Pain Management in Cancer: Avoiding Opioids

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Disclaimer: Sajjad Iqbal, MD is a retired physician and rare cancer survivor who routinely supports, mentors and guides other patients through their perilous cancer journeys. Any opinions, suggestions, or advice provided is solely from Dr. Iqbal’s perspective as a well-informed and knowledgeable cancer patient, not as a physician. The patients must discuss their health with their own doctors and follow their advice. 

During their long & tumultuous journey, cancer patients suffer from a multitude of very difficult and troublesome problems. Pain is perhaps the most common and debilitating one.  The pain can be caused by the cancer itself, as when it erodes the healthy tissues or when it attacks the nerves or nerve endings.  The pain of terminal cancer is regarded as one of the most severe pains known to mankind. Pain is also a very common side effect of virtually all of the cancer treatments, such as chemotherapy, radiation therapy, and the various surgical procedures, leading to devastating physical and emotional impact on the patient. 

Despite that, the medical community has historically done quite a poor job of managing the chronic pain and alleviating the suffering of the cancer patients. In the 1990s a renewed focus on pain management emerged and the pain assessment became one of the vital signs that the health professionals need to record for every patient. Unfortunately, while this did do some good to better manage the patients’ pain and suffering, it also led to the epidemic of opiate addiction. The emergence of the medical specialty of Pain Management (Algology) and overly aggressive and, at times, deceptive marketing by a greedy and unethical faction of the pharmaceutical industry led to an alarming increase in opioids prescriptions and thus the widespread addiction.  The opioids have an important role to play but were never meant to be used for chronic pain.  Opioids work best when given for a very short duration, such as after a tooth extraction or a surgery.  The patient is supposed to get off these medicines after a few short days. The risk of addiction that may be extremely low in the first few days of use, starts to increase exponentially beyond 2 weeks of regular usage. It stands to reason that, unless dealing with a short-term pain, the use of opioid painkillers for cancer patients makes very little sense.  

Some examples of such narcotic painkillers are Vicodin (hydrocodone), Percocet (oxycodone), Dilaudid (hydromorphone), Duragesic (fentanyl). All of these, and many other like these, are opium derivatives. Beyond the risk of addiction and tolerance, there are many other serious side effects, such as substantial physical and mental impairment, nausea, dizziness, and severe constipation that can lead to abdominal pain and rectal bleeding.  Opioids can also slow down breathing which can cause hypoxia (decreased oxygen supply to the brain).  An overdose of these drugs can lead to respiratory depression, coma and quite often, death.  In 2019, 50,000 people in the US died from Opioid overdose. Therefore, it is imperative that the doctors who treat cancer patients must find better pain management strategies with less side effects and without a risk of opioid addiction.   

There are a few strategies that patients can employ on their own to provide pain relief. Number one would be the better use of non-narcotic pain killers. Everyone is familiar with acetaminophen (Tylenol) and ibuprofen (Advil or Motrin). Neither one of those alone can provide adequate pain relief in severe pain associated with cancer, but the recent studies show that we can utilize these two simpler medicines much more effectively.  

These two medicines work very differently and are metabolized very differently in the body. They have very little in common with each other. Yes, eventually they both relieve the pain, but whereas acetaminophen works primarily on the pain receptors in the brain, Ibuprofen works primarily by reducing the inflammation at the site of the pain.  For years, the mothers of small children had been using a staggered schedule of both these medicines for the relief of their children’s pain or fever. There used to be a fear that you should not use both medicines together, however we now know that such fear is not rational.  The recent studies show that the two medicines, Ibuprofen & acetaminophen, are complimentary when used together because they have a different mechanism of action. The pain relief achieved by using Tylenol as well as Advil is greater than either of these medicines used singularly. In this case, 2+2 adds up to 5, rather than 4. You can find this date here.    

We also learned that for a severe & unrelenting pain, one can use a somewhat higher dose of either medicine.  In fact, one study showed that if you use the higher, but still less than the maximum allowed, doses of acetaminophen and Ibuprofen together you can achieve a pain relief that is equal to or better than the opioids. You can find that data here.

At the same time, the safety parameters were far better than the opioids. 

One must remember that this regimen of the higher doses used together is only recommended for the relief of a severe pain that fails to respond to the usual regimen.  Acetaminophen which is metabolized in the liver, should be used with a great degree of caution by any patient with a liver disorder.  An overdose of Acetaminophen (Tylenol) can cause liver failure and even death. 

 On the other hand, Ibuprofen is eliminated from the body by the kidneys and it tends to irritate the stomach.  Therefore, it should be used with caution by the patients with stomach ulcers or chronic kidney disorders. 

But for the average cancer patient suffering from severe & longstanding pain, both these medicines are very safe. The FDA allows 4000 mg as the highest daily dose for acetaminophen. However, some doctors prefer to cap it at 3250 mg in 24 hours.  This means 6-8 tablets of 500 mg extra strength Tylenol during a period of 24 hours. Acetaminophen is also available now in a 650 mg strength, which is marketed, as arthritis strength formula. There really is nothing extra in there for the arthritis relief. It’s just acetaminophen in a higher strength and cancer patients can certainly use that. So, two tablets of 650 milligram each of acetaminophen taken every eight hours will still keep you below the maximum allowed dose. It is worth emphasizing again that one should try the lower dosages first before reaching close to the maximum allowed dose. 

The maximum allowed dose of Ibuprofen is 3200 mg per day. Ibuprofen [Advil] comes in 200 mg tablets. There is also an 800mg prescription strength Motrin, which is the same medicine, Ibuprofen. Doctors often advise their patients with various degrees of pain to use three tablets of ibuprofen, 600mg total, at a time. Cancer patients can definitely use up to a maximum of 800 milligram of Ibuprofen every 8 hours, total 2400 mg in 24 hours, that will keep them well under the maximum allowed daily dose.  

So, if we use both these non-narcotic medicines properly and rationally, we can achieve a lot more effective pain relief without resorting to narcotics.  

In a nutshell, a cancer patient in severe pain who needs opioids can instead take up to a maximum of 2 tablets of 650 mg strength acetaminophen plus 600 to 800mg of Ibuprofen together and can repeat it every 8 hours. Then we’ll still have less than the maximum allowed dose of either one, and the studies show that the pain relief is equal or even better than with the opioids (Cochrane Reviews). I do not recommend that you should immediately go to that top dose as there are several options to try first. Start with lower doses and/or single drug and then go up in the doses if needed. You could take the higher dose of acetaminophen or you could take the higher dose of Ibuprofen, or you can combine them.  The pain may be bad enough at night that you need to take the maximum dosage of both medicines at night, but take the lower dose or just one medicine during the day time. The point is that you can manage your pain without resorting to opioids.  

The second strategy would be to use anti-depressants. The type of anti-depressants which are called SSRI, Selective Serotonin Reuptake Inhibitors, such as Escitalopram (Lexapro), Duloxetine (Cymbalta), and others have a beneficial effect on the chronic pains when used along with painkillers. These medicines work by increasing the level of the chemical serotonin in the brain. Serotonin is a neurotransmitter or hormone that is often referred to as a mood stabilizer or “the happiness hormone”. It protects the brain from harmful stimuli such as the pain signals.  When a patient in pain takes these medicines, the pain may still be there, but the misery factor goes down dramatically and they’re able to tolerate the pain far better than with the pain medicines alone. It is not uncommon for a patient with chronic pain to get off the opioids after the addition of SSRI antidepressants to the pain management regimen.  

 It’s important to remember that these medicines, Lexapro, Cymbalta, etcetera, require at least one week to start working. So, one cannot expect an immediate benefit. Lexapro (Escitalopram) is a simpler medicine and may be preferable for most patients, especially the elderly. The pain-relieving action of these drugs have not quite caught on yet. Generally, doctors treating cancer patients will reserve these medicines for the treatment of depression. I highly recommend that the cancer patients in severe and poorly controlled pain should seek their doctor’s opinion about the use of SSRI anti-depressants combined with the pain medicine. In fact, patients are strongly encouraged to discuss with their doctors all my recommendations prior to implementing them.   

Another useful strategy is to employ the alternative therapies such as meditation, prayers, yoga, other relaxation techniques, acupuncture, therapeutic massage.  

The last option is to ask for a referral to pain medicine specialist. A good and accomplished pain medicine specialist can do many things to assess the origin of pain and then determine how best to block it. There are procedures such as epidural injections, nerve blocks, nerve stimulations and many others. These modalities are especially useful for pain that may be coming from metastasis in the spine.  

 Ultimately, the important takeaway for cancer patients is that there are ways to improve pain outside of narcotics.  Talk to your doctor about some of these ideas and find what works best for your individual scenario as there is no “one size fits all” approach.  It may take a few different combinations of these treatments to find what works best for you, but hopefully these tips help improve your pain.

Voice of America: Dr. Sajjad Iqbal

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Voice of America: Dr. Sajjad Iqbal from Patient Empowerment Network on Vimeo.

Featured on Voice of America’s South Asia, Sajjad Iqbal, recounts how he relentlessly fought and advocated for his health and how he takes what he learned to help other cancer patients.

Transcript:

Speaker 1: 

In 2002, with the diagnosis of an extraordinary form of parotid cancer in Dr. Sajjad Iqbal, doctors announced further bad news that his survival chance for next 2 years was just 30 percent. Such patients cannot even survive for the next 5 years.

Dr. Sajjad Iqbal:    

If nobody survived for 5 years, why is it such a bad thing?  Once upon a time no one could go to the moon. Now, many have gone there. So, I’ll be the first patient who lived for 5 years.

Speaker 1:   

Instead of surrendering to cancer, he expanded his scope of study and started to explore new research on similar cancers, like breast cancer, ductal carcinoma, all cancers of head and neck and prostate cancer. His cancer had HER2+ features. A new medicine was being given to HER2+ breast cancer patients. Doctors did not agree to give that particular medicine to Dr. Sajjad Iqbal as there were no studies showing its usefulness in his type of cancer`. However, he not only convinced doctors with his logical wisdom but persuaded them to conduct new research by pointing out flaws in existing research.

Dr. Sajjad Iqbal:

After seven years, another study was published that included just my type of cancer. They said that 60 percent of patients got better from this medicine.

Speaker 1:     

In 2009, when his cancer recurred in lungs, then he wanted to have Endoscopic thoracic surgery. But doctors would not agree to do it. Finally, he found his desired doctor at Cancer Hospital New Jersey who agreed to do Dr Sajjad’s Endoscopic surgery keeping in mind that he knew more about his disease than others.

Dr. Sajjad Iqbal:  

The cancer has never come back in the lungs. If the cancer stirs even slightly, we make treatment changes immediately. You can say that we have imprisoned the cancer.

Speaker 1:  

There is a saying that hope is essential for fighting cancer. You have to be your own best advocate.

Pat:  

How are you?

Speaker 1: 

When Pat was diagnosed with cancer, she had been working in Dr. Sajjad’s clinic for 20 years. She considers it her good fortune that Dr. Sajjad was with her.

Pat:    

He said to me that I want you to learn about your cancer, read about it yourself, and then we would talk about it. And he was with me at each step. He even went with my husband and me to see the Doctor in Sloan Kettering. And then again guided us as to which doctor is better, who should I see. To check a doctor’s background, skill and qualification, for all that I depend on him.

Speaker 1:  

And when Pat’s husband was diagnosed with Prostate cancer and her daughter also had cancer, Dr Sajjad was there to guide. He directly helps many other cancer patients like Pat, in many different parts of the world, through Patient Empowerment Network. It is a free website where people, suffering from cancer, can get cancer related services and information.

Fauzia Iqbal:

Sajjad sings to her in Punjabi.

Speaker 1:

Dr. Sajjad considers family support important along with treatment.

Fauzia Iqbal:

Sajjad goes for chemotherapy alone and he is never afraid of taking bold steps like if he has to undergo some surgery. If you have such a personality, it becomes easier to deal with, and as far as family is concerned, everyone loves him & takes care of him.

Speaker 1:  

Dr. Sajjad became part of the news when a patient from New Zealand who he had helped, came to see him by travelling 9,000 miles distance. She had been given six months to survive by her doctors. Under the guidance of Dr. Sajjad, now she is cancer free. Dr. Sajjad is living an enriched life with his three children and their children. He continues to fight the battle against his own cancer. He has recorded that story in his book Swimming Upstream. This book gives hope and a different perspective to many who are struggling through difficult times. (Saba Shah Khan, Voice of America, Ridgewood, New Jersey).

Patient Profile: Jeff’s Diagnosis of Parotid Cancer

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On April 27, 2020, I received an email plea for help from Debra after she had read my book. Deb’s husband, Jeff, was struggling with a very malignant form of parotid cancer called Acinic Cell Carcinoma that, despite surgery and radiation, had spread to his chest and spine. Worse yet, there were no clear treatment choices available. Over the next 11 months, Deb & I have maintained an almost constant contact via emails and telephone chats. It has been my honor & privilege to get to know Deb. I am most impressed by her innate intelligence, rock solid determination and steadfast perseverance. Jeff is alive today primarily due to Debra’s tireless efforts to find a solution. 

On my request, Deb has penned this story of Jeff’s illness. I sincerely hope that it will inspire other patients and caregivers to become more empowered. Remember, Knowledge is Your Superpower.  Sajjad Iqbal, M.D.

 My husband, Jeff, was diagnosed with high-grade acinic cell cancer of the parotid gland in February of 2018 at the age of 65. He was a very young, healthy 65, who rarely saw a doctor and needed no regular medications. For 37 years he was a teacher and coach at a small school in Iowa. We have now been married for 47 years, have three children and three grandchildren. Jeff retired early from teaching when he was 61, but continued coaching for several more years. He also did small construction jobs with our son. We spent a lot of time traveling by car throughout the United States. It was a shock to both of us to hear that Jeff had this disease since he seemed to be so healthy. 

Several years before Jeff was diagnosed, he mentioned a small lump behind his ear. During a brief physical he had, he asked his doctor about it and was told to keep an eye on it and, if it got bigger, to see a doctor. In January of 2018, he noticed it was getting bigger so he saw the doctor. He was told he needed to get a biopsy but it was probably just a blocked salivary gland. As soon as I heard that, I figured it was cancer as Jeff’s mother had been diagnosed with salivary gland cancer many years before. Hers was a slow growing adenoid cystic cancer that was treated with surgery only. He had his biopsy done at a local hospital and when they said it was cancer, we had them make him an appointment at Mayo Clinic in Rochester, Minnesota which is only a couple of hours from our home. 

He had further testing done at Mayo which also showed a lesion at the top of his spine. In March of 2018, he had two separate surgeries to remove the tumors. Cancer was also found in 9 of 21 lymph nodes. He came through the surgeries with no problems. Soon after, he received six weeks of radiation on both of those spots. This was much tougher on him than the surgeries. His neck was badly burned, nausea, no appetite, etc. He made it through and slowly got back to feeling normal. At that time, we were told that chemo wouldn’t help him so he never received any. Three months later, a scan showed a nodule on his chest wall. They did a biopsy and found it to be the same type of cancer. He had a cyroablation on that spot.

Two months later, we found out that the cyroablation had not worked, the spot was bigger and there were several spots on bone. He had Foundation One testing done on his tumor and it showed very few mutations. There was only one mutation, RET, that had a possible treatment at that time. There was a clinical trial at Mayo for a targeted drug for that mutation and they were able to get him in. He started on that in February of 2019. He experienced no side effects and the chest wall tumor stayed about the same the entire time he was on the trial. Unfortunately, though, it was not stopping the bone mets. He had radiation three days in a row on a couple of them when they started causing him pain. Because it was not stopping the bone mets, he discontinued the trial. His oncologist told us that he didn’t know of any clinical trials at that time that would help him. The only thing he had to offer was chemo and possibly Keytruda but he was doubtful they would help very much. Needless to say, this left us feeling lost as to what to do next. 

The Mayo oncologist had told us that, in his opinion, clinical trials were the best way to go as you could get the newest treatments and you would be closely monitored. That is what I decided to look for first. Luckily, since Jeff was first diagnosed, I had been doing research on his cancer and possible treatments. There wasn’t a lot as it is a rare cancer. I have no medical background but was determined to figure things out as much as I could and find something that might be able to help. I found three clinical trials that I thought might work for Jeff. These trials did not exist when Jeff was first diagnosed. I sent them to his Mayo oncologist who had told me that he would be willing to look over a clinical trial if I found one. He agreed that the one I was most interested in looked like a good possibility and one of the trial locations was Iowa City which is about 3 hours from us. This is a trial that focuses on the genetic makeup of the cancer instead of the type of cancer. One of the mutations that Jeff has is FANCA and this trial was the first one I found where FANCA was one of the mutations they were looking for. Also, Jeff’s mother, who also had salivary gland cancer, is a carrier of the FANCA gene. There is no known relationship between the FANCA gene and salivary gland cancer but I feel there must be a connection. It is a rare cancer and to have a mother and son have it must be extremely rare. Our children have been tested for this gene and we discovered that our son is also a carrier. 

It was in February of 2020 when we went to Iowa City to try to get Jeff into the trial. We found out that they had changed the requirements for the trial and now you had to have had chemo in order to be accepted. The doctor started Jeff on the oral chemo drug, Xeloda, and told us that if anything grew, he would stop the chemo and try to get him in the trial. Jeff was also having some rib and back pain and that was treated with five days of radiation therapy. Following those treatments, he had some heartburn issues for a couple of weeks after which it slowly resolved.

At first, the chemo wasn’t too bad. Soon though, there were many nasty side effects; peeling palms and bottoms of feet, nausea, no appetite, etc. He did not feel up to doing much and spent a lot of time sitting or lying down. He was on this about five months and decided to stop due to the side effects. He was having some back pain during his chemo and was prescribed a narcotic pain reliever. It helped the pain some, but caused constipation, so he had to take more medication for that. He told the doctors he did not like taking the narcotic drug and wanted to find another alternative. They tried one drug and the first night he took it he ended up fainting and having make a trip to the hospital. Needless to say, we stopped that drug right away! They said he was having nerve pain from his spine but were not able to find the exact source. He ended up having a vertebroplasty on his spine as they thought it might help his pain.

Unfortunately, it didn’t help the pain and he also started having a weird feeling of a tight band around his abdomen. We made a trip back to the Mayo Clinic to see a pain specialist there. He thought Jeff might be helped with a nerve block on either side of his spine. He had this done and, not only did it not help, it made the band feeling we were trying to get rid of feel even tighter! This was very disheartening as we really thought it would help. Iowa City had started him on Gabapentin for his nerve pain and had been slowly increasing the dosage. He was also started on a low dose of Lexapro and, between those two drugs, he started to feel less pain in his back. The “band” feeling is still there, but not as bad as it once was. He was finally able to get into the clinical trial in August of 2020. The drug he is on now is a parp inhibitor that targets the FANCA pathway. He has been on this drug for about seven months now with almost no side effects. The targeted tumor has shrunk quite a bit and the bone mets have stayed the same. Unfortunately, on his last scans, there was a new spot on his liver. He was allowed to stay in the trial as it is working on his targeted tumor and he is scheduled soon for microwave ablation on his liver. 

When one treatment stops working, I always look for a new clinical trial first.

It is hard, however, as so many of the trials are for certain types of cancer. Even though you discover (from the mutations) that a certain drug may help your cancer, you can only be in that trial if you have a certain type of cancer. I hope in the future there are many more trials based on the genetic makeup of the cancer rather than the type of cancer. The other problem is that the majority of trials are held at larger hospitals that are just too far away to go back and forth as often as needed. It would be great if there were a way to have some of the treatments done at a larger hospital in your own state. Also, if you have a rare cancer, it is much harder to find clinical trials. 

I have a library background and have always relied on books and articles to find information about various topics. Now that the internet is available that has been my most important tool at this time. Also, websites like PEN, providing patient’s stories, healthy recipes and classes are very helpful. These types of sites have really helped me feel not so alone and have given me much more hope than I have ever received from any oncologist. It is also over the internet that I connected with Dr. Sajjad Iqbal after reading his book “Swimming Upstream.” He has been very generous with his time and willing to give suggestions and advice as he has a cancer similar to Jeff’s. It has been a great comfort to me to be able to e-mail him to get his opinion on something or ask a question. He has also helped me feel more hopeful than anyone else I have talked to – not only by his words but by his courageous example. 

When Jeff was first diagnosed, he was still coaching track. The entire track team wanted to have a benefit for him and sold t-shirts and wristbands, and had a meal and dodge ball tournament to raise money for him. Jeff is a very popular guy in this rural school district and I know it meant a lot that his team did this for him. We have support from our family and friends and feel that we have people we can call if we need something. The pandemic has kept us from getting together with people as often as we would like but we are looking forward to that in the future. 

We know that there is a good chance that Jeff’s cancer may never be cured. If that is true, I would like the next best thing – for him to live as long as possible, as well as possible with the cancer. We have had three very good years living with it and working around his medical appointments. I will do everything I can to help him have more of those years. 

Jeff has handled this whole situation very well from the beginning. He is a pretty laid-back person who takes things as they come and isn’t much of a worrier. He has kind of set an example for me just by taking things as they come. I feel his job is to fight the cancer and my job is to help him fight the cancer. Our lives are pretty much the same as they were before he was diagnosed – only with a lot more doctor appointments! 

Bright Hope on the Horizon – Part Four

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See the beginning of Sajjad’s story in Part One, Part Two, and Part Three.

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

In February 2014, two groups of scientists in New York City presented the early data of what can only be described as a phenomenal study with phenomenal results.

In a study using sixteen adult leukemia patients, scientists took samples of each patient’s T-cells and samples of his or her cancer cells. Under laboratory conditions, they trained those T-cells to recognize certain specific traits of that patient’s leukemia cell and then attack to kill it—it was like teaching a drug-sniffing dog to find the cache of heroin. These were called “smart T-cells.”

The next step was crucial, dangerous, and amazingly clever.

The researchers cloned millions of these specially trained T-cells and then went back to the patients and gave them very toxic chemicals that destroyed their “dumb” T-cells—those that were still fooled by the cancer’s camouflaging. They then replaced them with the trained smart T-cells. 

Once infused, the trained T-cells set out like an elite commando force equipped with exact GPS coordinates and hunted down and killed the cancer cells.

The success rate of achieving a complete response was an astounding 88 percent!

The incredible success of that small study, and several others since, has sparked an explosion of interest and further studies by various medical centers and pharmaceutical companies worldwide, who are spending billions of dollars in similar research. These investments are sure to be returned many times over, of course. But it can only mean good things for cancer patients. Costs for adoptive T-cell transfer treatments now are prohibitive for individuals—upwards of $500,000 for one patient, which is totally unacceptable. But that will change in the near future.

And there were complications, of course, with ominous results for one patient. 

In one unfortunate patient, a man from New York City with Her2-positive colorectal cancer, doctors infused T-cells trained to seek out and kill Her2-positive cancer cells. The man went into respiratory arrest within fifteen minutes. His health continued to deteriorate over the next few days despite the best efforts of the medical experts. He died after four days when his lungs shut down completely. There was nothing they could do to save the patient.

An autopsy showed that the patient’s normal lung cells had traces of Her2. The “smart” T-cells had been attacking and killing the healthy lung tissues as well as the cancer.

These trained T-cells are like heat-seeking missiles. They will attack and kill as they have been trained to do—and there was no reversing this once they were set loose.

You lose any control over the missile once it is fired.

This unfortunate incident led to a temporary halt of all further experimentation in this area. The focus was shifted to try to find a way to control these smart T-cells after they were infused into the patient’s bloodstream. How do you stop these commandos if they go rogue? How do you destroy a wayward missile? 

A few different strategies have been developed to accomplish that. One of those is the development of what is called a “suicide gene”—and it is truly the stuff of science fiction. Now scientists can tag T-cells with this suicide gene. If they go haywire and start attacking normal cells, doctors can prompt them to destroy themselves, or commit suicide.

The first couple of the CAR-T Cell Therapies, as these are called, have already received an FDA approval and the newer & better ones are sure to follow.

It is nothing short of amazing. Today we are on the cusp of advances that were not even imagined just a few years ago. Now when someone disconsolately calls me for advice and tells me they have been given no more than two years to live, I tell them not to panic or lose hope. I emphasized that two years is an eternity when it comes to medical advances, the way science is exploding in its efforts to cure cancer.

“Take heart,” I tell them. “Every year, new drugs and modalities are being developed. In two or three years, you have no idea what new miracle drug may come out.” I suggest optimism and advise they focus on positive thoughts, avoid negativity and depression, refuse to panic, eat healthily, remain physically active, meditate, enjoy every little pleasure in life, and, as much as possible, avoid stress. Most of all, do not give up hope.

All that will boost your immune system and will go a long way toward beating this dangerous enemy.

Two years—or even a year—given the ways that science is moving ahead, is a terrific pronouncement. This, in no way, is meant to paint an unrealistically rosy picture. Cancer has been and continues to be an extremely deadly disease. Even though the death rate from cancer has gradually and steadily declined since 1990, there are still far too many patients dying from it. In the United States, cancer continues to be the second biggest cause of death, behind heart disease only. Over half a million patients die from cancer each year in the United States alone. More than eight million lives are lost worldwide.

I am fully aware of all that. Yet, there is no doubt that we are entering a much better and far more hopeful era. At no other time in the history of medicine have we been this tantalizingly close to achieving a major victory against cancer, a game-changing victory that could, possibly forever, change the cancer outlook. 

I believe this with all my heart.

Bright Hope on the Horizon – Part Three

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See the beginning of Sajjad’s story in Part One and Part Two

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

We all are familiar with the miracle of modern antibiotics. Most infections, even the serious and life-threatening kind, can usually be cured by the proper use of antibiotics. But antibiotics cannot work without help from the patient’s immune system. 

Every day, literally hundreds of times a day, various bacteria and viruses invade our bodies. Yet, we are not constantly sick. Why? Because our immune system is always on guard, ready to fight and destroy every potential enemy. The invaders are promptly killed and the threat is eliminated without us ever becoming aware of it. 

It is only when the bacteria manage to establish a beachhead that we show signs of illness. Even then, the immune system plays a critical role in helping the antibiotics conquer the infection. Antibiotics simply cannot work if the immune system is diseased and unable to help, as in HIV. That is precisely why in HIV even a minor infection can threaten the patient’s life despite the use of antibiotics. Our immune system is the most powerful, sophisticated, efficient, and elite fighting army one can imagine.

So, why does it not fight the cancer and kill it off? For decades, medical scientists have struggled with precisely this question. Why was the immune system actually ignoring the horrid invasion? Why was it sitting quietly by while the cancer invaded and destroyed one vital organ after another until it killed the patient?

It has been only in the last few years that we have realized what was happening.

Cancer is wily and cunning. That, of course, is not a surprise. But researchers have begun to understand that cancer cells actually make themselves invisible to the immune system. We still do not have a complete understanding as to how, but we have learned a few things. 

This we do know: The immune system fights off various invasions through a system of checkpoints. Say, for example, you have strep throat. When the germs first invade, an alarm is triggered which serves to mobilize the body’s immune forces. They attack the strep germs and kill them off. Soon, the immune forces reach a checkpoint where they must stop to receive fresh orders. If the threat persists, the order will be to continue the attack. On the other hand, if the threat has been eliminated, that information will be conveyed to the immune forces, thereby shutting them down. Obviously, we do not want our army to keep firing after the enemy is dead. It will only cause harm to the civilians. Similarly, our immune system must not go on unchecked in order to prevent damage to the normal and healthy tissues. 

So, our immune response is a pattern of repeated starts and stops regulated by a series of checkpoints. 

Scientists have learned that cancer has the ability to trigger checkpoints or manipulate the checkpoint signals. As soon as the immune forces attack the cancer, it initiates a checkpoint signal to terminate that immune response. Cancer has a way of making the checkpoint say—to continue the analogy—”No problems here. The threat is gone. All clear now.” 

So far, we only know about a couple of different ways this is accomplished. But it is very likely that the wily cancer has many other ways to fool the immune system. Our knowledge is still growing by the day.

Once scientists understood that mechanism, they began to develop medicines that neutralized the false checkpoint signals created by the cancer, thus allowing the immune system to continue to attack and kill the cancer cells. These drugs are called checkpoint blockade therapies.

In clinical trials, these medicines have produced a 66 percent success rate against an extremely deadly cancer, malignant melanoma. This is an astonishing success, and we may even improve upon that success as we learn to use different drug combinations and newer and better drugs are developed. Each day brings the dawn of a new hope.  One of the newer checkpoint blockade drugs, Pembrolizumab (Keytruda) has consistently shown encouraging results in a variety of, hitherto untreatable, cancers. 

Another prong in the battle that has brought jaw-dropping positive results is something called adoptive T-cell transfer. This is the stuff of science fiction. And the exciting results it is producing have turned cancer research on its ears.

Using T-cells to kill cancer will put medicine on the cusp of being able to say we have found a cure for cancer. Adoptive T-cell transfer therapy is the most promising technique we have to finally attain the Holy Grail of cancer medicine—to be able to utter those three magical words to the patient: “You are cured!” 

T-cells are our immune system’s killer cells. Think of them in a way as an elite commando force that can seek out and destroy the enemy. The challenge is this: because of mechanisms we are still trying to fully understand, cancer cells camouflage themselves from T-cells. So, how do you make the T-cells “see” this enemy called cancer? If they can see it, they will attack it and destroy it. 

Bright Hope on the Horizon – Part Two

/in , /by

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

Click Here to Read Part 1

(Dec 2020)

I would like to think—hope in fact—that no future cancer patients will have to fight the way I did to get certain treatments, that doctors today could help them prevent that. Oncologists now universally accept this novel concept that each patient’s cancer is different and must be treated differently. Treatment needs to be based, not on it’s  location, but on the unique pattern of gene mutations it exhibits. This understanding has led to the development and increasing usage of a test called Genome Typing. In the simplest explanation, genes are microscopic particles (nucleotides) located on the chromosomes of a cell. The genes instruct the cell to behave in a certain way and perform certain functions. Cancer alters, mutates, a gene to send a different signal to the cell so it  performs, not its normal function, but a function suitable for the cancer’s growth. This pattern of Genetic Mutations is unique to each cancer. Discovering and, possibly, attacking these mutations is called Targeted Therapy. Let’s assume that one patient’s parotid cancer shows the same gene mutations as the other patient’s breast cancer. Therefore, both these cancers need to be treated with the same medicine. The location of the cancer is totally irrelevant.

The problem is that federal agencies and the health insurers are still stuck in the past. My cancer, the salivary duct carcinoma of the parotid is practically a twin of the ductal carcinoma of the breast. It stands to reason that a drug that worked against one is likely to work against the other too. Because breast cancer is very common and parotid cancer is exceedingly rare, it is far, far easier for researchers and drug companies to test a new drug against breast cancer than against parotid cancer. Therefore, they can present convincing data to the FDA to show that a particular new drug works against breast cancer and thus get the approval for its use in breast cancer treatment. Unfortunately, parotid cancer patients, due to their small numbers, are left out in the cold. There are plenty of drugs that are FDA approved for use for breast cancer but none for parotid cancer. This allows the health insurers to refuse payment for most new drugs for patients like me. It becomes an uphill battle, often futile, to fight. I am blessed to have had the wherewithal I did, but not everyone survives the fight.

The simple logic is that if a drug blocks Her2 and successfully treats Her2-positive breast cancer, its use should be approved for any cancer anywhere that is Her2 positive. Unfortunately, this simple logic is lost on many in the hierarchy.  Lately, there have been some encouraging signs that the FDA is moving in this direction. Insurers are still slow to respond but ultimately they will.  Tomorrow is looking better and brighter.

I think of the whole thing in this way: The evolution of cancer treatment is similar to the evolution of how we used telephones. Years ago, in the 1940s and 1950s, we had neighbors sharing the same line, first the crank-up type and then old rotary phones—party lines they were called. It would not be unusual to pick up the phone and learn that your next-door neighbor was already talking on it. You would have to wait—and hope that your neighbor would not blather on for another hour before you could make your call.

Later, we began to see home phones—one house, one line. But still, everyone in the house was on the same line. If you picked it up to make a call, you might hear your brother talking to his girlfriend. You couldn’t get on until he hung up.

Today we have cell phones and the days of the house phone are almost over; the concept of a party line is simply laughable. 

Cells phones of today are highly personalized and sophisticated communication tools. They are configured exactly to specific users’ specifications: their own phone number; the exact amount of memory they need; the number and kinds of apps they want installed; their contact list; their choice of songs, photos, videos, and documents; and even their very personal and confidential data. It is a highly personalized gadget now.

So is cancer treatment.

And that wonderful news is why if there were a better time to have cancer, to have a doctor drop the bad news on you, it is today—right now.

Why is this happening?

On one front, medical science continues to make extraordinary strides. Each new kernel of knowledge accelerates and expands what was previously known—one new discovery leads to five more. Targeted therapy is one example—but a very good one.

On a second front, doctors have begun to expand their knowledge about how to marshal the body’s own defenses, its own immune system, to attack cancer.

Former President Jimmy Carter astounded the world in December 2015 when he announced he was cancer free. Only months before, he had said it was unlikely he would survive the late-stage malignant melanoma that had spread to his brain.

He might have astonished the general public, but medical insiders were not as surprised. Mr. Carter was the beneficiary of a new wonder drug, Nivolumab, and the relatively new concept of immunotherapy for cancer—checkpoint blockade.

Bright Hope on the Horizon – Part One

/in , /by

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Dec 2020)

Let’s be realistic. There is never a good time to have cancer.

Even today, caution and years of fighting to beat the odds against surviving this insidious enemy have made it an almost certainty that no doctor will ever promise that the cancer will never return. 

You will learn, in the good times, to say, “I’m cancer-free,” or “My cancer is in remission.” And you will hope the remission is permanent, but you will keep that to yourself. 

You will not dare say, “I’m cured. It’s gone. I beat it. It will never return.” 

I learned those rules as a physician and got personally reacquainted during my own struggle, so in due course, I learned to play by them. But the more years I survived and the more knowledge I gained, the more I got calls from friends and friends of friends of friends. 

“How did you do it?” they asked. “What should I do?” 

Very few people have been lucky enough to escape being touched in some way by cancer. They have a friend or a brother or a mother who died, they have an uncle who is in serious condition, or they know the nice woman down the street who was just diagnosed.

I’m happy to be where I am today—a survivor for many years. I’m gratified that people come to me for answers about what to do. 

Now, today, this is what I can tell them.

Medical science is advancing at a break-neck speed. New and exciting discoveries are being made each & every day. We now have a broad and ever-expanding range of targeted therapies. Then there is this whole new field of immunotherapy that has improved the prognosis for so many cancer patients.

Today, we can look back on how we treated cancer as recently as the 1990s and equate it with the Dark Ages—a time when very little was really understood. By comparison to what we know today, treatments thought to be cutting edge in the 1970s and 1980s seem downright primitive. 

In the 1960s and 1970s, for example, doctors treated cancer in a one-size-fits-all manner. There were only a handful of cancer killing chemotherapy drugs that were used to treat every form of cancer in a “one size fits all” thinking—and, of course, with horrible & debilitating side effects. More often than not, a cancer diagnosis was a death sentence.

In the 1980s, things began to change a bit. Doctors would treat breast cancer differently than say, lung cancer, which would be treated differently than kidney or bone cancer.

But that was missing the point as well.

Over time, doctors began to realize that it didn’t matter where the cancer began. They saw that each cancer had its own particular histology and its own unique behavior. 

My cancer is a classic example. It started in the parotid gland but, under the microscope, looked just like the ductal carcinoma of the breast. The fact that it originated from the parotid gland, not the breast, is rather irrelevant. It is basically the same cancer and should be treated the same way. And later, when it spread to the lungs or the bones, it was still the same parotid cancer, not a lung cancer or a bone cancer. It just happened to relocate there. 

My cancer had a life of its own. It was unique. It did not matter where it started from or where it migrated.

Once doctors began to see that, researchers were at the dawn of the new concept of targeted therapies. Each cancer was unique to each patient. The treatment should be individualized, targeted, against that particular cancer based on its unique characteristics, behavior, and vulnerabilities. One size does not fit all.

Click Here to Read Part Two