Help! Newly diagnosed.

Before and during his chemo treatment make sure he drinks a lot of water, it will help to keep his veins open. good luck

Kathi/Bob,

My name is Joe and I'm 35, I was diagnosed as an T3,N1,Mx about 2 1/2 years ago.

I can certainly let you in on some pointers and hopefully helpful hints. I will apologize however, as I tend to ramble but do get where I'm going eventually.

First let me say you have my sympathies regarding your recent news. Hopefully this forum and others can provide you with needed help.

My experience was at least initially not terribly different albeit a little earlier on than Bob's diagnosis.

It sounds like Bob's tumor was in either the right transverse colon or the ascending colon, but it also sounds like it got out but not too far. With some luck, the liver is an extremely resilient organ and can regrow large portions of itself.

Personally, I found chemo to be the most challenging part of my diagnosis. For better or worse. Given Bob's age and the possibility of remote metastases I would strongly recommend the most aggressive therapies available.

For me, my therapy involved 5FU, Leukovorin and a medication called Camptosar. In combination these medications are not fun and it is likely unless they have another regimine in the last two years this is what he'll be given.

I'll describe my experience to some extent and hopefully you'll find some useful information here and there.

Some definite DO's and DON'T's.

1. Drink extra fluids the day or two before your Chemo. A hydrated chemo patient is a happy chemo patient - if such a person exists. A dehydrated chemo patient is an excellent candidate for pincushion of the month club. Basically the higher your blood volume the puffier your veins and this is good for two reasons.

A. The nurse can more easily find and stick you with the needle for your chemo.

B. The chemo will not damage your veins as much if you are hydrated vs. dehydrated (more on this later).

C. If you get dehydrated - via vomiting or diarhea, you need to replace the electrolytes and fluid your body needs, Gatorate and Pedialyte are good choices but to each their own. (I prefer Gatorade fruit punch - which can help with weight gain if this was lost before diagnosis).

2. You and Bob should remember this acronym BRATS, basically these are Bob's new favorite foods , Bananas, Rice (puffed or steamed), Apples/Applesauce, Toast and Soup. These foods all promote bulk in his bowels and reduce diarhea symptoms.

3. Have a small meal before chemo - preferable something as easy on the way up as it is on the way down (my personal recommendation is applesause or puffed rice and banana's).

4. Reduce/eliminate hard alcohol from Bob's diet. It might seem that if ever there was a time for booze - this was it. While wine with dinner might not be too bad, Bob's liver and kidneys have got better things to do over the course of his chemotherapy than worry about dealing with a double vodka or gin and tonic.

5. Try to get chemo scheduled for Friday's - preferably in the mornings or Saturday's in the morning. I personally found I was good for exactly one thing keeping my pillows under my head for about 24 hours after my chemotherapy.

You may want to consider a 4 day work week if possible, it worked for me and sometimes you need more time to recover and recouporate so the weekends are naturally a good time to do this.

6. Kathi, You need to realise that Bob will probably have very little energy during his chemo and so may not be able to be very helpful - if however Bob was not very helpful around the house in the first place you may not notice very much change.

Bob's iron and white blood cell counts will both go right down the tubes. Sometimes chemo may not be possible so eating properly is important, lot's of green leafy veggies - spinach and - broccoli are good choices as they are both high in iron content. If needed the Dr can give Bob
Procrit which will help him produce larger red blood cells.

When you are getting chemo, you will probably get a blood test at the beginning to make sure your bloodwork is ok. If you want, you can ask for copies of your bloodwork if you want to keep track of these things but some people don't worry about these things.

Your medications, Aside from your chemo medications, you will probably need a couple of other medications.

7. Immodium AD - This is good - and cheap stuff, it will stop Montezuma's Revenge AND reduce if not prevent the powerful diarhea associated with the standard chemotherapy. This is also where hydration is key as well. In combination with the BRATS diet mentioned above Bob's bowel movements will be loose or very mildly diarhetic but not so bad that fluids are lost too rapidly.

8. Kytril - This stuff is very expensive but it's also very good, it's first rate anti-nausea medication working on seratonin levels in the brain rather than affecting your gut. It works wonders but it also costs about 60 bucks a pill.

Vitamin E - Bob's body will not heal wounds or cuts as readily during his chemotherapy - because that's what the chemo drugs do - prevent cells from replicating or repairing effectively. Vitamin E is an anti-cancer drug - although my personal opinion is that - it's a little too late for that - but it can't hurt - in mild dosage and will improve skin health and help Bob's scar(s) become less noticable sooner.

I'm sure there are about a million other things I have forgotten but if you would like, please write again and I'll be checking back in this forum from time to time.

Best of luck,

Joe G.

Hi Kathi...
I hope my contribution will help Bob with his new diagnosis. I am a 35 year old female. I was diagnosed in October 2001, at age 33. I had no obvious symptoms, and was originally diagnosed with some sort of hemorrhoid gone crazy. My only symptom was a sore tailbone. It simply felt like I fell down, landing on my rear. Due to the location of the pain, I was in no hurry to humiliate myself by running to the doctor. Finally, when the pain just got unbearable, I saw the doctor.

The original thought was that I had a blood clot on a hemorrhoid. That was removed within the confines of the doc's office. After a week off work, per the doc's orders, the pain remained. Lucky it did, or I would have figured the blood clot was the end of the condition. I had a flex sig done on October 3, 2001. The doctor said it was nothing he had ever seen before, and for me to wait a day for the pathology report.

I called the doc to get the results, and his nurse wanted me to come into the office. I explained I was one tough female, who could handle anything they needed to say. After 10 minutes of realizing I was not coming into the office, the doctor got on the phone and told me I had a malignant rectal tumor. I boldly asked him what the next plan of action was, and he said surgery on October 8, 2001. At that point, my mom just showed up at my home to get the news. Her maternal instincts kicked in, and said that we would search for another doctor's action plan.

I went to the University of Chicago on Friday, October 5, 2001. I met with one of the top physicians in the country. He suggested 6 weeks of pre-surgery radiation and chemotherapy. This was to shrink the size of the tumor, which was about 2 inches long. October 29, 2001, I had a port-a cath implanted near my left collarbone. This is how I would receive the chemotherapy.

I got my butt tattooed with tiny dots by the radiology team, in order for them to know where to "shoot" me.

I wore the chemo pack like a fanny pack as the drugs fed right into my system. Each week I went back to get a new pack, and have the blood levels checked. I did have a blood transfusion prior to treatment as my hemoglobin was down to a 6. The doctor asked me if I felt tired due to the blood level, and I simply answered that "Isn't everyone who works full time tired?!?!?"

My pre-surgery chemo ended on December 16th, 2001. Enough time to enjoy the holidays. I didn't have any side effects, and didn't miss a day of work. I also have three kids ages 3, 5, & 8 who never even knew I was sick.

My surgery was on January 22, 2002. After ten hours in the operating room, it was determined that two lymph nodes and 40% of my liver had to go. But hey, I still had 60%! I had a temporary ileostomy to "re-route" things until the surgery area healed. I had post-surgery chemo until July, 2002, when I made my oncologist a deal. If I could get a PET scan and it was within normal limits, I could be done with chemo. My only side effect was thinning hair. I never lost it all, and never got sick from the chemo. I was VERY lucky. I attribute that to a great family and support team, and drinking lots of water. Popsicles help if you ever get mouth sores. I had my ileostomy reversed on September 13, 2001. Yes, that was Friday the 13th. I didn't care. I was ready to fight head on. I just had a CT scan on Monday, March 10th, and everything is fine. I still have the port-a-cath implanted, and plan to keep it until I'm 5 years in the "clear." I hope this helps. Most importantly, tell Bob to keep his chin up and fight it all the way. Contact me anytime for support. A doctor or nurse can tell you they understand what you're going through, but unless they've been there, they have no idea.

Take Care,

Stacy

Hi Kathi,
This September I will be a 7 year survivor of stage 3 colorectal cancer. The prognosis from my oncologist was for two good years with treatment. They try hard, but can only guess. I
endured all the chemo and radiation treatments - some days were better than others, but I'm glad I gave it my very best shot. My last seven years have been worth all of it. People who
don't know I went through cancer can't tell. My recommendations would be to offer lots of mild choices to eat. Rather than "What sounds good to you?" which could be NOTHING!!,
I would offer milkshakes, creamy soups, toast, maybe even hot cereal. Vitamins are important. I did best with mild chicken-type dishes, rather than tomato-type dishes. I would be
happy to answer any questions I can for you. I wish I would have had someone to tell me. The doctors mean well, but they haven't done it themselves. They tell you what the textbook
tells them. We don't all follow the textbook. Best wishes to you and your hubby. By the way, I was 38 when diagnosed. As I said, so much for textbooks!

JKB said:

Hi...I hope your husband is doing better and figures out what he is going to do. My husband age 59 was diagnosed 2/03 with stage 11 (T3 NO MO). He is being seen at USC Norris Cancer Center. They removed 18 '' of his large bowel and 13" of his small bowell. The lymph nodes were neg. The oncologist wants him to start chemo, but it is our understanding that chemo may not help at all for this stage, and that chemo is very hard on folks and they can even die or have long term health complications. My husband does not want to do the chemo. He wants to "wait and see what happens". Does anyone have any advice or similar circumstances? This is all new to us. My husband had no symptoms to speak of...fatigue, some abdominal pain, and 2 cranberry colored stools. His CEA before the surg. was .5. I am afraid to DO chemo if it isn't going to help anything, but then I am afraid to NOT do chemo just in case. Anyone else with this problem???

Well, I'm a 3 year survivor. I can say that your diagnosis of T3T0M0 is good - relatively speaking this means you got it nipped in the bud (no pun intended) - so to speak and it is very likely there are no remote cancer cells wandering about BUT if you wanted to be more sure, you can do the chemo regimine, It is generally not a fun thing and I don't want to come of sounding like a salesman but as a paitent you want to give yourself the best possible outcome. I don't regret my decision at all because should it come back - or heaven forbid come back in a remote-metastates situation, I can at least comfort myself with the knowledge that I did everything I could have the first time around.

Having said this - a normal sequence of 4-5 sessions of chemo are no picnic but it's helpful to have someone around to help and work with you for support.

For me, it was worth it and the long term effects were not too bad, for me I had some neuralgia and did have a nasty-bad reaction to some anti-nausea medication and of course the requisite hair-thinning but I got all my hair back within about 4 months of stopping my chemo and otherwise had good responses but I'm also very lucky, I had a T3N2M0 situation and my CEA was neglible.

In short, I hope this helps in your decision.

Regards,

Joe

Kathi and Bob,
I think you have gotten plenty of good advice here already. I would just add that everyone has a different reaction to the chemo so just try to be flexible and go with what works for you.

I was 35 when I was diagnosed with stage IV colon cancer with liver mets in November 2000. I had 13 inches of my colon removed, half my liver removed, and 8 months of weekly chemo (5FU, leukovorin, and irinotecan). The chemo wasn't fun but it wasn't the end of the world either. It made me nauseous but I just ate what I wanted when I felt like it and didn't eat if I felt it would make me sick. I did not lose weight, have diarrhea, develop mouth sores, or lose my hair. I did get tired a lot and my doctor had me get Procrit shots a few times.

Take care and God bless.

Sakin said:

Pam,

This is all so new to me, I know very little about cancer.
My husband (35 years old) was recently diagnosed with colon cancer. The cancer spread to his liver and the doctor said he couldn't remove it from his liver because it was on both lobes. My husband has to start chemo and also go through radiofrequency to kill the cancer in the liver. The doctor said there are only about 2 doctors that do radiofrequency in our city.
We are going today to a consult with the doctor to discuss the treatments, how often he needs them.

Cancer runs in my husbands family, his mother died of breast cancer.

Pam, where do you live. If it's anywhere near Gainesville, Florida's Shands Hospital at University of Florida - go see Dr. Scott Shell. He does the RF and is excellent.

Whitzw

Tell Bob to have the nurse give him a small cup of ice chips before each chemo treatment. Have him keep ice in his mouth during the treatment itself. This slows the circulation of blood, and the chemicals, to the membranes of the mouth and throat. Really worked wonders for me in eliminating mouth and throat sores. I am an 8 year survivor. Keep a positive attitude and he will do fine.