I was diagnosed on March 19, 2003

Hi, fandaj -

First let me say that your prognosis is very good - and I'm quite impressed that you're up and about!

Regarding chemo... it is not a ride at Disneyland (although you may find yourself feeling pretty queasy at times!) but it isn't the end of the world either. Do you know what type regime you will be receiving? A lot of us got 5FU and Leukovorin and often there is a third drug mixed into the cocktail. With a 5FU regime, you won't typically lose all ofyour hair - although it will probably thin out some. Everybody's side-effects are different. The soles of my feet got very dry and scaley. I used this really good stuff from The Body Shop called "body butter" - mango - I didn't know whether to eat it or rub it on my feet! On thing that you will most assuredly experience is fatigue. As I said everyone's experience is different, but we all got it to one extent or another. It's normal and, if you have someone to help you out - that's great! I flew solo and actually had to get a part-time job during my chemo (that's better discussed in the divorce survivor's network chatroom) and managed about 85 hours of work per week OK. I was pretty wiped out, but it can be done.

Even if you don't feel like eating (I also developed sores inside my mouth and throat from the chemo; another common 5FU/Lkv effect), you need to - just to keep your strength up. I suggest eating veggies that are high in iron because your fatigue is caused primarily by anemia. There is also a drug known as Procrit that will help you combat anemia - many docs are hesitant to give it though (I don't know why).

Try if you can to have someone there with you when you do your chemo. As I said I flew solo and I can tell you what a difference it would have made having someone there to hold my hand. Finally - and I know this will sound weird - enjoy your time with your chemo buddies. I sort of used my chemo time as a group therapy session - telling jokes, etc. It was nice because we all had a common bond and we could let our hair down - well, those of us who had hair - and just relax with each other and support each other when we were feeling sick or down or whatever.

Finally, keep up a good positive attitude! Attitude is EVERYTHING! For an excellent resource book, take a look at "Chicken Soup for the Surviving Soul". It is filled with great anecdotes of strength and survival and attitude. It is also a good book for your family to read so they can get some insight into what you are thinking about and where you're at emotionally.

Keep up the good fight. Be well, and know you are in my prayers.

- Sponge Bob

I am 47 and was diagnosed with rectal carcinoma last year. I recieved 5 FU/CPT 11 and radiation therapy. It was not that bad. CPT 11 caused me some pretty dramatic diarrhea, but was made better with Imodium. 5-FU can cause mouth sores but I did not have any problem with that. I did have a crusty slightly bloody nose like sometimes you get when it is very dry in the wintertime. I was a bit tired, but am single, and worked full time during my treatment. Then I recieved 5-FU, leucovorin and oxaliplatin for 12 wks last fall and winter. My hands became very irritated for several days after, and then peeled like after a sunburn. Hand lotions helped some, but the soreness basically went away in about 2-3 days. Oxaliplatin causes an odd strong tingling sensation in a lot of people, especially in your hands and face/mouth when exposed to the cold. So I didn't drink or eat cold stuff for a few days after treatment and joined a gym and walked on a treadmill instead of hiking outside in the cold. I lost a modest amount my taste after about 4 weeks. (It returned 8 weeks after my last treatment) It did not decrease my appetite by much and I have discovered that that is more important than tasting stuff. I was only occasionally nauseous. I had treatment the day before Thanksgiving, vomited once Thanksgiving AM but polished off a large Thanksgiving dinner a few hours later with no problems. I worked pretty much full time during that treatment as well, taking it a bit easy when my hands were very sore.

I was warned I may have hair loss, and visited a wig shop just to check it out. They suggested a short haircut but I ended up with minimal hair loss with the first therapy. It did thin a fair amount with the second round of chemo, although never so much that I considered a wig. In fact few people at work noticed that I had lost any hair.

It sounds scary, but if your experience is anything like mine has been so far, I think you will be suprised how tolerable it is.

Best of luck.

Hi...We are somewhat similar. I was sick for a year!! Kept thinking it was heart or allergies or depression. Anyway...they removed a turmor the size of a soft ball and the lymph nodes and I'm told it has spread to the liver...so I'm happy for you that things are less severe.

Your replies were very supportive...Best of luck to you!

grettasmom said:

Hi...We are somewhat similar. I was sick for a year!! Kept thinking it was heart or allergies or depression. Anyway...they removed a turmor the size of a soft ball and the lymph nodes and I'm told it has spread to the liver...so I'm happy for you that things are less severe.

Your replies were very supportive...Best of luck to you!

In May, 2001, at 52 years old, I had surgery for colon cancer and then underwent 6 months of chemo. In November 2002, it was back, this time in my liver, two tumors. I underwent RF, a procedure where they go in and use radio waves to "cook" the tumors. They could get to one of the tumors, so it was removed completely. In December, before I started my chemo treatments in January, we found another tumor. In January I started a fairly new to the states treatment - Oxaliplatin (injection every 21 days) and Xeloda (oral - 14 days with a week off before the next Oxaliplatin started.) On March 11th I was told the new tumor was "dead" and I was in remission. We know that remission could mean a few months, a few years but right now, we'll take it one day at a time, and since they are always finding new drugs and treatments, I'm not going to get discouraged, that's not good for me.

GrettasMom, don't ever give up hope. They have some new treatments out there that have been very successful in Europe and are now being used here. Talk to your doctor.

To "I was diagnosed on March 19, 2003" - the first chemo made me tired, but I didn't have too many side effects. Nothing that my little pink pill and AD Imodian didn't take care of. I continued working 4/6 hours a day and when I got tired, I rested.

The Oxaliplatin and Xeloda have been a little different. Side effects include billions of little pins and needles sticking in your arms, hands, feet, lips. I can't tolerate anything cold - eating or drinking. I'd start vomiting as soon as I walked out the door of the center. It would put me to bed, and sometimes keep me from working the week after chemo.

BUT I talked with my doctor, I told him the problems. We cut the treatment in half, they added a couple of things to the mixture, give it every 15 days and I'm taking an herbal substance that helps with the nerve endings.

If he told me I had to go back on it full strenght to keep the monster in remission, I'd do it without a second thought. As it is I will probably be on a maintenance chemo for the rest of my life, but that doesn't bother me.

Compared to some I've seen as I've sat in the treatment center, I count myself very lucky that my side effects have been so few.

Anyway, sorry to be so long winded. Just keep talking to your doctor, reading and learning. You can win against this.

Whitzw

Don't worry. If your chemo is like mine, it is no big deal. I was operated on for stage 3 in 6/99. Got 6 months of chemo, with few side affects. Didn't lose any noticable amount of hair and never got sick to my stomach. On days of chemo I would take an anti-nausea pill before going. I didn't do the drip, but took a staight injection of the chemo each time, so it was over in a few minutes and I was on my way. I always planned chemo as only one of many things I planned to do that day, so that I kept focused on other things. I found walking, running and snow skiing helped me maintain a positive view thru the chemo. Ran a 10K after 1st month of chemo. Scheduled holiday plans and vacations during 3rd week of chemo when I felt the best. I also ate healthy, took vitamins, went to church, and made a special effort to count my many blessings, and enjoy every day. Going thru this has made me appreciate the positive things in my life far more than I used to.

Ask them give you a cup of ice chips before each chemo treatment, and keep some in your mouth during the treatment. The cold slows the blood circulation, and the chemicals, to the membranes in the mouth and reduces the occurance of mouth sores. Worked great for me. I had stage 4 in July of 1994, and am doing fine today after surgery, 8 weeks of daily radiation, and 8 months of chemo. The outlook is good, but you must keep a positive attitude. It is not easy, but it is definitely worth the effort.