Cancer Pain
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
Physicians Say Good Riddance to ‘Worst Drug in History’
Allison Gandey
http://www.medscape.com/viewarticle/736718
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.”
From Medscape Medical News
Physicians Say Good Riddance to ‘Worst Drug in History’
Allison Gandey
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.”
Editorial
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.
38 comments on "Cancer and Pain Management"
Exellent article as usual. Just to say beware of overuse of ibruprufen. Causes many people stomach irritation and my docs said no ibruprufen as my platelets were low (below 100)due to bleeding risk. For me, codeine is very effective but causes terrible constiption if taken for more than one day,so I reduce the dose as much as possible.
Bendamustine caused horrendous bone ache when my poor bone marrow was trying its best to replace what was destroyed. I have mild peripheral in my left fingers due to neuropathy. Hurts like hell in cold weather – prevention is the trick learned here.
One last point. Everything in life is about point of view. Someone I met had a wife who died within 2 years of diagnosis leaving him widowed with 4 children. When I wa s explaining CLL and bemoaning the rounds of treatment and shorter remission times, he just said to me that he would have given his right arm for 7 extra years with his wife. Just made me think.This is not a gd cancer and our quality of life is not great, but at least we do get a chance for some extra years.
I am now in London aged 54 and preparing for a mini allo with a sibling donor. Just trying to get rid of these pesky nodes!!
Excellent article, Chaya…I’m passing it on to a whole bunch of my friends, as I don’t think any of them are aware of the problems with acetaminophen.
But, now I am confused…I have had sinus problems for decades, and have found that ibuprofen has always served me best. Usually no more than one or two OTC tablets a day is all I need. Using the labeled doses, the other OTC preps, like aspirin or even Aleve, don’t seem to do anything for me.
But after the CLL diagnosis, my doctors have all told me not to use ibuprofen, and that acetaminophen (boy, that’s hard to type!) is my only choice! Would that be because of the platelet connection? I was led to believe that the ibuprofen was more damaging to the liver than acetaminophen.
At any rate, last week, I took as many as 5 ibuprofen tabs a day (along with one OTC pseudoephedrine tab) for the three days that I had sinus pain. I tried the acetaminophen earlier in the week, and it didn’t seem to help. My platelets have never been a problem, and my current monthly blood test still show them low (in the 130 to 150 range…never below 125…even during my treatments) but, I assume very acceptable as no one seems to be worried about it. And when i cut myself shaving (as I often do) the bleeding still stops before I finish shaving.
Should I be worried, or am I better off with the ibuprofen as the information above implies?
At least for shingles, there may be hope for CLL patients in the form of a new vaccine. MERCK has been conducting clinical trials on a heat-killed zoster vaccine, V212, for use in immunocompromised patients. The trial was completed last year so we will have to wait for the results.
I think it was because my platelets were below a 100 (81 If i remember)that I had the warning. They have recovered to about 130, and so was using a low dose to control back pain. I think we just have to be cautious.
By the way I was prescribed doxycycline for my sinus poblems and it has really worked well for me. I had dreadful sinusitis for years and saw an immunolgist who said sinus probs not unusual in our scenario.
Harley:
In general, NSAIDS (non-steroidal anti inflammatory drugs) such as ibuprofen, aspirin etc are thought to have lower overall toxicity than acetaminophen (Tylenol). This is particularly true of liver toxicity.
However, NSAIDS carry significant risk of GI tract bleeding. All NSAIDS have the propensity to increase bleeding. People on blood thinners because they have an artificial heart valve, for example, may not take NSAIDS. Seems to me the same would also be true of CLL patients with very low platelet counts.
It was hoped that COX-2 inhibitors such as Celebrex would avoid the liver toxicity of Tylenol and GI bleeding risk of NSAIDs. Unfortunately, both of the COX-2 inhibitors (Celebrex and Vioxx) have been shown to have cardiac toxicity.
mickey 1214:
The problem is that even if the new shingles vaccine is effective (in the general population) and has no live virus in it, I wonder how many CLL patients will benefit from it. Our guys have a track record of very poor immune response to vaccinations of any kind. Witness how little joy they get from routine flu shots or pneumonia vaccinations. People need a healthy immune system to respond effectively to vaccinations – and our guys come up short on the “healthy immune system” part of the equation.
Great information Chaya as usual, thank you for
your continued efforts on our behalf.
Great report Chaya. Those of us that “pop” painkillers should take heed.
Finding an acceptable pain reliever for my husband was challenging. Ibuprofen was the best for sinus pain, the pelvic pain and discomfort from bulky nodes but he was often restricted from using it due to blood counts. Oxycodone was so constipating and caused urinary retention that he didn’t use it. Early on, Darvocet was a good pain reliever for him and he did not use it often but he died of cardiac complications 3 months post transplant in a lot of pain from GVHD of the gut. I am going to attend a seminar on pain relief, I hope there are better answers out there than what we experienced 2006-2008. Dilaudid is a drug that was used IV to help with pain he had while in hospital, it was the third drug they tried. Is there an issue with Dilaudid?
Very good and accurate, thank you.
My spleen was huge, down into my pelvis and 6 inches to the right of my navel. I had some discomfort at times that I adjusted to but no real pain.
rosymk:
I am so sorry about your husband. I wish there was something I can say that would make a difference.
“Dilaudid” tablets or “Palladone” capsules (generic name hydromorphone, also known as dihydromorphinone) are extremely powerful narcotic medication. I have heard Dilaudid is several times as potent as morphine. The side effects are not all that different from morphine. I have not heard of any specific issues with Dilaudid, over and beyond that.
None of the present day options are perfect, all of them have adverse effects profiles that can be scary. Nevertheless, I am glad we have access to such drugs if and when our patients need them.
I should have listed Dilaudid in my chart of painkillers. Thank you for pointing out the omission.
Chaya, thanks for all you do for us! You say, “…drugs such as fludarabine, Campath that are particularly lethal to T-cells.” I understand this. My question is does Pentostatin fall into the same category as fludarabine?
Have a good day!
Tom
Lab rat 5:
Yes, pentostatin falls into the same category as fludarabine. Both are purine analogs, both follow the same mechanism of cell kill. Pentostatin is thought to be less myelosuppressive (less damage to myeloid cell lines such as red blood cells, platelets etc). But I have seen nothing to convince me that it is any kinder or gentler on T-cells.
Nan
Thanks for the good information on pain relief. As a hospice nurse I have seen too many patients suffering needlessly due to fears of addiction. Appropriate meds at the right time and the right dose are merciful additions in palliative care, whether in acute or terminal situations. Just a word about ibuprofen: Diabetics should be cautions due to the potential for kidney damage.
Very interesting, also pondering what some of it is in GB! Here serious pain is sometimes “alleviated” by the addition of amitriptyline in a low dose, seems to maximise the impact of painkiller.
Keep well and happy, Mette
There is no free lunch when it comes to pain relief medications. Almost all relive pain but also effect some other function of our bodies. Most of us develop an unrealistic expectation of narcotic pain relievers from our earlier experiences with acetaminophen, aspirin, or NSAIDs. Many falsely assume that since the non-narcotic medication were able to eliminate minor pain without adverse effects from toxicity or side effects, narcotic medications should be able to do the same for the tougher pains. Unfortunately this is not a valid assumption.
Narcotic medications effect many different receptors in the body. In general, the pain reliving receptors require a higher concentration to relive pain that receptors that produce nausea, drowsiness, decreased breathing, and constipation to name some of the more common side effects. As a result, the side effects can last beyond the pain relieving effect. Over time the body can adapt to some of these side effects. Unfortunately, there is little adaption to constipation. If you require narcotic medication for any length of time, it is best to also use medications to prevent constipation on a daily basis.
In the acute pain/short term setting, narcotics medications can provide a more complete pain relief than when they are used in a chronic setting. In acute pain the side effect of drowsiness/sleep can be beneficial since it may be possible to sleep through some portion of the most painful recovery. Many times there is an effective treatment for the problem that caused the pain. As the body heals, less pain medication is required. In this setting, the dose of the narcotic medication used to treat pain is less dependent on the non-pain relieving effects of the narcotic.
When narcotic medications are use to relieve chronic pain, the pain-relieving effect is much more dependent on non-pain relieving effects of the narcotic medication. In this setting the goal is making the pain more tolerable rather than eliminating the pain. I realize that this approach is difficult to accept if you are in chronic pain. However, chronic pain patients that accept this goal/approach also tend to be the ones that are best able to manage their life with chronic pain.
Fortunately, the treatment of chronic pain has advanced significantly over the last twenty years. As a group, I have found oncologists to be more aware of the pain management needs of their patients and also more likely to work with pain management clinics for the more challenging cases than most physicians. High quality pain management programs are now available at most university and larger hospitals.
Finally, I would like to re-emphasize Chaya’s point of seeking early treatment for zoster. There is a much lower chance of developing postherpetic neuralgia with early use of anti-viral medications. Even with anti-viral medication, postherpetic neuralgia can develop in up to 20% of patients following zoster. The pain can be very difficult to manage – but not impossible. In this situation I would recommend an early visit to a respectable pain management clinic. I have been on prophylactic anti-virals for almost four years (campath, then transplant). I have taken care of too many patients with postherpetic neuralgia. I gladly spend ~ $30.00 a month on acylovir hopefully to avoid zoster. In my mind it is money well spent.
Great article. Thank you Chaya.
Be well,
Monique
chaya,
Thanks for alerting everyone to the dangers of acetaminaphin. People do tend to think of Tylenol type meds as being easier on their systems but that is not really true. And NSAIDS need to be taken with plenty of water because they can be hard on the kidneys if you do not have adequate fluid intake. Always something. I always look forward to your articles because they are helpful, informative and you always have our best interests at heart.
Chris R
Steven Karan’s comment is worth mentioning again:
“I gladly spend ~ $30.00 a month on acylovir hopefully to avoid zoster. In my mind it is money well spent.”
I went through my first round of FCR at M.D. Anderson and before starting, I was prescribed valacyclovir (substitute for Valtrex). The prospect of getting herpes zoster after watching my healthy wife suffer through it twice in two years about 10 years ago made it clear I won’t take chances on allowing this to happen to me.
Barry
Sorry for the typos on the last post. I got distracted and not only missed catching them, I also failed to mention the most important point. There are ways to control severe cancer pain and still be alert and lucid enough to communicate with loved ones. If you or a loved one’s pain is not adequately controlled, talk to your oncologist. If your needs are not being met, asked to be referred to a pain management center that specializes in the treatment of cancer pain.
So much welcome information as usual. Thanks Chaya for all the time you give for helping so many.
Pain meds:
I use Tylenol sparingly – though usually 2 – 3 tablets of the regular (325mg) dosage a day. I really have to search for the regular strength dose as everything is extra strength. I buy tablets so I can break them – start with less and add more if/when needed. If I can only find the 500 mg size – I get tables that can be cut or I will only take one.
I have been given Dilaudid & morphine IV when hospitalized, & grateful for it – when needed it works, but when the pain lessened, I found these meds made me feel foggy & nauseous – maybe my body was sort of rejecting it at that point. I have used the fentanyl lozenges 200 mcg with the least side effects. Just about everything else on Chaya’s list gave me problems such as severe abdominal pain, nausea and vomiting. One thing I noticed with the lozenges: If severe pain it will take 2 lozenges to help, but if the pain is borderline not quite a 10 or severe enough, I get a headache after the lozenges. I need to pay attention as I think my body is communicating to me – though some may say bunk.
My first choice for pain relief, is heat, alternating ice and heat, massage, essential oils, meditation, stretching, a soak in hot bath with epson salts, exercise & small weights. Admittedly, there are time when even 2 fentanyl lozenges and 2 reg. Tylenol and all mentioned attempts have not taken the edge off – those days I do not like. Ideally, no drugs for pain because of the damage they cause to the body, and I hear there is research to block some nerve receptors with lasers or something, but wouldn’t it be great to live without chronic pain that can interfere with every aspect of daily life.
As for allergies, good old neti pot. At the first sign of an issue or even daily during high allergy times, I use my neti pot. Being a dog person, my dogs are used to the routine that they get a cleaning as do their beds and house. Still I have some issues, but do try to keep to a minimum as best I am able.
I am not sure where I stand with my blood work since last BMB last Nov, when after only making it through 3 cycles of the PCO trial, I was told I was in “complete clinical remission”. Some counts were still very low and hopefully are still working their way up. I still have zero appetite, and have ‘post-it’ notes around reminding me to “EAT”.) My gut problems from chemo, and all the continuing prophylactic medications is better since a wise nurse told me to take probiotics – 3 different ones and to alternate them – wow, what a difference. I was able to get off all the gut meds and their added problems.
How long do we (CLL’ers) have to stay on the anti-virals, bacterials, etc after chemo? If dependent on individual, what are tells?
Next month will tell me more when labs will be repeated. A little stress in the not knowing if remission is holding, if blood levels are good, etc. – but keeping mind busy and continue on as if all is improving – will hold that thought!
Thanks Chaya, Excellent article!
In reference to Maka’s comment about taking probiotics – 3 different ones and to alternate them ..I wonder if she means pills or yogurts? Wish she would illuminate on those she’s taking.
After a mild attack of shingles, 2 years ago, my doctor at Memorial Hospital put me on Acyclovir, so far so good for no repeat performance.
Chaya,
Nice.
Nothing is free. Tylenol is probably mildly hepatotoxic even at therapeutic doses, all NSAI are tough on the kidneys and carry the real risk GI bleeding, COX2 can cause heart issues, and opioids are sedating, constipating, and potentially addictive.
Another group of meds used to treat neuralgic pain, maybe post herpetic or diabetic (Tegretol, Elavil, Neurotin, and a host of others) all carry their only litany of side effects.
Yet all are needed and all can help, sometime miraculously making a life of misery and disability into one of balance and action.
The underuse of pain meds, especially the relatively safe opioids due to Victorian era overstated fears of addiction is one of the great tragedies in modern medicine.
Thanks
Brian
Chaya,
Thanks again for valuable information we can all use.
Blessings,
Rita
Chaya:
The MERCK trial on heat killed V212 is designed to look at the efficacy in immunocompromised cases. They specifically mention recruiting HIV cases (kissing cousins to CLL in terms of Ig values) and blood cancer cases. The trial is NCT00535236. I am wondering if someone in your position could get some prepublication results from MERCK?
As to pneumonia, I believe the Finns have shown that CLL patents can mount a decent response to conjugate pneumoccal vaccines: prevnar 7 in their study. That vaccine has been expanded in coverage and has been replaced by prevnar 13. Although approved for pediatric use, it is under FDA fast track for adult use. It can be had now for CLL patients: I got one shot already.
As for Flu, including H1N1, there is a quad dose available for seniors which should be somewhat better for CLL cases than the single dose normal folks get.
A special “thank you” to Steve Karan for his informative comments.
mickey1214: I will see if I can find more information about the MERCK heat killed V212 vaccine. Thanks for flagging this.
CLL patients sometimes end up taking a huge variety of pills and potions, some prescribed and some over the counter. It is a good idea to keep a running log of how much of what stuff you are taking, on a daily basis. Sometimes it is hard to remember all the pills and capsules you are taking and seeing it written down can in one place can be an eye opener.
Bad drug interactions and “poly pharmacy” effect of too many different drugs can be quite dangerous. Please understand just because something is herbal or “alternative medicine” does not give it a free pass, no questions asked. Especially not as far as liver and kidney toxicity are concerned.
To answer question from monag764:
The probiotics that were recommended are Pearl IC, Culturelle dairy/gluton free, and Jarrow-Dophilus+FOS. I also checked with the GI doctor after this regimen was suggested and he wrote in his notes that this too was his recommendation. I also let my other doctors know with their approval.
I tried the 3 different probiotics in varying ways, such as one for a week, then another, then the other, and now try at least 2 of them at different times during a day. It took a few weeks to calm things down, but am amazing at the difference.
Chaya’s advice on knowing what you are taking, etc. is a must. I made a table document in my computer where I list all medications I take, amounts and times prescribed as well as all vitamins, supplements and other things I take or try.
I call my doctor’s nurse to see if okay to try something and also check with my pharmacist to see if any problems or interactions with things I am already taking. Pharmacist’s was also in full agreement with the probiotics.
I update this list as needed. I print out the sheets and keep in a zipper bag with all my medications, etc. I note the time on the sheet when each med, etc., is taken. I also take these sheets with me to the doctor so he can look through them – and he does. I put a section at the bottom of each day’s column entitled “how am I doing/feeling”, and if any fevers that day and what and when.
I do eat low fat plain yogurt a couple times a week, not thinking probiotic, but because I have it with fruit and rolled oats.
And I’d still like another way to control pain besides drugs that can cause harm, but yes they do make life manageable (and thanks to the PCO combo – though horrid on me) – I do have life! Time will tell long range …
I recently got out of the hospital with my bag of prescritions for Ischemic colitis. One of which is hyroco/acetamenaphine 7.5/500. No more than 6 in 24hrs. I just looked.
I have known for a long time that acetamenaphine was not good for the liver. However, because of your article I will be much more cautious about taking the loratab. I cut them in half anyway for pain management purposes. Can’t take ibuprofin as my platlets are already low 40s and my onc. warned me about it.
Thanks for getting me to take another look.
Hello Chaya,
Great article, I seemed to find you at the very time I was exploring this avenue. Diagnosed in February last year it took a while before I was confident enough to address additional concerns I may have surrounding CLL, that do now affect my quality of life and may impact on future treatments. I understand now how varied our CLL experiences may be, and that many of us also have accompanying conditions that may influence or be influenced by CLL
.
A specific area of concern has been the need to address pain relief for increasing bone and joint pain that seemed to arrive a short time before diagnosis and has continued to spread rapidly throughout my lower body. As this coincided with an infarct to my cerebellum and the subsequent diagnosis of hypertension, drugs necessary to the future management of this prevent the use of ani imflamitories. Recent posts on CLL lists have illuminated me about the potential effect of vitamin D deficiency and it’s relation to bone pain, especially within CLL patients. I am currently awaiting test results on my vitamin D, and calcium levels, if levels are low, raising the levels may be the answer to reducing this pain. Recent Mayo clinic studies I have found indicate this may be the case. As the influence on low vitamin D levels is not reported in the UK, such a straight forward solution would be for me and many other patients a major revelation.
If this exploration does not produce any change, then I am forced down the road of Narcotic pain relief. Paracetamol does provide temporary relief, but it’s toxicity really does not make it attractive as a long term solution. Codiene and dihyrocodiene give good relief depending on the level of discomfort, but the side effects of drowsiness, thirst and constipation mean that this also needs to be accompanied with a laxative. Sensory feedback therapies tend to be too aggravating upon joints and with activity increase discomfort and as I am sceptical about the effectiveness of the less taxing therapies it may reflect in their effectiveness for me.
Finding an effective compromise will probably be the best I can do. But I cannot underestimate the importance of finding a solution that will help when holding out as long as possible before first treatment and enjoying life outside of CLL. As a young man knowledge and planning are very important to me. BEAR 48(UK)
Great article, Chaya!
I took the shingles vaccine when it was first offered, about 3 years ago, if I remember correctly.
A month later I was diagnosed with CLL, and after consultation with Mayo MN, was treated with FC [1 week “on”, 3 weeks “off”] for 6 months, achieving a CR that continues. The plan was to use FCR – but I reacted so well to the FC that R was never added.
Dec. 12 of last year I developed shingles – on my right butt and pubic region. I immediately started on 800mg of Acyclovir 5X a day. By the 19th I had developed meningitis and was in the hospital for four days. The pain was indeed intense [not that I remember much of the first day or 2 in the hospital – I believe they had me on morphine].
When the pain hadn’t subsided I consulted a neurologist. I take Effexor for depression. The neurologist suggested a combination of Effexor and Cymbalta [duloxetine HCI]. Cymbalta has a known effect on pain. The combination has been effective for me [NOTE: Cymbalta can be both constipating and cause diarrhea when first taken. The neurologist transitioned me over a week from only Effexor to a combination of Effexor and Cymbalta: fish oil and lots of liquids.] I continue to take 1 800mg Acyclovir daily to prevent further problems.
One more avenue to explore for pain – if you are already taking an anti-depressant. NOTE: make sure you have someone monitoring you – changing anti-depressants can be tricky.
Jane
Jane Marie:
Thank you for sharing your experience. You highlight a point that I should have made in the article: the psychological trauma of intense physical pain is quite real. Depression is quite common in people suffering from chronic pain. It does not help them to be told they should just be brave and tough it out. Anti-depressants are often needed.
Now that is another can of worms, ranking all the anti-depressant drugs out there in the marketplace in terms of their efficacy and toxicity. There is a lot of money to be made in this market segment and the marketing hype is getting out of control. I get depressed just thinking about anti-depressants.
I cannot comment on my response to vaccines pre-transplant. I did not check titers at that point of my treatment. I did get serial IgG, IgA, and IgM levels. As expected, even when I was first diagnosed with minimal disease, those levels were already slightly below normal. I would get an increase in antibody levels approximately 6 months after each treatment, but the levels never came close to low normal. As my disease continued to progress, the levels would also regress.
It has been fascinating to follow my immune recovery post-transplant. One advantage of a peripheral stem cell donor harvest over a marrow harvest is the possibility of a greater amount of transferred immunity from the donor. In addition to transferred antibodies, there can also be a transfer of memory b and t cells. In theory, the memory cells provide protection for a much longer period of time than the four month protection from the antibody transfer or the 3-6 week protection from IVIg infusions.
My antibody levels were checked 100 days post-transplant. The IgG level was 340 (nl 700-1600) and not unusual at 100 days post-transplant. Most centers recommend IVIg infusions every two months during the first post transplant year until the level is above 400. My low point for the year was 268 but by the one year check-up it had slowly climbed to just under the 400 level. Titers were also drawn at the check-up. I had protection against 8 of the 23 pneumococcal strains as well as protection against hepatitis b, haemophilus b, and tetanus. My chimerism was 100% donor so the protection was most likely transferred from my donor. My CD4/CD8 ratio was already 1.38 (nl 2) but my b cells were almost non-existent.
I assumed that the protective titers were the result of transferred memory cells. Too much time had passed to assume the protection was due to remaining antibodies from IVIg infusions or donor antibody transfer. Given the 100% chimerism, it was also unlikely that I had any old memory cell still hanging around to explain the protection. I was excited to start my immunizations knowing that I had a decent number of CD4 cells to help stimulate new b cells to respond to the vaccinations with antibody production. I was also comforted by the thought that I had probably picked some memory cells from my donor.
My immunizations were given on four dates separated by two month intervals. On each date there were multiple immunizations. My protocol used prevnar 7 but they recently switched to prevnar 13. Six weeks after my final immunization we rechecked the CD4/CD8 ratio, antibody levels, and repeated titers for some pneumococcal strains and pertussis.
I was quite surprised by the results. I had no response to pertussis. Of the seven prevnar pneumococcal strains, I lost protection against three strains, did not respond to one strain, but gained protection against three strains. Of the non-prevnar 7 strains tested, I lost protection against two strains.
The protection I once thought I had from transferred memory cells was gone. My IgG level had dropped to an all time low of 175. However, there was some encouraging news. The CD4/CD8 ratio improved to 1.72. Although the IgG level had significantly dropped and the IgA level remained stuck in the mid-teens (nl 70-400), the IgM level jumped to 40 (nl 60-260). My IgM level had been stuck below 6 for more than a year. I took this as a good sign since increases in IgM levels precede increases in IgA or IgG in newborn immune development.
While I hated to see the loss of transferred immunity from my donor, I was very encouraged that my new immune system had responded to some of the penumococcal strains as well as the increase IgM levels. Given that I was 51, I wasn’t sure how much thymus remained to produce functional t cells. Without functional CD4 helper t cells, it is pretty hard to expect b cell maturation and the production of adequate antibody levels. A functional response to an antigen challenge is evidence that all the pieces of the immune system are coming together and doing what they were designed to do. It is what we hope for and expect of our immune system.
I look forward to this spring when we will repeat the immunization protocol. This time we will use prevnar 13 instead of prevnar 7. I will keep you updated on my response to the second series of immunizations.
I consider myself very fortunate in that my transplant and recovery has been very smooth. I continue to feel well and am free from any limits on physical activity. From that standpoint, it has been hard to accept that recovery from transplant usually takes 3-5 years. However my immune system’s current state is a stark reminder that the 3-5 year timetable is real and underscores how immunologically vulnerable I remain almost two years post-transplant.
Thank you Chaya for this valuable information. Excellent theme.
I always assumed that the combination of acetaminophen or NSAIDs with narcotics was either to take advantage of the synergistic potential (two medications at lower doses having a better response and lower adverse profile than a single medication at a higher dose) or a way to extend the profit margin on the narcotic. It is common practice for pharmaceutical companies to combine two drugs off patent protection into a “new” fixed combination product to extend patent protection and thus profits.
Fortunately, there are formulations of just about every narcotic without acetaminophen or NSAIDs either in regular or extended release form. The extended release formulations tend to provide a more stable drug level with less frequent dosing. Extended release formulations are more expensive and carry more risk of potential abuse if used incorrectly.
Although sad but true, there is a very ugly side to narcotic medications. Crushing, breaking, or chewing the extended release capsule converts the medication from sustained release to immediate release. That is why these type of medications are near the top of the list in the prescription drug abuse market. It is a good idea not to mention to anyone other than your physician that you have been prescribed extended release narcotic medications in particular or any narcotic medication in general to limit potential break-ins/theft. It is also a very good idea to keep all narcotic medications locked up at all times. Unfortunately it is quite common for family members to steal and use or sell these medications. I know of several cases of adult children giving their parent or grand parent sleeping medications in place of the narcotics so that they can sell or use the narcotic.
Methadone can be a good, low cost alternative to extended release formulations. Methadone is one of the longest lasting narcotics. Methadone drug levels are similar to extended release narcotic formulations. This is one of the reasons it is the drug of choice for heroine detox programs. It tends to be cheaper that the extended release preparations and also has a lower incidence of abuse. For all these reasons, it works very well as a naturally long lasting chronic pain medication. However, methadone is usually only available through pain management clinics. As the use of methadone in the management of chronic pain has increased, so have the reports of street use and overdose cases.
The take away message is that pain medications should be a private matter between the patient and physician. For your own safety, keep it that way.
WillB
Chaya, your chart above, is an excellent reference for the differet types/strengths/effects of pain medication. Breaking it down like that was most informative.
Many thanks,
WillB
MLMG
Thank you Chaya for the very important information on pain Rx of all kinds. There are so many variables to be considered with the expirience of pain that a real bottom line might be–if what you are doing is not working and your doc is not able to help–ask for a referal to a “pain specialest” There are also Xylocaine patches for sore points. Very light rubbing between the painful area and the brain takes advantage of the “gate control” theory of pain management in which the skin surface nerve stimulation has priority through the nervous system to the brain and could block the transmission of pain from lower down the route of the nerve. Listening to music with ear phones really is helpful, also. Neither of these is toxic. Question-How is CLL related to neuropathy?
I had shingles 7 years ago. I was not diagnosed for 7 days, due to a dentist telling me that the numbness in my gums was due to an abscess. By the time I went to a doctor who did diagnose shingles, I had to go into the hospital and get acyclovir and other drugs by IV. I have since tried everything possible for the still-intense pain: pain mgmt. clinic shots, all kinds of medications, gamma knife surgery, etc. Oxycontin did help but it became a brand name instead of a generic and I cannot afford it.
I am now using the maximum dose of Neurontin plus either Tramadol or Percocet. I try to change the painkiller part occasionally. For some of us, this pain will always be with us.
All CLL patients should keep shingles in mind. If they have any thoughts that they might have shingles, they should get to a doctor or ER immediately. The use of acyclovir early helps limit the virus although it cannot eliminate it. I would not wish this pain on anyone.
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