My Particular Experience with Chemoradiation (long)

[wrend]

I thought I'd post my particular experience with chemoradiation, now that I'm feeling better. I took 2,500 mg of Xeloda (1000 and 1500, one every 12 hours). Hopefully, it might someday prove helpful to someone else. I began treatment on January 25th. I had a tough time. Firstly, my rad onc did not want me to have radiation because I have celiac disease, my small intestines are closer than normal to my rectum and I am thin. He said in his experience I would most likely have problems although I don't recall if he said what those might be. However, since the chemoradiation reduces the chance of local recurrence, I did not want to forgo that treatment. I have five children (four still at home) between the ages of 14 and 34 (plus three beautiful grand babies ages 3-7) so that was not an option for me. So, the rad onc and department did a lot of extra planning to accommodate my particular issues.

I did pretty well through the first four weeks, other than being tired. I had to travel 120 miles to LA for treatment Monday through Friday on a shuttle provided by Kaiser which contributed to that. In addition to waiting for and receiving my treatment I also had to wait for up to 11 people to complete their treatment and visit the doctor if needed before the shuttle took us home. I left the house at 11:30 and usually got home at 4:30 - depending on traffic. One day multiple radiation machines were down and it was rainy (AND the shuttle battery died and needed a jump) and there were several accidents. I didn't get home until after 6:30 pm. I had the usual lack of appetite (low residual diet doesn't help with that) funny tasting food and water etc., took a zofran only three times for nausea. Oddly, my stools were normal most of the time even though before surgery I pretty much had constant diarrhea. Had the usual painful rectum but it really wasn't too bad. I had norco for that. The fifth week I started getting intermittent lower small intestinal pains. Finished up the chemorad on February 26th.

Then the real fun began. The abdominal pains continued to worsen. I was still taking the norco I had been given during the chemorad for the pains. I have normally low blood pressure. Depending, it usually runs between 88/58 and 110/70. I passed out getting out of bed and walking to the (upstairs) bathroom four times before I decided it was more than a combination of being weak and the low blood pressure. All the kids would come running when the they heard me clunk on the tile floor. As some of you may know of by now, it was because I was dehydrated. And dehydration (I learned) lowers your blood pressure. I, however, did not know any of this at that point. At the urgent care they promptly sent me by ambulance to the ER because my blood pressure was really low (where I waited hours before getting a bed and fluids). A couple of days later I visits urgent care again but for worsening abdominal pains. They gave me an injection of toradol. BUTT once again, they were much more concerned with my blood pressure. I had to drink some nasty tasty potassium and they wanted me to again go by ambulance to the (local non-Kaiser) ER. Forget that! I had to sign out against medical advice and my husband drove me to the nearest Kaiser hospital 50 miles away. Kaiser would at least have access to my existing medical records. We figured that would require less redundant testing and questions etc. I again got fluids and potassium (pills this time, yay) and a CT scan. The CT scan showed radiation enteritis which is what I had already knew but it was good to have confirmation doctors could see. Other than that, they sent me home. A couple of days later while I was at Kaiser getting blood work, I wasn't feeling too well. I went to see a nurse to get my blood pressure taken. Guess what? Low again. 60/44 (I don't recall all the other low BPs. Just the last one. Too many.) So they called my PCP over. He wanted me to go by ambulance to the local ER and be admitted for observation. Declined that again against medical advice. Had my daughter drive me over. Got in quickly this time but once again a toradol shot, potassium and fluids (and the usual blood tests etc). Then they released me. No observation. Ugh.

During this process I was also seeing my PCP for the radiation enteritis pains and trying different pain killers and dosages as the pain continued to worsen. I had moved to from Norco 5 mg to 10 mg. To Percocet. From 5 mg to 10 mg. Even then pain was bad and kept me awake, even with ambien. One night (March 17) I was in intense pain: drenched in sweat, hyperventilating, shaking, sitting cross legged on the bed with two small pillows in my lap, bent over with my forehead on the bed. This was the position that reduced pain a bit. A wee bit. I could not have my husband drive me to ER because I could not move out of my pretzel-like position. And I certainly did not want to sit for hours like that at the ER (our ER is famous for huge waits). My daughter called the local ER but they refused to tell her how crowded it was or even if they had something other than morphine they could give. My husband called 911 though I had explained to him I could not move out of that position, I am allergic to morphine and I needed to know if paramedics carried something besides morphine they could give me for the pain. Otherwise, it was pointless to call them. So, the paramedics arrived. I explained my situation. They only have morphine. They and my husband tried to convince me to straighten out so I could get on the gurney and go to the hospital. I explained again I could not do that. They started downstairs to leave but one paramedic stuck his head back into my bedroom and quietly told us they had just left the ER and not to go there because it was filled to the brim. At this point I googled percocet dosages and determine I could take 20 mg and decided to do that. Duh. When I grabbed my bottle of 10 mg Percocet I realized it said take 1-2. Since my PCP had recently increased my dose from 5 to 10 mg it didn't occur to me I could take two. Lesson learned. Read the label more carefully. The other mistake I made was taking the pain meds only when I was in pain. The pain came in waves and was intermittent so I wasn't doing that. Once I begin taking the 20 mgs every six hours the pain was under control and mostly bearable. By about April 8 the pain was lessening and I was able to start reducing the amount of Percocet. About a week later I was only taking 5 or 10 mg periodically as needed. Not too long after that I was able to only take 5 mg once in a while.

I weighed 134 (I am 5'9") at the beginning and end of chemorad. However, afterwards I lost over 16 lbs, down to 118. I am up to 124 lbs now. It helps that I am able to eat a normal diet, yay! While I had the abdominal pains the onc continued had me on the low res diet with no dairy.

Now, in hindsight, and knowing what I would go through I would still make the decision to undergo chemoradiation treatment. While it was certainly no picnic, to me it is a small price to pay to increase my chances of being around for my kids.

My LAR is scheduled in a week and a half (May 11) and I am working on getting stronger and fatter! It's only the couple of weeks that I have gained back some strength and stamina but I continue to get stronger.

[AppleTree]

You had a rough time of it. Glad you are feeling better. Best wishes for your upcoming surgery.

I has 25x radiation with 3000 mg Xeloda M-F. The worst was week 5 of radiation and the 2 weeks after. Not feeling so well for 2.5 after was a surprise for me - I just wasn't expecting that! They gave me 20 drops of Novalgin every 6-8 hours, a few days later up to 30 drops and finally 40 drops. I only needed 40 drops for a few days, went back to 30, then 20 and then stopped altogether post 2.5 weeks. But when I needed it, I really needed it! I was well advised to stay before the pain too.