The Colon Club

Hi everyone ! Just took my last 6 cycles of Xeloda pills tonight. Was only able to do 3 oxiliplatin infusions. I’m feeling a bit nervous and scared . My ct scan appointment is not til may 3rd. I know the the surgeon says they took everything out during surgery . And chemo is suppose to help in case they miss anything . Why do I feel so scared still. I feel like the xeloda pills was my comfortable . What signs do I look for now . I feel like I’m always gonna be scared every weird symptoms I feel. Especially I have to wait til my scan. I hope it’s gone .

I feel ur pain hopegirl, im only between chemoradiation and surgery and im panicking because im.taking nothing, atm and nervous that the lymphs anre going to spread.
And after ill b like u when chemo is finished,,,

I think u will ALWAYS have some worry but stress doesn't help cancer, so unfortunately u cant change the outcome of ur scans and stuff but try to bring positivity in as much as possible to keep ur life as happy as u can

Celebrate every small victory when u can
Life os short, make it a happy one !!!!!!

Hopegirl wrote:Hi everyone ! Just took my last 6 cycles of Xeloda pills tonight. Was only able to do 3 oxiliplatin infusions. I’m feeling a bit nervous and scared . My ct scan appointment is not til may 3rd. I know the the surgeon says they took everything out during surgery . And chemo is suppose to help in case they miss anything . Why do I feel so scared still. I feel like the xeloda pills was my comfortable . What signs do I look for now . I feel like I’m always gonna be scared every weird symptoms I feel. Especially I have to wait til my scan. I hope it’s gone .

I understand what you feel. My mum is currently in her two months break and we ask her for any possible symptoms everyday when we got home. There are still mets in her lungs and the next scan would be in May. Oncologist keep reassuring us it is fine for her to have such a long break but we keep doubting that. Anyway, I guess the most important thing is to know if there are anything special like symptoms. My mum sometimes feel hot while the weather is just right, we worry about her and keep an eye on her, but the anxiety should not be there all the time. That’s why we bring her to travel and go out with her. Cancer is the reality but you forget it sometimes. We sometimes check blood pressure and body temperature of hers at home but we don’t have to remind ourselves and her that she is a cancer patient.

In short, relax and develop your interest while eat good and sleep well. Prayers to you and your family.

It is scary. When you are going through treatment you feel you are actively doing something. I am 2 years out of treatment, and still get nervous especially as I get closer to my follow up appointments. I have one in May with my oncologist and she will order a scan at that time. I have graduated to visits and scans every 6 months. I don't know if the feeling of worry will every go away. I am hoping as time goes by, the feeling subsides and cancer won't always be in my head.

I'm sitting in Oncology waiting for my sixth cycle. I've done four of Oxaliplatin and this will be the fifth. We discussed TNT and the research that 3 months of Adjuvant Chemo has a less than 1% higher recurrence rate compared to 6 months of Adjuvant Chemo. He said that he'd like to do one or two more of Oxaliplatin but it seems like he considered stopping it. So we're dropping to 55% Oxaliplatin and maintaining the Xeloda dosage.

I think that staying busy in life helps to keep your mind off recurrence. I'm actually so busy that I haven't thought about recurrence in a while. I am sure that I am not going to do Oxaliplatin on the seventh round as it took four weeks for the Neuropathy to go away on cycle 4. Skipping it a cycle is how I determined that it isn't permanent and how long it lasted for that cycle. So the research is on your side for stopping at six cycles and it would have even supported stopping at four. I think that it will take some time for the changes to filter through but my local oncologist thinks that there will be big changes in treatment protocols in the future.

Were 7/1/2 years out of treatment. Still after all this time being NED, we freak out at every little cold, stomach ache,back ache etc. I don't think the fear every goes away, but it does get a bit better. When we were getting our scans every three months, and then every 6 months, I was a nervous wreck literally! Almost to much to handle.

What your feeling is completely normal. Just try and hand in there.

Hopegirl wrote:Hi everyone ! Just took my last 6 cycles of Xeloda pills tonight. Was only able to do 3 oxiliplatin infusions. I’m feeling a bit nervous and scared ... Why do I feel so scared still?...

I think it's normal to feel scared just after completion of chemo. Several research surveys have shown that fear and general fatigue are the two most common complaints of patients as they make the transition into the 5 year surveillance period. Why? I think it is probably because there a lingering side effect of chemo that causes the brain to be less able to handle and control feelings of anxiety. In other words, I think that exposure to chemo may have caused physical damage to the emotional control mechanisms of the brain, and we can no longer handle anxiety the way we used to. That's just my personal opinion.

Reported problems, post-chemo
fear of recurrence 68%
fatigue, 67%
sleep difficulty, 48%
anxiety,
depression,
negative body image,
sensory neuropathy,
gastrointestinal problems,
urinary incontinence,
sexual dysfunction, 41%

References:
Delinger, CS Barsevick AM “The challenges of colorectal survivorship,” J Nat Comp Network, 2009
https://www.ncbi.nlm.nih.gov/pubmed/19755048
Baker F, Denniston M, Smith T, West MM. Adult cancer survivors: how are they faring? Cancer, 2005.
https://www.ncbi.nlm.nih.gov/pubmed/16258929

Thank you everyone for your kind words. Sigh! It doesn’t help that my anxiety has gotten worst. I wish I didn’t have this bad anxiety disorder. I have more what if’s now and sends me to panic mode. Today I had to leave the gym early because I thought something was wrong , I was a little dizzy got scared and left. For those that are done with chemo. What do u do to stay NED . I exercise 5 to 6 days a week and I cut most meat out especially pork. I’m trying not to live in fear , this is still a shock to me . I have no family history. But I will try my best to stay positive and just take it one day at a time .

Hopegirl wrote:...For those that are done with chemo. What do u do to stay NED ? ....

There are three pillars of cancer prevention:(1) Regular exercise, (2) Healthy, well-balanced meals, and (3) Stress reduction program. You would need to develop a program to follow in each of these three areas. For you, development of an effective stress reduction program may be the most important, because long-term stress can lead to an impaired immune system, and this is what can encourage cancer to come back:

O Stoma Mia wrote:

testing765 wrote:...Finally, how did you deal with the fear/anxiety of the cancer returning? ...Thanks for the feedback.


Hi testing765 -

Having an effective stress reduction program is critical for survivorship planning as you enter the five-year post-chemo surveillance period. As mentioned in another post, persons who are entering the surveillance period should set up, and diligently pursue, effective programs in (1) Physical exercise (2) Nutrition, and (3) Stress management

Here are some links that describe ways to manage stress during the post-chemo period. The last link below explains, in detail, why stress reduction is essential.

Managing stress - cancer.net
http://www.cancer.net/coping-and-emotions/managing-emotions/managing-stress

Managing stress and cancer
http://www.cancercenter.com/community/thrive/managing-stress-and-cancer/

Stress Management (LEF website)
https://www.lifeextension.com/protocols/emotional-health/stress-management

Anxiety (LEF website)
https://www.lifeextension.com/magazine/2016/3/safely-reduce-anxiety-and-mood-disorders

Quick Relief from Anxiety and Stress Without Tranquilizer Drugs (LEF Magazine)
https://www.lifeextension.com/magazine/2007/8/report_stress_anxiety

Diet for stress management

http://www.webmd.com/diet/ss/slideshow-diet-for-stress-management

Stress and Cancer 101: Why Stress Reduction Is Essential
http://www.integrativeoncology-essentials.com/2012/04/anticancer-lifestyle-stress-reduction-101/
°

...Secondary prevention (maintaining a healthy body weight and active lifestyle) is recommended...."

Reference: Follow-Up Care, Surveillance Protocol, and Secondary Prevention Measures for Survivors of Colorectal Cancer:
American Society of Clinical Oncology Clinical Practice Guideline Endorsement
https://www.ncbi.nlm.nih.gov/pubmed/24220554

Hopegirl wrote:Thank you everyone for your kind words. Sigh! It doesn’t help that my anxiety has gotten worst. I wish I didn’t have this bad anxiety disorder. I have more what if’s now and sends me to panic mode. Today I had to leave the gym early because I thought something was wrong , I was a little dizzy got scared and left. For those that are done with chemo. What do u do to stay NED . I exercise 5 to 6 days a week and I cut most meat out especially pork. I’m trying not to live in fear , this is still a shock to me . I have no family history. But I will try my best to stay positive and just take it one day at a time .

Vitamin D3 supplements if your levels are below normal, tree nuts three times a week (not peanuts), exercise, and daily regimen Aspirin (after all of the treatment is over).

NHMike wrote:Vitamin D3 supplements if your levels are below normal, tree nuts three times a week (not peanuts), exercise, and daily regimen Aspirin (after all of the treatment is over).

Adding to NHMike's comment -- latest research shows eating nuts significantly decreases the chances of recurrence for Stage 3 CRC patients.

Patients with stage III colon cancer who ate at least 2 servings of nuts per week had superior disease-free survival (DFS) and overall survival (OS), according to results from the CALGB 8903 study published in the Journal of Clinical Oncology.

The association between total nut intake and improved outcomes was consistent across other known or suspected risk factors for cancer recurrence and mortality.

“This prospective study of patients with stage III colon cancer suggests that a diet with increased nut consumption is associated with a significant reduction in cancer recurrence and mortality,” wrote Charles S. Fuchs, MD, Yale Cancer Center, and colleagues. “Although the findings of our observational study do not establish causality, the results offer further support of the role of diet and lifestyle as modifiable risk factors of outcomes in patients with colon cancer.”

An ounce of tree nuts was considered 1 serving in the study, so 2 servings per week would be at least 2 ounces.

https://www.onclive.com/web-exclusives/nut-consumption-linked-to-survival-benefit-in-colon-cancer

Hopegirl wrote:Thank you everyone for your kind words. Sigh! It doesn’t help that my anxiety has gotten worst. I wish I didn’t have this bad anxiety disorder. I have more what if’s now and sends me to panic mode. Today I had to leave the gym early because I thought something was wrong , I was a little dizzy got scared and left. For those that are done with chemo. What do u do to stay NED . I exercise 5 to 6 days a week and I cut most meat out especially pork. I’m trying not to live in fear , this is still a shock to me . I have no family history. But I will try my best to stay positive and just take it one day at a time .

I can *totally* sympathize with what you're going through. I still remember the first day I took my Xeloda, staring at the pills thinking, "Come on, Tracy. It could be worse." Then I stopped, and thought, "No, no it can't. I'm literally swallowing poison here." I kind of laughed. The whole time I was on Xeloda I could not WAIT to finish and be done with it. Then when I reached my last dose, I realized that I wouldn't be actively fighting any stray cancer cells anymore, and that scared the crap out of me. I was almost more nervous at the end than I was at the start! I posted about that here on the group, and a lot of folks mentioned feeling the same way. You're not alone at all. And as others have noted, it's normal to feel that way. To some extent we're fighting an invisible enemy (invisible to us from the outside anyway), so laying down your sword is hard, even when it's been slicing you to bits.

Have you talked to any of your doctors about your anxiety increase? There's no reason to try and tough it out if you can get some help. Things ease up after you've been off it a while and ease back into the semi-normal routine of life.

I'm now 2-years NED, and to be completely honest with you I don't do anything too differently than I did before diagnosis and treatment, other than cutting myself more slack. I always hated taking medicine for anything. Now I'm on some meds for life, and I have to let myself be okay with that. It is what it is. It's excellent to try to live a healthy lifestyle, for everything from building your strength and white blood cells back up, to keeping your body in good shape. Just remember that you didn't cause your cancer by doing something "bad." As my surgeon pointed out, there are plenty of people with better lifestyles than yours who have cancer, and plenty with worse who don't. You can do everything right and still have it. So try not to beat yourself up too much, and allow yourself to breathe and enjoy life where you can.

Hugs from me,
Tracy

Hopegirl wrote:I’m trying not to live in fear , this is still a shock to me . I have no family history. But I will try my best to stay positive and just take it one day at a time .

Let me take you back to my own past if you'd like ?
Star Wars ... Master Yoda ... martial arts ..... a post to a buddy here on CTalk

Hey buddy your post reminds me of a silent promise I made to myself at 42 y.o.

" I will earn my black belt by the time I am 50."
The year I turned 50, I passed my first degree black belt grading in the fall.
It was always inside my mind, with positive thoughts and energies .. and literally became a part of me ...
thoughts into action

Like the old Nike commercials "Just Do It" It will go a long way towards your recovery both physically and mentally. You will be glad you did.

WHAT I learned from that experience is why I am still here NOW !
After grading to second degree black belt, that was my the introduction to " ...you got CRC ! "

AND I accepted it as just another challenge
just another grading
just another opponent

The mind, IMO is everything ... and we can fill it with harmful, self-destructive, crazy monkeys chattering constantly inside our heads

OR, as you have discovered and shared

Fill it with Master Yoda !

“Do or do not. There is no try.” - Master Yoda

be kind to yourself
be honest with yourself
be real with yourself

BUTT sometimes it IS time to kick some personal ASS ...
and who better to benefit from that ??? .... than ourselves !

Cheers and Mega Harmony to all on the Journey
CRguy

YOU Hopegirl
have it within you, the strength, the courage ....
to be your own best friend, advocate and warrior

whenever I would go to the dojo to train, the world literally disappeared for 2 hours for me.
It was my fortress of solitude

during a very extreme time in my life (NOT cancer related) I noticed that when I entered the dojo
I couldn't focus, couldn't escape from the world, could not BE in that space the way I had before

BUTT ... I just kept going back day after day
and at some point, things seemed to just start getting closer to normal for me
not the exact SAME as before ... but just closer to normal

AND I just kept going back
That was in 2000 - 2001

Now I am into 11 years of survivorship from Stage IVa CRC (from 2007)

Please JUST keep going ... day to day, week to week
to wherever your GOOD place is
you have one, we all do

mine was the dojo and I "lost" it for 6-8 months
BUTT eventually I found it again

and we are all here to help you find YOUR good place

Harmony on the journey
CRguy

Thank you WriterGirl1969 and CRguy. I couldn’t stop crying reading your positive comments . Thank you so much . Why do I feel scared without being on any type of chemo meds. I’m happy than i’m Done but i’m Scared also that i’m Not on anything .

I know exactly what you are going through.
My dad was diagnosed with rectal cancer in July 2017 and started the mob up chemo(CapeOx) after surgery in late Aug. Every chemo cycle was a nightmare for him, he had to deal with horrible side effect. To make it worse, he caught flu on the 4th chemo cycle and has to stop it. The oncology told us about the research that 3 months of Adjuvant Chemo has a less than 1% higher recurrence rate compared to 6 months of Adjuvant Chemo and he thinks it is ok to stop it here considering the horrible side effect.

I could not stop thinking about this since then. I keep asking myself, are we making the wrong decision? What if he is the 1%? As time pass by, I then realize being anxious doesn't help anything, having a peaceful mind can actually help my family. I try to tell myself positive things and these thoughts really help me calm down:
1. For stage 3 patients, surgery only has 60% cure rate. Maybe we are among the 60%.
2. The effectiveness of chemo is not evenly distributed through each round, missing the later rounds is not really that critical..
3. The new research is based on a large dataset, do believe in science.

It is always easy to say than do, I am still super anxious about the 9-month checkup next week, I am praying for a NED result.

I hope my experience can help, wish we all have only NED results coming.