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FOLFOX6

SisterlyLove
Posts: 14
Joined: Apr 2005

I need some information. I have been visiting the website for about 4 weeks, trying to learn all I could about this disease that has blown my world apart. My sister was dx with stage 3 colon cancer about a month ago. The surgery is complete and that went beautifully!! Now we start chemo. Has anyone had FOLFOX6? Also, is colon cancer classified by specific names, like basal cell or squamous cell? The dr referred to it as "apple core carcinoma". I can't seem to find anything out about this name. If anyone has any 411, I would greatly appreciate it! I went to a forum on colorectal cancer, but it involved mostly the screening and the family history factor. Thanks for your help!

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

hello sister!

I so know what you are going through! My sister was dx'ed and it tore our world to shreds.

And then I got my own dx 3 1/2 yrs ago. I was stage 3 adenocarcinoma of the sigmoid colon. I'm sorry I cannot help you with the Apple Core thing. Never heard of it either. Hmmm.

I CAN tell you that as a Stage 3 survivor that your sister CAN beat this!! Ok? Take that to the bank. And guess what? I didn't even do any FOLFOX6. In fact I did not chemo whatsoever!!

I opted not to do the chemo (I watched my sister) and chose instead to use Eastern Medicine, Macrobiotics, Juicing, herbs, mega vitamins, exercise, prayer, detoxing of toxic chemicals AND emotions (and people--get rid of the whole kit n' kaboodle) and am alive 3 years and 7 months later continuing to remain cancer free!!!

You are one awesome sister coming here to find info. Back when my sister was dx'ed there was not internet access for me. I didn't even go to the library (in my defense I was preggie with baby #3) so you are a wonderful sister!! She will need you now more than ever.

My sister was only 29 when she was dx'ed (I was 26 at the time--39 at my dx).

If you would like to give us your sister's name we can add her to our prayer list. There are many prayer warriors on here as you can imagine. Cancer, like in foxholes, knows no athiests.

peace, emily

SisterlyLove
Posts: 14
Joined: Apr 2005

Hello Emily,
Thanks for your comforting words!! Some days I feel as emotional as she does! After your sister was dx, did doctors suggest that you start screening. My sister is already on my case about me....when she is all I am concerned about! She elected to go thru chemo, but I do think she is doing some other things as well: diet, exercise, PRAYER, ionic massages, did I mention PRAYER?!?! I did go to the library for info; soem books are so old the info is not worth reading. I get alot more on the internet. But I am cautious of some of the info out there. We lost a father to cancer, I will NOT lose her! Keep us on your prayer list! Thanks again for your words!

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

hi sis,

Funny thing is that NOT ONE DOCTOR ever suggested to the rest of us to get scoped. Her cancer was in her small intestine. Everyone always commented on how rare her cancer was. To us, with no family history of intestinal cancer, it WAS rare. We figured it was a fluke. (not to mention that she had a terrible diet subsisting on chocolate and Coke). Every time I went to the doctor and gave them my health history they were told of her cancer. Not once did they look at me and say, "get a scope". Even when I went to a surgeon with hinder problems (hemorrhoids-ugh). Can you believe it???

Not until I was having severe pains and bloody mucousy diarrhea did a doctor suggest it after she heard about my sister.

In hindsight (no pun intended) we all should have been scoped. It would have saved me an incredible amount of heartache.

So I'll tell you: GO GET SCOPED!!

Get a full colonoscopy. They are a piece of cake. The worst is the prep (colon clean out) but the actual process is not bad (good relaxing drugs) and I like to stay awake and watch.

A good book for all cancer patients regardless of what kind of treatment one chooses is Beating Cancer with Nutrition by Patrick Quillin. It is full of info.

The Makers Diet by Jordan Ruben is a very informative resource for colon health. I have read a ton since my dx (I had to since I did not follow doctor's orders and struck out on my own) and this I found to be the best info. The author healed himself of a colon disease through diet. Even if you don't follow the diet it is a wealth of info.

What is ionic massage? Massage was part of my protocol as was lymphatic drainage.

Hope this helps.

peace, emily

neeliec
Posts: 106
Joined: Mar 2005

Hi,
I was diagnosed with stage 3c colon cancer after they found an apple core lesion. Stage 1 means the cancer is contained-- not in the wall. Stage 2 means it is through the wall but not in the lymph nodes. And Stage 3 means that it has gone through the wall and was in the lymph nodes.An apple core lesion means that the colon has been invaded by a tumor and looks like if the core of the apple is left. The core of the apple that is left is the only part of the colon-- in that particular place-- that does not have cancer. Imagine a hose that is almost all blocked, except for a little , long core-- the apple core.
My surgery went beautiful too-- but they found 21 lymph nodes with cancer. I start chemo on Friday-- Follfox 6-- leucovorin, oxaliplatin, and fluorouracyl (5FU). I am scared, but hopeful. I would love to keep in touch with you. It seems that your sister and I will be going through pretty much the same at the same time.
Let me tell you what I have found helpful sooo far.... When people talk to me like if everything is normal. I worry when all that people can talk to me about is my illness. I also do not like when people treat me as if I were going to break. I do not like negative thoughts or people impying that in some way I could have avoided this or telling me what I need to do to get better based on ignorance even if well intended. I have had to learn to "psyche" myself when I am with some people that want to tell me about their relatives experiences with cancer and who did not make it. I need the positive, loving, encouraging remarks and the caring ears to hear when fear takes over. I hope this helps in some minute way for you as you help and encourage your sister.Blessings,
neelieC

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

Hi Sis. Remember that the emotional drain of having cancer very much effects carers and loved ones. Your concern is natural for a loving sister and will take a great deal of strength to come to terms with. By you trying to access as much info as possible will go a long way to helping you understand your sisters ilness and to help you cope with what lies ahead. It has been said many times here that cancer is in some ways much harder for family and carers, mostly due to their feelings of helplessness. Keeping positive and allowing your sister to use you to lean on in hard times will be a blessing to her. At the same time it is also important that you make sure you are not overtaxed. Take care of yourself as well and do not become resolved that your own health and daily life suffer. You will be of no help to your sister if you allow yourself to become depressed, unwell throughout this.
As for screening....."my sister is on my case"
You would do well to get a checkup and monitor your own health. There are firm advocates here who's train of thought involves the high possibility of genetical hereditary possibilities with cancers. I certainly believe that genetics play a large role in cancer formation(my own mother died of brain cancer)
There are webpages that highlight this part of the disease.(maybe someone here can help with that?)
I am glad your sister got thru the op well. Be tolerant with her during her chemo. We all suffer various side effects and chemo can be a real battle for some. Come here often and ask as many quest. as you like. There is always a wealth of info available. Look after yourself Sis, our best wishes, luv n prayers to you both, kanga n Jen

SisterlyLove
Posts: 14
Joined: Apr 2005

Hi neeliec,
Your life is a mirror on my sister's!! Everyone is treating her as if she is a china doll! Some of her friends are scared to even talk to her b/c they do not know what to say. And as with you, several well-intentioned friends have scared the h--- out of her with horror stories. I know people think they are helping, but any story with a bad ending does not need to be told! I have been searching the internet for happily ever after sotries for encouragement! Once she starts her treatment, I will share you with her! Righ now, I'm not sure she is at the point to talk openly about how scared she is! I try to encourage her daily...just like you said you needed also! You BOTH will come through this! Your kindness has helped tremendoudly! She sometimes wonders if her feelings are normal, I tried to tell her they are. She will be doing great for a few hours and then the "thoughts" will pop in her head and she will call me or Mom sobbing looking for reassurance. I hope this has helped you also. When I read your entry, I wondered if you were my sister using an alias! PLEASE keep me informed as you go through this healing process, b/c I know you too will BEAT this!!!! I hope all goes well with your first treatment. I will be in touch!
In God's Love,
SisterlyLove

SisterlyLove
Posts: 14
Joined: Apr 2005

Hi NeelieC,
I have sent some info to your e-mail about my sister. There sound so alike it is scary! Please check your e-mail on this site. Thanks
Sharon

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I had eight rounds of F-6, and it damned near killed me..others will tell you that they sailed through it w/o problems, but I still have residual side effects after almost a year. It also killed my lung mets for a while, then they came back.

SisterlyLove
Posts: 14
Joined: Apr 2005

Hello nanuk,
I'm sorry to hear of your experience. I was hoping that it was going to be fair experience for my sis. What type of residule sideeffects are you having now? My sis have a high pain tolerance and low nauesa tolerance. That is what I'm worried about. Are going thru more treatment for the lung mets? Take care and Godspeed!
SisterlyLove

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

What a wonderful caring sister you are! I was initially diagnosed 2 1/2 yrs ago with stage 3, had surgery, 6 months of chemo (5FU, Leukovorin, CPT11) and then a recurrance last Oct. '04. I went on Oxaliplatin and Xeloda and am now on a maintenance program. So I have defeated this disease a second time.

Yes, it does feel like your world has fallen apart, and your sister's battle has just begun, but it can be beaten.

I too was blessed with a wonderful sister who has been by my side throughout all of this. It is such good support.

Chemo effects everyone differently. Some people get through it with relatively few side effects, others have more side effects. Be sure to have your sisters doctor give her anti-nausea meds. There are some good ones out there now.

You and your sister will be in my thoughts and prayers. As Emily said, we have a very good prayer chain going on this site.

Kerry

SisterlyLove
Posts: 14
Joined: Apr 2005

Thanks for your encouragement! It really scares me! I am trying to read every book I can find as well as use the internet! Sometimes ignorance is bliss and sometimes knowing is too scary!! Right now, my sister is staying off the internet and trying to make peace with this. Of course, her husband is scouring the internet day and night! Your winning record is awesome! I hope the disease realizes it is fighting a losing battle with you b/c you have won! Keep up the good work! If you have any suggestions of do's and donot's for me as a caregiver, please let me know! Thanks!
In God's love,
SisterlyLove

madu
Posts: 53
Joined: Mar 2005

I think the thing that helped me the most through treatment were my friends and family who let me be me - not "you poor thing" or "you're so young" or "you're handling this so well" sometimes I just wanted to be Heidi not the strong cancer fighter. I really appreciated friends who let me be "normal" and talk about other things but were also there is I wanted to talk about the cancer ad nauseum.

I would reiterate the urgings to get tested with a a c-scope. My having colon cancer doubled the odds that my relatives might also be susceptible. I was also told any of our children should be tested 10 years before the age of my diagnosis (i.e. I was diagnosed at 31, they should be checked at 21). The prep is the worse, the rest is a breeze - just do it! in honor of your sister.

As to success stories, tell your sister that I was diagnosed in 8/98 with stage IV rectal sigmoid cancer with a met to the liver (read: oooh that's not good) and I am at 6 years and 8 months with no evidence of disease. I had a colon and liver resection, 8 months of 5FU and leucovorin (the other drugs like oxiplatin or camptostar were in trials and were not available for my use) and 28 sessions of radiation. It's not easy but neither was it as bad as I anticipated. She will likely become more tired as time goes on but she'll just need to be easy on herself.

Keep us posted.

Heidi

nettie4
Posts: 145
Joined: Mar 2004

hello sis. i am 35 and dx at the age of 28 while pregnant. my sister has been by my side as well through this whole thing as well as my friends and my husband. my children r now 6 and 8. i do have mets to the lungs. i was on folfox 6 but i am very reactive to drugs so i had all the side affects. the thing with chemo is that it is a wait and see thing how it will affect a person. i do know that at the 4th dose of it that is when the neuoropathy started. there are plenty of other drugs to counter all the affects. as far as saying and doing the right things it is hard cuz everyone one is different and this is new to both the cancer patient and the caregivers. i find my peace in the Lord and i have heard lots of things in my journey from what will you tell your kids because you are dying(which i am not), to it does not even look like you have cancer, too people avoiding me all together. whatever is thrown at me i know i will be given the strength to get through. this disease is not a death sentence there are plenty of long time survivors on here i included. i will keep your sister in my prayers as i know her journey is about to begin with her treatment and the waiting and wondering all the time. i just take things one day at a time as that is all any of us are given and tomrrow i will handle the same way. i pray the Lord give you strength and her husband as well and all who will be involved in her care. take care and keep us posted. i have been on alot of things so if you have ? please email me i will help where i can and where i cant i will pray someone else can.

nettie

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