My Chemo/Radiation notes

[AppleTree]

I know some people who have not started therapy yet are looking for 1st hand accounts of others experiences. Even though I am only just starting my 2nd week, I thought it would be helpful if I posted my experience over the next few weeks. I know I have found it extremely helpful to read these boards. So, here goes...

The diagnosis: I went to my Dr due to a very small, small amount of bleeding. I felt silly going, thinking for sure it was a small hernia, but she felt I should go to the hospital that specializes in gastro/intestinal and gave me a referral... my appointment was set for 4 weeks later. However, 6 days later I had explosive, bright red diarrhea, mixed with dark blood clots (at night). I went to the hospital 1st thing in the morning (Friday, February 5), said I had an emergency and waited. Once the first DR saw me, they kept moving me along to another one and I had a scope/biopsy that afternoon...and lots of blood drawn. Did not hurt at all. A doctor came and talked with me and said for sure it was cancer, but we still had to wait for pathology results. Colonscopy was done on Monday, CT scan and MRI scan on Tuesday (February 9&10). I know for one of the tests they put something in my vein that made me feel warm. I met with another surgeon Friday, February 12 and she gave me the details that I posted in my signature. The tumor board meets every Thursday and they had decided my best treatment option was chemo/radiation followed by surgery.

After that one explosive episode, my bowel movements went back to pretty much regular, most the time with no visible blood until after my 2nd set of CT scans (March 7). So, thankfully I had that 1 big event which propelled me straight to the hospital without waiting several more weeks for my appointment.

My treatment so far:

Monday, March 7 - I had 2 more CT scans...the 2nd one I had to drink milky liquid. I was marked for radiation. I am pretty sure that milky stuff made me constipated. I finally drank lots of coffee for relief, which worked, but also made me very shaky. And this was the start of gas cramps, small bits of bloody diarrhea, and more frequent bowel movements...loose, but not diarrhea. No more constipation.

Friday, March 11 - I met my chemo doctor. I was given the option of spending 5 nights in the hospital 2x for chemo, or take the pills at home for all 5 weeks. Once I decided on the pills, the nurse gave me hand and foot lotion and told me to use both...alot. DR wrote prescriptions for anti-nasea, anti-stomache acid and chemo pills. He also gave me something in case I get constipated again. I have a 24 hour number to call to report any bothersome side effects.

Monday, March 14 - I started 3000 mg Xeloda and radiation 5x a week, Monday - Friday.

Week 1: My husband purchased a weekly pill box for me and I loaded the chemo and anti-stomache acids for the week. I skipped the anti-nasea, figuring I would take it if needed. I am now into week 2 and so far have not needed it.

I will be the first to admit, I was scared to take those first pills on Monday morning, fearing instant side-effects. But I took them and went to the class I am taking at University. I went to school all week (I have class 4x a week for 2.5 hours).

The first week of radiation, I could feel slight cramping, like I wanted to fart while being radiated. I guess by now we all know better than to trust a fart so I held it in. Also, a slight tingle like sensation on my anus. Week 2 - so far I have not felt this. I had radiation 2x on Friday because I won't have it on Easter Monday.

Week 1 - get my son off to school (he is 12), go to school in the morning myself, home for lunch and 2-3 hour nap. Afternoon - throw in a load of laundry, maybe some dinner prep, do my homework, etc. Radiation at 6 pm. I live so close to the hospital, I leave home by 5:15 and am home usually by 7. The problem is that this is dinner time in my house and my husband and son are not eating without me. Week 1- I am coming home, cooking dinner, doing dishes, checking my son's homework, etc...and completely exhausted by Friday. Week 2 - we have a new dinner plan. I could not keep up with that, especially so late in the day. The guys have to eat some without me!

But as you can see - Week 1 was pretty good for me. Definitely more trips to the bathroom, including some diarrhea, but mostly just looser stool. Sometimes I feel a slight tingling in my hands/feet like maybe they have just started to go to sleep, but it is very, very slight. 2 gums in my mouth infected, but I have gum issues anyway. Lots of rinsing with warm salt water and RX mouthwash my dentist gave me last week - knowing I was starting chemo/rad took care of it. New SOFT toothbrush.

On the weekend we went out to eat, to the mall and for a walk. And watched movies on Netflix. Ahh!

Week 2 - School vacation week! I have 2 weeks, my son has 1 1/2 week. This week he is going to a rock wall climbing camp so he is getting lots of exercise and I get to rest! Win/win.

Radiation nurse said yesterday that my skin color on the radiation site (all 4 sides) looked good. Met with chemo DR today (Tuesday) and had blood drawn. So far everything is going good. I am really diligent about using the hand/foot lotions. Right after dinner I lie down in bed and read, watch TV or whatever. Right now I am mainly tired. My back and left hip ache and I have a feeling as if I have a piece of rice stuck in my throat. DR says this is not from chemo/radiation, but it is something new so thought I would mention it.

And that is as far along as I am right now. I see chemo DR and have more blood taken in 10 days. I will keep adding here as I go along. I know my side effects can get to be more as I go along, but I sure did do alot of worrying about the 1st week for nothing. So, if this is something you are facing, just try to relax a little. I guess we all just have to take this as it comes. And if you are still reading after ALL that, hopefully it was helpful.

[mike1965]

Wish you well. Thanks for sharing. I saw oncologist today and he wants to start chemo in April.

[Ajane]

Appletree, are you taking an H2 inhibitor (Zantac) or a PPI (Omeprazole, Prilosec, or Nexium)? If it's the latter, please read this article and then show it to your Oncologist asap.
Mike, this is the link to the article I was referring when I answered your post.
FYI: Capecitabine is the generic form for Xeloda.
http://meetinglibrary.asco.org/content/148424-156

[AppleTree]

Ajane - yes, I am taking Pantoprazol (a PPI) 1x a day in the morning. Thank you for the information... I would rather have more side effects for a short period of time by discontinuing PPI use than to lower my success rate chances. I am going to drop this article off for my DR today. Thank you again.

[Ajane]

AppleTree, your welcome. I wish you the best possible outcome. Jane

[kellywin]

Appletree -

You've probably already been told most of this but here are a few tips/thoughts

*Put lotion EVERYWHERE in the radiation field every day after radiation and at night. And I mean everywhere (down the crack)
*Get some calmoseptine for when the razor blade shits start (just don't use it directly before radiation)
*Use a dilator daily or have sex just about every day to avoid damage to your vagina. If you haven't been through menopause talk to your gynecologist about estrogen cream too
*Stretch your gluts/hips. I didn't know this and now my gluts are as tough as leather
*I was able to work full time all throughout radiation, my main symptom besides the razor blades was fatigue

Good luck throughout your treatment.

[Ajane]

Just in case no one has mentioned this already....Be sure to bath or shower with a gentle, non-perfume type soap (I preferred plain glycerin soap) to remove all the lotion at least two hours prior to radiation treatments. Residual lotion and creams can create harsh burns.

[AppleTree]

Kellywin & Ajane...thank you so much for the advice. I started this thread hoping it would help others and you guys have been so nice to read it and offer your own experienced advice, thank you! No - no one told me about anything except to use plenty of hand and foot cream and take the nausea med at the first sign of thinking I need it (so far last night ...about 2 am was the first). And to call the 24 hour number with any troubling side effects. I would rather go with an ounce of prevention is worth a pound of cure though!

My radiation markers are marked with stickers and marker. I was told no showers or anything for fear of getting them unstuck. For 6 weeks? I don't think so! I jump in the shower quickly and pat dry and wash my hair in the sink to be on the safe side. They replace the stickers as needed anyway and they seem to stick to my skin pretty good. I do use glycerin soap as I have very sensitive skin and psoriasis.

[kellywin]

My radiation markers are marked with stickers and marker. I was told no showers or anything for fear of getting them unstuck. For 6 weeks? I don't think so! I jump in the shower quickly and pat dry and wash my hair in the sink to be on the safe side. They replace the stickers as needed anyway and they seem to stick to my skin pretty good. I do use glycerin soap as I have very sensitive skin and psoriasis.

That's a little strange. I think most of us got tattooed, really just small ink dots. I'd certainly ask about that. One of the things that is going to be a life saver is hot baths, especially toward the end of radiation. And please please please heed my advice about taking care of your female parts!!! I can tell you between radiation and menopause, sex is extremely painful, I wish I would have used the dialators instead of just trying to have regular sex and I didn't realize to continue that process for some time after radiation, after radiation ended, I pretty much stopped not thinking that the radiation continues to work for a while after it ends.

The advice about the soap is good as well, I forgot about that. I used a Cetaphil bar and it was really gentile. I also used Cetaphil lotion, very moisturizing but not slimy. As my work was directly across the street from the cancer center I walked to radiation from work every day. After the session when I got dressed, I put the lotion on and I was able to put my work clothes on right away. For me, radiation wasn't all that bad, I was able to hide it from everyone at work - no one knew except my boss and a friend. People were shocked when I finally came out with it one the last day of radiation.

Really wishing you good luck!

[MaryannW]

Good luck with treatment. I had stage 2a rectal cancer downstaged to stage 1 post surgery as result of radiation chemo. My tumor was 5.5cm from anal verge and I had stapled coloanal anastomosis. No problems with the anastomosis as I had a great surgeon. I'm having my reversal of temporary ileostomy on 7 April. I found keeping up the Moo Goo on hands and feet helped with Xelolda and Metamucil helped with diarrhoea from radiation. Make sure your bladder is well out of radiation field as mine was damaged during treatment. It also sent me instantly into menopause.

[Ajane]

Maryann, I was told going into the treatments with a full bladder was best. I don't know if it's true. I completely forgot that little tidbit until you mentioned the bladder. Between chemo brain, old brain, and close to 30 months now since I had radiation, it's easy to forget it all.

[AppleTree]

Thank you all so much for your continued support and advice! This is a learning process and all your suggestions have been entered into my brain for things I should be doing! I have an appointment next week to talk with DR about the female aspect of therapy. So, week 2 finished and I am going to post my weekly review soon.

[AppleTree]

Week 2

Not a bad week! Wednesday night I had an awful headache combined with nausea. Nausea and headache meds kicked in and I finally fell asleep at 3 am. It could be I was nauseous from my headache, who is to say? Needless to say, I pretty much lazed around a good part of Thursday morning with a residual headache, but by mid-afternoon I was feeling much better.

Thursday I asked my radiologist techs what lotion I could use. I had asked my pharmacist for something I could use with radiation and she told me she would get whatever I wanted, but to please ask at the hospital. This was not treated as a simple request...Friday (yesterday) I was seen by a radiologist nurse for skin and got an exam. I got Mirfulan for the anus area and Bepanthen for the vigina and all skin in the radiation field. Neither can be used 6 hours prior to radiation. And I now have a standing weekly appointment to have my skin looked at during the rest of my therapy. Creams will be changed as needed, but what they gave me yesterday is working nicely. Yesterday afternoon I took a good sized walk with my son.

The hand/foot creams are given to me by my chemo doctor and I apply them often. So far, so good in that department.

Was supposed to go visiting today, but the 4 hour round trip car trip did not sound too appealing so I sent my husband without me. My son and I will bake our Easter cake today, work on his holiday homework while the laundry runs and go out for ice cream. Most our friends are away for the Easter holiday so we will entertain ourselves. Sounds like a nice, normal day to me. Enjoy the weekend everyone!

[chrisca]

AppleTree,

Talk to your radiation oncologist about radiation exposure of the terminal ileum from your therapy. This could put you at greater risk for low anterior syndrome after surgery. It may be possible to alter the field to protect that area better. This is something relatively new that's been discovered. It can cause bile acid diarrhea which is unpleasant and debilitating. We are all educating our doctors, even though they often won't admit it.

-Chris.

[AppleTree]

Week 2.5
Today marks my 1/2 way point. Tomorrow I have appointment with radiology DR and Friday with chemo DR (always involves blood work, I am learning). I am taking all your advice and have my list of things to talk about written down.

So far, I feel pretty good, just tired and in need of a daily nap. Not as energetic, but still totally able to go for walks (but sadly not up to a favorite mountain climb last week!), run the household, etc. Today, for the life of me, I could not fully wake up until 11 o'clock. My husband got our son to school! I guess I just really needed the sleep. I am usually awake at 5:30 before the 6am alarm goes off.

I was violently ill a few hours after Easter dinner on Sunday. Horrible cramps and the runs. So, now I know...Easter was a bit too rich for me! My appetite hasn't been huge. I like yogurt with bananas, pudding, grilled cheese and ham, cream cheese and crackers, scrambled egg mixed with white rice, baked chicken...and my favorite - my husband's homemade chicken broth with noodles and veggies. Bland and small portions and I have had very little digestive issues.

The creams have been a huge help and I feel much better.

Right now, 2.5 weeks in, things seem pretty "normal".