Several years ago a good friend of mine died of metastatic bone cancer. He was Japanese and like a lot of Japanese people he believed in all that macho stuff about denying pain. I think “Bushido” and samurai philosophy influences Japanese doctors as well. My friend was given far less medication for his pain than he would have received in this country. His suffering was intense, as was the suffering of his family and friends as we watched helplessly. There was a palpable sense of relief when he passed away.
I had never heard of CLL before my husband PC was diagnosed with it back in the summer of 2001. I heard the phrase “bone marrow infiltration” and the first panic filled thought in my head was about my friend Sakai-san and his horrific experience with soul destroying pain. Would PC have to suffer like that? I could not bear the thought. It was the first thing I looked up on the internet. How painful is CLL? What could I expect for my husband?
Let us count our blessings..
I hate it when oncologists hand out CLL diagnoses with the usual cliche about how it is a “good cancer” to have. No cancer is a good cancer. And CLL is an incurable cancer. How can it be a “good” cancer? True, some of our more lucky patients have a very indolent form of CLL and may live out their natural life spans without having to pay much of a price. But a goodly portion of CLL patients are not so lucky, especially if they happen to be diagnosed at a young age, or they drew the short straw of high risk prognostics. An overall life expectancy of 8-10 years sucks big time if you are only in your mid forties or fifties when diagnosed with CLL. My husband was just 59 when he died.
But there is one aspect of CLL that is truly something to be grateful for. CLL is inherently not a painful cancer. Increasing numbers of CLL cells in your body do not cause pain, not directly. Aha. There is that little caveat. Not directly. In other words, there are situations when CLL can cause indirect pain. It is almost guaranteed that at some point in your CLL career you will need to use painkillers. Depending on the intensity of the pain and the length of time for which it lasts, there are different pain control options. There is nothing noble about suffering pain in silence, not to my way of thinking. On the other side of the coin, it is all too easy to become dependent on painkillers. As always, the trick is knowing and weighing the risks and rewards.
CLL is a “pain in your immune system”
Most of the time a swollen lymph node or two under your chin or in your groin is not going to hurt much besides your sense of vanity. But there are situations where bulky lymph nodes can hurt.
Among the indirect ways in which CLL can cause pain are the effects of enlarged lymph nodes, spleen etc pressing on other organs. It is hard to eat or walk or even sit up straight if your spleen is extremely swollen. As any woman who has been through pregnancy can tell you, having a huge belly sticking out in front is sure to mess up your balance, make you stand and walk funny and throw your spine out of kilter. Don’t be shy about asking for a back-rub you guys. Remember all the times you did that for your pregnant wife. Turnaround is fair play.
If you are unlucky, the swollen lymph nodes may press against nearby nerves, in which case the pain may become more intense. Another cause of pain is bone marrow pain when patients are treated with growth factors such as Neupogen or Neulasta.
CLL plays havoc with your immune system. At some point in your life with CLL you may have to deal with infections, hospitalizations – and the pain associated with them. CLL (and CLL therapies) increase your risk of secondary cancers, with their own pain profiles.
Post herpatic neuralgia
I would like to focus on one particular infection that can cause very intense pain. Shingles. This is caused by reactivation of long dormant chicken pox virus. Most kids are infected with this brand of herpes virus and once infected, they carry the virus (“herpes zoster”) for the rest of their lives. In healthy people the virus is kept dormant by an active immune system. CLL patients are not so lucky. The inherent dysfunction of your immune system as a result of the CLL, coupled with even more immune suppressive drugs used to treat the CLL – both of these contribute to a significantly increased risk of viral reactivation.
There is not a whole heck of a lot you can do about the immune dysfunction baked into the CLL cake. But you can and should be aware of drugs such as fludarabine, Campath that are particularly lethal to T-cells. If you are prone to shingles attack, T-cell depleting drugs such as this can easily put you over the top. How bad can shingles pain get? There is a special name for it, post-herpatic neuralgia. I am told in a few cases it can be the kind of breakthrough pain that no painkiller can truly control. I know of two CLL patients who suffered such intense and uncontrolled pain after massive shingles attack that they chose to take their own lives.
There is something you can do to avoid / reduce the risk of shingles. If you are prone to shingles attacks, talk to your doctor about it before you undergo therapy with drugs such as Campath, fludarabine. There are several good anti-viral drugs now on the market that protect against herpes zoster (Zovirax, Famvir, Valtrex). Millions of patients have proven the efficacy of these drugs and their long term safety when taken as a daily pill for years at a time. Unfortunately, the shingles vaccine that you may have heard about is not for us. It carries a live virus and therefore contra-indicated for immune suppressed people.
Bottom line, it is far better to avoid shingles than to treat it after the infection is in full swing. If you do get a shingles attack, treating right away with one of the anti-viral drugs mentioned above will shorten the length of time of the attack and significantly reduce the chance of it getting out of control. Time is of the essence. If you are in a high risk group but you do not want to take daily prophylactic anti-viral drug, it may be a good idea to get a prescription filled and keep the drug handy for when / if you need it. If Murphy’s law is for real, chances are you will get the shingles attack late on a Friday evening when your doctor has gone for the weekend.
Painkillers on the market
Modern day medicine has many more painkillers available for treating pain, all the way from the ubiquitous aspirin to high-tech and high potency options such as fentanyl patches. Below is a list of some of the more well known painkillers. It is by no means an exhaustive list, nor do I insist the dosages and ranking (in terms of pain relief) are cast in concrete. It is just a more-or-less accurate guide to get you started thinking about it. You must do your own due diligence to get full list of adverse effects in each case. Brand names listed are those sold in the USA. Our European friends can easily look up local brand name versions by using the generic drug names.
Too much of a good thing
I would like to single out Tylenol (acetaminophen, also called paracetamol) for special mention.
Did you know that possibly the single biggest cause of accidental poisoning in the USA is acetaminophen overdose? People use this stuff like candy. Liver toxicity of acetaminophen is well documented. Acetaminophen overdose causes more than 450 deaths due to acute liver failure each year in the United States and this number appears to be on the rise.
Liver failure from Tylenol overdose is a classic case of drug poisoning. It usually takes a couple of days after injesting an overdose. The patient becomes jaundiced, may become comatose and die a few days later. I understand treatment must be given within 8 hours of overdose to be really effective. A liver transplant may become necessary in acute cases. Oy vey.
How much Tylenol is too much? The official maximum adult daily dose is 4gm. That is two 500 mg caplets four times a day. But what is a truly “safe dose” depends on a lot of things, such as the health of your liver to begin with, what else you are taking etc. Every single thing you put in your body goes to your liver, with very few exceptions. You may be taking less than 4gm of Tylenol per day. But are you also taking mega doses of green tea extract, a few capsules of curcumin, a little “neem leaf extract” as the latest sexy botanical, prescription statins for high cholesterol, a couple of glasses of wine to take the edge off things, and perhaps a bunch of other stuff? All of it adds up. Death of a thousand cuts is still death.
So, how come so many of the high potency drugs such as Vicodin and Percocet have acetaminophen built into them? Acetaminophen contributes very little pain killing oomph in such combinations, compared to the oxycodone or hydrocodone. Believe it or not, the acetaminophen is there to make the combination toxic. The worry is that patients will be more likely to overuse and become addicted to pure oxycodone or hydrocodone, and this can somehow be prevented by adding in a lot of acetaminophen to deliberately increase the toxicity of the combination!
I refuse to accept this crazy explanation. People are dying in droves in emergency rooms of plain Tylenol overdose because they don’t know it can kill them. What is the point of deliberately adding it to other pain killers in the hope that it will prevent addictive behavior? I am delighted that the FDA has finally woken up to this silly situation and demanding drug companies use lower levels of acetaminophen in their painkiller formulations.
“Worst drug in history”
Systems work when all stake-holders participating in it do their jobs. FDA has its role. So too do physicians and patients. There is something called post-marketing surveillance. Patients are supposed to report adverse effects to doctors and doctors in turn are supposed to bring these to the attention of the regulatory agencies. How well does this system work in real life? Not very well. Most patients are not communicative enough and most doctors do not go the extra distance of filling out the paperwork and reporting the adverse effects to the FDA.
Witness how long it takes to get rid of bad drugs. Propoxyphene is a narcotic pain-reliever and cough suppressant. It is weaker than morphine, codeine, and hydrocodone. It is sold under the brand name of “Darvon” (“Darvocet” when combined with acetaminophen). Recently FDA notified healthcare professionals that Xanodyne Pharmaceuticals has agreed to withdraw propoxyphene (Darvon) from the U.S. market at the request of the FDA, due to new data showing that the drug can cause serious toxicity to the heart, even when used at therapeutic doses. Check your bathroom medicine cabinets folks. Get rid of any painkiller medications you may have in there, if they contain Darvon or Darvocet.
From Medscape Medical News
February 2, 2011 — An estimated 10 million patients have used the pain reliever propoxyphene and were sent scrambling to doctors’ offices when it was recently pulled from the market. Many physicians are still dealing with the aftermath of the product, first approved by the US Food and Drug Administration (FDA) in 1957.
“Propoxyphene is the worst drug in history,” Ulf Jonasson, doctor of public health, from the Nordic School in Gothenburg, Sweden, told Medscape Medical News. The researcher played a role in the decision to stop the pain reliever in the United Kingdom, Sweden, and later in the entire European Union. “No single drug has ever caused so many deaths,” Dr. Jonasson said.
Burden on Prescribers and Patients
A growing number of products are entering the US market, Dr. Fraifeld noted. “It’s unrealistic to expect regulators to be able to closely track every single one.” Prescribers and patients must therefore pay close attention to any emerging side effects, he said. “Unfortunately, clinicians are not using adverse event reporting systems adequately,” Dr. Fraifeld added. “I think it’s fair to say that many physicians have no idea how to even use the system, and this is a problem.”
I started writing this article referring to my worries right after my husband was diagnosed, worries about how much pain PC would have to face. And sure enough, his local oncologist gave him a prescription for heavy duty Oxycontin right at the first meeting! It scared the living daylight out of me, I can tell you! We filled the prescription right away, just in case. So, how many of those Oxycontin tablets did PC use? None. Not a one. There were days when he had a headache, or over-did the mountain hiking bit and had to take an Advil tablet. But in all of the 7 years of his CLL journey he never needed to take a single one of those darn Oxycontin tablets that cost me so many sleepless nights in those early days. I hope that gives some of you cause to relax and quit worrying so much.
How people experience pain, how their brains process the pain signals and how they deal with it are very specific to each individual. No one can truly understand how someone else experiences pain. All we can do is feel it second hand, through our sense of empathy.
Just because it is so personal and individual, pain management is an art, not a science. We have scales for reporting pain, a shorthand way of communicating with our nurses and doctors. But only you can judge how much you hurt. Without your communicating that information to your medical team, they have no way of treating you. Best practices in pain management in cancer patients have changed a great deal in recent years. Now most oncology nurses are trained to ask patients whether they are in pain, as a primary question right up front.
There is a cultural and semi-religious (puritanical?) bias toward suffering pain silently. Please do not fall for that stereotype of stiff upper lip and silent suffering. Uncontrolled pain does you no good, and there is no reason for toughing it out. Uncontrolled pain can lead to many other problems – such as depression and loss of quality of life. Talk about it with your doctors, see how best your pain can be managed.
Since it is your brain that actually experiences pain, it is possible to change how pain is perceived by changing brain chemistry. There is also good basis for pain control based on feed-back loops, meditation, yoga, homeopathy, hypnotism, acupuncture, even placebos. This is an area of intense research and equally intense interest to patients. I have barely scratched the surface of this topic. I am counting on a lively discussion following this review where you share with the rest of the gang your own experiences with pain management.