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Xeloda for colon cancer - Scared about side effects and need support
Hello, I was diagnosed with stage 3A colon cancer after surgery because 1 lymph node out of 35 came back with cancer. I am supposed to start Xeloda in a couple of weeks for 6 months, and worry about how I will function working from home, taking care of my two little dogs, and living with the side effects. I am all alone and very scared, and would appreciate knowing how others dealt with taking Xeloda and how they managed through the process. Thank you.
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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.
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
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1 ReactionHello 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
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2 ReactionsHi 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 again, Yes I agree about finding another way to communicate non health-related issues. In order to find each other on LinkedIn, I would need your last name and perhaps the name of your business to distinguish you from other people that may also have the same name. My name on LinkedIn is Lee Dill. My business name is Leed Research, but it's better to go under my name for more recent activity. Hope to connect soon.
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.
Hello lisaf64
If you scroll back to the beginning of this thread and click on Colorectal Cancer Support Groùp this will take you to lots of other threads, some of which may be particularly relevant to Stage 4.
In the case of leed2022 and myself we were diagnosed around the same time at stage 2/3 level and had similar treatment and so we found it good to compare experiences. My thread is entitled 'My journey with rectal cancer. What's your experience? '.
Best of luck.
Martin
Hi Lisa, I think Martin's reply makes sense, and you just have to scroll back to the beginning of the thread. You can also ask the moderator for help if you get stuck or have trouble. There may also be a specific thread and posts under a heading for stage 4. What has your experience been so far? Wishing you the very best on your situation and will keep you in my prayers. The key is to follow your doctor's instructions and stay positive. We all know it's hard, but you are not alone. We are all here to help, so feel free to ask questions and share your concerns. Take care and let us know how things are going. Sending hugs your way. Lee