What we blame on chemo

Posted by on Aug 6, 2013 in Cancer 101, Cancer Care | 19 comments

What we blame on chemo

 

Chemotherapy is a primitive therapy where we see who is poisoned more, the patient or the cancer.  Usually the patient wins, the cancer loses, tumors shrink, pain is relieved, people live longer and are often cured.  It is tough stuff and no one’s idea of a good time on a Friday night.

The list of side effects attributed to chemotherapy is overwhelming.  Fatigue, nausea, muscle aches, muscle weakness, joint stiffness, insomnia, sleepiness, agitation, infection, blood clots, poverty, rashes, mouth sores, weight loss, weight gain, neuropathy, cardiomyopathy, dyspnea, diarrhea, constipation, fatigue (worth mentioning twice), rashes, thrombocytopenia, anemia and of course our favorites, immunosuppression and hair loss (or as the wig makers say, drug induced alopecia). 

I was intrigued by a San Antonio Breast Conference presentation on “chemo brain,” the observation by patients and doctors that many patients have trouble concentrating (especially numbers) and with memory after they have completed treatment. This has been particularly noted by breast cancer patients, who are often young at the time of treatment, and is an added curse.   The study found that changes in thought do indeed occur, but that they start at the time of diagnosis before the chemotherapy begins.  The investigators suggest that the overwhelming stress of the diagnosis is partially to blame.

Other recent research shows specific neuropsychiatric injury can follow treatment, particular more aggressive chemotherapy and when combined with radiation.  Increasing data associates chemo brain with particular drugs, menopause, certain cancers, sleep changes and genetic risk similar to Altzheimers. Chemical and MRI alterations in patients with memory complaints have been detected.

While scientists will pursue these observations, it got me thinking about other problems my patients suggest are caused by chemo.  As sympathetic as I am to the invasive stress of poisonous polypharmacy, some of these are not likely, while others show how complex therapy can be:

–       One patient blamed a marked increase in being ticklish on Taxotere.

–       Another believed his losses in the 2008 stock market were because of antinausea meds.

–       A gentleman complained of hair loss … his wife was receiving the chemotherapy.

–       Hairy ears, in a 72yo man.  Hairy buttock, maybe, but ears?

–       No longer liked to eat liver … and this is a complaint?

–       The joy his wife took in giving him injections.  Pay back, I guess.

–       Never realized before how much she loved her job

–       Could never eat Jell-O again (now that I believe)

–       Wife (patient) would not longer cook, because it turned out the husband is good in the kitchen.

–       Losses at Atlantic City (and you thought chemo was a gamble)

–       Finally the “perfect” diet (will be not compete with Weight Watchers)

–       Coffee & chocolate taste foul (a common complaint)

–       The grandkids moved in. Mother-in-law moved in.  Dog moved in.

–       Became a movie addict

–       Fell in love with chemo nurse (they are indeed very special people)

–       Spent all his money because he thought he would die, but chemo put him in remission, so now he has to get a job

–       Increased sexual desire … I had to confirm we had actually given the notoriously romance suppressing drugs.

–       Lice.  Huh? Don’t you need hair?

–       The people at work are so nice to her, that she cannot fire anyone.

–       Spouse gained weight, eating food the patient would not

–       No hair prep time, so kept getting to work early

–       Less friends

–       More friends

–       More anxious

–       More calm

–       A different view of life

We pay a heavy price in the battle against the dread disease.  For many, chemotherapy causes symbolic transformation and complex physical change.  Not a day goes by when I do not look forward to the day when people will say, “they used to do what? Why?” The answer will be, “Well, that was when people still got cancer.”

 

 

19 Comments

  1. My husband didn’t have any of these side affects except fatigue which he had with the cancer before chemo. However, he only lived to receive one treatment. So as all you patients forge forward good luck and bare the side affects as you hopely reach remission and the cure for cancer we so badly need. God bless you Dr. Salwitz pancreatic cancer does kill :( Joe really was inspired by you. Thank you.

    • You husband was a really wonderful man who was blessed with a remarkable family. I am sure you will deeply miss him. I know I will.
      jcs

  2. I did not have chemotherapy, although there were times when I was at the oncologists office and blood was being drawn that I felt something else was going on. I saw it’s affects on some people. Very scary. A friend with colon cancer called and told me she said “That’s it”! after a round of chemotherapy almost killed her. I did not take tamoxifen…it was not on the menu…a few years down the road it was brought up. At that point I felt why now? I hope better and less toxic solutions are around if a time again arrives when I or someone I know needs cancer treatment. Very good post! The term I heard used was ‘slash and burn’, an anthropology term….

    • Slash and burn says it all.
      jcs

  3. I frequently heard “slash and burn” used, too, along with some more militaristic terms.

    I’ve read papers regarding sympathetic or perhaps, empathetic symptoms in those closest to cancer patients. Stress alone could account for many of these. I, personally, experienced the spousal weight gain (eating food the patient would not) but that had more to do with being raised with many siblings, not much money and a mother who said, “We don’t waste food” and “If you take it, you eat it” rather than chemotherapy. Also, her doctor said that, due to her extreme weight loss, I needed to get calories into her via any foods possible. I used the ‘Comfort Foods’ cookbook quite extensively.

    My wife had a photographic memory which was unaffected; however, there was a noticeable difficulty in her communicating her thoughts sometimes. In her case, again, I would credit fatigue and stress more than a physiological change due to the chemotherapy.

    Anything related to numbers (gambling, investing…actually, aren’t those the same thing?) I would think would best be avoided while taking any medication capable of reducing cognitive abilities. Of course, this is coming from the guy who proposed a contest the last time we were in Las Vegas of ‘who could make $20 last longer at nickel slot machines’ and lost his in under five minutes. More likely it was two minutes, using three of the five to find the machine I wanted. While she sat for a couple hours at a nickel machine surrounded by hard-nosed gamblers (and, no offense, but that would be the “little, old ladies” who growled “That’s my machine!” every time “I” sat down) who had stopped gambling themselves (from each of their commandeered “row” of slots) just to watch her. They told me they couldn’t remember a time when they had felt that much excitement while playing and found it even more enjoyable than playing themselves. Picture, if you will, a bunch of dedicated gamblers standing around a tiny, 5’2″ woman and cheering every time “cherries” (her favorite but the least valuable symbol) came up as a win. I sat down next to my wife (the “little, old ladies” said it was OK “this time”) and she asked me if I ran out of money? I said I did. Instead of gloating, she reached into her purse and pulled out a tiny coin purse. She opened it v-e-r-y slowly, pulled out a quarter, put it in my hand and asked me to play with her. I gave it back because, I said, “I’d rather watch you, too.” She put in another nickel and cherries came up again. She screamed and giggled as her winnings plunked into the metal tray.

    The power of cherries was “strong in this one” (Star Wars reference for “geek-week”) even when she wasn’t there. Once my former boss and I were working at a hospital in Henderson, NV and stayed in Las Vegas at the Monte Carlo. My wife gave me a dollar and asked me to play it on the first slot machine I saw with cherries on it. That first night he and I went to the Monte Carlo casino and I put that dollar in the very first “cherry” machine I saw. She won $12.

    Sorry, I know it’s off-topic but I was reminded of those moments and will always love telling those stories.

    • I found the black jack table interesting…..$20….won $60….;)

    • Wonderful images. I will not view slots again without looking for cherries.
      jcs

  4. Pinned this for both the information and the humor. Thank you for both.http://pinterest.com/pin/147141112798634342/

  5. Chemo… sigh… I’d like to blame everything on that. Convenient.

    Feeling crappy for 4+ months as nothing got the nausea under control (thus weight loss that did not stay off in the long run – so perhaps round two has to go to weigh watchers? LOL since the diet you eat while on chemo is not sustainable in the long run? On the other hand I was normal weight to begin with…)

    Hair thinning but no hair loss since rituxan and bendamustine (which is derived from mustard gas which they used to kill people with in WW1 so that has to be good for you – right? LOL) generally don’t make you lose your hair… combined with major skin (including scalp, etc.) problems, some of which I still have.

    Liver and bone marrow damage from said drugs so had to stop chemo early (along with chemical phlebitis so had to have a port put in)

    Clearly I must glow in the dark due to so many full body CT and PET scans (not technically counting as chemo but surely a first cousin since you can’t stop chemo until those test show NED or at least stable disease?) and someone needs to throw some serious money at some of that crap you need to drink as it is not good on top of already feeling nauseated. Surely there is something better out there (tried several different kinds of stuff including two kinds of clear – one of which is deadly bitter, the other you have to drink way too much in too short of a time).

    Anxiety, anger, stress, fatigue, memory issues… did I mention fatigue? (had to work full time through this – single parent no sick days). And now I am sure PTSD over some of this – scan anxiety, over reacted when another med unrelated to cancer treatments made me nauseated nearly 2 years later…

    I am understand now why two of my aunts quit chemo after relapsing twice… something about quality of life and feeling miserable… during chemo it starts to feel like the misery will go on forever and that dealing with life by putting one foot in front of the other day after day is sometimes just really hard… I walked out of the grocery store once in tears, leaving my cart behind, because I was too fatigued to deal with it. Now two years out I can forget, a bit, about how horrible I felt at the time, the days that felt like they were 23.5 hours too long… and I know I will have this again as this most recent cancer has no cure. Fortunately forgetfulness – a bad thing when it is work or life related – is a good thing when it comes to how horrible I felt for so long because I won’t really remember how bad it was until it is once again too late and I have already had chemo again.

    I’d like to blame on chemo the fact that my house still isn’t completely picked up 2 years later (useful excuse during the misery and actually it really was just too overwhelming to deal with anything that wasn’t going to bite me in the rear right then and there if I didn’t do it); that my career is stalled; that I haven’t washed my car since 2010 (of course it is 23.5 years old and looks it so does it really matter?), the current state of my finances (actually that may be legit since I have hit my deductible and out of pocket every year since 2010 and the office visit copays never go away), Oh yea, still need to do one year of taxes (pops)… but hey – attribution error, when dealing with an “n” of 1 is pretty high. I mean if it happened during or after chemo then chemo has to be to blame? Right? LOL.

    Due to all the confounding factors it would be, I would imagine, hard to tease out what is cancer related, chemo related, stress related, “bad stuff just happens” related… interesting there is nothing on your list that is good except perhaps chemo killed some bad stuff off and that someone else gets to do the cooking…

    What I found interesting in that research is that there is the hint that having cancer might be the trigger for some of these problems since some people suffered them even though they had no chemo. Is this just stress/anxiety related or does the cancer give off stuff that affects the brain… ? Be interesting if someone can figure that one out. Perhaps a longitudinal study giving cognitive tests and a symptom checklist to people getting mammograms or other routine cancer tests and keep doing it for a pile of years seeing if the decline/symptoms, what people’s stress levels are… happens before the dx or after…

    Personally, having had chemo, I’d like a get a ‘get out of jail free’ card to blame anything that is bad that happened during and after chemo on chemo and then be able to escape the consequences of that… rather than have to be a grownup and deal with it.

    • It is bizarre that into the middle of an overwhelming battle we throw a treatment which makes things so confusing that we cannot tell the disease from the treatment or from our emotional reaction to the disease and/or the treatment. A cosmic practical joke.

      jcs

      • Oh I think you can tell them apart in the sense that emotions/symptoms related to the disease start before emotions/symptoms related to the treatment and they are, to a large extent (but certainly not always or completely), different. Perhaps not true with all cancers but at least true with the ones I have had. Fatigue and nausea were part of one cancer and part of one treatment. Treatment made both worse. When I was done with treatment the nausea went away but not the fatigue. Of course the reason for the fatigue may or may not be different (depression? poor sleep? continued disease? fall out from treatment? hypochondria?… who knows).

        To the people who say getting cancer and subsequent treatment was a blessing (WTF???) all I can say is treatment destroyed the common sense part of your brain. There is not one thing I can think of that would make it worth having had cancer and going through treatment. Not one.

        • I have to agree with you….

  6. I must be feeling better, because this made me laugh, out loud. I once said that chemo cured my fungus toenail, but it’s back, so I guess not. I will say that chemo kicked my ass, took me to the edge of physical tolerance and mental endurance. But chemo also killed my cancer, thus allowing me to live, so I guess it was worth it.

  7. My question is about the neurological affect of any anesthetic or medications….knowing people who went through severe trauma etc….who develop addiction problems….multiple surgeries, pain medications etc.

  8. This post has me reliving many things about chemo but one of them, although fleeting, was something that did make my wife happy. A little back story…

    My wife was hyper-sensitive to many medications which we found out as we went along. It took us three oncologists before we found our “Dr. Salwitz” (a reference to a doctor that “got us”) and one willing to go slow with chemo. She had nearly died from episodes with inject-able iodine, Lorazepam and Zometa. The first oncologist wanted to go with the fiercest of regimens with the consolation that we should consider how much they “will learn from your death” which even he admitted was likely from his prescribed course. The second told us that no one had ever had a severe reaction to Zometa to get her to try it. My wife went into a comatose state after her first treatment from an unexplainable (and thought irreversible) decline in her WBC and blood pressure. The nurses had covered her with several warmed blankets leaving only her head exposed. Her face was cold to the touch and her lips losing color. I was told by the hospital physician to assemble the family. I called them but said, “She’s not dying tonight!” knowing there was really nothing I could do about it. All I could think of was my mother saying wear a hat otherwise all our body heat would escape through the top of our heads. So I put my arms through the bed railing (so they would stay in position should I fall asleep) and placed both my hands on top of her head. I’m like an oven. Although unresponsive, I just kept telling her to pump…pump her blood. At 3am she woke me (and my now bed-railing indented face) by asking me to take my hands off her head…they were too heavy. All her vitals had returned to normal. She told us later that all she remembered was that someone kept telling her to “pump” and asked what that was all about. I know I had nothing to do with her recovery but her fixation on my voice was, in retrospect, prescient of later events. The oncologist’s response to all this…she should “peel any fruit before she eats it” and asked if we would like to meet with another of her patients who also nearly died from Zometa.

    After much discussion with oncologist three, he suggested that we try Herceptin alone and, if that went well, add Xeloda. Now comes the happy part. The Herceptin worked great! All of her tumors shrunk to nearly non-detectable size. She was called “the darling of the tumor board” and we were told a paper with her results was being written about her. With chemo you take your happy where you can get it but who doesn’t want to be considered special? My wife certainly did, she most certainly was and she never took advantage of that.

    Unfortunately, only one person had been known in clinical trials to have sustained that degree of remission and my wife’s tumors ultimately began to grow again at an accelerated pace. But for a time, she was happy, nearly side-effect free and able to do most everything she wanted to do. I agree that chemo is a very harsh and primitive therapy. This is just to give it a little “equal-time” blame.

  9. It will indeed be a great and wonderful day when you can speak of cancer in the past tense..

  10. I have been on continuous chemo for four years, on my 7th, plus herceptin, perjeta and zometa. I have certainly noticed some cognitive defects, mainly in word retrieval and yes, in anything to do with numbers. I also do have quite a bit of joint pain and muscle aches, which makes the losses at Atlantic city understandable – once you sit down it hurts to get up again.

    Oddly enough, my grown child has moved in with me again. Had not thought of that as a chemo side effect but if so, it’s a good one. And, my husband now does most of the cooking – not because he’s good at it but because I am too fatigued – worse, I don’t care that it gets done. My appetite is gone and food is the last thing on my mind, which is unfortunately reflected in my weight.

    All these minor problems are a small price to pay for precious life. Having metastatic breast cancer to the liver, I know my time is short and the words “when people still got cancer” won’t happen in my lifetime, but it’s a lovely thought. My youngest son is interested in medical research and who knows? Maybe he’ll be one to help solve this problem.

    Thanks for an interesting blog.

    • My pleasure… thank you for sharing your battle.
      By the way, I love your email handle.
      jcs

    • I am so sorry….I have a young son who is kind of keeping his distance for fear his dad or I might not be around a long time….Me with a BCDCIS before his birth and his dad with cardiac surgical implant. I bought a subscription to Cooking for my husband. I found it incredibly wonderful that you move through the side affects as an experience..knowing and verbalizing fully intelligent and cognizant…bravo! Total sincerity here…Love the handle as well!

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