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 05:21 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.
How have you been Gary? Sorry for not responding to your post much sooner. It was pretty busy period for my wife and myself. Mostly related to my wife's problem with her eyes /Glaucoma / and her back problem which requires very frequent physiotherapy.
As far as my health condition is concerned, I am in a very good shape just like in my heydays. All my blood tests are excellent according to my family doctor and my CEA just recently tested is 2.1, just a bit higher than that tested in my Cancer Clinic one year ago. As I mentioned previously, I do not have any follow up. My last CEA test was performed on my request as my family doctor is not aware of the follow up.
In my local newspaper there was an article about a Vaccine developed in a health centre run by Dr. Hal Gunn to treat Crohn's disease.
I am writing about it as you have mentioned about Crohn's disease which effected sometime ago.
I have not been to a dietitian. I follow your suggestion about a diet, but I still have some BM problem, to be more precise, it is related to my stool which is just as normal as it is described in medical infos, but there is a very contradicted opinion amongst medical professionals whether a healthy stool should float or sink. According to Dr. Gifford a healthy one should float, which is exactly what is mine. There are divided opinions supported by individual reasonings. I wonder what is your opinion and of your doctor.
I believe in expertise of Dr. Gifford in that matter and others as well.
I hope you are enjoying the last days of summer.
With my best regards
Last edited by oct.39; 08-18-2013 at 10:00 PM.
Reason: typo correction
Great to hear from you and that you are doing well. I am not sure how I mentioned Chrones disease. I have not ever had that. My initial diagnosis from a doctor was diverticulitis, but it turned out to be colon cancer on further tests.
I think it is strange for us old guys to start thinking about technical issues of stool composition and if they float or not. But biology is the basis of life and so it is good to focus on it. I have also heard that they should and should not float. Who knows. I am more concerned if they are thin and narrow over a long period as that would indicate a restriction in the colon which could be a tumor. It could also be inflammation which would make the colon smaller. I think diet and adequate hydration are important. My cea counts fluctuated, and it is more important if it becomes a rising trend. (or a really high number like 10 or 20) I understand many things can cause cea to rise and fall on a temp basis. Also different labs will give variations in the count. I would ask about having the test done more often to make sure that you would catch a trend upward quickly.
continued best wishes for your health and also for your wife.
Hi Gary/ Ed,
Good to read your posts, very informative.
I had an operation last September to remove a tumour in my Colon, and then had Chemo sessions every 3 weeks till January, part of the cocktail was Avastin, and Xeloda pills.
Had a scan in April and all clear, my CEA count in January was 5.5, in April dropped to 3.9 and last month 3.1, the Doctor was happy with that, but wants me to stay on Xeloda till the end of the year.
Not really any adverse affects, apart from my fingers looking like they have vinyl skin and a slight loss of appetite towards the end of the 14 day cycle.
In a way I was lucky I was out here in Thailand, had the Colonscopy on Thursday, and got the operation on the Saturday, think back in my native Scotland or home in Vancouver the waiting time would have being a wee bit longer.
Downside was that I was in between jobs and did not have Medical Coverage.
No problems with the Colon since then, take care with my diet, take Vit E supplement and also a Red grape seed extract tablet. [And a red wine now and again]
Good luck with your recovery. sounds like everything is going well. My doctor told me to stay ahead of any skin problems with the xeloda because if you let it get too bad then you have to quit all together. It is better to lower the dosage than to have to stop because it is the total amount you get. A lower dose for a longer period of time may give you more in the long run than a higher dose that had to be stopped completely. My doctor would gradually lower the dosage if my skin on the palms of my hands or feet started to be a problem. Blisters are definitely not good. Twisting off tight plastic lids on jars of peanut butter or some other new stuff from the grocery store was always a problem. I seem to remember that the skin was more sensitive to sunlight and you had to be careful in the sun. I am not sure about that and my memory may be wrong. A nice red wine is always a good thing. Reseveratrol is a great suppliment and what a nice way to get it.
Gentlemen, hope all is well with you and yours.
What was your total time on Xeloda? I will be on it for a year and my Dr wants me to stay on it till the end of the 2013, but I have a feeling he will want to keep me on it longer as the Doctors here in Thailand love their pills.
[ Go to see them for a cold or flu and they will prescribe 4 or 5 different pills.]
Go for another blood test next month but no problems so far.
I was on capecitabine (Xeloda) for 6 months, I think. It was over 5 years ago. I think it was on a schedule of two weeks on, then a one week break. I was also on a regular schedule of CEA tests every 3 months and an annual colonoscopy for one year.
The grading or stage of your tumor determined the reccomendation for Xeloda. Normally stage one, no penetration of the colon past a certain level or spread to the lymph nodes did not require anything other than surgery. There are grey areas in determining the stage of your cancer. Stage 2 may or may not require Xeloda. How many lymph nodes did they biopsy? The more the better. I think I had about 25 lymph nodes checked with no spread. Wishing you continued good luck. I am in Vancouver and had my surgery at St. Paul's hospital.
Sorry for delay, but was laid up with the Flu.
I think it was 27 lymph nodes
When I had my initial chemo treatment, it lasted about 6 months, then I had 2 months off till I had my scan, at the end of the 6 months the Xeloda was getting hard to take.
After my scan which was good, my Dr decided to put me back on Xeloda till the end of the year, like the previous time, it is now getting hard to take. just curious to know if there is a max time you can be on this treatment.
Hope to be back in Vancouver for a visit soon, so will try and get a second opinion on this.
Dr. Gill at the BC Cancer Agency in Vancouver is an excellent oncologist. I would get your doctor to refer you to her. The BC Cancer Agency in Vancouver is very good and I am sure any of the oncologists there would be excellent. If you have not kept up with your MSP payments while you are overseas you may have to catch up some of the payments to get the healthcare to cover you if your account is not active.
I was on Xeloda for 6 months. I guess it also depends on how strong the dosage is. I just did what the doctor told me and did not know a lot about the protocol, so I can't give you much info.
I am sorry for not responding you much sooner. I always have problems with signing in as I am forgetting my user's name and password. I am not that familiar how this HBoard works.
At one stage there was a letter from Stratfield /Dave/ being treated by Xeloda in Malaysia. I was going to get in touch with him over this Board, but for some reason his post has gone.
How have you been Gary? I am doing pretty good. I do not have any follow up /as you have/ as regard to your blood test/CEA/. My last test for CEA was last year. I have never heard neither from my Cancer Clinic nor my family doctor. I have only a fixed date for my next colonoscopy for Dec 2015.
So, I am not sure whether I should get in touch with CC as my family doctor has not received any instructions from CC. The CEA test performed last year was on my request. May be I should just forget about all those things. My doctor at CC , acting on behalf of my oncologist throughout my entire chemotherapy, made remark at the end of our last meeting after completion of my therapy, that " we do not want to see you again ". I have taken that remark, for a very good news.
I wish you all the best and enjoyable Christmas.
Hi Dave and Gary
How have you been? I have not received from you any response to my post dated 12 Oct 2013. I hope, both of you are well.
Dave - could you tell me how many lymph nodes were positive out of 27 cut out.
I was on Xeloda for 6 months without any interruption during the treatment. A dosage is calculated by taking your weight and height and converting the result to a square meters. For each m2 a dosage is from 625 to 1500mg. The dosage is adjusted due to severity of a side effects and your general health condition.
Looking forward to hearing from you. A Happy New Year to both of you.
Had to replace my lap top a few months ago, then started a new job, so was away from Healthboards for a month or two.
All well here, came off Xeloda in November and feeling good, got my next test in 2 months, so hopefully that will be okay.
Can't recall the number of positive nodes that were cut out, will check with my Dr. next appointment.
Best Wishes to you both.