I have never walked this way before.

Please someone respond.  My husband was just diagnosed with colon cancer with mets to Liver.  He had colon cancer in 2003, had a sigmoid colectomy, and no chemo or radiation, because "they got it all".  He had been having yearly colonoscopies, as ordered and lab, but sadly on CT Scan and  CEA, on 1 year post surgery.  Two weeks ago, cancer was found in both lobes of liver, CEA of 1094, tumors were big, small, diffusly scattered thoughout, both lobes.  He has had Pet Scan, Liver Bx (none in colon) and med-portf for chemo.  I think he is too endstage, however he feels he wants to try.  He is very weak and frail--Chemo and Cancer Meds are Camptosar, Avastin, Leucovorin and 5-Fluorouracil?  Has anyone taken these drugs?  Could you respond about what you think about "too far gone" What to expect.  He is suppose to start to tomorrow, however, I am getting doubts.  Please help me travel down this road.  Millie

Hi Millie,

I am very sorry for what your husband and you are going through; this is a very hard journey.

My husband has had both rectal cancer and colon cancer with chemo and radiation both times.  Then in 2006 he was diagnosed with pancreatic cancer, so more surgery, chemo and radiation.  During the last treatment he was found to have inoperable colon mets in both lungs.  He is not having any treatment because he is not experiencing any symptoms.  He is ok with the oncologist's plan for no treatment until symptoms due to good quality of life and the fact that he is 77 years of age.

I have no knowledge of the chemos you mentioned except I have heard of them.  My own inclination would be to support my husband's wishes for treatment as long as he felt he could go on.  I feel it is up to the patient to make those decisions about his body and life and my job is to support him in any way I can.  Not everyone feels the same way about these very difficult issues and however you feel is the right way for you.  No one will fault you for whatever you decide to, do but after he is gone, whether that is next month or in 5 years, you don't want to have any regrets.

I hope you will find some comfort in my message to you.  Mostly what we caregivers need, after pain-free life for our patient, is some peace in our lives.  I hope you find some.

Joan L 

Millie,

The drug combination that you mention is known as Folfiri + Avastin.  I am currently on my second regimen of it.  It worked well for me in 2008 and I am hoping it works again after an 8 month break.  Avastin has been a remarkable drug for some patients by cutting off the blood supply to some tumors.  For me the side effects have been minimal.  The key is to figure out what pre-meds are needed and what oral meds are needed at home for the few days after treatment.  Also, staying well hydrated is very important to flush the drugs out of his system as soon as possible. 

I am curious about how his cancer got to be so advanced.  You said he was initially diagnosed in 2003.  Have they been doing CEA and CT Scans since then or was this his first CT Scan?  Colonoscopies are good, but they won't catch metastatic disease.  After he starts chemo, he should get another CT Scan in 90 days to see if it has shrunk the mets.

The new statistics are that Stage 4 CC patients average 30 months with the new drugs that are available, but this is just an average.  Hopefully your husband can exceed that and that there will be new treatments in 2 and a half years.

 

Jack

Jack,

Thanks so much for replying to my message.  Ron had his first treatment today, with premeds of Benadryl and Zofran.  We have been home app 2.5 hours, and so far so good.

 The response messages to my message has just above saved my emotional life. I am nurse.  Can you believe it with the cea and ultrasound?  Anyway, I battle what I know in medicine concerning mets to liver, plus I serve a God that can heal.  However, my medical knowledge, challenges my spiritual knowledge.  I battled over and over about his chemo and after reading the support messages and after his treatment today, I have more peace.  God does work in ways, that I know not of.

 About the CEA and Ultrasound:  He had a CEA and CT Scan, 1 year post op, and all was well.  He actually had no symptoms until March of this year, and thing started changing fast.  All of his labs were always good, including liver functions.  The only thing that very slowly climbed, but remained in within normal limits was Alkaline Phos.  From March until April he was weakening fast, endurance change, etc, finally his cardiologist/electrophysiologist (a new one, looked at him and place in right away in the hospital.  His heart failure was severe, and end stage, so we thought that was the  problem.  App. 1 month ago, he started having constipation, right kidney and right upper quadrant pain(liver area), and then I made an appointment with gastroenterologists.   Immediately, he ordered the CEA and Ultrasound and the rest is history. It has only been 2 weeks, but we have gone from pet scan, liver biopsy, lab band loosened, mediport and Chemo today.

I know one thing,!  If I ever have a friend or family member that had cancer and is not followed reg, with cea and CT scan, regardless of symptoms, I will make sure that is it done. 

By-the-way:  His heart failure improved with a new drug. 

God Bless you,

Millie

 

 

I'm very sorry you got this bad news and wish the best for you and your husband.  You don't say how old he is but my advice would be to support his decision if he wants to fight.  You really don't know how his body will respond to the the chemo without trying.  And you shouldn't give up hope at this stage.  I know it seems very grim but there could be a light at the end of that very dark tunnel. 

My husband is 51 and was diagnosed stage IV in February with multiple mets to both lobes of the liver.  He had a colon resection at that time and they biopsied 28 lymph nodes, with only one showing any sign of cancer.  At that time, the surgeon that performed the colon resection told us that the cancer could only be managed with chemo.  There was no hope of liver resection because there were multiple tumors in both lobes.  He did 6 rounds of Folfox + Avastin.   Wasn't much fun but really wasn't that bad either.  No major side effects except for cold sensitivity and tiredness.  He kept working every day he didn't have treatment even though I begged him a few times to take a break.  But he is stubborn and that attitude paid off in the end because by the first of June a new CT scan showed that the liver mets had shrunk by more than 50%.  We went to a new surgeon that specializes in liver treatment and got the good news that surgery is now an option and he believes that all the remaining mets can be removed.  We go for surgery on Wednesday and have high hopes that this will give us a much brighter outlook for the future. 

Give the chemo a chance to do it's job.  Learn as much about side effects as you can and what can be used to combat them.  Don't be afraid to ask questions and keep asking until you get an answer.  And don't always believe what the first doctor says.  If you have any doubt at all, get another opinion. 

I hope your husband has good results and that in a few months you will also get better news.  My thought and prayers will be with you.

Dear Jayne T:

Your response is encouraging.  God sends people like you to help people like my husband and I.  Keep praying for us.  I will remember you in my prayers.  Isn't  amazing, that you can be a messenger of the Lord, even over the Internet.  What a comfort that I received from your words.

 God Bless you both,

Millie

 

On 7/12/2009 Lavon wrote:

Please someone respond.  My husband was just diagnosed with colon cancer with mets to Liver.  He had colon cancer in 2003, had a sigmoid colectomy, and no chemo or radiation, because "they got it all".  He had been having yearly colonoscopies, as ordered and lab, but sadly on CT Scan and  CEA, on 1 year post surgery.  Two weeks ago, cancer was found in both lobes of liver, CEA of 1094, tumors were big, small, diffusly scattered thoughout, both lobes.  He has had Pet Scan, Liver Bx (none in colon) and med-portf for chemo.  I think he is too endstage, however he feels he wants to try.  He is very weak and frail--Chemo and Cancer Meds are Camptosar, Avastin, Leucovorin and 5-Fluorouracil?  Has anyone taken these drugs?  Could you respond about what you think about "too far gone" What to expect.  He is suppose to start to tomorrow, however, I am getting doubts.  Please help me travel down this road.  Millie

Hi Millie - I too am the caregiver and this is a hard diagnosis to have to take however, not knowing your husband's age, I agree with treatment if he wants it.  The survival rate for colon stage four has increased and if your husband responds to the chemo regiment it can buy hiim time.  My huband is 43 and was diagnosed right before he turned 42.  His lobes were loaded.  With treatement they have been reduced significantly.  Our doctors do not discuss his CEA levels - they have never given us a number (even at Sloan Kettering) and I like it that way.  It is funny how the mind works with the information you are given.  Live for the day and enjoy every moment.  Going past one day at a time is to scary and overwhelming trick your mind into living in the moment (even if you are the only one - family needs a little extra help).  Be prepared the treatments can be very difficult but do whatever it takes to make him comfortable.  Make sure he takes the anti - nausea meds.  Unfortunately, my husband had issues with constipation which nobody really tells you - they all talk about diarrea.  I guess you figured out by now you are now walking on a path to the unknown but believe me there are a lot of us out here.  Email me anytime.  This site has been a kind friend to me and glad to have found it.  Peace to you and your family. Kelly

Hi Millie,

I have never had Zofran as a premed but I have heard good things about it.  I get Decadron, Reglan and Ativan for nausea and Aloxi for diarrhea.  I also have the pill form of Reglan, Ativan and Decadron at home, but I haven't had to use them.  I did get Benadryl a few times but I really didn't like the feeling that it gave me.  I was tired and antsy at the same time which drove me crazy in the chemo chair.  Since we have cut out the Benadryl I am much better.

I don't have liver mets, but I have heard that there is a limited window sometimes when they become operable, and many that are inoperable up front, now become operable because of the new chemo drugs.  Be diligent on the 90 day and 180 day follow-ups (CT or PET or both).  I don't know if your husband will become operable because of his other medical problems, but stay ready just in case.  I wouldn't worry too much about getting another CEA test at this point.  CEA will usually spike during early chemo and who needs to see the number go up.  My onc doesn't even order them at all during chemo unless I ask, but given what I've learned over a couple of years, I don't ask any more.  If he gets to the point of a chemo break in the future, that's the time for another CEA.

I know your nurse's knowledge probably tells you that liver mets are a death sentence, but things have changed rapidly with colon cancer treatments in the last 5 years.  The life spans of Stage 4 patients are increasing quickly and the things in the pipeline are promising.  Read the News tab on the front of this website and filter it for colorectal articles.  They are making remarkable progress on proteins and genes that will lead to new treatments.

Jack

Jack,

Thank you for your support.  Ron, just finished 1st round of chemo, and he did really well.  I was surprised!  We are looking forward to the 60-90 follow-up.  To my surprise, I think it will be an improvement.  I have put my faith in the Lord and you will never know how the support on this web-site has meant to me.

Thank you and may God Bless you.  I will continue to pray for you.

Millie

Kelly,

Thank you for your words of support.  I too am blessed to have found this web-site, as I found new friends and support.  Ron had his first chemo, this week, and he did really well.  Still trusting the Lord every day.

Many blessings and healing flow to you and your loved one.

Millie