Ray (M578) is a restaurant owner inIndonesia. In December 2007, at the age of 53, he was diagnosed with kidney cancer. He underwent a radical nephrectomy in a hospital in Melaka. It was a grade 2 RCC (renal cell carcinoma) which had invaded the renal capsule.

After the surgery, Ray was well and life was back to normal again.

 

 

Chris: After the operation, no chemo, no nothing? Did the doctor ever ask you to take care of your diet?

Ray: The doctor told me: Eat whatever you like!

About seven years later, August 2007, Ray developed a cough. A CT scan on 17 August 2007 showed 3 lung nodules of size 1 cm to 2.5 cm. One nodule each in left upper lobe and one in anterior segment right lower lobe.

Ray consulted 4 oncologists who differed in their opinions and offered different treatment options.

Onclogist 1: An oncologist in Melaka asked Ray to take Nexavar (sorafenib). This was a new oral drug. Ray declined the medication.

Onclogist 2: Ray’s wife asked Ray to see an oncologist in Subang where a PET/CT scan was done. This oncologist recommended radiotherapy and Ray was subsequently referred to a radiologist who was hesitant to do the treatment mainly because one of the nodules was situated near Ray’s heart.

Onclogist 3: Ray’s friend from London called and suggested that Ray consulted with an oncologist in Kuala Lumpur. This oncologist did not agree that Ray undergo radiotherapy. He suggested that Ray take an oral drug, Sutent (sunitinib). So Ray was started on Sutent in late August 2007 at a dose of 50 mg daily for 4 weeks (to be recycled every 6 weeks).

Within days after taking Sutent, Ray developed severe side effects which he found intolerable. He had diarrhea, his skin turned yellow, his face swelled, he had painful ulceration of his mouth and throat, blunting of taste sensation, hypertension and worse of all severe hand-foot syndrome. His skin peeled off and he could not walk due to severe pains.

Oncologist 4: Not happy with his Sutent treatment, Ray went to see an oncologist in Singapore. This oncologist was surprised to see Ray all yellow. He told Ray that he disagreed with him taking Sutent and then said: In the first instance, I want to be sure that the nodule is cancer. A biopsy was performed which confirmed that it was indeed a lung metastasis. Ray did another PET/CT scan. The results were amazing. The 3 nodules in the lungs had shrunk in size. This Singapore oncologist was lost for words and was not sure what to do next.

Ray decided to go back to Oncologist 3 in Kuala Lumpur for further management. Oncologist 3 told him: You suffered 7 side effects only. According to the drug company’s information, there are 21 side effects. And you “belum apa-apa” (implying that you are not dead yet!). So it is okay. Ray was asked to continue taking Sutent but at a reduced dosage – 37.5 mg or 3 tablets her day instead of 50 mg or 4 tablets per day). However, even at a reduced dosage Ray still suffered and subsequently Ray took only 2 tablets (25 mg) per day. By January 2008, Ray totally stopped taking Sutent because of the intolerable side effects. Even after stopping Sutent, the problems persisted so much so that Ray was unable to stand up and walk. Ray told the oncologist: I am stopping Sutent, I might die because of the drug and not because of the cancer.

A PET/Scan was performed in June 2008. The tumours had since grown back to their original sizes. The oncologist suggested a new oral drug, Afinitor (everolimus) which has yet to be approved for use by the Malaysian Government. This drug cost RM 1,000 per tablet, meaning a month’s supply costs RM30,000 (as opposed to Sutent which costs RM 18,000 per month).

Ray suffered similar side effects from taking Afinitor – ulcerations of his mouth and itchiness of his head, etc.

Realizing that his father was not going anywhere with these doctors, Ray’s son surfed the net and found CA Care. Ray decided not to take any more of his doctor’s medication and came to seek our help on 29 May 2009.

Comments

There are some lessons we can learn from this story.

1. Medicine is supposed to be scientific and based on solid proof. In this case, where is the proof? Ray consulted 4 oncologists and each gave their own expert opinions. Dr. Robert Weinberg had rightly said: At present, the choice of drugs to be used … is inspired by … intuition or poorly informed guesses. Note again what he said –  based on poorly informed guesses. Perhaps Voltaire was not far wrong when he said: Doctors are men who prescribe medicines of which they know little,   to cure diseases of which they know less, in human beings of whom they know nothing.

Oncologist 1 was for Nexavar. Nexavar, which also costs about RM 20,000 per month, is not shown to cure metastatic kidney cancer. Data showed that Nexevar only increased survival by 83 days (With Nexavar median survival = 167 days, Placebo, median survival = 84 days).

Oncologist 2 suggested radiotherapy for reason only known to himself. Radiotherapy is not shown to cure metastatic cancer. The radiologist was right being skeptic about this recommendation. Radiotherapy could damage the heart.

Oncologist 3 was trying new drugs on Ray. The approval of Sutent by the FDA – USA, was on the basis that Sutent shrank tumors in 26% to 37% of patients. Studies have not yet shown that Sutent improves survival, let alone cure cancer.

When Sutent failed, Oncologist 3 suggested a switch to another drug– everolimus (commercial name Afinitor). This drug was approved for use by the FDA on 30 March 2009. It has not been shown to cure any kidney cancer or even prolong survival. It was said to prolong progression-free survival by about 3 months (PFS survival with everolimus – 4.9 months versus 1.9 months with placebo). PFS means the length of time during and after treatment in which patient is living with a disease that does not get worse.

Oncologist 4 took a different route. He thought he had to make sure that the nodules in the lungs were indeed cancerous. It was indeed a thoughtful act or was it due to some other reason best known to himself? Anyway, he was dumbfounded when he found out the Sutent did indeed shrunk the tumours. It should not be any surprise since medical literature said similar thing, except one ought to ask if shrinkage of tumour has any meaning or significance at all.

Patients ought to be informed or know that the use of such drug like Sutent (which is referred to as inhibitor of tumour angionenesis, anti-angiogenic or VEGF-targeted therapy drug) did shrink tumours in clinical studies. These drugs often prolong survival of cancer patients by only months, without offering enduring cure.  But one most important concern is that in studies with mice, these VEGF-targeted drugs initially inhibited primary tumour growth, but later the tumours showed an unexpected surge in growth and became more invasive and spread widely to other parts of the body.

2. Ray suffered relapse after 7 years after an apparent cure. Most patients are often misled or lulled into a false security or belief that after treatment they are cured. Far from it. This case proved that surgery does not cure cancer. Period.

Over the years, I have seen many case of relapse after surgery. Let me give some examples. These cases involved patients with right kidney cancer. They had undergone surgery to remove the diseased kidney and did not undergo any other follow up treatment since they were deemed cured.

Patient 1 is a 40-year-old female. Surgery done in March 1996. After 5 years, December 2001,  5 lesions her found in her liver. The largest being 4 cm.

Patient 2 is a 30-year-old male. He had surgery in January 2003. Barely 2 years later, December 2004, the cancer spread to his liver. There were 11mm lesion in Segment 8 of his liver and a 8.7 x 7.8 x 12 cm mass in the left para-aortic region.

Patient 3 is a 53-year-old male. He had surgery in December 2000. About 7 years later, in Agusut 2007, there were three lesions in his lungs.

Patient 4 is a 53-year-old male. He had surgery in March 1997. The tumour in his kidney was 4 cm in size. As of this writing, June 2009, he is still doing well. There is no metastasis.

Study these cases again carefully. Patients 1 to 3 all suffered metastasis after their surgery. Patient 4 did not suffer any metastasis. Do you want to know why? From November 1997 immediately after his surgery he was on herbs and has changed his lifestyle and diet. For his story, click on this link: http://cacare.com/index.php?option=com_easyfaq&task=view&id=248&Itemid=39

They say herbal and dietary therapies are not proven! Is the above not proof enough? The proof is in the healing! The above data also proved that medical treatment for renal cancer is on shaky ground indeed.

3. Medical literature reports effectiveness of Sutent and other drugs, in terms of tumour shrinkage, median survival, progression-free survival, etc. All these are evasive tactics to distract the real issue. What patients want is a cure, after paying for the drugs through their noses. Tumour shrinkage and all these confusing terminologies are meaningless to patients.

Note:

1. To view video on side effects of Sutent: http://cacare.com/index.php?option=com_easyfaq&task=view&id=270&Itemid=39
2. To view video on the side effects of Afinitor: http://cacare.com/index.php?option=com_easyfaq&task=view&id=271&Itemid=39