Sonny (not real name) is a 59-year-old male. He was diagnosed with Hepatitis B about five years. He opted for herbal treatment from Taiwan. After six months, his alpha-fetoprotein increased further indicating it was not effective. Nevertheless he continued to take the Taiwanese herbs up to this day. About three years ago he went to see a doctor and was prescribed Lamivudine and ever since he has been taking both Lamivudine and the Taiwanese herbs.
In September 2011 Sonny had bloated stomach and lost his strength. An ultrasound of his abdomen indicated liver cancer. On 30 July 2011, his alkaline phosphatase was at 224, AST = 79 and GGT = 354 (all these values are beyond normal range). He was told by the doctor that he had an incurable, terminal stage liver cancer. He probably has two months to live or at most six to eight months. Before he dies he would vomit blood.
Sonny went to Singapore for a second opinion. A CT scan on 4 October 2011 showed a 14 x 12 x 12 cm tumour in the caudate lobe. There was also a 3.8 x 3.4 x 2.4 cm nodule in Segment 2 of his liver. There was tumour thromhus demonstated in the right portal branch and the main portal view. Thrombus was also seen in the proximal left portal branch. In addition he had liver cirrhosis with mild splenomegaly and moderate ascites.
Blood test on 4 October 2011 showed elevated alkaline phosphate = 315, AST = 164, ALT = 73 and GGT = 614.
His tumour markers, however, were within normal range – AFP 14.7, CEA 0.8 and CA 19.9 27.2.
There was nothing the doctor in Singapore could do for him. He was offered oral chemo drug, Nexavar which cost S$10,000 per month. He was told this would not cure him but could prolong his life for two months. However, the Malaysian doctor who first saw him did not recommend Nexavar because of its severe side effects.
Sonny then went to the University hospital in Singapore for another opinion. There was nothing more that could be done. Since the University is currently carrying out a clinical trial on Nexavar, Sonny was offered to take this drug for free. He said no thanks to this offer of free Nevaxar – listen to what he has got to say in the video below.
Daughter: My father was diagnosed with liver cancer in August 2011.
The doctor wanted him to do chemotherapy. We did not allow him to do so. I argued with the doctor.
The doctor did not get angry with you? Yes, he was but I did not bother. Since we did not want to go for chemo (injection) he was asked to take an oral drug for his liver. This cost RM 20,000 per month.
Wait, wait. Let’s start from the very beginning. Actually what happened and when? D: My father had winds in his stomach. This was in August 2011. He consulted a doctor who told him that he had a gallstone. His liver had some shadows. The doctor then suggested that my father do a CT scan. He went to do a CT scan and the result showed a Stage 2 liver cancer. The doctor suggested chemotherapy. We told the doctor we wanted to go home first and consult with all the members of the family. After that we went to seek a second opinion from a liver specialist.
The Second Opinion – the Liver Specialist
D: The liver specialist studied the CT scan. He also suggested chemotherapy. This time I accompanied my father to consult with this specialist because I did not want him to undergo the chemotherapy. I told the doctor, “We do not want chemotherapy.” When the doctor saw my father, he encouraged him to get admitted into the hospital. He said, “Uncle get admitted immediately and tomorrow we shall start with the chemo.”
I was not happy. The first doctor we consulted with told us that my father had to stop all his heart medications before undergoing chemotherapy. My father had a heart by-pass before. But this liver specialist did not even consider this. He was pushing my father to do chemo quickly. But I refused.
Okay, you refused chemo. What did the doctor say? D: I argued with him. Then I requested that he do another CT scan for my father. So, a second scan was done.
Did you ask the live specialist if chemo can cure your father of his liver cancer? D: Cannot. I asked him, “Doctor, you want to give chemo to my father – can you cure him?” The doctor could not give me an answer. He just kept quiet – no answer. Then he said. “It all depends on the patient himself.”
What ? It now depends on the patient? D: I asked the doctor further – “ You give my father the chemo, what can happen to him after that?” He answered, “The liver may become hard, the patient becomes yellow (jaundice). And his eyes may become yellow.” I countered the doctor, “Okay doctor, my father currently has no pains, can eat, can sleep, can walk and move his bowels – after the chemo, his health is jeopardised and he may not be able to do all these – what’s the whole idea?
What did he say to that? D: The liver specialist said, “I have found the best oncologist to do the chemo for your father, do you know that? I have already made the necessary arrangements for your father to do the chemo tomorrow. Now you tell me you don’t want to do it.” But I said, “In the first place, we never ever agreed to undergo chemo.”
But he told you, There is no cure and the patient becomes yellow – why do the chemo then? D: I eventually told the doctor very bluntly, “My father doesn’t want to do chemo.” My mother also said, “The patient refused chemotherapy.”
How did he respond to that? D: Okay, if the patient did not want chemo, there is nothing we can do.
Did you ask him how much the chemo is going to cost you? D: No, we never get into that. He did not tell us about the cost and also how many cycles of chemo he was going to give.
Assistant to the Liver Specialist: Patients come in healthy, they go out yellow! Why not try the RM 20,000-per-month oral drug for liver cancer?
D: The second CT scan report was ready after two weeks. I requested to have a copy of the report so that I can bring it to you (CA Care). I went to the hospital and met the assistant of the liver specialist. He is also a medical doctor – a nice person. I asked him, “From your experience giving chemo to so many patients, how many really do well? This nice and friendly doctor answered, “To tell you the truth, patients come in looking healthy, but they go out looking yellow after the chemo.” This is what the assistant told me. Then the assistant said, “If you don’t want to do chemo, why don’t you take the oral drug instead. “ This drug cost RM 20,000 per month. But I told the doctor, “But doc., this drug has so many severe side effects” (Read this post: Benefit and side effects of Nexavar).
My Friend’s Husband Took the Oral Drug for Liver Cancer, He Vomited Blood and Died Within Two Weeks
D: The doctor replied, “ No, no serious side effects – you only feel itchy and have reddish palms.” I told the doctor, “My friend ‘s husband had liver cancer. He took the oral drug that cost RM 200,000 per month. He vomited blood and within two weeks was dead.” The doctor went silent. He kept his cool and smiled. The he asked, “If you don’t want to do chemo for your father, what do you want to do then?” I replied, “I am going to bring my father to take herbs.”
What was his response? D: He said, “Go ahead and try it.”
He did not get angry with you? D: No, he was not angry.
Did you know what is the name of that oral drug? Nexavar? D: I did not take note of that. I only know that it can damage the liver and kidney. I read this on the packaging of the medication.
They Just Want You To Do Chemo – That is the way it is
D: Unfortunately, that is the way it is with doctors today. They just want patients to do chemo. After injecting the chemo into you, the poison is already in the body – if you die, you die. That is your business.
Wife: The doctor told us, my husband is still strong. He will be able to withstand the chemo – he can withstand the chemo. D: No, no, I think he will die.
This is the way our world is now. You need to take care of yourself. You have to be responsible for your own health and wellbeing. If not, it may be like “just jumping into the sea.”
Mutu (not real name,H520) is a 48-year-old male. In November 2010 he had coughs with some phlegm. In late December 2010 he was admitted into a private hospital with complaints of right hypochondrial pain (i.e., pain under the rib-cage margin). He was nauseated but no vomiting. He also had post prandial dyspepsia (i.e., a medical term meaning feeling of unusual fullness, nausea, loss of appetite or belching following a meal).
CT scan of the abdomen showed multiple masses measuring 7.3 x 5.1 cm, 6.3 x 6.1 cm and 7.3 x 4.5 cm, in the right lobe of his liver, suggestive of diffuse hepatocellular carcinoma or liver metastases. A biopsy was performed on 23 December 2010 and confirmed moderately differentiated infiltrating liver cancer.
A blood test results, done on 19 January 2011, are as follows:
Mutu was prescribed Nexavar – an oral chemo-drug that cost about RM20,000 per month. He was told that Nexavar would not cure his cancer. It would only control it (whatever that means, see discussion later).
After taking Nexavar for a week, he suffered the following side effects:
Bloatedness
Shoulder muscle pain
Sleeping difficulty
Nausea and sometimes vomiting
Dizzy when walking
Loss of appetite due to bloatedness
Cramps of fingers and toes
Constipation
Listen to our conversation on 23 January 2011, the day he first visited us.
Comments
Let me highlight some of the important points of this case in a question-and-answer format.
Assuming for a moment that you are a medical expert. I believe you have seen hundreds or thousands of CT scans and blood test results. From your experience, what can you make out of this case by just looking at the scans and blood test results? The images are bad and the AFP (alpha-fetoprotein) exceeded a million points. Honestly, is a biopsy really necessary? So, after a biopsy, what can you offer to “cure” the patient?
It appears that all that modern medicine can offer is Nexavar. Would you as an expert offer this drug to the patient knowing that it cost about RM 20,000 per month and it does not cure? I guess you would if the patient is rich enough to pay for it or if his insurance covers the cost. This is a win-win situation you may say. After all this is what buying a health insurance is for! But hang on. In this case what if Mutu’s total medical cover is limited, assuming it is RM 100,000? That means the insurance pays for only five months’ supply of Nexavar. What happens after that? And within 8 to 11 months patient dies (see point 4 below)?
As an expert, would you admit to your patient that Nexavar cannot cure his cancer? Yes, you did in this case. That is honorable of you. Obviously not many patients are going to pay that kind of money if there is no cure. You justified by saying that Nexavar can control it. That sounds good, convincing and heroic isn’t it? Especially if the patient is desperate and helpless. Such patients need that “last straw”. But what do you really mean by control?
Have you gone into the website of the drug company that sells Nexavar? If you do, you may find this very impressive table with equally impressive so-called “scientific” data.
In a study of 602 people … Nexavar helped slow cancer growth and helped extend the lives of patients compared with patients who did not receive Nexavar.
For the benefit of those who are not used to reading and interpreting research data, let me explain a bit more. From the diagram above, we know that there were 299 patients taking Nexavar (n= 299) and the median overall survival is 10.7 months. Compare this to 303 patients who did not take Nexavar (group called Placebo, n = 303) which had a median overall survival of 7.9 months.
The glaring facts of this study showed that:
By taking Nexavar patients lived longer by 2.8 months. Take note that they were not cured at all. Eventually patients died. The median survival ranged from about 8 to 11 months, irrespective of whether they take Nexavar or not.
So based on the above experimental data, ask this question. Would you spend RM 20,000 per month and for every month, to live 3 months longer? Again, take note that the price of Nexavar varies – depending on where you buy it and whether you pay cash or pay through insurance claim. Obviously the price is higher when your insurance pays for it.
Of course, if this point is crudely presented like I did above, extending life by 2.8 months is not impressive at all! The educated people deviced a better way of saying things in a nicer, attractive but deceptive way. Another way of saying is: Nexavar extended overall survival by 44%. Increasing survival by 44% is very impressive indeed.
Mark Twain (of the USA) made famous this phrase: “There are three kinds of lies: lies, damned lies and statistics.” This phrase is now used to describe “ the use of statistics to bolster weak arguments, and the tendency of people to disparage statistics that do not support their positions”. In simple language, the statisticians (the experts of numbers) “massage” the data to make what seems ugly to look pretty. Take note also this “manipulation or massage” of data is not wrong – it is academically legitimate!
So take it from me that “Extending life by 2.8 months” or “Extending overall survival by 44%” are both right and academically acceptable. Unfortunately I still cannot figure out how they come up with the 44 percentage figure. I need a bit more time to learn this “art of stretching the truth with numbers.”
With a simple mind like common folks, I would have just do this: I would take 10.7 minus 7.9 = 2.8. Then I would divide 2.8 by 7.9 and multiple by 100 to convert it into a percentage. If I did this, I ended up with only 35%. To avoid having to explain “the confusing concept of statistics” let us give the benefit of the doubt to the experts and the drug manufacturer and accept what they say: Nexavar extended overall survival by 44%.
But folks let’s concentrate on what matters most. You can choose between these two “options” below. But know that both mean the same thing!
As a patient if you are told that Nexavar can extend survival by 44%, what would be your reaction?
On the other hand, if you are told that Nexavar can extend your life by only 2.8 months, what would be your reaction?
Having got over this, what if you are clearly told that the extension of survival by 2.8 months is no free lunch. Apart from having to pay RM 20,000 per month, there are a variety of side effects you may have to endure. In this case, Mutu suffered eight side effects after consuming Nexavar for a week.
But don’t fault the drug company. You have been forewarned. Patients taking Nexavar may suffer the following side effects (according to the company’s website):
Decreased blood flow to the heart and heart attack.
Bleeding problems. Nexavar may increase your chance of bleeding.
High blood pressure.
A skin problem called hand-foot skin reaction. This causes redness, pain, swelling, or blisters on the palms of your hands or soles of your feet.
Perforation of the bowel.
Possible wound healing problems. You may need to have a surgical or dental procedure.
Birth defects or death of an unborn baby.
Rash, redness, itching, or peeling of your skin
Hair thinning or patchy hair loss
Diarrhea
Nausea or vomiting
Mouth sores
Weakness
Loss of appetite
Numbness, tingling, or pain in your hands and feet
Abdominal pain
Fatigue
Weight loss
Those medically trained may find the following list of side effects more exacting:
Rare: QT prolongation. Not known (cannot be estimated from the data available): angioedema, drug induced hepatitis, radiation recall dermatitis.
Date of Revision of the Text: November 2010
5. Solutions?
The lady was indeed sharp. She asked me: “Then, that are the solutions?” I must admit I cannot guarantee any cure. We know that in cancer there is no such thing as a cure (meaning, real cure, not just surviving 5 years). In the case of advanced liver cancer, we all know that survival is only in terms of months. So, we are faced with a difficult case. This is the first time that a patient came in with his alpha-fetoprotein reading well over a million. The highest we have ever seen in 14 years is about half that value.
We have two suggestions for Mutu.
a) Take care of your diet. He was given a list of food that he can and cannot eat. Unfortunately this list is way off the mark compared to our recommendation.
b) Take herbs and hope for the best. If a patient has no pain, can eat and sleep – these are about all we can hope for. How long to live is not ours to decide.
It is up to Mutu to decide if he wants to continue taking the Nexavar and reap whatever benefits (and also side effects) that are associated with it. But ask this: Is it worth it?
Some of you may say: Ah, you snake oil peddler – you and your herbs and dietary fad – these are just quackery. They are not proven and not scientific. Hang on, before you cast the first stone, take time to read the following ten stories. Tell us where we go wrong if you think that we are wrong!
