My Story Part 5: Side Effects

You’ve probably heard about some of the possible side effects of chemo or maybe even experienced them yourself.  There are lots of possible side effects and unfortunately I experienced most if not all of them.  The side effects started after the the very first infusion and worsened after every infusion from then on. Nausea seems to be the one common side effect that most people going through chemo experience.  It’s not just a “regular” nausea.  It’s an awful sick feeling that’s hard to explain.  For me this started from day one.  They tried to keep it in check by using several different drugs, and I’m sure if would have been worse if I hadn’t been using the drugs, but it persisted nonetheless.  And all I’ll say is that it’s absolutely true about the “weed”.  After four months someone at the hospital asked if I had tried it.  I hadn’t at the time, but gave it a try.  With all of the expensive chemicals they were giving me to control the nausea, that was the only thing that completely eliminated it.  It’s a true shame that politics gets in the way of cancer patients legally receiving a form of nausea treatment that really works.  The tide seems to be turning and hopefully soon we won’t have to worry about that anymore.

My infusions started December 29 2006.  It was cold outside and that wasn’t good because Oxaliplatin causes extreme sensitivity to cold.  They told me I would have to cover my face and keep all of my skin covered when going outside and that was very true from day one.  When I left the hospital that first day,  as soon as I went outside and the cold air touched my face I could feel a burning sensation and couldn’t breath in because it choked me.  I had a scarf with me and had to cover my entire face with only my eyes exposed so I could see where I was going.  This sensation got worse after every infusion.  I remember one time I went to a store by myself and forgot to bring a scarf.  I could feel the cold air stinging my face.  When I got home I looked in the mirror and noticed I had small blisters on my face.  That was the last time I forgot to bring a scarf with me.

The cold sensitivity wasn’t just external.  For over six months I couldn’t eat or drink anything cold.  It would cause the same burning sensation on my tongue and even caused my throat to close up.  For that entire time period I drank mostly warm Gator Aid.  LOTS of Gator Aid.  I picked Gator Aid because of the constant diarrhea.  I wound up in the hospital once due to dehydration so I went through a lot of the stuff.  I didn’t mind its blandness because I couldn’t taste anything anyway and even today I don’t mind drinking it as a regular beverage.  I drink it cold now though.

Metallic taste in the mouth is another common one that affected me big time.  Food tastes so bad I just don’t want to eat.  I used snack on  those very tart life savers in a tin just to experience some flavor.

There were also painful side effects.  I developed mouth sores which was yet another reason for not eating.  I had to gargle with salt water but it didn’t help much.  The Oxaliplatin caused the tips of my fingers and toes to split.  It was mainly in the fingertips.  My sister in-law gave me some of that skin sealer that’s essentially Super Glue to try and keep the cracks sealed but they always broke open.  My fingernails also became brittle and didn’t grow much.  Before bed I applied moisturizer to my hands and used cotton gloves to try an keep my hands from drying up.   Oxaliplatin also caused jaw spasms when attempting to eat after my infusion day.

And then came the Peripheral Neuropathy.  Oxaliplatin causes peripheral nerve damage.  Over time my fingers and toes began to get numb and tingle.  My oncologist used to test me to see if I could still button and unbutton my shirt, and over the weeks it became increasingly more difficult to do so, partly from the numbness and partly because of the pain from the cracking.  I believe at one point he reduced the oxaliplatin dose because of this.  As it turns out, the Peripheral Neuropathy was the nastiest side effect of them all.  The effects of the Oxaliplatin accumulate over time.  What this meant was that I didn’t experience the height of the Oxaliplatin side effects until after I completed chemo in late May of 2007.  A few weeks after completing chemo, the bottoms of my feet began to burn badly and my finger tips became very numb and tingly.  That summer I saw a Neurologist and he confirmed that it was the Oxaliplatin that had damaged my peripheral nerves and that it may be 18 to 24 months before it resolves, but also said that it may not resolve at all.  Well, it’s been over 2.5 years since I completed chemo and not only has it not resolved, but it has actually gotten worse.  If my feet get hot they feel burning hot and if they get cold they feel burning cold.  It seems to transition from one extreme to the other with only a few minutes of minor releif between transitions.  I have no reflexes in my ankles and the surface of my legs are numb to the touch.  Not only do my feet burn but they also feel numb and tingly and ache all the time.  I’ve tried many different drugs, most of which were ineffective and all of which caused their own side effects.  I even tried Lidocane infusions.  Yes, the stuff you put on bug bites I had pumped into my body.  At first it seemed promising but in the end it had no long term effect so we stopped.  I’m now using a Fentanyl patch again.  I noticed that when I get my annual colonoscopy my feet don’t hurt after the procedure.  It’s the Fentanyl.  So I asked if there was a dose I could take daily and I was told there’s a patch.  It’s similar to the patch smokers wear in order to stop smoking.  It provides some relief but doesn’t eliminate the burning completely, and so far it looks like it peters out during the second day, one day before I’m allowed to remove it and apply a new patch.  I guess some relief is better than no relief at all.

Starting to see a pattern here?  Oxaliplatin is NASTY stuff.

Most of the side effects were caused by either the 5FU or the Oxaliplatin.  But there was one other really bad side effect that was caused by Erbitux (Cetuximab).  As mentioned in a previous post, I was given the opportunity to partake in a clinical phase III trial that was to combine FOLFOX with Erbitux.  I accepted.  It was supposed to be a blind trial but one of the major side effects is s severe rash on the face chest and back.  So essentially, if you got the rash you knew you got the Erbitux.  I got the Erbitux.  By the time I came back for my second infusion a rash had already developed on my face.  After each infusion the rash got worse and eventually covered my face, parts of my head, the top of my chest and my back.  It looked like the most severe case of acne you’d ever seen.  Often the sores would open and bleed, especially in bed.  I pretty much destroyed all of my pillow cases.  I used all sorts of lotions on my face to try and keep the rash and red face down but it was always there.  I looked horrible.

I’ve talked about the physical side effects but there are also mental side effects.  There’s a condition known as Chemo Brain where your thinking gets foggy, you forget things and you generally aren’t sharp.  That hit me badly and I still haven’t recovered full function.  I still blank out while doing work on the computer and can’t organize well.  I’ve always had concentration issues but after the chemo it got much worse and still remains a big problem for me.

I went back to work full time in August of 2007 just a few weeks after completing chemo.  I had been working a few hours a week during chemo to supplement my disability income and just to try and keep my job but I couldn’t do much.  After chemo I rested for a week or so then started at 20 hours, 30 hours then finally 40 hours.  Looking back, I pushed myself too hard and it caused my health to decline rather than get better.  I rushed back to work because by all accounts that’s what you’re supposed to do.  Get back on the horse and fight through it.  I have a family to support and a house to pay for.  Unfortunately, while fighting through the daily pain, nausea and memory issues I started to experience tremors which I have to this day.  My hands, arms and even my body shakes and it comes from deep inside.  It’s an awful feeling.  There are also other issues that I’m not going to discuss here.

I’ve probably missed a few but you get the picture.  Chemo is a living HELL.

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