My journey with rectal cancer: What's your experience?

Thanks for sharing your story; it is helpful to hear about others going through similar experiences. I have stage 4 colon cancer that had spread to the liver. They removed the masses in my liver and colon, but unfortunately it had spread to other areas.

I have had 13 infusions of Oxaliplatin, 5 in the spring of 2021 and 8 since this August. My experience is that the issues with the cold start fast and furious with the infusion, but start getting less intense after about 6 days and I can usually drink orange juice right out of the fridge with only a little discomfort after about 8 days. I have learned to take smaller sips when drinking anything colder than room temperature.

You are very right about bundling up when going out in the cold. Anything below 50F and my nose and mouth also get the slightly painful tingling, and some mild cramping in my hands. I keep a rechargeable Zippo hand warmer near by even in the house to help with the hands. I'm not looking forward to a Chicagoland winter - let's hope all of us have a short and mild one!

Day 40. December 15. First day of chemo today, so how was it?

The build up was worse than the actual experience which was comfortable, pain free and with wonderful caring staff looking after me throughout. The whole process took 4 hours from start to finish including 2 hours for the infusion of Oxaliplatin. I left with a bag of pills to last 14 days including Capacitabine and various others to counter any effects of nausea, diarrhoea or constipation, should they happen.
The main side effect explained was a feeling of difficulty in breathing if cold air was taken in or eating cold food / drinks but this would only be temporary and could be relieved if deep breaths were taken in through a face covering. This happened whilst still in the hospital room when I tried drinking some cool orange juice which was slowly warming up after coming straight from the fridge. It was quite a shock to experience the reaction but a few deep breaths soon relaxed the back of the throat and everything was fine. Owing to the outside temperature being -5C / 22F it was particularly important to wrap up well on leaving the hospital and when getting home.

Another side effect is tingling fingers when touching cold objects but I'm wearing thin cotton gloves to overcome this (very useful when extracting a bottle of white wine from the fridge this evening to make a sauce for the fish dinner!)

So all in all not too bad so far. Pills have been taken, more tomorrow and for the next 14 days over Christmas and then 7 days holiday before starting the whole process again. I'm expecting to get gradually more fatigued as the treatment proceeds over 12 weeks followed by a month of recovery.

I hope this story might help those about to go through a similar experience. And for those who are more advanced in their treatment or who have finished, it would be good to know what else lies in store!

I was diagnosed with Rectal cancer in June 2019. My treatments included 2 (6 treatment) rounds of chemo; chemo-radiation combination for five weeks, Rectal surgery to remove tumor & place ileostomy; surgery to reverse ileostomy& then the final (second round) of chemo. My temporary ileostomy was for six months. I was very adamant with my surgeon that she do everything to make sure this was not going to be permanent. She could feel my tumor with her middle finger & she is not a large person, so that’s how far down the rectum it was. I have recovered from my surgeries. It is quite a journey following surgery, takes time to get to know your new normal, at least in my case. I am 2+ years cancer free at least in that area. I may have an issue in my lungs currently being diagnosed. Other than that things were going quite well as l adjusted to my new normal. Don’t get discouraged during the process. Reach out to people for help! There is light at the end of the journey! There are support groups on the internet of many people who are and have gone through what you are about to experience. I have to say that I was always positive through my journey & always treated my care givers with the utmost respect & kindness. Hope this helped!

I think this is an EXCELLENT article to discuss with your doctor in determining your course of treatment, The more information you have about your situation will help guide in a more personalized treatment.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8791609/
Keeping in mind that we are ALL different, so having a discussion with your doctor is really important. As Cancer patients, the more knowledge we have about our disease can help in a more personalized approach to our care. That's why it is very important to have as much information at the beginning stages before moving forward in our treatment.

Here is an EXCELLENT resource explaining the importance of knowing our Biomarkers.
https://fightcolorectalcancer.org/facing-colorectal-cancer/colorectal-cancer-biomarkers/
There are many excellent resources now for Colorectal Cancer Patients. The more we know the stronger we are.

Liquid biopsy testing has not been mentioned. Is this something you would recommend I discuss with my hospital team?

Thank you for sharing. I'm really new at commenting but now I figured it out. You are keeping a great log of your journey. I do have a question though, did they do any liquid biopsy (CTDNA) testing after surgery? Or have they discussed this as an option for you? I was diagnosed with rectal cancer in October of 2014.

Day 25 reported yesterday. I think you need to click on 'more'.

Are there any more updates? How are you feeling?

Day 25. Incisions now healing well having had glue removed but masses of small itchy / painful spots then emerged around waist and on back, arms and legs resulting in several sleepless nights. OTC remedies such as calomine cream made no difference but Paracetamol helped to deaden the pain. Also tried some antibio / steroid cream on some patches which seems to have helped. Arranged to see a dermatologist next week but already getting better, perhaps due to incisions now healing up. Trying to increase walking distance each day - achieved 5,000 step target on Day 23 but only 4,551 yesterday! Big day coming up on 5 December to discuss possible chemo.
Whilst all this has been going on, the new plumbing system continues to work well, although at irregular intervals compared to the old days.

Hi Colleen
I'd much rather not be unique! The tweezer method was not painful but not as good as my own method of gently rubbing the glue off whilst under a shower, as recommended by a nurse.
Yes, by all means change the title of my updates. Happy to keep them coming, but not so happy with continuing discomfort from skin rash!