chemo

[Abellee]

I had a bowel resection in February (sigmoid) and found out that the part they removed for analysis was stage 3T N1 that means stage 3 and into 1 lymph node.

I have been told to strongly consider Chemotherapy both Intravenous and oral: oxaliplatin and cepecitabine.

I am looking for anyone who has had this chemotherapy and any feedback (I understand everyone reacts differently) as I am scared and don’t know anyone who has.

The leaflet they gave me is so hard hitting.

I’m not sure if anyone can help.

Thanks

Clare

[GCCA-Survivor Administrator]

Hi Abellee,

Thank you for posting on Colon Cancer Connected. I'm sorry you're having to deal with cancer but I'm glad to see that you had the bowel resection and got rid of what you can. Now you are faced with doing some chemo to mop up any stray cancer that may be still lingering. You are stage 3 which tells me it has metastasized but it's still in the local area. The cancer has not spread to distant parts of your body.

I was stage 4 in my cancer fight. During the first two years I did folfox chemo and folfiri chemo regiments. As a part of that, I did have oxaliplatin. The folfox has 5-fluorouracil, oxaliplatin and one non-chemotherapy medication (leucovorin).

You are corrected that not everyone gets all the side effects. I did get the aversion to cold and could not drink icy drinks and I wore a glove if I had to get something out of refrigerator. I did get some neuropathy which still lingers to a small extent 11 years later. The fatigue increased the more chemo treatments I received. I did 12 rounds of each of those regiments. My taste buds took a hit as everything had a metallic flavor associated with it. I did overcome that by adding more spices to my foods. I was expecting to take a beating as I heard chemo does that to you. But I also kept in mind that I'm fighting cancer and I didn't know how to do that on my own. I left that to my doctors and focused on being the best patient I could be.

When I first got cancer it was a shock. But I immediately knew it was something that needed to be dealt with and I needed my doctors to help me do that. I tried to focus on things that I could control. Things like nutrition, attitude, faith, exercise, and hydration are things that I could control. For me, the goal was to become NED (no evidence of disease). I wanted that cancer gone. That was the goal and you head right at it. After over two years of chemo, I had to head in the direction of a clinical trial and that turned out to be very beneficial. This year I will be six years and NED. Altogether, it was over a 4 1/2 year fight.

So, if your doctors are recommending that you take some chemo then maybe that's the thing to do. Do you have confidence in your doctors? Ask them if there are any alternatives to chemo. Is there a clinical trial you may qualify for? Since you had a bowel resection and there was cancer, I would think it's a good idea to have genetic testing to see if there's a hereditary aspect to what you are experiencing. That was a very important thing with my doctors. Genetic testing could also lead you to some personalized treatments / therapies. It did for me. It's a good thing to know because if there is a hereditary condition, then others in your family may want to have some testing as well to see if it involves them.

I do wish you the very best with what you're having to go through. I know it won't be easy but it may be necessary. I hope there are others on this site that will have some comments about chemotherapy. If you would like to send me a private chat to discuss this further that would be fine. You have to be strong, and I hope this helped you. Part of the issue is accepting that it's there and you have to fight it. But please know this, you don't have to fight alone. I can be in the fight with you and anyone else you want to bring into it as well.😁👍💪❤️🙏

Please let us know what you decide to do. To share your insight with your cancer journey could prove to be beneficial to others on this site.

Thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

[Abellee in reply to GCCA-Survivor]

Thank you so much for your reply and sharing your story. Of your stage 4 cancer fight. That’s great being six years and NED.

I am worried about the side effects, however, the ones that I can’t get my head around are the blood clots (I have bad veins in my leg) and heart attacks I am overweight and diabetic so that goes against me. I know it is a small chance but my brain is fixated on it and I am struggling. I am doing what I can and controlling my eating , water, exercise and whatever I can.

I am naturally a bubbly and outgoing person but do suffer with paranoia. I know I need to stay positive and fight and I will do my very best. I’m hoping that when I start chemo that these thoughts will gradually go. I am seeing a counsellor who is helping me.

I did get offered a trial or the standard route but didn’t feel I had enough information regarding the trial so have opted for the standard route.

Yes I do have faith in my doctor and am going to do the genetics.

I absolutely want to share my story and help others.

You have helped me, thank you so very much.

Clare

[GCCA-Survivor Administrator in reply to Abellee]

I am on blood thinners as well. I take a 20mg Xarelto daily. I was put on thinners from the very beginning as my oncologist discovered DVT.

Another thing ... see if you can get hooked up with a patient navigator at the hospital. That person should be able to help with getting more information about the clinical trial. It may be worth doing that so you'll have all the info. They really are dialing in cancer treatment on a personal level now. Very specific on whom may benefit. If you qualified for one, it may be worth finding out more details.

Another question to ask ... if you do the standard treatment, is there a point you can opt to move to the clinical trial? This would depend on the your circumstances and how your results are turning out.

Glad to see you like your doctor. That's important. I've seen some that have changed oncologists and had 2nd opinions. 2nd opinions can be very beneficial as the will either offer a different path or confirm the path you are on.

All the best ... Good luck. I hope you find a lot of benefit in your treatment.👍👏❤️

Tom

[Hidden in reply to GCCA-Survivor]

If I may say a very big Thank you to Tom for sharing your personal journey and very brave battle. I was getting ready to reply to Clare and say to Clare, that last year I was exactly where you are Clare. The same place. My Cancer Surgeon told me after the Colon Resection-that I Absolutely needed to do the Chemo bc it was in 13 lymph nodes all around the outside of my Colon.I too got scared just like you Clare.

I will say that I had a great summer last summer with some amazing long walks and quality time spent with my elderly dog who needs me very badly. I will never regret being here for him.

Those walks and time with him, were the BEST! and I Thank God for every day He gives me. Every. Single. Day. Is a Gift.

Also if I may say, that Colon Resection took so much out of me. Honestly, I did not think I had any strength left to do the necessary 6 month Chemo. I needed a serious break from needles and hospitals.

Nature is my Healer. I needed to get back to Nature and be with my dog. So I took that long break for just a few months. Just a serious re-setting rest of May to October.

When I asked to start the Chemo back up in October the new Oncology Dr. Brushed me off. He told me, "it won't matter now."

I should have left him right then and found an Oncologist who would do it. Because now Clare, as of last October 2022 I have been dealing with Metastasized Colon Cancer. And now I also have Metastacized Breast Cancer too. A double whammy!

So while I have no healthcare training but my personal opinion-what I WISH I HAD DONE myself last May-was to Get the Chemo. Be like Nike and "Just Do it!"

I am thinking of you and will start to Pray for you Clare on your journey. The most important thing though is: this is your life and you make your decisions.

I think if you do the Chemo now you most likely will not be in my shoes by next year. Instead, I am hoping and praying you will be NED as Tom now is.

Congratulations Tom! You are a real Champion and I am in awe and admiration of your strength and tenacity.

Just W O W! You are Super tough!

I keep asking for the Chemo to start. Months and minths now.

I need medical treatment of my Cancer so badly. I hope somehow I can hopefully get that exact Chemo treatment (I keep asking for it again and again), and would like to do all of those things you mentioned-Genetic testing plus Clinical trials. So far I keep getting put off and put off. Really scared for my life and that I am being ignored and abandoned as if my life isn't worth saving. Very very worried! Anyway, your Brave Victory gives me hope.

Thank you both to Tom and Clare for sharing. Best wishes ~

[Cabdriver]

I have just finished 5 &1/2 weeks of oral chemo and radio therapy which was every dayfor rectal cancer, it’s bit inconvenient taking 3 tablets every 12hrs but only some tiredness the last 2weeks and some constipation. Don’t ask other people opinion it’s your life.I didn’t think twice. I’ve got a follow up appointment next to discuss further treatment. I will have whatever my medical team recommend. Remember these people all specialist in their field and aim is to save your life. The more people you listen the more confusing it gets. Like I said listen to the doctors they know best.

PS Good Luck 👍

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