Xeloda for colon cancer - Scared about side effects and need support

Hello. I'm also Stage 3 and just about to start on Xelox, which I guess is similar? I had 23 lymph nodes removed, one of which had cancer cells (the one nearest the tumour). Perhaps we can compare notes on how we progress?

Hi Martin, Wow! I am so happy that you are doing so well and enjoying some time away for a well-deserved break. I'll bet the scenery is breathtaking where you are. I have been to France (Paris and Beaugency) a couple of times, but never saw the French Alps. Would love to go there someday and also Switzerland, Sweden, and Ireland). I am half Swedish and have many relatives there that I have never met. How long will you be staying there? Have you had your CT scan yet? Any updates from your doctor? I just finished my 5th cycle and had my week off this past week, and now starting my 6th cycle. I am going to confirm with my oncologist at the end of the month as to how much longer I have to go with the medication. I am doing fine, except found out that my dry eye problem has caused the light sensitivity and the lids were rubbing against the cornea. My eye doctor said it is reversible and has me on steroid/antibiotic eye drops which has resulted in some improvement, so I should be finished with those next week. I am now in the process of trying to work with my dermatologist and rheumatologist to see if my Lupus has flared up, and if so, is it because of the Xeloda, or because my Lupus medications had to be reduced since I am taking the chemo drug. Not sure yet, as many people have been having flare ups with the pre-cancer pink spots on their faces and other areas and I have had basal cell carcinoma on my face in the past, which required Mohs surgery. If it is pre-cancer spots, then no big deal, I just have to get treated for that. It's always something, and I think many doctors take an educated guess at times when someone has multiple health issues as to what is really the cause. In any event, I cannot complain too much, except for the feeling of fatigue at times when I am taking the chemo medication. Let me know how you are doing when you get a chance and what the doctor has to say. I have been thinking about you and sending very strong positive thoughts in hoping that you get some great news. Meanwhile, continue to enjoy your travels and all that Spring has to offer. My very best to you and your family. Lee

Hello Martin, it's great to hear from you. I am so happy you are having such wonderful adventures and are doing so well with your health. It sounds like the physical exercise is really agreeing with you. I've been doing well for the most part and had my CT scan last month. My oncologist said I am now cancer free, but of course, they will monitor me every so many months. I am due for my colonoscopy in October I believe, and then will have another CT scan in either November or December. My main problem has been the weight that I gained while taking the Xeloda, and even though I have been finished with it for over almost two months, I still fluctuate and gain more weight despite my watching what I eat. I am now working with a nutritionist and my oncologist said that most people do gain weight with the Xeloda and it will take some time for it to balance out. Did you by chance have any issues with gaining weight when you were taking it? I meet with my rheumatologist this coming Friday, so I'll see if he has any suggestions since he manages my autoimmune issues. I should follow your examples of staying more active. My work keeps me super busy, but I am grateful that I work from home. I have my own business doing sales prospecting for medical technology companies all over the U.S. and have been trying to grow the business so I can eventually hire a couple of people to do some of the work. I've been working on writing the content for my new website and then once that is up and live, then I will get rid of the old one which is very outdated. It's so hard to believe that we are almost into August. It's has been very hot here in the southwest but at least it's drier than where I came from when I lived on the east coast. I do hope you will continue to feel well and continue to enjoy the rest of the summer. Please keep me posted on how things go with your upcoming tests and I will send positive energy your way. Wishing you all good things, Lee

Hi Lee
It's good to hear of all the positive things happening in your life too. We seem to be on a parallel path when it comes to treatments and follow up procedures. Like you I was declared cancer free after the last CT scan but I'm awaiting a date for the follow up colonoscopy; there are a couple of polyps they want to keep an eye on.

On the weight front I had the opposite experience. I lost around 8 kilos and have regained about 3 and feel content at the current level of 73 kilos. I think the loss came from losing muscles through not cycling / walking during the post op / chemo phase lasting nearly 5 months but I'm trying hard to remedy that! Losing calories through not drinking so much beer / wine could of course be a factor too!
I hope your discussions with your nutritionist help solve your weight gain issue - I found my nutritionist's advice to be excellent re. gaining weight - a change to Greek yoghurt and full fat milk, for example, and increased protein.

Your business from home sounds great and I hope it benefits further once your new website is up and running and you have some assistance. I've been in book publishing all my life and helped to start a third business back in 2015 which is starting to do well.

On a sad note, a good friend of mine has just been diagnosed with bowel cancer and I have given him the name of this forum so that he can hopefully benefit from the advice available, as indeed I think we both have.

On a more positive note, I'm looking forward to a trip with my wife, sister and brother in law to Maine in October to visit a cousin, flying to Boston. This will include 4 days in Massachusetts and so if you have any recommendations of places to visit on the coast or inland please let me know! Thanks.
Keep in touch.
Best wishes
Martin

Hi Martin, I am so very sorry about your friend's new diagnosis. I will keep him in my prayers and hope he will find some help through the forum, and I'm sure your friendship will give him even greater comfort.

Oh wow! Small world. After college I started working in medical book publishing in editing, copywriting, marketing and advertising, and then worked in magazine publishing in circulation for several years after that. I really enjoyed it and had learned so much. I'm glad your business is doing well, and I wish you the very best with it going forward.

How nice that you are planning to be in the states in October. I am originally from the Philadelphia area and was born in Washington DC. I have lived in various states since I work from home, including Massachusetts for a short time. If you have time, Cape Cod is very nice. I have never been to Maine, but have thought about going there and also to Vermont at some point. You can also go onto the Chamber of Commerce websites for the areas you will be in, and they most likely will have some travel information listed. It's a shame I am not on the east coast anymore, or I would have loved to come up and meet you and your family in person. Who knows, maybe someday I will get to the U.K. I have never been there and would love to explore the many sites and countries of Europe.

Are you by chance listed on LinkedIn or FaceBook? I am on LinkedIn for my business and just use FaceBook for personal stuff with family and friends--not too often, as it's not really my cup of tea as they say. When my website is finished, I will send you the link so you can give me your feedback. I am writing all of the content, and a good friend of mine who is very experienced in the tech field is going to help me get the site on Word Press. It will take some time, as I am busy working most of the time.

I will be thinking of you and am sending lots of positive energy your way for your upcoming appointments and tests. Let me know how it all goes when you get a chance.

Yes, let's definitely keep in touch my friend. Wishing you and your family safe travels during your upcoming adventures.

Cheers! Lee

Hi Lee
Now that we are discussing non-cancer related topics such as holidays and business interests, (but how nice that we can do this), I wonder if communicating via LinkedIn or email might be more appropriate than this forum? We can still use the forum to share our cancer treatment experiences for the benefit of others.
You should be able to find me on LinkedIn.
Best wishes
Martin

Hello Martin, it's great to hear from you. I am so happy you are having such wonderful adventures and are doing so well with your health. It sounds like the physical exercise is really agreeing with you. I've been doing well for the most part and had my CT scan last month. My oncologist said I am now cancer free, but of course, they will monitor me every so many months. I am due for my colonoscopy in October I believe, and then will have another CT scan in either November or December. My main problem has been the weight that I gained while taking the Xeloda, and even though I have been finished with it for over almost two months, I still fluctuate and gain more weight despite my watching what I eat. I am now working with a nutritionist and my oncologist said that most people do gain weight with the Xeloda and it will take some time for it to balance out. Did you by chance have any issues with gaining weight when you were taking it? I meet with my rheumatologist this coming Friday, so I'll see if he has any suggestions since he manages my autoimmune issues. I should follow your examples of staying more active. My work keeps me super busy, but I am grateful that I work from home. I have my own business doing sales prospecting for medical technology companies all over the U.S. and have been trying to grow the business so I can eventually hire a couple of people to do some of the work. I've been working on writing the content for my new website and then once that is up and live, then I will get rid of the old one which is very outdated. It's so hard to believe that we are almost into August. It's has been very hot here in the southwest but at least it's drier than where I came from when I lived on the east coast. I do hope you will continue to feel well and continue to enjoy the rest of the summer. Please keep me posted on how things go with your upcoming tests and I will send positive energy your way. Wishing you all good things, Lee

How do I go back and follow from the beginning to follow your journey I can’t find from beginning. I am not good with forums to follow along. But trying to research stage 4 colon cancer.

How do I go back and follow from the beginning to follow your journey I can’t find from beginning. I am not good with forums to follow along. But trying to research stage 4 colon cancer.