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

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

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. Apologies for the long silence but all is going well and I hope the same goes for you. It's been a bit of a blur since skiing in April, starting to cycle again, albeit on an e-bike, and generally building up strength. I had a week's sailing in Turkey with some friends in June and now back in the French Alps enjoying wonderful weather and good food. So can't complain! I'm due a follow up colonoscopy soon and maybe a scan but all seems fine at the moment.
Let me know how you're getting on.
Best wishes
Martin

I just had surgery 48 hours ago.waiting for results…… so your chemo will be drug form? Or will it be injections? I have tried not to know too much…….it will make me crazy! But if you could explain it would be helpful. In people language. NOT medical jargon.

I took Xeloda for 6 weeks along with radiation. My side effects were not terrible. I didn’t have much of an appetite and felt very tired. Everyone reacts differently. I’m sure you’ll be fine.

This therapy is boring. Try buying a BOOST which exercises those muscles & makes it fun rather than tedious.

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 Lee. Greetings from the French Alps where I've been getting in some late season skiing, so there's life after colon surgery and chemo!
How is your treatment coming along?
Best wishes
Martin

Hello Lee. Apologies for the delay in replying - too many celebrations this past week at having finished the chemo! We have both been following a similar pattern of treatment except yours is focused more on Xeloda over a longer term (6 months I think you said) perhaps because you're still working, whereas my combination of Oxaliplatin infusion + Xeloda seems more harsh over 3 months but has a similar benefit and gets it all over with more quickly, at the expense maybe of more side effects such as constipation. I now have a CT scan in a month's time and a follow up colonoscopy at a date to be arranged.
Re. diet, piling on the calories through switching to full cream milk, Greek yoghurt, more eggs and cheese, non-alcoholic beer and the occasional glass of red wine does seem to be working but should you have any spare do send them my way! Interesting that your experience was quite the opposite but I would prefer to put on weight by rebuilding muscles lost through lack of cycling / walking over the past 6 months rather than adding pure fat. I'm starting a 3 month gym course next week which should help and aim to get back on a bike too, albeit an e-bike.
Re. eyes, I'm sorry to hear of your sensitivity issue. I have noticed some sensitivity whilst driving at night time but that could be because I have not done much driving recently. Otherwise, no problems on that front.
I hope your treatment continues to be tolerable and I look forward to hearing more about your progress. Best wishes, Martin

Hello
This my first time using the site. It seems I've been diagnosed with possible Colon cancer after the results of my colonoscopy. My doctor called me at home and I'm seeing him next week and he has scheduled a scan and additional blood work.

I don't feel scared, have had a wonderful life, at this point, it's the unknown and options. We briefly discuss surgery and removal of my colon and a bag it's all Wait and see. I just have an aversion to chemo etc and already had part of my colon removed several years ago and things have been ok.
I have an active athletic life style and can't imagine being stagnant.

Just so much to consider but feeling calm until all the results are in.
I have a friend who has the same but he is doing the chemotherapy treatment first to try and reduce the invasiveness of the operations.

I'll send an update but if anyone has been through the same I'd be interested in your path and options you found as possible alternative.
Thanks
C