I've been diagnosed for colon cancer. I had the tumor resected with 47 lymph nodes. 2 lymph nodes were positive. Due to my age I refused an avasive traditional treatment FOLFLOX and right now I am on Xeloda /capecitabine/ in a half way of my therapy. So far, I am not experiencing any major side effect, so I worry that my therapy is not working. I have been on pills since mid of Feb 2012 and still do not know about my CEA. I thought that the CEA test should be performed periodically to see whether therapy is working.
I would appreciate any comment in this matter and sharing an experience with Xeload / capecitabine /.
I took capecitabine about 5 years ago for colon cancer after my resection surgery. It was not a problem, but I did experience some of the feet and hand sensitivity problems. Gradually my dosage had to be cut back as it got worse. My doctor said it was better to not wait until it got bad because then you would have to quit the medication all together.
It was not really a problem, but I did have some pain walking and in my hands if I was not careful. Good luck with your treatment and recovery.
The Following User Says Thank You to gwb123 For This Useful Post: oct.39 (06-06-2012)
Hi gwb123, Thank you so much for your response to my information given on this board. YOur message is very inspiring and a very motivational for me, who doesn't want to believe that I will be cured and free of cancer. I am at the moment at the beginning of the 6th cycle / 2 weeks on pills and 1 week off pills. So far, I have not experienced a major side effects. There were some blisters on my feet and some sensitivity of my hands.
I am physically very fit and do lot of walking / approx 50 miles during one cycle of the therapy. I maintain my weight and my blood tests shows all normal. I just wonder whether therapy works or not. Test of CEA - 1.6 /1600mm3 /.
I was initially on 3600 / for 2 cycles / and it was reduced to 3000 a day, when I developed rediness of hands and rediness and blisters on feet.
I wonder, what is your age / I am 73 /and what was your life style / diet, excercises etc.
You have given me a hope as I am at the moment mentally very down. I have no any support from anybody, so I really appreciate your effort and time to respond to my concerns.
I can definitely tell you that life does return to normal. I am now 65, and had my surgery and cancer when I was 60. I was reasonable fit and active for my age. I went to the gym on a regular schedule, and still do. I think I had about 8 inches of colon removed with a stage 2 tumor. With your cea count being very good and it seems like it had only begun to spread to the lymph nodes I think you can definitely expect your quality of life to return to the level it was before your surgery with a very good prognosis. The Capecitabine does a good job of getting rid of any residue cells that may have escaped the surgery. 47 lymph nodes is a lot. I think I had about 30 removed and all were clear. If I had 47 they may have found something as well. My Doctor told me that they like to get a minimum of 12, but more is better so they take as many as possible. I think you probably already know that this type of cancer is curable with the 5 year survival rate being very high for stages 1-3. After 5 years it is considered cured. I am in Canada, but I am also an American from Texas, so my experience is as a Canadian citizen as well as a USA Citizen. I am familiar with both medical systems and I think the treatment protocols are exactly the same everywhere. My surgery was done laproscopically here in Vancouver and I was in the hospital for about a week. I found recovery was pretty easy and I was back to my normal life in a couple of weeks. The Capecitabine was not really a big problem and I did a 6 month program the same as the one you are on. I think about the same dosage which also was scaled down as some of the problems started to show up. I think you will find that you gradually return to feeling back into your normal life, both physically and mentally. I would tell you that the statistical survival rates for this type of cancer are always 5 years out of date, because they measure 5 years survival time. So you can think that your statistical odds are better than they say. I want to wish you the best of luck and assure you that the odds are on your side.
The Following User Says Thank You to gwb123 For This Useful Post: oct.39 (06-06-2012)
Thank you so much for your response. Your response is the most informative and very inspirational I have ever received. I am at the moment in half way of my 6th cycle and I am so far free of side effect except some sensitivity to both of my hands and inconsistant BM.
I worry about my low WBC which went down from the previous cyckle blood tests avarage
5.4 to 4.6 and Neutrophile from 3.2 / previous cycle / to 2.5. My doctor assures me that it is normal. My doctor is a family doctor working for the team / oncologist, radiologist / and I am dealing with her only. My oncologist during my first meeting with her / having only biopsy results and no Bone Test, no CT and no MRI tests for lungs and pancreas / without any discussion decided to administer FOLFLOX regimen with implanting CVAD. I was not aware of the procedure in deatails as the oncologist was not going much into details as I had no idea what kind of question should I ask being completely ignorant about chemotherapy treatments. After some reading some more information I have found out about other options of chemo treatment and particularly treatment for the older patients without a very intrusive and very agressive Folflox + Oxioplatin and CAVD. I learned about installing CVAD upon my return home informing me that I must report next day to a hospital for implenting me device. Just before I met my oncologist i had a discussion with a radiologist who also without any tests automatically wanted to administer radiation. After a discussion he had withdraw his decision. My current doctor I deal with confirmed that I wouldnot need radiation. I told my oncologist the next day that I would be extremely uncomfortable with the device in my chest with protruding tube and pumping for 46 hours drug. As I am and always have been a very active person involved from my young age in sport and continuing to be physically active, I couldn`t imagine myself being restricted with that device for 6 months. It would effect badly my enxiety level making me all the time worried about side effects of CVAD - trombosis, blocked catheter or tube, demage by accidental pulling tshirt etc. So the oncologist decided to treat me with Xeloda, I guess she was pretty reluctant as she is specializing in trials and likely FOLFLOX was her specialty and wanted to have another quinea pig , older a very physically fit subject. You as an American know how much farmaceutical co charges cancer clinics for drug used for intravenously treatment, not mentioning a cost to a health system to treat patients in hospital with their at least 30 visits versus patients on Xeloda - only 8. One lady in USA paid for 2 infusions of Oxiplatin -
$6000.00 . So far Xeloda`s bill is approx $3000.
It seems to me that you are pretty conversant with that terrible desease. I am still in the process of getting familiar with my problem as from doctors one learns not much as it seems like they are afraid not to be involved in discussion just in case a patient asks more complicated question.
I asked the doctor what was my Stage. She wrote me in my notebook :
rectosigmoid : pT3 pN1b l2 out of 47 high grade
splenic flexure: pT1 Nx low grade
There is no metastasis to other organs.
Again, I would really appreciate your comments.
All the best
My experience with good doctors is that they do not speculate or try to guess what the situation is. Just the facts based on the test results, they don't chat much or try to be your best friend. Like Joe Friday in the old TV series dragnet, just the facts Mam.
I think it is good that doctors don't tell you more than they know for sure or for a fact. I told my doctor that I thought he did not like to speculate, and he said when he had done enough of these cases he had learned not to speculate. He is a colorectal surgeon specializing in colon cancer and had been in business for a long time and has a very good reputation.
I don't know how to read your test results, or if you had more than one tumor. I know that tumors are staged on how far they have penetrated into the colon tissue, if they have spread to lymph nodes or other organs and the grade of the tumor cancer cell difference from normal cells. The margins of cancer clean or clear tissue on both sides of the surgical excision cut lines is also important. There is a system on the internet that I used to know the name of, Duke or something like that. I am sure you will see it, and some newer variations, if you Google search for it. I know that a low grade tumor that has not penetrated to deeply into the colon wall and has not spread is the best prognosis. But that would be a low grade stage one tumor, and even stage two and three tumors have a good prognosis. Stage 4, high grade tumors are more problematic with a poor prognosis. I did not see any number 4s in your doctor's staging notes.
The treatment protocols are fairly well established and doctors do not really want to do anything different. This is because they are based on the best available statistical evidence and a systematic approach helps to build up the research data base. If they did something different than the approved protocol they could also be sued, and I think they are concerned about their liability insurance rates already. My tumor grade and stage level indicated that surgery alone was reccomended and capecitabine/Xeloda was an optional additional protocol due to some issues with diverticulitis that can be an issue for metastasis. I did discuss the chemo options such as folfox and other options but that did not seem to be warranted in my situation.
My costs for everything including the tests and pharmacy is Zero. That is because I live in Canada. Of course my income taxes have been about 5 to 10% higher over the years than they would have been in the USA, so you cannot say it is free. But I would have paid even more for health care coverage on top of the lower USA income tax, so it is a good deal in Canada. I am not sure it would work in the USA unless it was done on a state by state basis. Too much fraud and waste in a big National system in the USA. It is complicated to argue for one system over the other. I have extensive experience with both systems, Private health insurance and Blue Cross in the USA, HMOs like the big one in California and Medicare for my parents when they were older. HMOs were the ones I liked least. Both the Canadian and USA systems have their strengths and weaknesses. You will see anectdotal stories which show problems in either system. I prefer the Canadian system because I don't worry that doctors are prescribing not necessary treatments because they need a new golf cart and the links/communications between doctors and specialists is better co-ordinated. I find in the USA the patient has to manage the communication lines between the different specialists. This can be a lot of work and stressful when you are sick. The actual treatment level and quality of medical services is about the same. In Canada, You choose your own doctors and specialists based on the advise of your family physician, who you also choose. My oncologist here in Vancouver was a John Hopkins associate and travels back and forth between the two different centers where she also does research. A very bright and energetic young lady who is first rate in either system. Doctors are rich in both countries as they should be for the hard work and years of training they do.
Some people said that taking one of the B vitamins (B6 maybe) helped with the side effects of capecitabine. I don't know if that has been verified. I found that it was important to keep as regular bowel movements as possible. So drink lots of water, a big tablespoon of ground flax seed meal with your morning cereal or oatmeal, and some fish oil and Flaxseed oil capsules with a good multivitamin and extra vitamin D3 is a good idea. It is important to make sure you get your 8 glasses of water a day. It seems like a lot when you are doing it on a regular basis. It may be that colon cancer develops from polyps that arise from low fiber diets and not drinking enough water, but that is not known for sure, just more speculation.
I have been on a regular schedule of blood testing (cea, etc.), scans and annual colonoscopies for 5 years. So far, so good.....knock on wood.
I was also involved in sports and lead an active physical life. I was a baseball player and coach. I was out last week with the young guys playing ball. I am not 24 years old anymore so I don't play at their speed. But I am still playing ball, running with my dog, skiing and hiking in the mountains here in Vancouver. The worst parts of my journey with cancer was the anticipation and worry, the boredom of sitting in the hospital for a week after the surgery, and of course the realization that I, like everyone else, was not immortal and that we all face health challenges at sometime in our lives. I do have my family, wife and son as support. But in the end it something you go through on your own and in most ways you worry more about those you love than you worry about yourself.
Wishing you continued Good luck,
Thanks so much for your very informative response in particular regarding the diet.
I still have a lot of questions to ask you but at the moment I am pretty down mentally as my exiety is on increase. It always happens a few days before I my visit to cancer clinic.
For the time being I would like to ask you about your CEA results as a healthy cancer surviver. What is a " normal " reading for a helthy person. Is it just as long as it is belove 2.5 ?
I have 2 more cycles on Xeloda. So far only some sensitivity in my fingers and rediness, swelling feet with some minor cracks which I treat with Udderly Smooth / a very effective in my case /.
My CEA readings have been as high as 6 and as low as 2. They are normally in the 3 to 4 range. I do smoke. I have cut back a lot and it is a continuing battle for me. It will give you higher readings. It is supposed to be less than 5. I am using the Canadian scale, but I assume it is the same in the USA. I am tested every 3 months now. I think it was every month for the first year or two. My doctor tells me that he is more concerned about a continuing escalation where it is steadily rising above the 5 mark. I think the lower the better. If you don't smoke, it should definitely be below 5. If it goes over 5 then you start watching to see if it is steadily rising which would indicate tumor growth.
My reccomendation for fiber and water were if you have constipation problems. I know some people have the opposite. Gradually I began to live more comfortably with the anxiety. I think it is important that you don't start waiting around doing nothing in the anticipation that something bad may happen. It might, but that is always true your whole life. Those trucks are always out there to get us. My Dad had open heart surgery when he was 60 and he spent 10 years waiting to die of a heart attack. He actually lived another 30 years and was always angry that he wasted those 10 years. Maybe it is only natural and you will find yourself slowly overcoming anxiety.
Keep me posted on how it is going for you and know that I am hoping for the best for you.
The Following User Says Thank You to gwb123 For This Useful Post: oct.39 (08-10-2012)
Hi Gary, Thank you so much for your a very interesting information and am sorry for not responding to your message much sooner. A culprit to my delay was.. Wimbledon and now Olympc Games which take so much time to watch,
2 weeks ago I finished my 8th cycle of my therapy. In 2 weeks time I am going to have CT of abdomen/pelvis. I have no pain or swollen pelvis. I feel physically and mentally great. I returned to coaching tennis and to my exercises. I do on avarage / a day / 100 squats and a few times taking steps to my apt on 6th floor without having a short of breath. It is my " yard stick " in assasing my fitness.
After two weeks being off the pills I still have pretty sensitive hands/ some pain and tingling / and occasionally swollen feet. I have some problem with BM / flatulance and floating stool /. I do not take flax seed as I just can't stand the smell of it and taste. I think that it is due to flax seeds in Canada being genetically modified. I remember when years ago when I lived in Poland I could drink flax seed as the jelly / soaked in the water overnight / as it tasted so different to that one over here. It was prescribed by doctors for mitigating pain in the stomach due to ulcer etc.
I guess I have enough of fibre in my diet without the flex seeds as I do not experience constipation at all.
I want to ask you about the problem of sustained side effects after conclusion of taking the pills. Did you experience the same effects on your hands and feet after finishing your treatment ?
I'll appreciate your comments
I am really happy to hear that you are doing so well and resuming your normal activities. It seems to me that you are following the same path as I did. I have had no follow up side effects after finishing the capecitabine, but I don't remember how long it took for the sensitivity to go away. I think it was a few weeks.
I see you are in Australia, not the USA as I had wrongly assumed.
I am at 5 years after surgery and capecitabine/Xeloda protocol. I cannot tell there has been any negative side effects from the surgery or oral chemo drugs. My hand and foot sensitivity and skin irritations went away completely, and were only a minor problem in the treatment time period.
The ground flax seed meal that I use does not seem to have a taste, and I mix in a tablespoon each morning with my cereal. It is a consistency of coarse powder or flakes.
But if you don't need it, why take it.
I assume you will be followed for 5 years with regularly scheduled cea blood tests, CT or other scans and colonoscopies. My CEA test has gone up and down a bit over the years because different factors can affect it. At first it would cause me some stress if it went up, but then it would come back down. My doctor told me that he was only concerned with a pattern of rising numbers that were well over the warning numbers.
Wishing you continued good luck with your recovery and let me know if you have any questions that I might help you with.
The Following User Says Thank You to gwb123 For This Useful Post: oct.39 (11-07-2012)
I am sorry for not keeping in touch with you. It has been quite a hectic time for me since I finished my last cycle of Xeloda after which I had 4 weeks to " recover " from the therapy. On 27 Aug I had a last visit to Cancer Clinic and was handed a Final Report by my doctor who was dealing with in lieu of my oncologist, who thought / I assume / that a family doctor who is a member of the team looking after me is good enough to represent my oncologist.
There is no evidence for recurrent or residual disease.
- The pancreas, kidneys and adrenal glands are normal.
- No free fluid or significant lymphadenopathy is seen in the abdomen or pelvis.
- There is no evidence for bony metastases.
- There is no pathologic nodal enlargement.
- The chest wall is clear.
- Central airways are clear.
- The lungs show interval stability of a tiny nodule on image 20 to posteriorly in the left upper lobe. No other concerning findings.
- Bones show no destructive lesions.
- There is no evidence intrathoracic malignancy.
I was told by my doctor that I would not need to come to the clinic. I was not given any date for a follow up appointments. My blood tests showed all in a normal range. CEA - 1.7 , no change from the previous test. During a few weeks after my last cycle / 8th / , I experienced some side effects, mostly sensitive hands / tingling/ and swell of my feet. At the moment I feel great, just like in my prime time. Only one problem bothers me which is related to my BM, which I had mentioned to you in my previous post. I talked to my family doctor / not that one in the Cancer Clinic / , who actually was not helpful at all. He was in my opinion responsible for misdignosed my problem and testing for parosite etc while the tumor was growing and the bright blood was visible. That tumor was found /during a colonoscopy for which I had to wait 120 days/ to enter through the wall of the colon and effecting 2 lymph nodes out of 47 removed with the tumor. One lymph node was asessed as " N " and another one as " High grade ". So according to Duke's staging I was at 3rd Stage. If I had a colonoscopy right away after reporting a blood in my stool, the tumor wouldn't invade through the wall of colon. That is my perception.
I think that my BM problem is due to resection of 8" of colon. I have in my diet a lot of fibre. I have no neither diarhea or constipation . I do not have any bloating or pain. I follow your recommendation as to diet. It is very puzzling to me , that I do not have any urge to have a BM. I have to " push " it pretty hard . The stool is usually very normal except a obnoxious faul smell. I suspect that there is a bacteria overgrowth, so I eat a lot of yogourt, take omega 3 capsules, honey instead of sugar. That situation has been since my final cycles of therapy. I have no idea whether it is just a normal for a person who underwent a resection of a colon or there is some other reason for that abnormality.
As to my orgin, I am Polish born in Russia. In 1970 I emigrated from Poland to U.S.A. After 2 years I emigrated to Australia where I lived till 2003. In that year I moved to Canada where I married a Canadian lady. We live in London, Ontario. We sold our apt and right now we are in process of moving to a rental apt in the same town.
All the best.
Looking forward to hearing from you
first I thought you were in the USA, then Australia because it is listed as your location in your profile information. So we are both in Canada.
It sounds like your CEA and CT scans are very good news. Normally colon cancer spreads to the liver. I think you are on the 5 year plan of periodic CEA and CT Scan check ups. You should talk to your doctor about establishing the schedule. There should also be an annual colonoscopy. This is what my doctors in Vancouver have told me is the normal procedure and what I did. After 5 years you are considered cured. I would think you are 90% cured after surgery, and 2% more for each of the remaining 5 years of monitoring your health. My doctor told me that the chances of recurrence are reduced as time goes down, and he had never seen colon cancer recur after the 4 year mark and rarely after 2 years. He told me to relax after 18 months to 2 years.
I did have some problems with bowel movements (chronic constipation) for about 6-8 months after the surgery. Drinking lots of water, 8 glasses a day, and fiber supplements helped. I also took one docusate sodium (colace or generic brand from loblaws) every other day as a stool softener. Avoid any kind of laxative including Sennakot. Gradually my BM have returned to normal, but I have to maintain a good dietary schedule. You can get excellent probiotics at the health food store. They come in small single shot bottles for about $3-$5 each and are usually kept in the cold storage section of the store. They are a much higher and more comprehensive probiotic bacterial ingredient.
I found it difficult to get good advice about having regular and normal bowel movements from my doctors. If you are having problems with mobility or being regular I would get a referral to a gastroenterologist if you are having problems.
Wishing you continued good health.
It was also a slow process for me to be diagnosed with colon cancer because I did not have any of the normal signs like blood in the stool. I was just having problems with constipation. My colon surgeon told me this kind of cancer is very slow developing and a couple of months is not a significant issue for wait time. I would think sooner is always better than later
I have no idea why my replies to your comments do not go through.
As I am not a frequent user of this forum I am not really familiar with the rules and processing of messages.
I always forgot to ask you, why you were treated for cancer as you didn't have actually cancer. I wonder what stage your cancer was diagnosed.
I wonder whether you heard about a Dr Stanislaw Burzynski who cures cancer for 35 years in his Huston clinic. There are many testimonials of his patients who were totally cured.
I would appreciate your opinion.
I just got your post dated in October and it is now Feb 6. I first had problems with constipation and initial diagnosis was diverticulitus. Due to inflammation of the Colon they could not do colonoscopy immediately. When they did the colonoscopy a tumor mass was found. Biopsies taken at the time were negative for cancer, but it had to come out because it was blocking colon and doctor was suspicious it could be cancer regardless of biopsy report. When it was taken out in colon resection it was completely examined and it was stage 2 colon cancer with no spread to 25 or 27 lymph nodes examined. I did the capecitabine for 6 month protocol because of the inflammation that had occurred which could have let some cancer cells escape and spread.
I think one or more of my posts to you may also be missing. How are you doing?
Hope all is well with you and wishing you the best.
My mistake, Oct.39 is you "online nickname", not when you sent the posting.
I did look at the Houston Clinic and the alternative treatment protocol you mentioned. I see that it is controversial and there seems to be a lot of questions about it. I think we always hope there is a new treatment or solution and I am sure there will be. I would be hesitant to look at alternative therapies in place of approved and scientifically proven treatment protocols. I think this is really true for early stage colon cancer because the prognosis is so good with the established treatments. Is there a reason you are looking at alternative therapies, I am hoping that you are continuing on your recovery to good health. I guess once we have had cancer we are always looking over our shoulder to see if something sneaking up on us again.
Thank you for your post.
Please accept my the best Easter Greetings for you and your family.
As to Dr Burzynski, I am absolutely not interested in any alternative treatment and would discourage any one who would seek any help at Burzynski's clinic.
It has been 8 months since my final cycle of Xeloda. I feel great and physically as fit as in my young age. I walk a lot and do on avarage 3 miles a day, and once the weather improves and the tennis nets are installed I am resuming my tennis coaching. Except of my colonoscopy last Dec / with no pollipsfound, and appt for the next one in 3 years, I do not have any other follow up.
I remember, you were mentioning about your regular blood test for CEA. I was not told during my last visit to the Cancer Clinic about any other tests to be performed after a completion of my chemotherapy. The doctor at the CC told me that I do not need to come to the clinic anymore.
I am going to see a dietitian for some guidelines regarding my diet. I think that I have enough of fibre in my diet but many times I have to strain initialy to have my BM. I worry that I may develope a hernia or other problems.
Except that above mentioned problem, everything is ok so far.
Last edited by oct.39; 03-29-2013 at 04:21 PM.
Reason: correction of typ errors
Great to hear that you are doing so well and have found your life getting back to normal.
I am surprised that they are not following up with regular checks for a 5 year period. I wonder if you should or could get a second opinion on that question. It is my understanding that a CEA Blood test should be done every three months and a colonoscopy every couple of years, maybe 1, then 2 and finally at the five year time. My doctor told me that after 5 years of no recurrence you are considered cured and any new cancer is considered a new disease not related to the first one. My doctor told me that it is rare to see it come back later after 18 months or 2 years have passed. But they like to check to make sure. The cea will indicate a tumor if it is a steadily rising cea count in the blood over a period of time.
Regular bowel movements were a minor issue for me, basically constipation. Fiber is good, but you have to make sure you get lots of water with it. If you don't drink enough water the fiber will harden like concrete. I manage it pretty well with diet, and can see problems if I forget to eat fiber, fruit, beans and drink enough water. Ground Flax seed meal and psyllium husks suppliment are the best form of fiber for me, along with fruits and vegetables. I make "pinto" beans which also work well to keep me regular.
The first year after surgery I had to take docusate sodium gel caps occasionally to keep the stool soft. They are cheap and one a day or every other day for a couple of weeks would work well. (I do not recommend senekot or other laxatives as you can become dependent on them) I found it hard to get good advice from a doctor about constipation or bowel movement issues. Maybe they don't study it very much in med school.
Thanks for letting me know how you are doing, and so glad to hear you are back to coaching tennis and your health is doing so well.