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IzzieCat · June 2006

I was diagnosed in March with stage III colon cancer, with 3 out of 21 lymph nodes positive. I just turned 50 last December. It had not spread to any other organs. I was totally shocked! I also have type 1 diabetes (insulin dependant) and a form of Lupus. I have completed my first 6 weeks of chemo (5FU & Leucovorin) without too many problems, but my oncologist told me last week that I have only been getting 75% of the dose I should have, because I was on oral Methotrexate for the lupus. I was not aware that I was on a lowered dose. Now I am really worried that chemo will be harder on me because of the higher dose. I have also been very depressed about having cancer. I am trying to stay positive, but it's been really hard not to think that it's going to come back after the treatments. I have been reading your stories here for a few weeks, and I am encouraged by the positive energy here.....Do any of you think that an increase of 25% of the chemo drugs will make a huge dufference in how I am tolerating it? I am so worried that I will feel so sick that I won't be able to eat, and being on insulin, not eating is a terrible thing! I know that's it's probably a stupid question, but it's really got me worried. And I wanted to add that I didn't take the FolFox chemo because I already have neuropathy from the diabetes (I've had diabetes for 23 years) and i didn't want to risk the Oxaliplatin making it worse....my doctors agreed. Is the 5FU treatment as effective as the FolFox? I need help adjusting to my "new" life with cancer.......Thanks in advance......

Mary.

catherinee · June 2006

I am new here too. I am a colon cancer survivor. I had stage 2 with no lymph node involovement. I did the same chemo that you are having. I do not have any other health problems but I faired pretty well with the treatment. I felt tired and towards the last three months of treatment I had some vomitting but only the day of treatment. I had mouth sores but my Dr. gave me something called "pink magic" and that took care of it. I feel like I am not giving you the information that you need but I will be praying for you. It sounds like you have a lot going on. I was able to eat in fact I did not even lose any weight. Again I will be praying for you. You are not alone. Take care

spongebob · June 2006

Ahoy, Mary -

Welcome to the SemiColons!!

Pleased to meet you - sorry it had to be here, but everything for a reason, eh? You have found an amazing group of people who you can come to for advice, jokes, to vent, to ask off the wall questions, to share your knowledge with. We actually have a good time here and share a lot more than cancer. Check out some of our personal pages and photos from our semi-annual gatherings called Colon Palooza.

Anyway, about your questions -

Chemo affects everyone differently so while one person may do fine with 100% of a dose of 5FU/Leukovorin, someone else will have a 75% dose and be ill. The effects of chemo are cummulative as it builds-up in your system. The common treatment for stage III now usually includes Oxaliplatin, but for many years - and many survivor stories - the treatment for Stage III was just 5FU/Leukovorin.

It's perfectly normal to feel depressed about having cancer - and according to what I have read, chemo drugs sometimes exacerbate those feelings. Have you considered checking out a local group conseling session? If not, this is a great place to get a similar experience, plus the anonymity of the internet allows you to say things that you might not share in a group session. Be sure your doctor knows about your depressive feelings - of course being down about having cancer isn't the same as clinical depression.

You have taken an important first step by sharing your concerns. Get outside and enjoy the spring weather (it's raining in DC today, so I'm going to opt to stay inside myself).

Have a great day!

- SpongeBob

alihamilton · June 2006

Hi, I am sorry you are going through all this. Your feelings and fears are quite to be expected and it is important to discuss your concerns with your oncologist. Here, 5Fu/Leukovorin is still the protocol for Stage 111. My husband was treated for his stage 111C (11 out of 18 nodes) with 5Fu/Leukovorin after his diagnosis nearly three years ago. He received a total of 30 infusions and is doing brilliantly today. As far as I know he was on the full dose all the way through but they did have to space out the treatments following radiotherapy as he became quite ill. The doctors have to take into consideration your current state of health and prescribe a dose that will fight the cancer but, at the same time, not cause any more problems than necessary. Everyone worries the cancer is going to come back! I is important to take one day at a time and try not to think about the future too much. There is no point in any case. Worrying about your appetite could affect it more than the treatments. My husband managed to keep eating all through in spite of the fact that food tasted pretty awful but he just kept going, knowing how important it was to keep up his strength. Try to find the foods that tempt you the most and eat several small meals and snacks if you cannot face a large meal.

Finally, please be assured that all your feelings are completely normal and no questions are stupid. Talk to your doctor about your concerns and come back to this forum whenever you want to "chat"

KathiM · June 2006

Welcome! (I HATE saying that only because it means you have met the beast!).
Everyone so far has said everything I would say...ESPECIALLY the part about small, frequent bites of things that sound good. \
As far as the reoccurance fear...well....we ALL have it...regardless how far in the past our fight was...I already had that reality...breast cancer followed my rectal cancer by 8 months. BUT I really try to put it in perspective...you are WINNING the battle against the beast EVERY DAY that you are alive...and winning is the name of the game...
That old beast is a BIG LOSER!!!
Remember the saying about fear...to voice it is half the battle! Hugs for you!
(OBVIOUSLY, you now know I am the lemonade one...I jokingly say the beast left because I laughed at it so much...)
Hugs, Kathi

jsabol · June 2006

Hi Mary,
Welcome to the club, and so sorry that you have met the membership requirements. I am also stage III, 1 pos node, just turned 53 at diagnosis nearly 3 years ago. I also had just 5FU and leuco. Oxali was in its last stages of clinical trials at the time, I believe, and my onc and I agreed that the risk of increased side effects might outweigh the benefits.
You sure have a full plate with managing your diabetes and lupus, BUT, as I was told when I first found this site, you will get through this, one day and one treatment at a time. Are you followed for your diabetes at a medical center? I wonder if a place like that may have some additional info about managing chemo with diabetes. Keep asking your doc about the dose related concerns you have. Many people have chemo dose adjustments as time goes on; I don't know how the changes affect potential outcome, but your onc should know more.
My side effects were not horrible, except for lack of appetite and pretty major fatigue. I was able to take a medical leave for the last 3 months of chemo, and I focused on nutrition and rest, and meeting the needs of my kids. I would cruise the grocery store, hunting for appealing and healthy snacks. Multiple small meals sat better with me.
The shock of the diagnosis never really went away for me....I still can't bleieve it, but it sure is true. The shock has lessened, and the further out from treatment I am, the more hopeful I have become.
TAke care of yourself, stay strong; you can do this. Keep in touch here with concerns you have; we've all been there! Good luck, Judy

cherriann · June 2006

like others said sorry to welcome you but glad you came. although i didnt have to bad of a time on chemo i found that eating small amounts throughout the day helped with the nausea.cant tell you how much difference the 25 percent would make. this site is great for those days when you feel like going into a cave, such great caring people and we all really do understand. i hope you get some answers to your questions.
take care, cherri

Betsydoglover · June 2006

Hi Mary -

I am sorry you have to be here, but welcome to our club. It sounds like you are doing well so far with chemo - the increased dose may not significantly worsen side effects at all. Please talk with you doctor - I assume he / she understands the importance of eating when on on insulin and will not want to put you in a situation where you have difficulty eating sufficient amounts of food. Like others have said, I did find that multiple small meals worked better than 3 square. And I tried to keep small and at least somewhat nutritious snacks around so that when I did feel like eating it was easy to do so.

Oxaliplatin is pretty standard for Stage III patients now, but in your particular case it is probably not worth the risk. And there have been many, many Stage III survivors who did not take oxaliplatin - as that has only recently come into use for Stage III. Being Stage IV I was on oxaliplatin in addition to Xeloda (oral 5FU) and Avastin, but I - and my oncologist - always felt that the oxaliplatin had the most impact on my appetite - so hopefully the 5FU alone will have less impact.

I wish you all the best and keep coming back here for encouragement and with specific questions.

Take care,
Betsy

pepperdog · June 2006

spongebob said:
Ahoy, Mary -

Welcome to the SemiColons!!

Pleased to meet you - sorry it had to be here, but everything for a reason, eh? You have found an amazing group of people who you can come to for advice, jokes, to vent, to ask off the wall questions, to share your knowledge with. We actually have a good time here and share a lot more than cancer. Check out some of our personal pages and photos from our semi-annual gatherings called Colon Palooza.

Anyway, about your questions -

Chemo affects everyone differently so while one person may do fine with 100% of a dose of 5FU/Leukovorin, someone else will have a 75% dose and be ill. The effects of chemo are cummulative as it builds-up in your system. The common treatment for stage III now usually includes Oxaliplatin, but for many years - and many survivor stories - the treatment for Stage III was just 5FU/Leukovorin.

It's perfectly normal to feel depressed about having cancer - and according to what I have read, chemo drugs sometimes exacerbate those feelings. Have you considered checking out a local group conseling session? If not, this is a great place to get a similar experience, plus the anonymity of the internet allows you to say things that you might not share in a group session. Be sure your doctor knows about your depressive feelings - of course being down about having cancer isn't the same as clinical depression.

You have taken an important first step by sharing your concerns. Get outside and enjoy the spring weather (it's raining in DC today, so I'm going to opt to stay inside myself).

Have a great day!

- SpongeBob

I'm new to the site; just reading some of the posts. My husband was diagnosed with colorectal cancer 5 days after Christmas. Underwent rad/oral chemo prior to his surgery on April 19. He has been healing; had port installed this past Friday (9th) & has his first 5FU drip treatment tomorrow (13th). Can anyone explain what the Oxaliplatin does and what side effects it may bring? We are very nervous about the drip chemo. The first course he took was oral and seemed not to affect him so much, although the radiation kicked his butt. He had rad burns, severe pain, especially when going to the bathroom, and gained 30 pounds. Has lost 20 since surgery and has a temporary ileostomy we're dealing with until it can be reversed after the chemo. Can you give info about what we may expect during the 12 chemo treatments we're just beginning?

Moesimo · June 2006

Welcome,

I am a stage 3 survivor. I had 2 out of 12 nodes positive. I am almost 3 years, NED. surgery was 3/26/03. I had chemo, 5 fu, radiation and then surgery. I was supposed to get 12 more chemo treatments of 5 fu and leukovorin, but I was so sick I received only 4 treatments. I have had 3 surgeries, 11 hospitalizations. I never thought I would get better. I finally feel good. You will get better.

I was 46 when diagnosed.

Maureen

ladybug52 · June 2006

I was diagnosed the first part of june this year with early stages of colon cancer, no lymph nodes involved, I am scared, because I have a sister who has stage 32 ovarian cancer.
I have my first meeting with my oncologist on monday afternoon. I am praying.

I am really nervous about this.
I just turned 52 this past april.

I'm new here

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