FOLFOX NOW ORDERED FOR STAGE 3 B SIGMOID COLON CANCER

[dinkydi8]

Hi to you all. My husband has had his resection for stage 3 sigmoid colon cancer, and is very well and recovered. He is now going to have folfox to clean up any micromatestsis, which will be fortnightly for about 12 treatments (six months duration. We are hoping that he can tolerate it. Has anyone else had this regime and what were the side effects. Does anyone have stastics on recurrence after this treatment. Look forward to someone replying. Cheers dinkydi8

[Jimswife]

The stats on the Internet ore all outdated and everyone's cancer is different so what may happen to one person may not happen to another so wouldn't take too much notice of them but our onc told us we had 70-75 percent chance of a full recovery / cure , I think it depends on extent of spread to the lymph nodes. We had 2 nodes , how many did you ? .... Anyway the odds are in YOUR favour .

[prtza]

You might want to check out this 2011-2013 fact sheet from the American Cancer Society
http://www.cancer.org/Research/CancerFa ... -2011-2013

It has a "Five-year Colorectal Cancer-specific Survival" chart

Sloan Kettering has a cancer prediction tool which is useful
Here:
http://nomograms.mskcc.org/Colorectal/PostSurgery.aspx

good luck,
Paul

[nicola smith]

I had the Folfox6 regime for Stage 3 B colon cancer (sigmoid, 3 out of 154 nodes). I tolerated it reasonably well and was able to maintain and grow my home-based consulting business.

My oncologist said that I had slightly more than a 70% chance of NOT having a recurrence, and that 80% of recurrences happen within the first two years after surgery.

If you google around, you will find two or three sites (like the Sloan Kettering one mentioned by prtza) that let one calculate one's own chance of recurrence based on factors like staging, # of lymph nodes, tumour location, degree of cell differentiation, etc. The trick to using these, IMO, is to remember that they are just statistical tools, that treatment and patient survival rates have improved beyond the data base used by the tool, and any information one gets is just another data point in one's own personal story.

Here is a link to a recent thread which discusses Folfox and how people got through it, including a detailed report from me.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=36434

Just remember that everyone is different.

[Kathryn in MN]

This is the common protocol for stage III colon cancer, and many, many here have done it. Everyone reacts differently to chemo - some get through it easily and others not. There are many different possible side effects - some easily controlled and some not. There are a few weird side effects that don't hurt in the long run but are annoyances, and there are some that can be permanent, like neuropathy.

The best advice I ever got before starting chemo were two different things - dealing with cancer is a marathon - not a sprint, and hope for the best, but prepare for the worst. It may take more than 6 months to get through 12 cycles. Sometimes if blood counts are too low, or you are sick with something else, or you are too fatigued and need a break, you might get a week delay. Or if you just need an extra week due to a family event or vacation at some point. Remember marathon - not sprint. Some people get through without much trouble. Others have some serious issues arise - you don't know until you are in it, so preparing for the worst is smart, even though hopefully you will be one that stays in the hope for the best category!

I also suggest starting 2 notebooks right now. Get one to put copies of all surgical, scan and lab reports in. Get another to jot down questions for your appointments and to journal side effects during treatment to report to the medical team. Speak up about any bothersome side effect - there are ways to tweak chemo to have the least effects possible - with steroids, anti-emetics, stool softeners, Imodium, etc. Do not think you are being a hyprochondriac if you report everything - it is necessary to get the best quality of life while going through treatment. And while many complaints are not anything serious, something might be. Report it all and let the professionals determine what could be dangerous and might need immediate attention.

If you use the search function here for FOLFOX, you can find all sorts of others' experiences on it. A good site for chemo drugs is http://chemocare.com/chemotherapy/drug-info/default.aspx You can look up oxaliplatin and 5-FU there.

[dinkydi8]

Thank you all for your replies. My husband had 2 lymph nodes out of 35 positive. I checked the survival chart and it was very positive 82% after 5 years and 76 % after ten. I know it is a bit of a raffle, but it is certainly better than the outdates stats. We start chemo folfox today, so fingers crossed that he tolerates it o.k. I will keep you all informed. You are all so generous with your time and comments. It is a life saver (carer) Cheers dinkydi8

[pukalania]

Dear dinkydi
My husband was diagnosed with stage 3 sigmoid colon cancer in 2010 after resection he did 12 rounds of 5fu, leucovorin and oxaliplatin (sorry I never remember the Brief name ) he has 9 of 36 lymph nodes. He has recurrence now at same tumor site and spread to liver ( part of it I believe due to not doing any Ct scans during the 20 months after chemo) his initial tumor was completely obstructive and invasive to colon wall so be was in pretty bad shape . However everyone's case is different from our experience is just say make sure the follow ups are quite thorough our initial oncologist believed only in blood work which doesn't show any tumor presence despite the tumor presence. You can message me anytime too if you have questions or concerns. Good luck with chemo hope it goes smooth
Hugs

[3xsurvivor]

]dec. 2009 diagnosed 3c with 8 of 19 lymph nodes affected. I had this regimen feb- june 2010. nausea, neuropathy, difficulty swallowing cold drinks, some hair thinning, loss of appetite (I lost 30 pounds but have since regained and then some) fatigue. I had to stop after 8 tx because of neuropathy ( still have it). satistics? everyone is different i truly think it is determined by the individuals body. in 1970 i had hodgkins at age 7 with a 15% chance of survival but yet here i am. have a positive outlook, live your life not worrying if it will come back. i am back to my life like it was pre- cancer. good luck to you and your husband he will do fine. stay positive.if not for my wife being positive and keeping my spirits up who knows what it could have been like for me. be there and be positive for him.

[dinkydi8]

Hi all. Well, we have just finished round one of FOLFOX. Tolerated it fairly well for the first few days, but today quite nauseaous. The ct scan show no metastases, however we had a shock in store. My husband in a previous life, used to do engineering and airconditioning around hospitals, and in the 1970s pipes were cover in asbestos. He came in contact with it regularly. Something suspicious showed up on the scan PANIC STATIONS. With my medical background I immediately thought Mesothelioma or asbestosis. After a couple of days of worry, we now have a diagnosis of Pleural Plaques (much less of a worry), so now only fighting Colon Cancer. I continue to read your posts with great interest. What doesnt kill you makes you stronger. So we will all be stronger. dinkydi8

[horizon]

]dec. 2009 diagnosed 3c with 8 of 19 lymph nodes affected. I had this regimen feb- june 2010. nausea, neuropathy, difficulty swallowing cold drinks, some hair thinning, loss of appetite (I lost 30 pounds but have since regained and then some) fatigue. I had to stop after 8 tx because of neuropathy ( still have it). satistics? everyone is different i truly think it is determined by the individuals body. in 1970 i had hodgkins at age 7 with a 15% chance of survival but yet here i am. have a positive outlook, live your life not worrying if it will come back. i am back to my life like it was pre- cancer. good luck to you and your husband he will do fine. stay positive.if not for my wife being positive and keeping my spirits up who knows what it could have been like for me. be there and be positive for him.

Love love love this post! I'm doing my best to not worry about it coming back. I know it can, but why rob myself of potential happiness today? I hope I follow a similar path as you.

[3xsurvivor]

A little mix up on my dates, dx dec 2010, folfox in 2011. sometimes it seems longer ago than it is.So many things have happened in the past 4 years it gets confusing( thyroid cancer in Oct 2008 as well as other surgeries).Dinkydi8 so glad to hear your husband tolerated his first round well,also that the scare was just that ,a scare. hopefully no more of those.talk to your doctor about the nausea, there are so many meds to help with side effects. I wish I had been more vocal with the doctor about side effects and gotten more help but i thought that was just the way it was and you just had to tough it out.YOU DONT!! Talk to them at the slightest change maybe they can help your husband be more comfortable in the future. Horizon, glad you liked the post. I have to give credit as well to my wife who helped me get through this so much easier before during and after. and I too feel like you at times , did I just have a resection and is this real life. I am slowly accepting what has happened to me and what is probably going to stay with me to forever remind me that it really has happened.But,Iam determined to be me again. I am going on the same vacations I have gone on in the past, I do most of the same everyday things I was used to just a little more carefully than before. for everyone live your lives, cancer or not, to the fullest. Dont cheat yourselves of anything.I will try not to. while I was on chemo and sometimes too sick to travel my Mom was fighting pancreatic cancer at the same time. I lost my Mom August 10 2011(the day before my Fathers birthday). Cancer cheated me out of time with her, it will never cheat me out of anything again no matter how sick it might make me, hopefully never again. My best to all fighting this horrible disease remember you can beat this ,I've done it 3 times so far.

[horizon]

Horizon, glad you liked the post. I have to give credit as well to my wife who helped me get through this so much easier before during and after. and I too feel like you at times , did I just have a resection and is this real life. I am slowly accepting what has happened to me and what is probably going to stay with me to forever remind me that it really has happened.But,Iam determined to be me again. I am going on the same vacations I have gone on in the past, I do most of the same everyday things I was used to just a little more carefully than before. for everyone live your lives, cancer or not, to the fullest. Dont cheat yourselves of anything.I will try not to. while I was on chemo and sometimes too sick to travel my Mom was fighting pancreatic cancer at the same time. I lost my Mom August 10 2011(the day before my Fathers birthday). Cancer cheated me out of time with her, it will never cheat me out of anything again no matter how sick it might make me, hopefully never again. My best to all fighting this horrible disease remember you can beat this ,I've done it 3 times so far.

It sucks that a day doesn't go by where I don't worry a little about the future, but for the most part I refuse to let it ruin the second chance at happiness that I've been given. I'm going the same route, living my life like I want to with a little more caution and awareness about how fragile life can me.

Condolences for your mother.

[Juls1970]

Hi there - I am currently fighting stage 3 colon cancer 4 out of 12 lymph nodes affected . I have had weekly treatments of 5fu total of 23 so far- 3 more to go. 6 months definitely a marathon. I am 43 with 3 beautiful children I am trying to have a positive outlook. Sometimes it is difficult not knowing what the future holds. My kids keep me busy the chemo makes me very tired watery eyes and very sore hands from the red rash, diahorea is also a problem but you just have to suck it up and work out good days to bad ones. I was fit healthy regular gym attendance - was told was to young was checked for celiac 3 yrs ago came back negative and was talked out of further checks as ct scan is radiation, if picked up back then would have had op and no further treatment. I just thought I had irritable bowel or lactose intolerate. Life has thrown this curve ball my way and I just pray that I am one of the statistics for survival! All the best to all going through this horrible diagnosis x

[survivor73]

Hi there,
Keep your head up and keep goin. I had stage 3 Colon cancer with 2 lymph nodes affected. You are always in fear of it coming back but we have it easier than some other cancers. The only side effect I have after finishing up chemo in May after 12 treatments is Neuropathy from the Oxaliplatin. It is a sleepy feeling in your feet and or hands. I take a prescription Neurontin to help with the symptoms. It is not a cure for it.THe nerves are trying to repair themselves and sometimes if you get Oxalyplatin for too long it can permanetly damage your nerves so if it starts to bother him let the drs know so they can possibly stop that medication after so many treatments. Good luck I am sure all will go well and God Bless

[Tarsal69]

Wishing your husband best of luck I am currently on folfox a an am in a clinical trial of 6 treatments where I have completed 5 treatments wat I can tell you is to hang in there first 2 to 7 days are tuff with strong reactions to to touching or drinking cold things an you will feel fatigue an hair will thin a lot stay strong drink a lot of fluids 62 male 111a 7.4 CEa pre laparoscopic resection an 2.4 post survey t3n1bm0 lets get through this an see if 6 treatments can work for you God knows 12 is tuff an I am glad for six treatments an then being done