My Side Effects During Radiation Treatment and Simultaneous Chemo….and What Helped Mefeatured

Ahhhhh side effects. Don’t you just love them?

To borrow a quote from Forrest Gump…… side effects “are like a box of chocolates. You never know what you’re gonna get!”

Doctors go through these long laundry lists of things that MIGHT happen to you…making your head spin….but you don’t really know what you are going to get hit with until you jump in and start your treatment.

Every body is different, so it is really hard to compare and contrast with another person.

The first phase of my treatment was 28 rounds of radiation and an orally taken chemo pill (Xeloda). These were done together Monday through Friday for  5 and 1/2 weeks, so I had weekends off. THANK GOD!  I was put on a very low dose of chemo, and its purpose was to allegedly help the radiation be more effective.

I was really not happy with the fact that I’d have to tackle both radiation AND Chemo at the same time. This seemed really harsh, but alas, I couldn’t get out of it. But my oncologist did promise me that if my side effects on the chemo were too hard, he would adjust the dose or take me off of the drug for a period of time to give my body a break.

Phewww. That helped a bit.

I won’t go into lots of details about all the side effects you could possibly get, but I’m providing some good links that explain what you need to know. The link for Xeloda is especially great because it has a section where it compares all of the common side effects with another alternative chemo therapy that could be used to treat stage 3 rectal cancer called 5 FU.

Xeloda: https://www.rxlist.com/xeloda-side-effects-drug-center.htm

Radiation: https://www.cancer.org/cancer/colon-rectal-cancer/treating/radiation-therapy.html

What I thought would be interesting to share is what my body experienced, and how I treated it.

Side Effects I experienced from the Xeloda Chemo Pill:

By far, I think my body did the worst with the Xeloda. I don’t think that the radiation was that bad…except in the final week.  Here is what the drug did to me:

1) After taking it for the first three days (2 pills in the morning after breakfast, 2 pills at night after dinner), I felt very nauseous the entire first weekend.  I was given a prescription for Zofran, an anti-nausea drug in case I needed it.  After the first week I felt better until week 5 and my first week of recovery when the nausea came back with a vengence, so I didn’t really use these prescription pills until then.  What I used in between were little ginger candies called gin-gins. They were REALLY strong in flavor, but were also REALLY effective. The pharmacy at the cancer center said this was their number one product! I understand why.

What was also interesting is that I was taking long hot baths at night my first three days. This was my typical nightly ritual at home, so I didn’t think twice about it.  I was then told by one of the doctors I saw that I should not be taking hot long soaks in the tub, because it makes your blood vessels open and can amplify effects. So, much to my disappointment, I stopped the baths and I think this is what really helped me to feel better with the nausea. I did notice that right after my bath, I felt sicker…and when I stopped the baths, I was not so nauseous.

2) Sometime during my first few days of taking Xeloda, I started to have tingling and sudden sporadic sharp pains in my feet and hands. Neuropathy is a common side effect……and the Cancer Center of America had a physical therapy department that could give me some help with this.  I was scheduled on Friday the first week to start my rebuilder therpay with them, which I did twice per week.  This is a machine that has electrodes on it that you place on the palms of your hands and the soles of your feet and it zaps you with a low current. It is supposed to stimulate the nerves. I used this machine for 30 minutes…….and it is possible to purchase it for home use (with a doctor’s Rx)  if you want to!  I believe it is a few hundred dollars….and can be helpful for diabetics with neuropathy too.

I was also given 30 minutes of exercise, about 15 minutes for my hands (making meatballs with playdoh, squeezing a ball 30 times, wetting and then fully wringing out a towel, etc) and then 15 more minutes of general exercise like a treadmill or bike.

I started to notice that the tingling and sharp pains were less and less, and by week 4, I didn’t really notice it anymore! The rebuilder really worked!

3) In week two, I started to notice the skin on the heels  of my feet were getting really deep cracks, and there was a blister developing on my left big toe. I also noticed that the my feet were sore when I walked. The skin on my hands were also starting to get irritated……..right in the spot between my index finger and thumb. This was the hand and foot syndrome I had been told about from the doctors. This drug causes your hands and feet to get really dry and crack, and possibly blister.

I’d say this side effect was the most painful for me. By weeks 3 and 4 I was suffering a lot…..and in week three it got so bad with my feet that I could barely walk because they were so tender to the touch.

My doctors took me off of the drug for a few days in week 3, and then I stopped taking the pill my entire 5th week. My blister had gotten really big….and the doctor said that they were not going to force me to take it if I was having that severe of a reaction.

Yippie!  After a few days of break from the drug I would start to feel much better.

The most helpful things I found with this was to moisturize my hands and feet with calendula cream a few times per day….and to rest my feet on cold frozen bags of peas. (here’s a link to the one I used: https://www.walgreens.com/store/c/boiron-calendula-ointment/ID=prod6054826-product?ext=gooPLA_-_Health_Care&pla&adtype=pla&kpid=sku6051228&sst=ce48bcb9-237a-4012-a6fb-987bbe6713a9

Side Effects I experienced with Radiation:

1) From day one on…..I would get really tired a few hours after my treatment under the machine. I typically went in at 10:30 am, and by 1 pm I was wiped out until about 4:30 pm. I would usually take an hour or so nap somewhere between 1-4.

What helped with this was obviously resting (the physical therapy ladies said a nap should be no more than 1 hour, but ideally 10-20 minutes) and forcing myself to take a 30 minute walk each day to keep my energy going.  Since it was winter and really really cold in Philly during February, my brother and I would drive to nearby shopping malls to walk.  On a few occasions during week 5 the weather was GORGEOUS outside, so we walked at a nearby trail that was just down the street from our apartment!

My brother and I taking a walk on a gorgeous February day on the Forbidden Trail in Chestnut Hill, PA

I would often get a bit nauseous and lightheaded as I walked, so I carried a ginger candy called gin-gins  with me that REALLY helped fight back the sick tummy feeling.  I would drink at least 64 oz of water every day too in order to stay hydrated, because radiation therapy ZAPS you and leaves you very dehydrated.

I did reach a point where my lightheadedness/dizziness was pretty bad when I would get up from bed or while walking at night, and I asked if I could get fluids intravenously…..but the doctors didn’t give it to me. They said that 64 oz of water should be enough to keep me hydrated, and that was that. Oh well!

2) On just a few occasions during the 5 1/2 weeks, I felt a shooting pain in my rectum, near the tumor location. I have NO idea what that was all about, but thankfully it didn’t last long.

3) Already starting in week 2, I started to notice that when I bent down to tie my sneakers, my range of motion was really tight and I had quite a bit of strain in my lower back.  That was so weird, because I had been very flexible and was able to easily touch the palms of my hands on the floor just prior to starting treatment. THAT was no longer the case. The doctors didn’t recognize this as a common side effect…although the spot that hurt was in the zone of the radiation beam.

I just did some very careful stretches with my physical therapists…which only helped a tiny bit.

However, what the doctor did warn about was that radiation focused on your pelvis region damages vaginal tissue and can actually shrink/de-elastisize the vagina so much that sex and gynecological exams can be very painful. If it could do that to those tissues, maybe it was also affecting my back tissue too.  That is my theory anyway.

4) In week 2 I started to experience severe burning when I urinated. It felt like I was being stabbed in my private region with knives when I had to go to the bathroom. I was given a prescription for a drug that would help with this (but would turn my pee bright orange….oh well).  I was also told to use vaseline in my private region to help keep it well lubricated as the skin was starting to get irritated from the radiation.

The vaseline and pills really worked, and I was able to manage this throughout the rest of the treatment.

5) In late week 4 I started to notice the skin on my bum and vagina was discolored and slightly burned. It was a weird salmon pink color in front, and purple pink on the back. Thankfully, it didn’t hurt so much. I just rubbed the calendula cream on it to keep it hydrated.

6) In late week 4 I started to get sores, slight bleeding and dry cracked skin in my butt crack. NOBODY told me about this! I had been forewarned to moisturize my bum starting on day 1 in anticipation of the burns that would come, but they didn’t mention that the crack would get so jacked. This really HURT! I wish I had known!  I had trouble sitting and resting on my bum.

7) I experienced diarrhea sporadically in week 4 and 5. For the most part I was severely constipated….because my tumor was blocking my colon and it was very difficult for stool to pass. I managed this by taking Mirilax at night before bed. In the morning things were soft enough to be able to fit in the small space between my tumor and my colon.

8) In late week 4 I had my first hot flash. Menopause is a side effect of getting radiation to your pelvic region. 🙁

My functional medicine doctor suggested that I start taking a supplement called Estrovera that has been shown to reduce hot flashes and other menopausal symptoms by as much as 75%! Sign me up…..

***

Actually……although I did experience quite a few side effects, the doctors say that I endured it very well like a trooper. I attribute that to all of the supplements that I was taking throughout the 5 1/2 weeks. I will do a separate post on my supplements, because I think this is really important to share.

My last day of treatment was the worst though. I was severely nauseous from the radiation and even threw up for the first time. I had already been off of the chemo pill for a week….so all of these issues were purely from the radiation. I was lightheaded, tired, and my butt was on fire from the radiation burns.

That GOD the end had come…and now I had 6 weeks of rest to look forward to.