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External radiation - 1 week down, 4 1/2 to go - so far, uneventful

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

After 3 rounds of carbo/taxol chemo for UPSC 1A, I started external radiation last week. Had to suffer some indignities for simulation/set up (my 'changing room' is a tech holding up a hand towel; got all sorts of markers inserted in the va-jay-jay with various techs in the room; had photos taken while half-naked lying on a table with a marker in the vaj) but nothing was physically uncomfortable and all the techs have been super.

Radiation is a daily thing. I go in to the treatment room, the tech holds up a towel, I pull my pants to my ankles, lie on a table, get zapped, pull up my pants and leave. The whole thing takes about 7 minutes and the staff is pretty punctual about the schedule.

One week in and so far no side effects. Doc says the side effects are cumulative, and will include sunburn-like burns on the three zap sites, fatigue and diarrhea. All should be temporary, and any diarrhea should be treatable with Immodium.

Since it's still early in the treatment, I went back to work today. I'm doing 6-hour days with the right to take more time off if things get bad later on. I'm still feeling good and energetic, and hope to remain that way :)

Liz in Dallas

pakb56
Posts: 141
Joined: Jan 2012

Liz...that is the schedule I am on but behind you. My second round of chemo is March 7. How long did you have to wait after your 3rd chemo before radiation started? 6 weeks, 5 days seems like forever!

I hope you continue to feel well. Stay strong!

Pat

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi Pat -

I had chemo on December 12, January 3 and January 23. Had my post-chemo visit with the oncologist February 9 (about 2 1/2 weeks after the last chemo) where he recommended radiation and further chemo, had the radiation consult on February 13, the simulation on Feb 17, and started Monday Feb 20. I'll be done at the end of March, will have a 4-6 week break and then 3 more rounds of chemo.

I should be done with everything around July 4th (Independence from Oncology Day!), which means it would be 8 1/2 months from diagnosis to treatment completion. When I put it like that all I think is 'wow'.

Liz in Dallas

imackie48
Posts: 88
Joined: Nov 2011

Liz, is that called brachytherapy, that's what's recommend for me, after my chemo, what's the different?
Irene

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I can answer that since I've had both. Liz is referring to external radiation where the beam of radiation is sent threw the skin. Brachytherapy is internal where the radiation is actually put in your vaginal cuff, usually for 3 to 5 treatments. A lot more invasive, but the treatment is shorter and you usually have few if any side effects.

Take care,
Cindy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Interesting you had to have something inserted up "there" for mapping. I didn't. It was pretty noninvasive other than pulling my pants down to my HIPS every day for treatment. I wonder why things are so different from doctor to doctor when we are all basically getting the same thing.

I didn't have an issues with radiation other than more frequent bowl movements. Hopefully all will go well with you too.

Take care,
Cindy

pakb56
Posts: 141
Joined: Jan 2012

So much to look forward to! Keep smiling sisters!

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

What a delightful subject line, haha!

My doc recommended external radiation because my uterus and the UPSC tumor were morcellated during my hyserectomy, since at the time we had no clue the tumor was there and I was so far out of the classic profile of an at-risk-for-UPSC person. External is more generalized radiation than internal.

I will be getting three special vaginally-directed radiation treatments after the first 5 weeks in recognition of the most-likely-to-recur location. Don't know if the markers were for that, but they were no big deal.

Liz in Dallas

mac1
Posts: 9
Joined: Jan 2012

Hi Liz,
I have two more pelvic region external radiation treatments left out of 33. The side effects are cummulative. My treatment was at 7:30am and most of my loose stools occured before the treatment and immediately after. I didn't start taking the immodium until my stools were loose. Then I limited my fruits and vegetables to the evening and kept them to a minimum. I had white bread with peanut butter in the morning and a banana. Lunch a sweet potatoe and yogurt. Dinner protein with starch and one vegie. My stools became more formed after minimizing the fruits and vegies. I had nausea bad for two days after a couple of weeks and it was coffee that caused it. Eliminated coffee and started drinking tea with lemon and ginger every morning or anytime I had a slight amount of nausea. Seemed to eliminate the nausea. The smell of the stools gets very bad after a couple of weeks and you may experience bad stinky gas. I drank a glass of water with Chlorofresh every day and that helped to reduce the smellyness. I did experience some fatigue towards the end of the week. I was able to go to work every day without any problems. Best wishes to you. I hope this helps you with your treatments.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Another fabulous subject line :)

I'm 2 weeks in, 3 1/2 to go. I'm a little more tired than last week but that's probably because I'm back at the office (it's been a mercifully quiet week which has been nice to ease into things).

For the past week I've been a poop machine. I take a couple of Immodium every other day and that seems to control things, but the gas is pretty impressive. I'm also retaining enough water that I have a hard time wearing my rings - wonder if that's part of the Immodium regime. I'm avoiding raw fruits and veggies (wah) and drinking a lot of water. So far my skin is still good (a bit dry, but no big deal), too.

According to my onc, radiation should drop my chances of recurrence from 65% to 50% which I'm calculating at 0.5% reduction per treatment. That means I've already reduced my chances of recurrence 5%!

Liz in Dallas, who's taking things one day at a time

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Gosh I know exactly where you're coming from...stay close to the toilet! Just part of the deal as really I found no way around the diarrhea beside avoiding all the fresh fruits and vegies. I tried to stick with apple sauce, but that has some roughage too.

I never had issues with my skin being real dry. When treatments were completed, my tummie area was a big tanned that was all.

Never read the statistics...thanks!

Jan

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Great to read about how well you're enduring the radiation. It's like anything, jump up and start the process and before you know it, you're out of radiation.

Side affects, yes are cumulative. I found within 2 weeks the bowels were really fast. So fast, I needed to be close to a toilet. What really laid me low, was the fatigue. I'm a high energy type person, and I felt like it was everything I could do, getting out the door to run errands. When got home I was bushed. Was really a shock to me, but the best part, after radiation was over, I was back up and moving faster within a few months.

Watch what you eat as well...I'm a raw fruit and vegie gal, had to limit this type food. Almost went to a canned or mashed type food diet, as did help the bowels to slow a bit.

Just figure this is part of it and know the fast bowels do go away once treatment has ended.

Best to you my friend~
Jan

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I've passed the halfway mark. So far, no burning urination; the bowels are controlled by 1 immodium a day ( the gas and diarrhea kick in in the early evening); the fatigue isn't bad...I just want to go to bed a couple hours earlier than usual.

My hair has been growing back (last chemo was January 23). Shaved my armpits for the first time since December. Of course, the white hairs are growing fastest, as is the facial hair. Joy!

Liz in Dallas

cleo
Posts: 122
Joined: Sep 2009

I found that putting a water based cream on the treated area immediately after radio stopped any dry skin or after effects. Was also advised to use non scented soap.
Past the half way...finish in sight.

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

Past the half way mark. That is great. Glad you are having minimal side effects. I found the fatigue continued. Through the last weeks, too. I needed minimal immodium also. Good luck with the rest of your treatments. May you continue to tolerate them well. In peace and caring.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Got exciting news last week that the radiation oncologist didn't think I needed 3 extra vag-specific treatments so I'll be done in 25 treatments instead of 28. YAY!

Alas, my intestines have turned into a firehose. I had a wee sinus drainage last week and my GP put me on Amoxicillin; after 3 days I was able to puke and poop at the same time. Do I get a merit badge for that? Anyhow, I put the antibiotic on hold but despite having not eaten in 5 days I've lost 10 pounds (I can live quite well without those 10 pounds). Immodium didn't help, Lomotil didn't help, so now I'm on Flagyl.

So with 4 treatments to go and what I hope is an intestinal regulator, I can see the light at the end of the tunnel.

Next stop: a few weeks of rest then back into chemo :)

Liz in Dallas who wouldn't mind losing another 10 pounds

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Flagyl is an antibiotic as well, usually reserved for intestinal parasites, but it works great to firm up stools. I actually have a big bottle of it....for my dogs. Its used to treat giarrdia in them. After my surgery I caught something in the hospital and they put me on it for 10 days. I highly recommend it for loose stools. ;o)

Hang in there....you're almost done.

Cindy

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Had my 25th and final radiation treatment last Friday. It really was no big deal but it's nice to not have to interrupt my day for it.

I count myself lucky - no UTI, no skin rash/blistering, and the vag seems to have survived AOK. The Flagyl and Lomotil have done a good job of plugging me up, although when I do go it is diarrhea. DOc says this will last between 3-6 weeks post-treatment. And I am tired but not anywhere near incapacitated.

Next up: gyn/onc follow-up in 2 weeks and rad/onc follow-up the week after. Chemo to resume early May.

My hair is growing in FAST. Especially my nose hair, dangit. Oh well, it'll all be gone Memorial Day anyhow :)

Liz in Dallas

pakb56
Posts: 141
Joined: Jan 2012

So glad you are done with your radiation and it went well. Look at the positive side of those nose hairs...they catch what my fall out without you knowing!

I have my 3rd round of chemo tomorrow and then I start the radiation. Starting and ending that seems like an eternity from now!

Take care,
Pat

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Funny you should mention nose hair!! Just read an artical in the health journal that longer, thick nose hair was the first line of defense for the lungs (wait for it!)to filter harmful, cancer-causing particals in the air! Always a silver lineing!!Debrajo

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