CSN Login
Members Online: 21

Chemo

tape
Posts: 2
Joined: Sep 2004

I was diagnosed with stage III colon cancer a little more than one month ago and have undergone a surgery to have ¼ of the colon removed recently. My pathology report said that 2 out of 21 lymph nodes were positive and the doctor said I should be treated with chemotherapy. Since I am only 29 years old, the doctor said an aggressive treatment should be used. The drugs consist of standard 5FU/LV plus one called Oxaliplatin (FOLFOX). I did a little bit searching and found that Oxaliplatin was mainly used for stage IV colon cancer patients, although there were studies showing that Oxaliplatin also has good effect for state III patients. I am particularly scared/nervous about the possible side effects. I have a two year old son and a five year old daughter, and don’t know how much I can still take care of them once chemotherapy starts. Is there anyone who is using the same drugs as I do? Was the effect severe? Today I found a web site about “Moss Report” when surfing the web (http://cancerdecisions.com/091204.html), where I found an article basically saying that whether undergoing through chemo or not does not make any difference. I found that article (published in the August 4, 2004 issue of the Journal of the National Cancer Institute) and the conclusion was based on a national study on more than a thousand colon cancer patients. If this is so my question is why should I undergo a painful and costly chemo process? It seems to me even researchers in colon cancers differ in opinion about the usefulness of this therapy. Does anyone feel I should not go through the chemo process?

Btrcup's picture
Btrcup
Posts: 287
Joined: Jun 2004

Hi, sorry to hear about your diagnosis. But you have come to the right place. My husband was diagnosed in Feb with Stage IV colon cancer (13 out of 21 lymph nodes). He has been undergoing chemo (5FU/LV, Oxiliaplatin & Avastin) since Apr. He is only 42 years old and we have 2 young children (7 & 4). He has tolerated the side effects very well. He gets his treatments every other week (oxy & avastin in office and 48 hr pack for 5FU). The worst side effect for him are diarrhea & neuropathy (tingling & numbness in hands and feet and cannot tolerate cold caused by Oxyl). His side effects were not severe and he was back to work after a couple of days.

The only setback for him now is that he has no feeling in fingers & half of foot (from toes to middle of foot). This is caused by the Oxyl. and may or may not be permanent. His onc gave him a regiment of B6, Maalox & tums to take after his chemo treatments to help with Neuropathy, but he did not do it. This may be the cause of the numbness. Onc says only time will tell if damage is permanent.

As of July, hubby's scans showed "no evidence of disease". Well I hope this helps. Good luck to you and your family.

Linda (Baltimore)

tkd3g
Posts: 768
Joined: Aug 2004

Hey Tape. Nice that you have joined us, sorry that you need to.

I was diagnosed in March 2004 with stage 3 rectal cancer. I had presurgical radiation and chemo, then surgery and I am now on the chemo that you are facing.

I am a 42 year old mom of 3 girls ( 6,13,and almost 16).

I didn't have any positive lymph nodes according to the surgical pathology report ( removed 13). My oncologist said the same thing to me, " You are young, strong and healthy, so we are going to treat you very aggressively." ( Oh, thanks for that!)

I think you have to do some soul searching. No one can make this decision for you. Gather as much information as you can. Talk to you docs and nurses. Weigh the options. I'll tell you, I am struggling with this right now. I wonder if I should continue or go a different route ( nutritional). I have decided to go as far as I can with this treatment. As far as I'm concerned I'm cancer free right now. My husband stands by me and said he would support any decision that I make. That helps.

Ok let's get to the side effects. First off, everyone is different. You may not get any effects ( unlikely though ) or you may get many. Like me. :) This is what effects me: First couple of days after treatment I am very sensitive
to the cold. I have to wash my fruits and veggies in warm water. Have to wear gloves to take things out of the fridge and freezer. ( and supermarkets) I get a jaw pain that happens on the first couple of bites of food. That goes away really quick. I have a nice little dry cough that plagues me and I feel a bit sick for a couple of days. No nausea, which is nice.

All in all, the side effects are managable. Annoying, but managable. Again, you may not get what I get. And if they get tough, the doctor can always lower the doseage.

I wish you the best in your decision. I'm sure you will get a lot of input here. There are many on this treatment.

Let us know how you are doing.

Barb

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Tape,

I also was diagnosed with Stage 3 colon cancer and had about 1/3 of my colon removed. I had 2 out of 12 nodes test positive, but the doctors highly recommended chemo treatment. You are the only one who can make the final decision about the type of treatment, if any, that you take.]

My thoughts, as I made my decision were, "I have 2 beautiful young daughters and I want to see them finish college and spend time with them. I would do any thing, I mean anything, to live a little longer to achieve that goal".]

I took 6 months of chemo, 5FU, Leuk, and Camptosar. I had some sickness, the usual vomiting, diahrrea, general nausea, fatigue, but not too unbearable. A couple of times I had some intestinal discomfort and bloating, but the 6 months went by and now I feel wonderful. That was 1 1/2 years ago. Yes, I am glad I chose the route I did and I would do it again.

I'm so sorry about your diagnosis. You are so young, but you have come to a great site and will find lots of compassion, information, advice and prayer. It is like a great big family here.

Let us know how you are doing and what your decision is and we'll all help you get through it.

Take care.

Kerry

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hey tape,

I was stage 4, as mine spread to my liver. I had the same chemo drugs that you will be getting, and I had no side effects. Today, I am cancer free. I was a healthy 33 yr old mom of a 2, 4, & 7 yr old when I was diagnosed. They kept me going. I worked full time while getting treatments, and never missed a day, with the exception of recovery from surgeries. You can get through this! Detection is half the battle. So, in other words, you're already halfway through this whole experience!

You can come here anytime for questions, information, or just to vent about this situation. We all understand.

In October, I will be 3 yrs clear...there is hope for everyone!

Keep in touch,

Stacy

LindaJean
Posts: 19
Joined: Jun 2004

Hello Tape,
I had surgery in March for my colon resection and am stage III with 1 positive node out of 30. I am currently on the Folfox regimen and have 2 treatments to go that will make a total of 12. For the most part I have worked and have experienced few side effects. Usually only experience fatigue for a few days during treatment although as has been mentioned everyone is different. I wish you the best of luck with your decision making process!

jrasnic
Posts: 14
Joined: Jul 2004

Hi Tape,
I am so sorry to hear about your recent diagnosis. My husband, 28, was diagnosed with stage III colon cancer -- 3 of 54 lymph nodes -- in February 2004. He has just finished 6 months of the FOLFOX treatment. However, he only did 10 of the 12 Oxaliplatin due to serious neuropathy. Other than that, the side effects were pretty much fatigue, insomnia and mild nausea that was controlled well with Zofran. It's not a pleasant experience -- but age is on your side and you will get through it. Also -- just be sure to ask for help from others, as far as your kids are concerned. If you have a good support system, they can help you with laundry or bring food on chemo nights. GET HELP! Don't try to be Superwoman! My husband was super exhausted during and after his 3 day treatments.

And as far as the research is concerned -- if you take a closer look at the study from August, you will see that the 10 year study ENDED in 1987. The treatment options studied are no longer even used. The study also showed that chemotherapy did buy people YEARS. You should also know that the statistics on the Oxaliplatin are also very promising. In the preliminary 3 year study, which ended last summer, they discovered that this drug lowers the incidence of reccurence by 6% -- meaning that Oxaliplatin raised the 3 year reccurence free number to about 78%. That doesn't mean that all of those people will be cancer free 10 years from now. But 22-26% of people are meeting that 5 year mark that they wouldn't have with surgery alone.

Do a little more research. I know it's a tough decision -- especially knowing that there is 50% chance that it is gone. Why go through the pain and possible complications?

But the research does show that it buys people time -- and that's all any of us are asking for. More time for love and laughter and fun! I know it's a lot to think about. You have come to the right place for support -- regardless of what you decide.

There is a woman who posts often on this board -- she is 3 years out -- and opted to drink carrot juice instead of doing chemo. You have to do what's right for you. My husband says that it was worth the piece of mind -- he likes that 78% survival at 3 years out -- and plans on being in that part of the statistics.

Tape, there is a 50% chance that they got it with the surgery. And it's true that no one is certain about the curative effects of chemo in cases where surgery didn't get it all. But -- we do know that it can buy you time -- YEARS. And maybe in 2, 5, 10 years they will have the cure. And being that you're a mom -- I know how precious every year is.

I wish you the best of luck! Let me know if there is anything I can do or any questions or worries I can help you with . It's so hard being young with cancer!

All my best,
Jackie

jana11
Posts: 708
Joined: May 2004

Hello and welcome. Just a few quick bits of advice. Most/all of the research was not done on patients <40 years of age. The cancers that affect us are usually more aggressive (which means they respond to chemo better!!) I am now 34, diagnosed at 32 years old with stage 3. I am currently stage 4 with No Evidence of Disease. I am on xeloda (oral 5FU) and oxaliplatin. I continue to work full time. I get oxaliplatin every 3 weeks. My hands and feet are VERY cold sensitive and I am tired the week of chemo. After that, I feel pretty normal. For about a day I get jaw pain with the first bite of food, but it resolves quickly. I can't drink cold beverages for about 10 days, but it goes away each cycle.

The chemo isn't terrible and I think it is worth while. Only you can make the decision, but the research doesn't apply to us youngsters. Talk to the onc.

You must do whatever is least likely to give you regrets if the cancer returns. God forbid this happens, but think long and hard. We are here for any questions. As others have said, let your friends and family help with your children and you do what is right for you now. If you recovered easily from surgery, chemo won't be too bad. Everyone is different in how the chemo affects them, but it hasn't been too bad for me.

Best of luck to you. jana

lawleete
Posts: 25
Joined: Feb 2004

3 1/2 yrs. ago i was diagnosed with stage 3 colorectal cancer with 10 out of 15 lymph nodes involved.i was treated with leucovorin and 5fu for 6 months.my cancer has come back in 2 lymph nodes and on 1 of my kidneys.i'm now on leucovorin/5fu and oxy.my side effects have been being tired,a little nausea,tingling in hands when touching cold items,a sore jaw for the 1st couple bites of food and some stomach pain that put me in the emergency room that we're still trying to figure out the reason for.as others have posted,you may have very few symptons.it just depends on each individual.i want to live as long as possible,so i'm doing chemo.trust your oncologist and if you don't,find another that you do.you've come to right place for support.we will help you get though this.and you will get though it.prayers are sent your way.god bless all cancer patients and their caregivers.

crazylady
Posts: 544
Joined: Jun 2004

Hi Tape,
I was diagnosed in March 2004 with rectal cancer. Had radiation and chemo and then surgery. Now nodes were involved and I am now back on chemo (xeloda) as a precaution. I am 48 and the oncologist wanted to treat the cancer aggresively. So far, I do not have any major side effects. I just started a full time job and am a graduate student. I decided to go back on chemo because I have 7 children and 2 grandchildren and want to be around to see them all grow up. I figure that any suffering that I do now is worth it as it gives me peace of mind to know that I did everything possible to prevent a reocurrence.
Good luck!
Jamie

taraHK
Posts: 1961
Joined: Aug 2003

Welcome. I was diagnosed with stage III rectal cancer in Dec 2002. I had presurgical chemoradiation then surgery then postsurgical chemo. I'm 1.5 years post-surgery and NED (yea!!).

It is a tough decision and yours to make. For me, I wanted the best possible assurance that my medical team and I had gotten rid of all the cancer. I felt lucky that I was healthy and strong going in to the battle, so that I could elect for relatively aggressive options. I have two children, and want more than anything to be around as they grow into adulthood.

I was offered Oxaliplatin as a clinical trial at the time of my presurgical treatment. I turned it down, because at that time it was being used primarily for Stage IV and I didn't even know I was stage III. Now, less than 2 years later, I would probably have chosen it (and my oncologist would have more reason to recommend it). I had 5FU/LV (Mayo regime). My oncologist was able to direct me to a lot of evidence from published studies about the benefits of postsurgical chemo. My side effects weren't bad at all, although I understand the folfox is different.

I wish you all the best with your decision-making and your treatment. Please know you can post here anytime - it is a wonderful site - full of both information and support.
Best wishes,
Tara

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Tape--welcome to the "family". Just as an example to put into perspective the VERY different reactions to chemo for almost everyone.
I am more fortunate than many here, being dx'd stage 2, surgery, 1/3 colon removed, no nodes involved. Cancer went thru the bowel wall. I did 6 months of chemo---5FU / Leucovorin. As Monika said here, Bert had more problems with the 5FU/Leuc. than he did after they added Oxaliplatin. I found the 5fu/leuc. combo tolerable--but only just--really had a hard time of it, particularly the last 2 months of treatment. Fatigue, nausea and insomnia were the worst symptoms with a metallic taste. The nausea was really hard to control.
So from this you will see that others have posted the added Oxy. will sometimes not have a greater effect on you--at other times it will. Everyone here posts different effects no matter what they are on--I guess that our genetic make-up, gender, age, surgery and physical condition all has a lot to do with any effects sufferred. I am currently NED 7 months out. Still have some after effects but cope ok.
Jen and I encourage you to give yourself the best chance you can--even a small added % for survival is a bonus--Trust in what your mind is telling you. Emily(our resident juice guru) chose the natural way and is bouncing with joy, god bless her.
Our prayers and luv are with you Tape--kanga n Jen

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

Hi Tape'
Sorry to see one of your tender years having to go through this . I was 48 at dx stage 3 colon 6 of 13 lymphs effected and frightfully aggressive according to my surgeon . I had most of my descending colon removed and was scheduled for 6 mos of intensive 5FU /leuc. It nearly killed me with bowel osmosis ,I was heading for renal failure. I was then changed to a very old regime of 5Fu and levamisol which I had every tuesday for a year. Did it help? I don't know. What I do know is that I felt that it was important to take every opportunity for me to fight cancer. If they had have offered rad I would have done that too. In Jan I will be 7 years clear I have had no recurrences and but for one small polyp no signs of any more primaries . I have had considerable problems with other things eg pancreatitis ,gall bladder ulceration and twisted bowel but I am still upright and able to work 8 days a week and go fishing on the 9th. Good luck whatever you decide ,my thoughts will be with you . Ron.

lhsteer
Posts: 28
Joined: Jul 2004

Ron,
Hi. I am so happy for you to know that all you went thru and here you are. I do agree with you I was diagnosed in May after a dr. had been treating me URI only pain did not go away after a month he sent me to have a colonostomy done and that is when they found tumor in colon at that time the docs told me there was nothing they could do for me.I immeadiately called my girlfriend who works for nci out of D.C. and colon cancer was her speciality she told me to call back and have them refer me to the University of Iowa Cancer Clinic well needless to say I had to go into doc office to get referred so 3 days later she flew in for my apt. to get referral and we immediately got in and when the surgeon saw my x rays he told me I had to have surgery right away or I would be dead in 24-48 hrs because my colon was perferating. Well of course when I woke up it was the most unbelievable pain I have ever felt, trust me I had 4 children, hysterectomy, tubilgation and they were nothing compared to this, anyhow survived and doing the chemo of ful fox, avastin was on oxy they just took me off today because of too much tingling and my onc does not want nerve damage only have 3 more sessions to do I do 2 in hospital and 48 at home, I am like you I will do what ever it takes to survive I will not give up in fact after my last session is done I am going to new mexico to a medicine man to do a ceremony for me, I know some people do not have the same belief as I do but I put all my faith into my spiritual healer and he knows that this medicine man has special powers so I will go and hopefully my second surgery will be fast and speedy recover and I will be cancer free and on with my life right now can not work doc put me on SSI so I sit at home reading as much as I can, resting and doing what I have to do just to keep going with a positive which I know is very important you have to be positive,keep negative out of your life, and try to be stress free and no drama if you can do that
anyhow enough rambling just wanted you to know don't give up life is to precious for us not to take every last breath. luv all you guys karen you can email me at lhsteer@aol.com anytime ok

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi tape,

Well you asked so I will tell you. If you doubt that you want to do the chemo then know you have a choice NOT to do it.

I am a Stage 3 lymph pos zero mets sigmoid colon cancer survivor of three year having NOT done the adjuvant chemo that was recommended--5-FU/leucovorin.

I did all Eastern Meds to heal. It was extensive and costly but I am alive and healthy. There is a 5% chance of not making it past the very first treatment. It does happen. I am allergic to tylenol for crying out loud so I was scared to death to try the chemo. Plus my sister died of this 12 years ago and I watched her go through chemo and rads and still die. It was not pretty.

I never lost my hair, I do not suffer from bouts of diarrhea, I have never had to be hospitalized from the chemo reactions, my white blood cell counts do not go dangerously low, I do not fear secondary cancers from the chemo, my heart and kidneys have not been damaged (sometimes beyond repair) from the chemo, I have not lost sensation in my extremeties, hot and cold things do not bother me, I don't have mouth sores and I have never ever felt so healthy!!!

If you read my webpage you will see an overview of what I did.

Dr. Moss's book was the first one I read while still recovering from my surgery. A fabulous book also is Beating Cancer With Nutrition by Patrick Quillin. REgardless of what direction you go, chemo or not, it is a wonderful reference.

I had a 20 month old baby I was still nursing when I was dx'ed. I have 5 kids. My parents moved up to help me take care of them all while I went through my "alternative" treatments. There was still a healing process from the surgery and while my body detoxed I was very fatigued.

Anyway, that is my opinion: that you CAN SAY NO if you want to. There ARE OPTIONS!!

please contact me if you want more specific info.

peace, emily who is the resident radical! heehee

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Oh I guess I am the resident juicing guru but really I don't have a beard to my knees or wear a turban....but I do do yoga! haha

:-) and yeah I jump around with joy! WOOHOO! when anyone starts juicing organic carrot juice.....

and don't forget those blueberry smoothies full of flax oil and green powders!

peace, emily the juicing goddess

allsmiles
Posts: 25
Joined: Jun 2004

Hi Tape,
I have to agree with Emily. While my husband was unable to do the alternative therapies due to the sheer size of the tumor (it greated too many problems) he did finally realize that there are options. If he had it to do all over again...he would have started with the natural alternatives, foods, supplements, enzymes, etc. I believe in juicing more than eating. My kids love the fruit juices I concoct (sp?) for them after school and I know I just feel great after drinking all that healthy juice. I still can't do beets very well...just too woody for my taste..reminds me of an aged red wine (ugh!)
Well I know I am rambling but just remember you will make the best decision you can at the time. You can always change course too if you feel something just isn't right for you. The main thing is not to wait ... get started on something right away and GIVE IT EVERYTHING YOU'VE GOT! You'll be in my prayers.
Grace

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Hi Tape, It must be your choice, but I'll tell you my story.I was diagnosed stage II rectal cancer in July, 2003. Had colon resection, no positive lymph nodes, clear margins. No spread. No further treatment recommended. I was told that chemo would only decrease my chances of recurrence by 5%, so I passed. In January, only 6 months later, my cancer reoccurred. They wanted to treat me aggressively this time. I was only 49 years old then.I had 6 weeks of radiation and 6 weeeks of 5FU continuously by port. Then surgery and permanent colostomy. I spent 56 days in the hospital and almost died. Would I have gotten it the 2nd time if I had taken chemo the first time??? Only God knows. I just knew that the 2nd time I was going to do everything to keep it from coming back. Someday, it may, but I'll deal with that, if and when it happens. Till then I will cherish each day,even while I'm still recovering. Still not in very good shape and it's been since May 20th but better than I was becasue of everyone's prayers here and a wonderful surgeon and family. Sorry so long, but I just want you to seriously consider your choices. Good luck and keep us posted.
Love and prayers, Judy(grandma047)

tape
Posts: 2
Joined: Sep 2004

Thank you all for your replies. You are all so kind and supportive. I am lucky to find
this site from the beginning.
I've decided to take the chemo option and yesterday I had the surgery for mediport
(to connect the pump I think). I felt nausia and couldn't eat anything for the rest of yesterday.
Not sure if this is normal reaction, but I am ok now, and next Monday I will start the first
chemo cycle.
I have a two year old son and five year old daughter. I love them so much. The doctor is right that I should think of my children and do everything I can to prevent a recurrance, even if chemo only raises the chance by a few percent.
I guess one reason I didn't want the chemo before was because somehow I didn't feel (or even
believe) that I had a cancer and chemo did scare me. I hoped somehow there was a wrong prognosis.
Everything about me just seems to be so normal. Now I know I will have to accept it (that I
have a stage 3 cancer,T1 N1 M0) as a fact, face it, and try to overcome it. The surgeries I
went through and the recovery processs constantly remind me that I am a cancer patient.

jrasnic
Posts: 14
Joined: Jul 2004

I just wanted to wish you the best of luck on this journey. It's not easy -- but you can do it!! And remember that we will all be praying for you -- and supporting you the best we can. This is the best online support group in the world!

Take care,
Jackie

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network