San is a 65-year old male from Indonesia. He sent us this e-mail on 8 August 2007.
I was first diagnosed with stage 3B lung cancer on August 1, 2005. The cancer was found in my left lung. At that time my left lung was two-third filled with fluid. The doctor tapped out the fluid from my lung and this was followed by chemotherapy. Doctor said chemo had to be done immediately otherwise the cancer would spread further.
I agreed and underwent chemotherapy immediately. The treatment consisted of six cycles of Gemzar and carboplatin. After the treatment, the cancer almost disappeared and the CEA dropped to normal value. The fluid in the lung dried up. After this round of chemo I was asked to continue with a drug called Tarceva. But the drug was not effective.
The doctor tried another round of chemotherapy on me. After the second round of chemo the doctor suggested surgery. After thinking for sometime, I and my family agreed to have an operation. This was done in April 2006. During the operation, almost one half of my left lung was removed. After the operation the doctor gave me another round of chemotherapy. This consisted of four cycles. He told me that this chemo was to clean up all the left over cell.
After the operation, I was cancer-free for eight months. By March 2007, while on a routine check up, the doctor found that the cancer had come back. There was fluid in the lung again. In addition, I was told that the cancer had spread to my back bone and brain.
When the doctor found that the cancer had recurred, he immediately suggested that I go for radiotherapy for my brain. This was followed by chemotherapy again (my fourth round). The first cycle of chemo did not appear to be effective anymore. The CEA was elevated. The doctor changed to another drug. The “new drug” was able to hold/control the cancer the way it was (it did not shrink the tumor but my CEA was stable). During chemotherapy my body felt pain and weak. I preferred to stay in bed and had no mood to do anything. I also experienced skin irritation.
After the chemo, my conditions had deteriorated.
• My both feet can not feel the floor anymore. The doctor said this was due to the effects of the chemo drug.
• I lost all of my hair.
• My hands feel numb.
• I have no appetite and no strength.
• I cannot walk straight. I feel out of balance.
• I feel pain in my left chest, my neck, and back bone. Sometimes I have to stay in bed the whole day because of the pain.
• I cannot sleep well. Probably I can only sleep 3 to 4 hours (maximum). Sometimes to force myself I take sleeping pills but it only works for approximately 4-5 hours (maximum).
• My bowel movements are uncertain. Sometimes I experienced diarrhea but there were times I was constipated.
• My appetite is not good at all but I forced myself to eat in order to regain strength. I always force myself to eat even though sometimes I cannot taste the food because my tongue is numb and has no taste.
• There are redness and small swellings at the side of my nails.
• I cough during the day and night. It is a continuous cough but sometime it stops by itself and then comes back again. Most of the time, it has yellow colored-phlegm.
• Most of the time I feel breathless. When I walk too far I feel I am running out of breath. When I walk up the stairs I need to rest several times after every 4 to 5 steps. Lately, there was one time that I felt a pinch pressure at my chest and I had difficulty breathing. This happened at night and I don’t know when it will come again.
Before the medical treatments I was a very active man and was able to do anything. I feel that the cancer is taking everything from my life.
Please advise how I can treat my cancer. I am taking “the oil from red fruit” but it does not seem to help. So I plan to stop it. My doctor only gave me vitamin B12 to counter the effects of my chemotherapy. Besides that I didn’t take any other supplement.
I’m now desperately seeking your help.
Comments: This is a sad sorry. It is also an often repeated story that we encountered most of the time. It reflects the state-of-the-art of medical treatment for lung cancer today. Patients and their family members can learn some lessons from this tragic story.
1. When someone is down with cancer, the initial reaction is panic. This is further compounded when the doctor said that chemotherapy must be done immediately otherwise the cancer is going to spread further. Gullible patients buy such veiled professional warning easily. Is this reasoning right? We always tell patients and their family members to keep their cool after their diagnosis. The cancer had already spread long before it had been diagnosed. Cancer cells were already in the body but remained undetected. Therefore, it is not entirely true to say that chemotherapy has to be done immediately to stop the spread. The cancer had already spread! It is wise to take time to evaluate your options. Why the rush? We believe any decision made is haste or under duress is never a good decision. There is a Arab saying: Haste is from the Devil.
2. After the chemo was done, the CEA dropped. Indeed the doctor is happy and the patients are happy. The magic bullet has done its job, so they say or that is what they want you to believe. But are patients ever told that this so called drop in CEA is not going to last?
3. As an insurance patients are often prescribed drugs. In this case, San was asked to take Tarceva. Not long ago, lung cancer patients were asked to take Iressa, but this drug had already been withdrawn (in the Western world but not in Asia!) because it had cause severe and sometimes fatal side effects besides being shown to be ineffective. Tarceva is just another sibling of the same drug family. It is not surprising at all that Tarceva, in spite of its high cost, was not effective. Medical literature showed that Tarceva only prolonged life by merely two months. It was never shown to cure lung cancer.
4. When the treatment is not effective, often the next course of action is to give more of the same thing! San was given more chemotherapy and this time more toxic drugs were used. Besides chemo, more fire power were called in — radiation and the knife. These methods are what they callslashing, burning and poisoning in the belief and hope that all cancer cells in the body can be eliminated. Perhaps the world needs to be reminded of what Einstein said: doing the same thing over and over again and expecting different results is insanity.
5. We have learnt early after establishing CA Care that removing a part of the lung is never a way to cure lung cancer. Our patient Number Two (of the thousands we have seen) had a lobe of his lungs resected. He suffered badly and eventually died. San had half of his left lung removed but the cancer spread to his brain and bones. The knife is not shown to have cured advanced stage cancer.
6. San wrote that he was cancer-free for eight months. I would dispute that. When the tumor is removed, no one is able to see the cancer anymore – therefore, the period-that-you-do-not-see-the-cancer is mistakenly perceived as cure. We also learnt that surgery is only to buy time — to remove the rotten tissue. It may not necessary remove all cancer cells from the body.
7. The thing that matters is: do patients recover and are truly cured? Evidence such as reduced CEA and shrinkage of the tumour do not mean anything much at all. These are good selling pointsto provide false hope but patients should know that these so called good signs don’t last. It is all an elusion.
8. In San’s case, the cancer recurred and spread to his brain and bones. The battle is about to be lost but the General thinks there is still a fighting chance that the war can be won. Give more fire power! This time, the embattled cancer cells fight back. This time the cancer cells have already become numbed and resistant to the drugs. And they strike back with vengeance.
9. At last, the doctor saw reality. Short of declaring the war lost, he prescribed vitamin pills. The patient, in this case, was left hanging high and dry often worse off than he first started — physically and financially drained to the core. They are lucky if the State Social security or Health Insurance pays for the costs. Unfortunately in this part of the world, the patients and their family members need to resort to their entire life’s saving or selling their property, etc., to settle the hospital bills.
10. Dr. Lai Gi-ming, Taiwan Cooperative Oncology Group, National Research Institute was right when he wrote: The thing that most frustrates modern doctors is that, after surgery, chemotherapy and radiotherapy, all they can do is keep chasing and chasing the cancer! It is only at this stage that patients come to CA Care for help.