Saturday, November 28, 2009

Chemo Survival Guide (a.k.a., Therapy for Chemotherapy)

(originally written November 28, 2009; last updated December 21, 2012)

Introduction
If you’ve read my story, you’ll know that I had to undergo 6 rounds of intensive chemotherapy. Though that was quite the ordeal at the time, it now (not even a year later) seems like a distant memory. Today my health is fine, my life is great, and in many ways I’ve “moved on”. But yet I realize that for others, their journey is only beginning. Furthermore, in retrospect, I only wish I knew then (heading into Round #1) what I know now. Therefore, before I forget everything I’ve learned along the way, I figured it would be time well-spent to document my personal Chemo Survival Guide.

Disclaimer Section
The legal department asks that I make clear that I am not a doctor and that I am not offering medical advice. What I share below is what worked for me during my cancer treatment; your mileage may vary. Please do not rely on anything that is said (here or anywhere) without first consulting your doctor.

Also, having talked to quite a number of cancer patients and having exchanged many "war stories", the quantity and severity of the issues I experienced seem to be worse on average than what others have described.  I want emphasize this right up front as I do not wish to scare anyone or lead them to believe that "this is all going to happen to me too!"  Chances are you will have fewer and/or less severe side effects than what I went through.

My Chemotherapy Treatment
My chemotherapy consisted of 6 three- or four-week cycles administered over a four-month period. Each cycle included 4 – 5 days of inpatient treatment with the tough AIM regimen (Adriamycin [generic name: Doxorubicin] + Ifosfamide + Mesna [a urinary tract protector for use with Ifosfamide]) followed by 2 (and sometimes 3) weeks of at-home recovery. Over the course of these treatments, I learned about:

Battling Nausea
For me, dealing with frequent nausea was one of the most difficult parts of my treatment. The nausea would typically start the Tuesday of my hospitalization (after 1 day of chemo), would peak that Saturday (a day or two after my last chemo infusion), and would persist well into the next week. But by week three, I was generally feeling much better and could eat normally.

It’s really strange what the chemo does to your system. My sense of taste and smell were both greatly exaggerated (as if on steroids). So many foods were surprisingly different than what they were like prior to chemo (and often repulsive). For example, I couldn't let anyone drink coffee around me because it smelled so bad (especially flavored coffee), and I’m a coffee lover! I eventually did go back to coffee, but that was a month after all 6 rounds of chemotherapy. Today (post treatment), everything food-wise has returned to normal (though sadly this means that I gained back all 30 lbs that I lost during treatment).

To combat nausea, I found that it’s important to:
  1. Eat Something – eating on a regular basis and having some food in your stomach is very important to fight off nausea. Find the foods that you like and are agreeable with you. Whatever sounds good is what you should eat. If you can, try to avoid the smelly hospital food whenever possible (or at least be very selective with your ordering). During my hospitalizations, I would often have a Dark Chocolate Ensure (which I kept on ice in my private cooler) for breakfast. For lunch, my wife Holly would bring me a special meal of my choice (typically carry-out from a favorite restaurant). What a lifesaver!
  2. Walk – light exercise is also good for helping to fight nausea. Each day I would try to walk 40-50 laps of the 7th floor (chemo pole in tow) there at Crawford Long (i.e., typically twice a day I would walk 20 – 25 laps). This may also help improve overall energy levels.
  3. Take a nap – Chemo will wear you out, so it’s important that you get plenty of rest. I found that it was pretty much a necessity to nap for an hour or so every afternoon.
  4. Find the drugs that work for you – I’ve always been a minimalist when it comes to taking drugs. The fewer the better! Despite this, I quickly learned that nausea was a major problem for me and that I needed to figure out what drugs were most effective in fighting nausea. For me, these were: 1) Zofran or Kytril, 2) Compazine, 3) Ativan, 4) Emend. I would generally alternate Zofran (or Kytril) with Compazine during the day and take an Ativan before going to bed. Many people (my wife Holly included) also had success with Phenergan tablets (especially at night), though it gave me weird dreams so I couldn’t take it (I used Ativan instead).

    During Round #4, I discovered Emend, which works in conjunction with these other anti-nausea drugs, but did way more for me than anything I ever tried. Emend is designed to be taken both the “day of” your chemo (for those lucky enough to be getting chemo only 1 day at a time) and afterwards for the two days subsequent. But my oncologist was concerned about the Emend impacting the effectiveness of the chemo and possibly even causing a rare complication called neurotoxicity. She was, however, willing to let me start the Emend the day after my chemo. And since I did not have Emend in the hospital, my doctor prescribed 4 pills to cover me for the next 4 days after chemo (please note that Emend is packaged as a 2-pack by the manufacturer). It’s also important to note that you cannot already be experiencing nausea when taking Emend or it supposedly won’t work. So, to meet that requirement, I ended up taking a Zofran around 5:00am - 6:00am (while in bed) and then took the Emend at around 7:00am - 8:00am when I got up. It worked!
Painful Neulasta shot
Most chemotherapy patients are required to get a Neulasta shot the day after chemotherapy (used to reduce the risk of infection by stimulating the production of white blood cells). Though the shot itself is relatively painless, a common side effect of Neulasta is bone pain and/or muscle aches. Though I was fortunate enough not to have experienced any such such side effects, my wife Holly and many others that I know had considerable bone pain.  For some, in fact, this can be the worst part of chemotherapy treatment.

One other thing that’s important to note here is that this Neulasta shot is very expensive (in the neighborhood of about $4,000). Even though I had great health insurance, my pharmacy co-pay for this was about $775. It turns out, however, that my co-pay would have been $0.00 (zero) had I simply gotten this shot in the infusion center rather than picking it up from the pharmacy. Why? Because I had long since met my out-of-pocket maximum for medical but I had not even come close to my max for pharmacy. Yup, these insurance guys have all the bases covered. With that painful lesson learned, I can assure you that I went to the infusion center for rounds 2 – 6. Please keep this lesson in mind as it is likely that your insurance works similarly.

Other side effects of chemotherapy treatment
Though nausea was probably the worst part, there are several other things in the “honorable mention” category, including:
  1. Constipation – sorry, but I have to mention this one. Between the chemo, the anti-nausea drugs, and the iron pills my doctor had me take, it was difficult to stay "regular". Now normally I would take a fiber supplement to help (such as Metamucil), but my nausea was so severe that I simply could not stomach it. About the only thing that worked for me was the “red pills” (i.e., Peri-Colace or generic equivalent). I would take several of these each day. Turns out my doctor is a big believer in keeping her patients regular and, if I had not “gone” in the last 2 days, she would ask me to drink the better part of a 10 oz. bottle of Magnesium Citrate. Though somewhat unpleasant, it got the job done. I ended up purchasing several bottles of this over-the-counter remedy for my recovery time at home . . . just in case.
  2. Mouth Sores – I never had too much trouble with this myself, but this is quite common for high-dose chemotherapy patients.  Why does it happen?  Possibly due to a condition known as Mucositis, which refers to the thinning of mucous membranes (as an adverse effect of chemotherapy) that can lead to inflammation and ulceration.  For those that I've talked to who experienced mouth sores, it typically peaks around day 10 of the cycle but then goes away once your blood counts return to normal.  If you experience this, please talk to your doctor as they may suggest a special mouthwash or other treatment to ease symptoms.
  3. Pain in the butt (literally) – Yes, I know, this just keeps getting worse by the minute! But for the sake of "full disclosure", I think this one is too important to not to mention. I started feeling this pain sometime after my 4th cycle (during my worst neutropenic fever episode). As my counts continued to drop, my (is there a nice way to say this?) anus really hurt. The pain would last 5 - 7 days and was most pronounced when my counts were at their lowest (around day 10). I found that a sitz bath provided some relief for this discomfort.  Once my counts returned to normal, the pain would mercifully subside. Be sure to let your doctor know what's going on here.  If the pain becomes severe, they may need to prescribe something to help manage the pain.  This pain might also be related to Mucositis (described above).
  4. Anal Fissures – An anal fissure is a (small) tear in the lining of the lower rectum (anus) that causes pain during bowel movements, which can also trigger anal spasms and, hence, more anal pain.  I wasn't aware of this condition during treatment, though (in retrospect) it may have been a contributor to the anal pain I described above.  Apparently fissures are very common among people going through high-dose chemotherapy.  Though fissures typically heal on their own between rounds of chemo, keep you doctor in the loop here as you do not want this to develop into a chronic problem.
  5. Fungus – Once your counts start dropping, your immune system weakens, leaving you are susceptible to bacterial and fungal infections (the latter of which was news to me).  The fungus I had targeted the private areas below my waistline (both front and back side). Symptoms include: painful skin irritation, redness, burning, and general discomfort. I battled this as best I could with over-the-counter anti-fungal creams and had mixed results. Be sure to let your doctor know what's happening here, however, as fungus can quickly become severe and may even require hospitalization.  In my case, the fungus would subside once my counts returned to normal.
  6. Eye Twitch – I had issues with this on and off over the course of my treatment and nothing seemed to help (in fact, the drugs only caused other problems). I quickly learned to accept the twitching and to ignore the problem. This all went away after treatment.
  7. Fingernails – I never lost my nails (though some people do), but mine did get weaker and often tingled and ached. Several of my nails also noticeably loosened up from their nail beds. The other interesting thing was that each round of chemotherapy would put a white line on the base of my fingernails. Before all 6 rounds were over, I had some interesting looking fingernails with tree-ring-style white lines running through them. I regret that I never took a picture of my nails, but here's an example picture to show you what I'm talking about: Chemo Nails  Mine looked similar, just not as bad.
  8. Chemo Brain – I'll be honest and say that I had Chemo Brain (think of it as a mental fog) for much of the duration of my chemotherapy (especially during the first two weeks of each three-week cycle). As a software developer, this was particularly frustrating as it made it virtually impossible to do any problem-solving. What's even worse is that I had no ability (or at least no desire) to read books, watch TV, or even play games on my computer or Xbox. Indeed the fog was thick, but it eventually lifted and I feel clear today.
Be prepared for the week after chemo
I originally assumed that if I made it through the week of chemotherapy in the hospital I was pretty much home free, but that’s simply not the case. For me, my white counts (in particular my neutrophil count) dropped to their lowest at around Day 10 of my cycle . . . and I could usually tell when I hit bottom because the negative side effects where at their peak. Typically, if I was admitted on a Monday (Day 1) and discharged on a Friday (Day 5), my worst day was the following Wednesday (Day 10).  You too will likely bottom out at about the same point in your cycle (give or take a day or two).  Given that an infection is most likely to occur when your neutrophil count is low, you'll want to make sure that you have a friend or family member “on call” throughout that time in the event you need to go to the hospital.

During my 6 rounds of chemo, I was hospitalized 4 times due to Neutropenic Fever, but recovered just fine from each incident. In fact, after Round #4, my Absolute Neutrophil Count (ANC) dropped to 18, which is about as bad as you can get without going all the way to zero.  I mention this not to scare you but so that you won’t be scared should you ever need to be hospitalized.  According to my oncologist, this happens quite regularly, yet her patients always seemed to bounce back just fine.  Even so, it can be a darn scary experience all the same . . . especially if you're unaware of just how low your counts can go!

Just don't let these "dire warnings" drive you into seclusion either.  From what I've read and been told, most bacterial infections result from your body's inability to fight off normal bacteria present in your gastrointestinal tract or skin rather than from being in a crowded place.  Even so, use common sense about where you venture when you know (or think) your counts are low.

Should complications arise . . .
Make sure you talk with your doctor and find out exactly what the procedure is if you have complications after chemotherapy. My doctor asked me to contact the "on call" doctor if I had a fever of 100.5 (or more). Based upon my current temperature and how long I had the fever, the doctor could advise me to go to the Emergency Room. But that honestly did not always work too well as it often took hours to go from the ER to actual admittance into the hospital. It would have been better if the doctor could have somehow admitted me directly, thus bypassing the ER altogether. Others in my sarcoma support group have similar stories and it is my understanding that the Emory hospital system is trying to improve this situation.

But the point here is that you need to know how this process works with your doctor, your hospital, and your health insurance. And if you do need to go through the ER (which is fairly typical), be sure to find out what your doctor can do to speed up the process. For example, on one of my unscheduled visits, the doctor called ahead to the ER and they got me to the back immediately and I was admitted to the hospital within an hour. Just be sure to tell them when you check in that you’re chemotherapy patient and that you’re running a fever. That alone should signal them to move you out of the waiting room ASAP.

Learn and know your body’s signals
It was important to me to be able to distinguish between a chill that might indicate a fever and one that could signal that my body was kick-starting its immune system. A simple thermometer, a little common sense, and going through a round or two of chemotherapy will aid you in making this important distinction.

For example, I've already stated that I was hospitalized 4 out of 6 rounds for neutropenic fever. The early onset of this includes general fever symptoms, such as extreme fatigue, chills, and high-temperature. But within days of each fever I also experienced some rather odd symptoms that at first I mistook for a recurrence of the fever. I would experience night sweats, often which was accompanied with a type of chills (or tingly wave) coming over my body, but all without any fever whatsoever. The sweating was quite strong and came from my head, chest, and back area while I was sleeping. I quickly learned, however, that this was my body’s way of telling me that it had begun the production of white blood cells. I also learned that I needed to sleep with a towel on my pillow and one on my bed since I would otherwise pretty much soak my pillow and my sheets with sweat!

Some doctors have seemingly validated my theory, stating that “everyone’s body signals them in a different way. For you it is night sweats; for someone else it could be something completely different.  Such sweats are likely the result of your body's engine firing up production of white blood cells.”  And for whatever it’s worth, at least one other person I know experienced something similar when when she was going through chemo.

The lesson: learn and know your body’s signals. For me, it was really encouraging to know that I was on the mend without having to wait for the doctor to tell me!

Attitude is important!
After only one cycle of chemotherapy, I found myself back in the hospital with neutropenic fever. I certainly was not expecting complications (at least not that early in the treatment schedule). The prospect of 5 more rounds of this was frightening.  But then someone left this simple, yet encouraging, comment on my blog: “it’s temporary, it’s temporary!” Indeed, the treatment is temporary, the nausea is temporary, and generally the other side effects are temporary (even the weight loss). It’s so important to realize from the beginning that chemotherapy does not go on forever, even though at the moment it might be overwhelming your life. Take solace in knowing that others too have persevered and remind yourself daily that it’s temporary.**

My wife and her cousin (both breast cancer survivors) used to refer to their chemo infusions as "Spa Treatments".  Their "code" for heading to the infusion center was "I have another Spa Treatment today". It makes me laugh most every time I hear it, and laughter is so darn important, especially during treatment.

A friend of mine (with an identical diagnosis) is currently going through the same chemotherapy that I had. And though nobody (that I know of) actually enjoys their chemotherapy or in any way looks forward to being infused, I have to say that this guy maintains a remarkable attitude. With his permission, please allow me to share a brief excerpt from our correspondence:
Spirits are still good and pretty even and did not need transfusion (though I was pretty dragging walking into the hospital I must admit). Man, being that wiped out gives me much more compassion for what many others, including the elderly, must be feeling much of the time. This said, I'm up for chemo cycle #4 on Monday! Bring it on, take me down, and send them sarcoma invaders to another dimension!
Attitude is also important to monitor because the chemo itself can sometimes trigger depression. One poster (who has worked with hundreds of sarcoma patients) made this comment:
Just so you know, the chemo can also cause changes that send some people into clinical depression, even people who have NEVER dealt with that before. If this happens, it's just a chemical thing and has nothing to do with "weakness" or "not being positive enough." So if Dave's overall mood changes, keep the docs informed. A LOT of the patients I know have gone on anti-depressants at some point in their treatment.
Find Support
Support (especially from family and/or friends) is essential for getting through your chemotherapy. Several sites are listed with this blog and local support groups are often available as well. If possible, try to find someone with a similar diagnosis and treatment plan but is months (or years) ahead of you in terms of treatment and recovery. This type of peer support can be a tremendous asset in that it shows you not only that people survive this, but also gives you some idea as to what to expect (short-term, long-term, etc.).

And speaking of support, I personally have found that music can be very inspiring. Recently, at my 1-Year NED (No Evidence of Disease) Anniversary, I put together a list of my favorite “feel good” songs, including lyrics. Though you may prefer a completely different genre of music, don’t underestimate the importance of music and how it can encourage and lift a person’s spirits.

Questions? Comments? Your suggestions?
I hope this article in some way helps you or a loved one better manage their chemotherapy. Again, this was my experience going through intensive chemotherapy; your experience may be different. If you’ve gone through a similar regimen and have constructive things to add, please post your comments below. Or, if you or someone close to you is about to start treatment and you have questions, please post those below or email me (scroll down to the Contributors section, click on Dave Novak, and you'll find an Email link there).


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** Though the symptoms and side effects described here are generally temporary, it should be understood that some people do, in fact, encounter long-term and/or "late effects" from chemotherapy. See http://sarcomahelp.org/treatment_side_effects.html for details.

8 comments:

nan said...

Great post Dave! I hope you don't mind, but I shared it on my Facebook page so others can benefit from your experience.

Dave Novak said...

Awesome -- feel free to share this as you see fit!

empy said...

It's so good of you to share your experience, Dave! I'm glad you made it through all that and can point people to the fact that there are better days on the other side. :)

Another support group leader and I put together some helpful hints about treatment as well - they are here: Dealing with the Side Effects of Sarcoma Treatments.

Dave Novak said...

That's an excellent reference -- thanks for sharing it with us!

Dianeags said...

ty for your blog. I would like to add another side effect of chemo: bloating probably from all the hydration. My husband (pleomorphic liposarcoma of rt thigh)gained 20 lbs. This left him miserable. He had 1 dose of lasix in the hospital, but was not allowed any once he left. the dr. said this side effect would dissipate over the next few days after the end of chemo. Other than being tired and having hiccups, it was his only bothersome side effect. I think he is very lucky.

Dave Novak said...

That just goes to show how true "your mileage may vary" is when it comes to each person's experience with chemotherapy. I too had the hiccups off and on during the first 2 rounds, but thankfully they never persisted.

Thanks for your comments.

Andy said...

Very glad to hear that you are doing so well Dave!

I would like to add that in my opinion the safest and most effective drug to combat nausea from chemotherapy is marijuana, and it's a shame that the negative stigma attached to this plant prevents it from being freely and legally used by those who would most benefit from it.

Dave Novak said...

I've heard the same from a number of objective sources. It's a shame that medical marijuana isn't a widely available (legal) option.