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

Hello Martin, I am sorry it has taken so long to reply, but the last few weeks have been quite hectic with work, appointments, and some miserable cold and windy weather. How have you been since we last wrote? I have been thinking of you and continue sending positive thoughts and prayers your way, as well as to others who are also dealing with cancer in any form. For the most part, my treatment has been going well with the Xeloda, and I just started my 4th cycle yesterday. I have gained some weight and expressed my concern with my oncologist last week, who said that Xeloda can cause weight gain. I expressed my disappointment that no one told me this. While I admit that I overindulged a bit during the holidays, I have been careful for the last few weeks to make sure I don't continue on that path. The Xeloda seems to increase my appetite, and although I get busy during the day, I find myself making sure I take time to eat some lunch, but in the evening is where I really need to be careful so as not to eat later at night before bed. I am hoping our weather will improve so I can start walking outside, which I believe will help quite a bit. Have you experienced any issues with weight gain during your journey? I had read in someone's post that they had gained several pounds, but that was before I started experiencing the same problem. The doctor said things will stabilize, but I am concerned about gaining too much and not fitting into my clothes, and which could cause other issues with blood pressure, etc. How much longer do you have to continue your treatment? I do hope you are getting good results and favorable reports from your doctors. Please let me know how you are doing when you get a chance. Hopefully, Spring will be right around the corner so we can all enjoy some warmer temperatures and be more active. Will be in touch again soon. Warm Regards, Lee

Hello Lee. Thanks for your update. I'm sorry to hear about your issue with weight gain on Xeloda as I have experienced quite the opposite! In fact I've been talking to a dietician about how to pile on the calories. I think the reason is that prior to my colon operation on 4 November to remove the tumour I was 100% fit and rode my bike 50 miles a week as well as lots of walking, which the surgeon said was really good news and aided my quick recovery. The reduction in leg, buttock and arm muscles since seems to be the cause of the weight loss but a health check recently indicated that my BMI was currently spot on (and produced a green smiley man on the health check screen which the health nurse said she hadn't seen for ages!). Despite this, I'm hoping to put on some weight once I get back on the bike again. In your case I hope the steps you're taking will result in weight loss, but I wouldn't worry too much about it - getting out for energetic walks with your dogs should help a lot.
It's countdown time for me! Only 6 more Xeloda pills to take, this evening and tomorrow morning, and the 366th pill will then have been consumed. The pattern over the 4 cycles of treatment have been similar - a tough first week after an infusion on day 1, an easier second and an almost normal third. Constipation / bloating / discomfort has been the main issue throughout which hopefully will now improve. I got signed off last night by my oncologist but will have a follow up CT scan in 6 weeks followed by a consultation with the surgeon. All being well, that's the end and life can continue.
Yes, it's great to see daffodils emerging here in the UK and we've had wonderful displays of snowdrops and aconites. The longer days are nice too and so those of us in the Northern Hemisphere all have a lot to look forward to! But let's hope this also brings peace for the poor people of Ukraine.
It's been so useful comparing experiences and I look forward to keeping in touch. I hope your subsequent cycles of treatment also go well. Best wishes. Martin

Wonderful News Martin! I am so happy that you have approached the end of your treatment cycles, and despite some of the side effects, can now get on with enjoying life and looking forward to great things. I do hope the weight gain happens soon. Did the dietician recommend anything i particular? Maybe just incorporating some of the higher calorie, yet health foods into your routine will help. All of the walking you are doing may be increasing your metabolism and burning up the calories much faster. I pray that your upcoming testing will have successful results, and please let me know how that goes once you get it all done. My oncologist said last week that I will most likely continue this cycle until August, and I suspect the reason for that is because I am only taking the Xeloda and no other treatments, which is the best plan for me, especially since I have t work. I will be getting a CT scan at that time, and then my next colonoscopy is a year from my surgery, which will be this November. I am so looking forward to getting through the rest of this, but trying to stay positive. Yes, I do need to get back to taking better care with my diet (as I was prior to the treatment and holidays), and also my walking routine. My sciatica has been an issue with the walking, so I am scheduled to have another steroid injection in my back (only takes a few minutes) late April, so I am looking forward to getting that done. Meanwhile, I am trying to watch what I eat more carefully. Will be thinking of you as you go through the next step, and will be sending positive energy your way. By the way, you are welcome to have some of my calories. Ha Ha. Warmest Wishes, Lee

One more thing I forgot to mention. I have noticed that my eyes are very sensitive to light and sun, so I asked my oncologist about it and she said that is not a side effect of Xeloda. Not sure how that could be the case since I did not have this problem prior to treatment. Have you experienced that? Lee

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

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 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

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

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

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.