erins wrote:My oncologist used some of the same numbers for me, but I was negative for LVI (T3N0M0, G1-well-differentiated) tumor, sigmoid colon). He said that it was an even choice, but I have serious underlying kidney issues, so the reduction in recurrence risk wasn’t worth the risk of renal failure. Side effects from chemo didn’t really enter the calculations, and without the kidney issues I’d have likely chosen to do some adjuvant chemo.
Folks here have lots of suggestions either way you go—it’s a hard decision to make, especially if you’re otherwise healthy.
DarknessEmbraced wrote:Welcome to to the group! I was diagnosed as stage 2a in 2014. T3N0M0. My pathology report said lymph vascular invasion undetermined so I was referred to an oncologist. The oncologist said chemo would only give me another 3% to 5% reduction in risk. Chemo wasn't recommended. I didn't have chemo and have been in remission since surgery.
esuperbaby wrote:DarknessEmbraced wrote:Welcome to to the group! I was diagnosed as stage 2a in 2014. T3N0M0. My pathology report said lymph vascular invasion undetermined so I was referred to an oncologist. The oncologist said chemo would only give me another 3% to 5% reduction in risk. Chemo wasn't recommended. I didn't have chemo and have been in remission since surgery.
May I ask if you were G1/ G2 differentiated?
Did you struggle to have chemo in order to gain this 3-5% at that time ?
My oncologist mentioned something around 2-3% benefit from being having chemo .. that’s the critical decision with only LVI suspect as high risk factor in my case ..
betsydoglover wrote:My take on this is colored by the fact that I was initially diagnosed Stage 4, so the decision to do chemo was obvious.
However, ask yourself how you would feel if you recurred as a Stage 4 and hadn't done everything you could have to possibly prevent a recurrence. Not to scare you, but we have all known people initially diagnosed as Stage 2 who sadly are no longer with us. Everyone has to make this decision for themselves, but this is a factor to consider, irrespective of statistics. When my lung met (a recurrence) was removed, I had the choice of Xeloda or no Xeloda and decided that I would hate myself it I didn't and had another recurrence.
Side effects from the various colorectal cancer chemo regimes are definitely there, but while everyone is different, for the most part not what they present in TV shows / movies. Xeloda alone is the easiest - hand foot syndrome is not fun, but also is manageable.
You are fearful of chemo which is totally understandable. Please remember that during a course of treatment the oncologist may likely reduce the dose one or more times to mitigate side effects. Also, chemo is not a "Yes I'd do the whole course" or "No I won't do any" - you can always stop if the side effects are too bad.
Take care, and best wishes as you make your decision.
weisssoccermom wrote:I did the 14 days on 7 days off and frankly, by day 11 or so, I wanted to be done. It honestly wasn't that bad though and between cycles, I felt great. The one thing that can make the side effects of Xeloda worse is consuming too much folic acid. If memory serves me correctly, you are not in the USA. If so, that may be a good thing. In the USA/Canada, our grain is fortified with folic acid so eating things like cereal, crackers, bread, pasta, etc. will contain large amounts of folic acid. Let me clarify a bit. Folic acid allows the 5FU (what Xeloda is broken down into) to remain in the body longer. With INFUSED 5FU, that is important which is why leucovorin (a derivative of folic acid) is given with infusions. However, with Xeloda, because one takes it on a daily basis, no folic acid/leucovorin is needed. So, my advice would be to:
stop all multivitamins as (at least in the USA) they all contain the recommended daily amount of folic acid
read labels carefully and look for how much folic acid is in a serving.
if your grains are also fortified with folic acid, you don't have to avoid everything.....just watch the carbo overload!
As for the hand/foot syndrome.....I never got it. I was on Xeloda for 5 weeks during radiation (first week was with infusion.....HATED it) and in the next 5 months, I also was free and clear of the hand/foot. I was very proactive and used a TON of lotions/creams multiple times a day to help avoid it.
As for working, I wasn't working at the time but my side effects were no worse than premenstrual cramps. A warm heating pad and a little nap was all that I needed. In fact, keeping a 'normal' routine was extremely beneficial for me. I still drove carpool and taught my son how to drive. The household chores were still done although I did get out of the dishes (yeah!). Most times, cancer patients just want to be NORMAL and I would recommend trying the Xeloda and try to continue your regular routine.
One last thing to ask your onc about is trying Xeloda on an newer protocol.....7 days on.....7 days off. You would still do the required amount of Xeloda but the day 11 or so 'feeling yucky' part doesn't get to you. I've known a few people who have been on this scheduling and have been able to work, feel fine and have medically done just fine on it. At the very least, talk to your onc about it.
Honestly, while I know chemo isn't something anyone WANTS to do....I would seriously tell you to do it. It's good that your doc is open to Xeloda as opposed to infused 5FU...no port needed, no minor surgical procedure to place port, no pump, etc. It is doable and like all of us before you, we know that you can do it as well.
Best of luck with your decision
Beckster wrote:esuperbaby wrote:DarknessEmbraced wrote:Welcome to to the group! I was diagnosed as stage 2a in 2014. T3N0M0. My pathology report said lymph vascular invasion undetermined so I was referred to an oncologist. The oncologist said chemo would only give me another 3% to 5% reduction in risk. Chemo wasn't recommended. I didn't have chemo and have been in remission since surgery.
May I ask if you were G1/ G2 differentiated?
Did you struggle to have chemo in order to gain this 3-5% at that time ?
My oncologist mentioned something around 2-3% benefit from being having chemo .. that’s the critical decision with only LVI suspect as high risk factor in my case ..
I would like to weigh in on three things....first, right sided colon cancer is different than left sided and rectal cancer. My oncologist told me that if I had a recurrence, they would be less options for chemo agents. Second, was your pathology done at a major cancer center....many Stage II have had a different pathology outcome when they sought out a second opinion...viewtopic.php?f=1&t=60639&start=15
Third...were you tested for MSI? If you are MSI deficient, you would not need chemo because 5/FU could cause more harm then good.
You need to advocate for yourself and make sure that you get ALL the information needed to make a decision. I did have hand/foot syndrome from Xeloda and my onc adjusted my treatment plan. Yes...it is going to be an inconvience, but for me, it was worth it. LVI is subjective, but it is considered a precurser to lymph node metatsis. If you are struggling to make a decision, than you need more answers!
weisssoccermom wrote:I'd like to give you one more piece to contemplate. IMO, Xeloda allows the patient to be more NORMAL. Right now, you're having a myriad of emotions and for most cancer patients, trying to be as 'normal' as possible is the ultimate goal. Yes, it's nice to be pampered but most patients generally don't want to be singled out, act like someone who is really ill or look like it.
With Xeloda, you don't have to tell anyone you're taking the pills. It's between you and the pharmacist (or whomever you get them from). There is no pump, no minor surgery to place the port, etc. When you are done....you're done. Sure, there will still be onc visits and blood draws.....there would be those with any chemo protocol....but with just the oral form, YOU are in control. Even having some 'control' during your journey is a POSITIVE thing.
It sounds as tough you've decided that Xeloda is the best option for you and that's great!I It isn't that bad and considering the other options you could have been given, it really is very mild. Very very rarely are there long term side effects. Yes, you might have a little queasiness but generally it is very tolerable. The neuropathy that you may have read about is caused by the oxi, not the Xeloda. Sure, there are always those patients that have the 'out of the ordinary' experience with any drug but you should not anticipate problems.
Take a deep breath.....get yourself mentally ready for this journey and keep coming here for more support and to let us know how you are doing.
peanut_8 wrote:I found exercising to be beneficial during treatment. Since I live close to a state park, I'd drive over and hike for 30-45 minutes about 5 times a week. It's a beautiful park, so it would elevate my mood, and the terrain wasn't to challenging. Good both mentally and physically.
Best Regards,
peanut
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