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.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/30 - 4/28 Folfox. 12 rounds
June CT shows new lung Mets.