brands.

A beautiful green lawn can be a sign of pesticide and herbicide use - so people should think about what the runoff (when it rains) will do to their drinking water before they use these products.

Let me know if there is anything that you would like more specific information on.

Sincerely,

Margaret Brooks

Dear Dr Frank,
I am wondering if you have any experience with or recommendations bile duct or gall bladder cancer?
My 76-year old mother is Stage IV (mets in numerous bones, but no other tumors). This "incurable" cancer is also rated as "untreatable" because it is so rare that there have been no completed studies on drugs, etc, except just last year for one using a pancreatic chemo (gemcitabine) and cisplatin, and because it is usually found when it is unresectable or worse.
Are any there targeted chemos suitable for advanced cancers?
Also, what is your experience with the integrative/alternative area of treatments? Can you recommend any clinics for direct or adjuvant treatments?
If this were your mother, where would you take her for treatment??? I am the family researcher, trying to leave no stone unturned.
Thank you so much for writing on this very important and misunderstood and evolving and overwhelming subject,
jackie

one of my relatives, 63 years old lady had thigh bone cancer and has been operated. The biopsy / PET scan showed primary cancer of kidneys. The oncologist doesn't prefer any furthet treatment / experiment. He says" wait and watch". What is your comment.
Yours sincerely,
R.Ganeshan

Dear Jackie,

Thank you for your question regarding the treatment of metastatic gallbladder and biliary tract cancers. You are right that there have not been many advances nor major clinical trials in this area, in part because they are not the more common cancers. But, you did indicate a recent study from Europe that showed that combining the chemotherapy drugs gemzar and cisplatin results in improved survivals compared with gemzar alone. So, this would be the first-line regimen.

What to do when this treatment stops working? There is no clear path. This is one of the reasons I included a vignette in my book on page 39 (Understanding Incurable Cancer: Every Patient is Unique) about a patient I continue to care for who was diagnosed with stage IV gallbladder cancer 7 years ago! You can learn alot from this vignette, about all the different chemotherapy and targeted therapies that I have tried with him and ask your mother's oncologist about them.

I wish you and your mother the best.

Rich Frank

@R.Ganeshan

Mr. Ganeshan,did your relative have a history of kidney cancer that was removed? If so, how long ago? Was a bone scan performed to make certain there are no other bones affected by the cancer?

Kidney cancer may return even decades after the original cancer has been removed, so the situation you describe is not uncommon. Please provide more details if possible so that I can comment on the role of radiation or anticancer drug therapies in this situation; observation may certainly be appropriate as well depending on the details. Thank you for writing.

Rich Frank

Dear Dr. Frank,
Thank you for elaborating this clearly. I really want to know about some other cures for cancer but I am afraid to trust them. My friend has undergone different types of Chemotherapy already. I have read about someone who has made his cancer worst because of believing on other treatments through the internet. I will never do such a thing. I think your alternative and complementary treatments make sense though. They are simple but very helpful. I think I should tell this to my friend. Thank again Dr. Frank. I really love your blog! I get a lot of helpful stiff from it.

Dear Dr. Frank,
My mom was just diagnosed yesterday with Plasma Cell Myeloma. Could you give any website links on the disease, treatments and any other info that could be beneficial to my family? She's only 58, has 5 grandkids, and wants to do so much yet. We need some positive info to this nasty disease.

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