New Life Journey...Where am I?

[jpestka]

Hello everyone,

I have embarked on a new journey through life. I have had a colon resection (5 inches), 4 weeks ago and now looking at starting the treatments in the next few weeks. The new information and terms make my head whirl...I am definately on the learning curve here. I have found out thus far that I will be taking FOLFOX6 for treatments. I will be home for 6 months (12 treatments) because my job requires all or nothing, as I work in Law Enforcement. The shock and information is still sinking in as I write this.
I feel lost and out of control of my life, which is a new and different feeling for me, but don't get the wrong impression I am not a control freak, just usually very middle of the road and finding out my emotions and feelings are working overtime to throw me off balance.
I am just searching for a way to cope with all of the information and I am trying to come to terms with what I must journey through.
I met with the new Doctor yesterday, and was informed of the treatment name but have been unable to find any information about FOLFOX6. I meet with the education specialist on Wednesday, but I am just trying to do my homework so I know what questions to ask, how I will feel...ect.
Does anyone have any information?

[good2smile]

Keep your head held high and always smile. Keeping up a good attitude is the best prescription we can ever ask for.

I also will be giving this med starting Wed. I do know this is one of the best drugs out there. I also have meds to make me feel better after this treatment. I also, will have 12 treatments over the next 6 months. I had 16 inches taken out and life looks so much better! As long as you ask the doctors they can tell you anything they can about the drugs. ALWAYS ASK and NEVER EVER make your mind WONDER.... Always ask and they can HELP. If not, ask the nurse or hospital. They can always guide you in the right direction.

Becca

[Rochelle]

You are starting with the right attitude as viewing your experience as a journey. Journaling helps me immensely, as my emotions have a tendency to run wild during this time also. Online support groups help me to understand what others are going through, and their experiences with various chemo treatents.I am still in a phase when I feel disconnected from the standard population who are oblivious to this disease, so the longer time goes by, the less I expect to feel like I need for them to understand what I am going through.

Before you do any research on the internet regarding Folfox6, consider the source it is coming from, in addition to the year it was published. Statistics are also very inaccurate, so, if I were you I would disregard them. I am on a Folfox regimen of Oxilaplatin, Leucavorin, and Fluoracil -
followed by Avastin. I believe I am on Folfox6 also, not 5-sorry; read the link below.
These are some questions you may want to ask the doctor:
1. How often will I be receiving a CT scan once I start chemotherapy?
2. Will it be mandatory to have bloodwork taken before each treatment? (It is important that this is done prior to each treatment to ensure your blood counts, etc. are in condition to receive chemo).
3. What side affects should I report to the doctor (dehydration, continual diarrhea, chronic dry cough) and which ones should I anticipate?(nausea, fatigue, tingling in hands).

Hope this helps

[Sweet Peg]

My understanding of the difference between Fulfox5 and Fulfox6 is that instead of a 2 day treatment they have gone with one day and longer on the fanny pack part of the treatment. I believe the drugs used are the same.

Don't do lots of internet searches, ask the doctor more questions. I found a lot of discouraging things on the internet that weren't true and they just make me discouraged. Ask lots of questions of your doctor and tell him/her everything you are feeling!!! Keep a smile on your face, positive attitude and stay in touch with God. You will do fine with the treatment. Listen to what your body is telling you. When it says your are tired, sleep!!! Remember it is only 6 months and then you will be able to start doing things like normal again. Stay in touch with this Forum because there is LOTS of support and answers to questions that you sometimes can't find anywhere else.

Know that we will ALL be praying for you and are here to help anyway we can.

Lots of Hugs!!!! Peg

[Holly]

Your question, Where am I? Welcome, you have entered the wonderful world of the colon club! I am a 32 year old stage IV colon cancer survivor and I am grateful to be alive. This forum has brought me strength, motivation and inspiration. I would concur that you must be PROACTIVE in the management of your health. Yes, ask questions and expect answers from your healthcare team. To respond to the difference between treatment regimens. Folfox5 includes Oxiliplatin, 5-FU, and Leukovorin. The Folfox6 regimen includes Oxi, 5-FU, Leukovorin and a monoclonal antibody. The two monoclonal antibodies currently approved for colon cancer are Avastin and Erbitux. My treatment regimen was Folfox5. I recieved 2 consecutive days of in office treatments and was sent home with a pump after each visit. On day three, my treatment was discontinued and this was repeated every 14 days. I recieved a total of 8 cycles of treatment. Every persons experience is different and unique. I do hope that you will update the colon club on your journey and success. Congratulations on your SURVIVORSHIP and may you continue to be blessed by God!

[Holly]

I have included this link which explains the differences in the Folfox regimens.

http://www.factsandcomparisons.com/asse ... 05_ccu.pdf

[jpestka]

I would like to thank everyone for their replies. I met with the education specialist. It is a gloomy outlook for six months if I get all of the reactions she said I could get, but I guess it's like the lottery, and since I haven't won that I think I'm due for some kind of winning...whichever turn the treatments take I will get through, there is light at the end of the tunnel.
The thing that bothers me most of all is being so useless. I am used to helping and caring for other people and their problems, and now the tables have turned, and I'm not sure how accepting I'll be to be on the receiving end.
I received a journal and calendar in the packet I received, which I intend to use, but also a local support group that meets twice a week, I just hope I have the energy to drive.
Thanks for the information and encouragement you have all given me. I will just concentrate on putting one foot in front of the other for now.

John

[jpestka]

Hello all,
Today I start treatments. I can honestly say I'm NOT looking forward to it, but some things in life must be endured.
Besides all of the normal feelings I am having, I have also had to deal with my insurance company, and have figured them out..... On any given day when I call my insurance company, there is only one person with the brain that day. The trick is to find the person with the brain, and talk to them. Then they play little tricks on you like leaving early for the day....insurance companies are so much fun...just another thing to add to my least favorite things to deal with in life.
I had my port installed yesterday and have a little stiffness of the shoulder and arm, but just a little discomfort.
I will go today and I am trying to get into the mind set that I will have minimal, if any, side effects.
It has been a roller coaster of emotions lately as the family has had to deal with the passing of my wife's uncle who has been fighting a rare form of lung and skin cancer. The viewing and the funeral did serve to really put what I am going through in perspective.
Everyone have a GREAT DAY!
In all seriousness, I am a fighter and I will survive! I can take anything life throws at me.

[julie]

I agree with the internet misguiding people as I read colon cancer only happens to people 50 & over, after hearing all your stories I was quite shocked to learn that a lot of you were diagnosed in your 20`s. I thought I was safe, thought the doctors were right in fobbing me off for more than 10 yrs with IBS ive always known there was something not right, even tho I havent been diagnosed yet I am brasing myself for any news, im hoping its not serious but need to know what is up with me! I am 38.

I am glad i found this site im learning a lot more to demand more off my doctor instead of walking out of his office sheepishly & thinking that cant be right!

Thankyou

[Beth]

I just found out that I have Stage III colon cancer and will be starting the FolFox5 chemo for 6 months. I'm only 43 and never imagined that this could happen. The bowel resection went better than anticipated and the doctor thought it was small and hadn't spread...and then we got the pathologist report. I feel so out of control because I have always juggled high-stress jobs, kids, etc and thought I had done a good job of staying healthy. My kids are too young for this to happen! I'm hoping that they chemo side effects are bearable....but everything I've read doesn't sound good. Maybe this site will help me deal....

[Brenda Durant]

Julie,
I know your fears. Over 30 years ago, I was diagnosed with IBS and 3 diseased sections showing in my small intestines (narrowed sections). I had been very il for 2 years and an Internal Medicine Specialist had totally mistreated me for 2 years as I got down to 97 pounds ar 5'6" tall (very thin). I had blood in my penciled and runny stool. Finally, an Eye, ear, and nose specialist put me on the right track and sent me to a Gastroenteroligist who found and treated my problem. I begged him to remove the diseased intestines (fearing that cancer would develope). He told me that many surgeries had been done unnecessarily and that by the time many had surgery the condition was already healed. He said surgery induces more problems and should be avoided. He was right. I take calcium before bed time and my stools are now normal after years of problems.
I too feared cancer; but we must not live in fear. Stay informed and take time to relax. Get second opionions especially if you are not getting better. The first specialist that I spent 2 yrs with, wanted to do exploratory surgery. Thank God, I said no and found a doctor who was more interested in maintaining my health than money taken for practicing medicine. I gave the first doctor too many practice dollars and wasted precious time, because I trusted the title Internal Medicine Specialist. I wish I had the 2 years I wasted with worry back. Life is too short already!

[julie]

Thankyou brenda, I do keep trying not to fear the worst but it is hard when you know something is not right, i hope i have the same outcome as you, but now as time is approaching for my tests i am getting more worried, i have also lost a lot of weight and the pain is getting worse i have also been vomiting which i hadnt done before (maybe its the worry) i dont know. I discovered a cousin who had moved to canada a long time ago had leukemia, my mother died of lymphoma & my grandfather died of lung cancer, so you see how hard it is for me not fear the worst.

Thankyou for your hopefull words of comfort Brenda xxxxxxxxx

[Holly]

Dear Julie, Beth and Jpestka,

Welcome to the Colon Club and congratulations on your SURVIVORSHIP! I hope that through this forum that each of you will find strength, hope and inspiration as I have. It is true colon cancer affects many persons younger than 50 and this forum is a testament to the fact. We are young, living strong and colon cancer survivors. I ask that each of you be proactive in the management of your health. Do not be afraid to ask your healthcare partners the tough questions and demand answers. This is your life. Be smart, ask questions and do not believe everything that you read. Yes, there is a plethora of information out there in the world. You will each find numbers and lots of them. It is important to note that like most things, numbers can be manipulated to suit the intended need. Each of you are unique as will be your journeys. Cancer sucks! Chemotherapy sucks! Having said that, I, too, have underwent surgery and two different chemotherapy regimens and I am alive and a stage IV colon cancer survivor without evidence of metastatic disease! Colon Cancer is treatable, preventable, and BEATABLE. Please do update the colon club on your continued wellness. I will have each of you in my prayers. I encourage you to believe that ALL things are possible and have faith...

[jpestka]

Well, the treatments and the effects on the body are uniquely different and there is always something new to look forward to from week to week...and I thought this would be a humdrum same old thing week after week...boy was I wrong.

A total draining of energy for about 4 days. I could not imagine going through this without some kind of help during those 4 days. I look forward to spring, as it will become a memory.

Beth, I would like to compare notes with you concerning your treatments and side effects. I only get to the computer every other week now as the journey down to my office (stairs) is almost equal to a days work.

I had a melt down this week. I had to break down and ask to be put in touch with someone who could relate to what I was feeling emotionally and physically. It seems they are looking but only have contacts listed who are much older than I and went through it many moons ago. I'm kinda lookiing for current events....am I too picky?

I can deal with the physical stuff, but I try to keep pushing the emotional stuff back in the bottom of my bag of stuff, and they keep getting out, and always at the most inconveninet times. I have to get past the feelings of uselessness. I guess it's a guy thing..be strong, just get over it..be logical, and all of those other things I have been taught by society and family all these years.

Through this journey I have learned many valuable life lessons:
1. Cancer is just a word when you hear that someone you know has it.
It becomes a much stronger, and it's meaning is really defined when it is said directly to you, and only those people who have it, or survived it know what the real feelings and definations are that are associated with it.
2. When you have cancer you need support, no matter how strong you think you are. The support differs from person to person, but everyone needs some kind of support.
3. Cancer makes you thankful for the little things that really matter in life, a time to slow down and reflect on what really matters, not the busy lifestyle of buzzing off to work, kids, etc., but the really important things like relationships with friends, kids and spouses, and you can tell who your real friends are during the journey.

My total attitude has changed since the day I herad that word for the first time.

Yesterday was not a good day for me, and we all have them, but today (in my world) the sun is shining and the birds are singing, only because I had to reach out and say I need help and support, and wow the response from the local cancer support group was overwhelming. I found books, CD's, DVD's, and just talking with someone who understands, makes all the difference in the world.

Thanks for letting me ramble on, but I guess this is part of my therapy also.

God bless all of you on this site for your caring and sharing.