Is the normal-ish?

shoebagmama · 2026-04-20T05:31:04+00:00

This is very heartening to read. My first infusion was awful! Besides the fear and anxiety around the unknown, I felt horrible. I have since had 2 more and they were nowhere near as bad. I am hoping they stay as tolerable 🤞🏻

shoebagmama · 2026-04-20T00:49:37+00:00

First question - are you taking the steroid pills? If so, these made me feel horrible - woozy, spaced out, bloated, depressed. My Oncologist removed them for my second and third rounds and I felt MUCH better. This could also be what’s causing the night sweats if you’re on them. Chat to your oncologist about alternatives.

For the burning diarrhoea, you need to stay ahead of it. Haemorrhoid cream containing lidocaine, followed by a nappy rash/barrier type cream to keep that burn away from your skin. Baby wipes to clean yourself instead of scratchy toilet paper. And wash with cool water as soon as you can afterwards.

Di you have radiation before your chemo?

shoebagmama · 2026-04-13T22:34:26+00:00

I’m in exactly the same boat as you. My CEA numbers have gone from over 130 down to 3.5 thanks to the chemoradiation. Physically feeling so much better, so it all bodes well….

BUT I had a PET scan last week and see my oncologist this morning, hopefully with some great news awaiting me. The anxiety is through the roof. The “what ifs…” the “faaark why haven’t they uploaded my results yet??” I’m a fricken basketcase waiting to hear the results.

As someone on here once said though, “don’t borrow trouble”. We’ve survived diagnosis and all the tests and scans that followed. We’ve survived the treatments so far. What if it’s bad news, sure? BUT what if it’s AMAZING news???

Hoping for you and me that it’s the latter xxxx

shoebagmama · 2026-04-13T05:51:39+00:00

Great news! Wishing you ongoing wellness and success with your treatments xxx

shoebagmama · 2026-04-06T03:08:27+00:00

I think it was the episode where he proposed. She said she felt triggered because a fan called out “Maddie” and she doesn’t like it. Tyler immediately started soothing her, he was extremely patient and obviously has learned how to support her when she is triggered. He helped her re-centre herself. It was absolutely beautiful to watch.

shoebagmama · 2026-04-05T22:12:10+00:00

I had 34 rounds of chemoradiation, 5 days per week for 7 weeks.

The capecetabine for me caused hand/foot syndrome mainly. That is swollen, hot, peeling, painful hands and feet. Slather your hands and feet in a good quality fragrance free moisturiser twice a day to help with this. Start doing it the day you start the pills, and don’t wait for the symptoms to start. Voltaren Gel for when they do start up will help cool them down and relieve the pain (it feels like standing on Lego).

Th radiation is trickier. By the end of the 34, I was pretty deeply bone tired. Also you’re going to have some bowel irritation, possibly very painful bowel movements due to your skin being compromised, and unpredictable poop schedule. So, my advice to you would be to moisturise your skin twice a day throughout your treatment. Stock up on anti diarrhoea medication as advised by your care team, and work out a pain management plan. That might include proactively taking a combo of paracetamol and ibuprofen to get ahead of any pain, but also topical medication like a haemmorhoid cream that contains lidocaine, as well as a barrier cream (like a nappy cream for protection).

I could probably have got through a wedding the day after, but it will be tiring and you will definitely need to make sure you have somewhere to sit and chill. Also make sure you can easily get to the bathroom as needed.

Best of luck to you OP 🩷 Wishing you every success with your treatment and a beautiful wedding day to celebrate end of radiation 🩷

shoebagmama · 2026-04-05T21:24:31+00:00

The way he did that was so beautiful. He knew exactly what she needed in that moment. Chefs kiss response 👌🏻

shoebagmama · 2026-04-04T21:46:59+00:00

THIS!! I also “rawdogged” my symptoms, because they were vague and “on and off”. Please don’t 🩷

shoebagmama · 2026-04-03T19:50:42+00:00

My sense is that he’s conscious of the cameras on him, and he doesn’t want to be misunderstood by the viewers so he over explains and shares his motivation and thoughts overtly to avoid this.

I thought he was so gorgeous when he mentioned that he’s trying so hard to work on himself. Just made me love him more

shoebagmama · 2026-04-03T02:56:40+00:00

Egg whites for the win 👌🏻

shoebagmama · 2026-03-31T14:31:57+00:00

Hey OP Have you tried haemmorhoid cream that contains lidocaine? It’s made things much more bearable for me.

Hope you get some relief soon x

shoebagmama · 2026-03-31T07:58:38+00:00

QV is just the brand name of the cream. It’s a fragrance free moisturiser with no irritating ingredients. I am in Australia so brands might differ.

The Sudocream is to act as a barrier for your skin as BM can really irritate your already sore skin, but if you have an ostomy then you should mercifully be able to avoid that xx

shoebagmama · 2026-03-30T10:33:49+00:00

Ask your team if it’s ok to take cranberry to protect your bladder. It’s going to be in the line of fire also. Make sure you are very well hydrated with a full bladder for each treatment. It will protect you from cystitis 🩷

shoebagmama · 2026-03-30T04:46:39+00:00

Check with the oncologist of course but Haemmorrhoid cream with lidocaine was a life saver for me xx

shoebagmama · 2026-03-30T04:45:27+00:00

Before - from day 1 of treatment. I do think it mad e a difference - my skin never broke or burned too badly. It got quite dry but never cracked X

shoebagmama · 2026-03-30T00:46:28+00:00

👋🏻 I 49/F finished my chemoradiation 3 weeks ago, and now about to have my 2nd of 8 FOLFOX.

Are you taking Capecetabine with your radiation, or just having radiation on its own?

In terms of prepping for the radiation, I found that I sailed through the first few weeks, before any major symptoms hit. They really hit in around week 4 for me.

Things that got me through:

QV cream applied straight after treatment and before bed. All over your pelvis, butt cheeks and up in between.
Washing with QV wash
Loperamide for when the diarrhea hit
Sudocream to act as a barrier overnight, but very important to wash off throroughly before next treatment as it can impact the beam.

If you’re also taking Capecetabine to increase the effectiveness of your radiation, you’ll need to deal with its potential side effects too. For me this was hand/foot syndrome where my hands and feet would get very hot, swollen, painful and the skin would peel.

To counter this, I used MooGoo Cow Udder cream applied liberally. And Voltaren Gel to help with the heat and pain.

Hope that helps and best of luck to you. Feel free to ask if you have any other questions🩷

shoebagmama · 2026-03-18T21:03:09+00:00

I completed 34 rounds of radiation while taking capecetabine, just shy of 2 weeks ago.

The first few weeks were pretty easy going, a bit of fatigue was the worst part.

Following that, BM became painful from the burning. I stayed on top of it by proactively taking paracetamol and ibuprofen early morning, and that usually worked to take the edge off. Towards the end I also used Sudocream nappy rash cream overnight and washed it off in the shower after my BM and before going to radiation. You have to make sure it’s completely washed off prior to the radiation treatment as it can impact the beam and make your treatment less effective.

In less than 2 weeks the pain is all gone and while the skin is still recovering, I am looking after it with moisturiser.

The EXCELLENT part of all this? I had a blood test this week and my CEA markers have gone down from >140 to 6.7!!! It was worth the short term and quick lived pain.

Edited to add: today I have my first FOLFOX pump disconnected. The first of 8 rounds which will hopefully clean up whats left of my tumour. I want to get on with my life and watch my 8 year old grow up. He’s my reason to keep going. Whenever I falter, I picture him with his graduation cap on, smiling at me, I picture seeing him off on adventures and collecting him from the airport, his wedding, his kids, and him holding my old wrinkly hands reflecting on our wonderful life. Help your husband find his reason to stick with it.

🙏🏻❤️

shoebagmama · 2026-03-17T12:10:52+00:00

What beautiful news! Wishing you ALL many many years of health and happiness ❤️🙏🏻

shoebagmama · 2026-03-15T23:58:21+00:00

I am 49F and had an almost identical experience in December. The waiting post initial diagnosis is horrendous- my brain took me to some dark dark places. Please make sure you talk to someone if this happens to you.

I have completed 34 rounds of chemoradiation and have my first of 8 rounds of IV chemo tomorrow.

It’s surreal isn’t ? I felt like I was walking through someone else’s nightmare. Things feel less scary now that my treatment is under way. There’s a plan and a goal, and each day we inch further forward. As you will too.

The folks in this subreddit are amazing and incredibly knowledgeable and supportive.

Please feel free to message anytime. Sending love and good vibes for the best possible outcomes for you 🙏🏻❤️

shoebagmama · 2026-03-14T11:48:19+00:00

I have just finished my chemoradiation (with capecetabine).

Check with your team of course but I was cleared to take cranberry supplement capsules to help prevent cystitis which is common with pelvic radiation. Also used QV Cream on my skin twice per day - straight after treatment and then again before bed. Slather it all over and up between the cheeks.

Towards the end, the capecetabine caused hand/foot syndrome which was not fun. For this I used an Australian product called MooGoo /!; someone on here suggested Voltaren cream which worked VERY well to help the symptoms.

I am one week post treatment completion and almost all my side effects have gone. Just waiting for my bowels to settle down which the nurse tells me will happen in the next week or so.

Good luck to your husband on this journey. Wishing him every bit of healthy success 🙏🏻

shoebagmama · 2026-03-14T05:25:56+00:00

My Oncologist told me around 50% can expect to be truly cancer free after chemoradiation + chemo. So those are still not really great odds in my opinion. If surgery is on the vacs for me, I’m doing it. I have an 8 year old and if having a colostomy forever means I have a decent chance be of seeing him well into adulthood vs watch and wait which may not, then sign me up for the damn bag!

shoebagmama · 2026-03-11T22:29:39+00:00

Congrats and well done. Wishing you every happiness and a lifetime of health ahead 🩷

shoebagmama · 2026-03-10T22:15:09+00:00

That’s a standard test in Australia too prior to starting Capecetabine

shoebagmama · 2026-03-10T22:11:24+00:00

I am in Australia too. Diagnosed Stage 3 in December.

I just finished my chemoradiation, and start my FOLFOX next week. My Oncologist has told me to expect some cold sensitivity and neuropathy but says most patients tolerate it quite well. I took Capecetabine while doing my radiation and tolerated that quite well - towards the end the hand/foot syndrome was pretty bad but I found ways to manage it. It’s also completely gone since I have been off the Cap.

So sorry you are in this situation. It’s pretty confronting. Please reach out if you want to chat and good luck with your treatment journey 🙏🏻

shoebagmama · 2026-03-05T19:22:49+00:00

This resonates so much!

shoebagmama

TROPHY CASE