starting chemo - What to know?

impactzone

Sorry if you've heard before, here are the details: 47 year old otherwise healthy male recently post low anterior resection for moderately differentiated adenoCA of rectosigmoid. 1/17 positive nodes. Solitary 2.8 x 1.9 cm liver met - far posterior aspect of posterior segment of right lobe. Commencing FOLFOX + avasten late september '06 and planning for definitive surgical approach. Location is Santa Barbara, California - San Jose, San Francisco Bay area and Los Angeles reasonably close for surgery.

When starting the folfox6 + Avastin they said here's my schedule:
Tuesday: get blood work done for red and white blood cells levels, Wed: 5.5 hour infusion + pump: Thurs 2.5 hour infusion, Friday go in and get pump taken out and cleaned. This is every 2 weeks for 2 - 3 months when they will evaluate for surgical resection or rfa of mets.

What should I do to prepare? I am scared but know I have to get started on this. I am worried about mouth sores, sickness and neuropathy. Fortunately, I do not have to work on those Wed, Thur or Fri's.

Do I bring snacks,can I drive afterwards,should I walk if I can...
HELP!!! and Suggestions?Thanks,

Chip

carmen07

I don't blame you for being scared but hopefully you will experience the same positive reactions my husband had during his treatment.
He was able to drive with no problem. In fact he drove over an hour a day.
To help prevent mouthsores you should use a soft toothbrush and stay away from Alcohol or hydrogen peroxide (Scope). Rinse your mouth with a solution of water, salt and baking soda. You can also buy mouthwash that does not contain Alcohol or hydrogen peroxide(Biotene I believe is one). Here is the recipe for Water, Salt and Baking soda solution.
Boil 1 quart of water. Add 1 Teaspoon of salt to boiling water. Add 1 teaspoon baking soda to the boiling water. Allow to cool and place in clean containter. Make a new rinse every other day. (recipe from hospital).
Also you should receive ON your first day a ton of material on Do's and Don'ts.
As far as the Cold sensitivity. Drink liquids at room temperature and through a straw. No ice cubes. They will give you anti nausea medications.
My husband didn't get sick. Everyone is different but hopefully you will experience minimal side effects. Be prepare to do a lot of reading the first day. We went hope with a shopping bag of literature.
Food - they provided snacks, drinks and lunch. My husband preferred his own snacks and lunch.
Most of all drink lots of water!!!!!

DK2006

Hi Chip,
I've been following your story and I was hoping that you didn't have mets to liver. I'm so surprised that with one lymph node positive you have mets. Do your docs think that this is unusual? How is your blood work, including liver enzymes?
I have stage 3a CC with 1 out of 32 lymph nodes positive. I am 47, but was 46 at the time of diagnosis. I completed 12 treatments of FOLFOX in June. My treatments were on the 12th floor and I walked up the stairs for every treatment. Driving was no problem, but I usually went with someone. Although chemo was not fun, it was manageable. I didn't loose much hair, I never got sick, and as the treatments progressed, the day I was most tired was the day the pump came off and the following day. My neuropathy was minimal, and I have fully recovered from it. I got mouth sores my last treatment, but only for a few days. I exercised every day and did accupuncture every week.
My thoughts and prayers are with you. You have a great attitude and you will do great!
Best wishes,
Donna

KariK

Hi,
I was in pretty much the same boat. 3 surgeries, radiation, chemo (5 FU) another surgery and then 6 months of FolFox. Stage IV. I drove by myself every day. No nausea, no mouth sores, no hair loss. I actually felt quite well. I did have a problem with jaw spasms but that only lasted a few seconds for about the 1st 3 days and went away. The cold thing (as my grandchildren called it) was more of a nuisance, the Oxliplatin people provided me with a shawl (yipee) a blanket and a pair of gloves and I did appreciate that. One time while grocery shopping I took a frozen dinner (not thinking) from the freezer section and literally threw it across the aisle. A lady looked at me as if I was nuts. Wearing gloves in the middle of July was not too cool either. Drinking anything cold was a problem for about the 1st 3-4 days but that too subsided. My big problems came from low white blood counts, I got 3-4 neuprogen shots before evey chemo cycle and then switched to Neulasta. The neuropathy was the worst, but that too gets better. Mine wasn't as bad during chemo as it was after I finished. I still have tingling in my hands and feet but I no longer drop my car keys 3 times before I get them in the ignition. I did complete all 12 cycles. I wish you the best of luck.

ramona41

Hi..two years ago I was 41 and had stage two rectal cancer. Had surgery..chemo and radiation. ONe thing I wish I had known was too have some imodeum ad on hand at home. they gave me anti nausea meds in my chemo and a perscription..but the diarhea was rough. keep a bottle of imodium ad on hand.. and keep taking em. take two then two more.. tillit stops my chemo nurse she told me I could take as much as it took. not saying to overdose..but I took about two every half hour for a bout three hours..and it helped.. good luck you will get thru this. also I live in sonoma county.. my surgeon was Dr. Robert Khoo. he specializes in colon rectal surgery he is the best in my opinion if you are looking for someone he has a website too. Great guy and everyone that works for him is great. let me know if I can be of any help to you. peace Ramona

vinny3

I am on Folfox/avastin and just completed my 6th cycle. It is possible that you may be on a different dosage. My hair may be a little thinner but didn't have much to start with. No mouth sores. Normal activity pretty much except for the time taken for the infusions. I try to get a nap in on those days too. I walk as much as possible. Normal work schedule when not getting infusions. The worse days are the two days after the infusions. I get a little more tired then and slight nausea which is helped by eating frequent small amounts. Diarrhea only with the first cycle, now constipation. Haven't taken any antinausea meds for last 3 cycles. The cold intolerance is the worst but is mainly for the first week except now when the weather is colder handling cold objects is more bothersome (especially in Minnesota). Gloves and socks are a necessity.
Good luck. Feel free to ask questions.

****

JADot

Hi Chip:

Yup, I remember those big bad butterflies in the stomach before I did the first one. Afterwards it was like - hmmm that's not too bad!

The things that hit right away are:

1. Cold sensitivity - but it's only really bad if you eat, drink, touch really code stuff. Room temp water is usually OK if you drink slowing. Cutting veggies/meats from the fridge is the hardest. But hey, that's what gloves are for.

2. Sleeplessness - if they give you a steroids based nausea drug (Decadron), you probably won't sleep much for the first couple of days.

3. Consitpation - If they give you Kytril, it'll make you constipated. You can take milk of magnesia or ask them to use a different drug later if it really bothers you.

4. Fatigue - you'll be able to drive to and from the treatment. I did that for 5 months. But I usually slept most of the time on the days when I am on the pump and the two days after. So allow a lot of time to rest and watch TV in bed

Bring something to drink is an excellent idea. Food, don't bring your favorite food, coz you're going to associate it with chemo before long, and it'll just ruin it for you for a while

I'm in the bay area, so if you ever need help, someone to drive you, someone to complain to, just gimme a holler!

Almost forgot the most important things: while on chemo, drink a lot of water, take a lot of vitamins and antioxidants, eat plenty of high-quality protein. Please get hold of the book "Fighting Cancer with Nutrition" by Patrick Quillin. Eating well is so incredibly important while you're on chemo. You gotta give your body the protein to repair and heal with.

Best of luck to you! You will do just fine. 2-3 months is not too bad.

Cheers,
JADot

KathiM

JADot said:

Hi Chip:

Yup, I remember those big bad butterflies in the stomach before I did the first one. Afterwards it was like - hmmm that's not too bad!

The things that hit right away are:

1. Cold sensitivity - but it's only really bad if you eat, drink, touch really code stuff. Room temp water is usually OK if you drink slowing. Cutting veggies/meats from the fridge is the hardest. But hey, that's what gloves are for.

2. Sleeplessness - if they give you a steroids based nausea drug (Decadron), you probably won't sleep much for the first couple of days.

3. Consitpation - If they give you Kytril, it'll make you constipated. You can take milk of magnesia or ask them to use a different drug later if it really bothers you.

4. Fatigue - you'll be able to drive to and from the treatment. I did that for 5 months. But I usually slept most of the time on the days when I am on the pump and the two days after. So allow a lot of time to rest and watch TV in bed

Bring something to drink is an excellent idea. Food, don't bring your favorite food, coz you're going to associate it with chemo before long, and it'll just ruin it for you for a while

I'm in the bay area, so if you ever need help, someone to drive you, someone to complain to, just gimme a holler!

Almost forgot the most important things: while on chemo, drink a lot of water, take a lot of vitamins and antioxidants, eat plenty of high-quality protein. Please get hold of the book "Fighting Cancer with Nutrition" by Patrick Quillin. Eating well is so incredibly important while you're on chemo. You gotta give your body the protein to repair and heal with.

Best of luck to you! You will do just fine. 2-3 months is not too bad.

Cheers,
JADot

Awww, JADot, you STOLE my line!!!!

WATER WATER WATER WATER WATER!!!!

And realize it is all temporary...and tell your onc if anything seems not right (since WHEN is hooking up to a pump a normal thing...sigh!).

I also planned something BIG (went to a spa in Palm Springs) for AFTER....gave me something to focus on PAST the hell!

Oh, of course, the one MAJOR thing....keep us posted!!!!
Hugs, Kathi

nudgie

I am 42-years old and have Stage II colon cancer with no lymp node involvement. I am currently on the FLOFOX Regime of 5-FU, Oxiplant and Lecuovon every two weeks for 6 months. My 3rd treatment was Friday, 15 September and I have had the following side effects:

Tingling of fingers, feet, lips and face
Redness of neck and face
Throat discomfort w/o sores
Tiredness
Little tiny red dots on legs and stomach
Jaw pain when chewing
Affected my vision to the point of needing to wear my glasses more often then normal
Muscle aches
Scalp itching. Switched to a more gentle shampoo

Make sure you keep a close eye on your blood counts: Red & White Cells and palates. Work with your doctor on proactive approaches on keeping these within normal ranges. I am currently doing this with my doctor.

jams67

My husband brought me lunch during my infusion.
Biotene toothpaste really helped.
Jaw pain was only with the first bite or two. Just eat small bites at the beginning of a meal. The rest has pretty much been said. jams

Betsydoglover

Hi Chip -
Great advice given so far. And please realize that not everyone has every side effect. So while the laundry list is long, your actual side effect list will be somewhat shorter.

After treatment #1 the oxaliplatin "killed my arm" - huge pins and needles and pain for a couple of days (I had no port). Could I have driven home? Absolutely. Am I glad I didn't have to? Yes. But, know that my reaction was pretty unusual - in fact I have this feeling that I had more acute reaction than most folks, but actually less long term reaction. Go figure.

Chemo nurses told me to bring lunch - but for heaven's sakes, I was only there from 9 - 1:30 (I had Xeloda instead of 5FU), so I ignored that advice. But if you are there all day, by all means bring lunch - it will give you something to do, and even the chemo brings on slight nausea it won't be immediately.

Good luck,
Betsy