Stage 3, likelihood of recurrence after resection & chemotherapy

[horizon]

I think it's easier for me to update this thread...at least all of our story and worries are kept together and in one place! New people will also be able to read through and see the journey in its entirety!

I agree and was hoping you'd say that!

[horizon]

Small update:

First Oxi IV infusion is on Tues 15th Dec. Then the Xeloda (Capecitabine) tablets will start that evening and finish on the morning of Day 15 (day 1 of the 7 day break).

We've got prepared, he has a big warm coat, scarf and gloves at the ready. We've also roughly worked out the dates of all 8 rounds (assuming all goes to plan and on time etc) so we can visualise and come to terms with it all I guess. Also helped us to know when we can have sperm analysis and start trying to conceive naturally.

He is feeling okay about it all, obviously not looking forward to it but knows its for the best and just wants to get started. I'm very up & down, I'm also keen to just get it started so we're on the start of the journey and one step closer to the end of treatment.

But I'm also ridiculously anxious about what side effects he may get, how bad they'll be, how and if I can help, then whether the chemo will do what it's meant to and stop it coming back. I know no-one knows what will happen in the future, I hope that over time the worry and anxiety will become manageable. Biggest fear right now is that he'll get through a few months of the chemo and then have a scan that shows mets and upgrades it to stage 4 and the treatment becomes longer and means we can start a family. Not a good day, I'll probably be okay tomorrow aha.

I'm glad he's getting started soon. Once I got my first infusion under my belt it was a lot easier for me mentally.

[Green Tea]

If you have time this week you could stop by Boots-the-Chemist and pick up some items of first necessity for CAPOX side-effects mitigation. For example:
Digital thermometer, supply of Imodium (loperamide) for diarrhea, Paracetamol (acetominophen), Nexium (epomeprazole) for heartburn, Fybogel (psyllium) for fiber, isotonic drinks (e.g., sports drinks or oral rehydration salt sachets: Dioralyte) for electrolyte replenishment, alcohol-free mouthwash (Corsodyl), very soft toothbrush, a manicure/pedicure kit, good quality shower gel, good quality medicated shampoo, a moisturising cream, adult diaper rash cream (Anusol), disposable wet-wipes, and extra-large, soft athletic socks (non-binding without strong elastic).

[I_will_fight]

Small update:
But I'm also ridiculously anxious about what side effects he may get, how bad they'll be, how and if I can help, then whether the chemo will do what it's meant to and stop it coming back. I know no-one knows what will happen in the future, I hope that over time the worry and anxiety will become manageable. Biggest fear right now is that he'll get through a few months of the chemo and then have a scan that shows mets and upgrades it to stage 4 and the treatment becomes longer and means we can start a family. Not a good day, I'll probably be okay tomorrow aha.

Have you had a look at icing?

Some people are doing it and they report lessened side effects including less cold sensitivity.

It consists on applying cold to hands, feet and mouth/tongue during the Intravenous Oxi infusion (ideally starting 10 minutes before and withdrawing the cold 10 minutes after infusion finishes)

It works by constricting your blood vessels and thus limiting the amount of oxaliplatin that reaches these parts of the body and hopefully mitigating some of the neurotoxicity from the oxaliplatin

https://fightcolorectalcancer.org/blog/ ... nsitivity/

https://www.cancertodaymag.org/Pages/ca ... n-Ice.aspx

https://www.healio.com/news/hematology- ... l-symptoms

Good luck.

[LivinginHope]

UPDATE!!

1st IV infusion of Oxaliplatin this week.

I made sure he went in prepped with a big coat, scarf, gloves, big 2l bottle of water, some snacks etc. I also made sure I had a hot water bottle in the car when I picked him up just in case he was extra sensitive to the cold.

In short...he was (& is) absolutely fine.

As it was the 1st infusion he was there for HOURS. (was meant to be a 3hr appt)...Ended up being there 9am-1:45pm...and he came home extra hungry bless him! They did an ECG before starting and ran IV anti-sickness and a steroid. He had drank SO much water during the infusion (2.5l) and one of the nurses accidentally left a bag of fluid running too so he was up and down to the loo loads! And then they had to run the infusion for an extra hour because it hadn't all gone through (due to the mistake!). Then they kept him for 30mins after it had finished just to make sure he was okay. But he was totally fine.

He had his scarf over his mouth and round his neck to prevent any spasms but he was fine. He's had very VERY MINOR tingling after 15 secs if he picks up something cold but it stops instantly when he puts it down. He's had no nausea/diarrhoea/constipation/tiredness.

Overall feeling very lucky so far, we appreciate the effects are cumulative and are likely to get worse as he has more infusions but we're very grateful he's had such minor effects this round. He's started taking the Capacetabine, so far no effects from those but it's early days.

[horizon]

UPDATE!!

1st IV infusion of Oxaliplatin this week.

I made sure he went in prepped with a big coat, scarf, gloves, big 2l bottle of water, some snacks etc. I also made sure I had a hot water bottle in the car when I picked him up just in case he was extra sensitive to the cold.

In short...he was (& is) absolutely fine.

As it was the 1st infusion he was there for HOURS. (was meant to be a 3hr appt)...Ended up being there 9am-1:45pm...and he came home extra hungry bless him! They did an ECG before starting and ran IV anti-sickness and a steroid. He had drank SO much water during the infusion (2.5l) and one of the nurses accidentally left a bag of fluid running too so he was up and down to the loo loads! And then they had to run the infusion for an extra hour because it hadn't all gone through (due to the mistake!). Then they kept him for 30mins after it had finished just to make sure he was okay. But he was totally fine.

He had his scarf over his mouth and round his neck to prevent any spasms but he was fine. He's had very VERY MINOR tingling after 15 secs if he picks up something cold but it stops instantly when he puts it down. He's had no nausea/diarrhoea/constipation/tiredness.

Overall feeling very lucky so far, we appreciate the effects are cumulative and are likely to get worse as he has more infusions but we're very grateful he's had such minor effects this round. He's started taking the Capacetabine, so far no effects from those but it's early days.

Great! Getting that first one done is huge because it's not a giant unknown and now you can focus on getting through them. It can actually be boring as hell when you're there doing it. Make sure he continue to drink plenty of water after he goes home to make sure it's flushed out of his system.

[Mtipte2]

Help! My mum has been clean so far after being 3b rectum removed and total colectomy. Now she is bleeding when peeing (her cervix I guess). Has anyone experienced something like this? Especially 3 b or c survivors? Her ct scans and cea are ok, that is what frightens me. Onc appointment still on Monday. ;(

[I_will_fight]

Husband has been told the the surgery was curative... The cancer is all out on the face of it. 5/21 nodes removed were affected

Currently awaiting the adjuvant chemo plan which is obviously designed to kill any stray cancer cells that managed to escape.

What are the chances of it coming back?? I know the first 1-2yrs are most critical in terms of recurrence and the likelihood reduces over time...but how many people on here have experienced recurrence (or not)??

So scared we're going to get through surgery, chemo and then find out that it's come back and it's much worse than this time

I think the most important step you can take is to support your husband and do whatever is possible to help him complete his chemo.

I think it is important to complete as many rounds of CAPOX as possible (out of the 8 that have been prescribed). Since Oxiloplatin is neurotoxic and tends to cause hand/foot/tonge neuropathy you may want to advise your husband to do a bit of research on the icing protocol during the infusions.

It apperas icing diminishes the damage in the small nerve endings and thus makes it more likely for the patient to tolerate the entire chemo course, thus improving the chances of catching any cancer cell left in the body after surgery.

Here are a couple of links

https://paltown.org/icing/#:~:text=Icin ... 20patients

https://fightcolorectalcancer.org/blog/ ... nsitivity/

Good luck!

[I_will_fight]

... we have a Macmillan nurse ...

If your husband has a Macmillan nurse, then he could ask the nurse if she could help get a copy of the surgery pathology report for him. She might know how to navigate the NHS bureaucracy and who to ask in order to get a release of that report.

The pathology report is the key document used by the Multidisciplinary Team in deciding which chemo regimen is best.

Plan your questions

"Appointments and other chances to speak with your healthcare team can be short. It is good to be prepared, and we have information to help you do that. It may help to write your questions before your appointment. Keep a notebook handy and write things as you think of them. Or you can order a free Macmillan Organiser.

You can make notes during appointments in a notebook or the Macmillan Organiser. This may help you to remember what is said. You can also get copies of any documents your doctor or healthcare team send to your GP. These might include information about your test results or treatment. Some healthcare professionals may be happy for you to record consultations using a dictaphone or smartphone. You should ask their permission first..."

https://www.macmillan.org.uk/cancer-information-and-support/treatment/preparing-for-treatment/talking-to-your-healthcare-team-about-treatment

Very true, important to know about MS/MMR status and possibility of Lynch, this is not just for your husband´s sake but also for family.

Good luck.

[horizon]

FYI, there are some tips that are helpful to also keep you as the caregiver safe.

https://www.cancer.org/treatment/treatm ... afety.html

[PainInTheAss]

Each stage has it's own general recurrence percentages.

You won't get a good gauge of that on this site because people usually come here who are just getting started or have had a recurrence.

Generally, 80 to 90% of people who are stage I, II, and III go through standard treatment and are cured. The vast majority of them never come on this site.

The one stage that is the greatest risk is stage IIIc. That's the stage I was. Online, you'll find statistics of people who are IIIc as low as 25% who go through standard treatment and are still cancer-free at 5 years. These stats include medicare patients whose family's decided not to treat their 80 or 90 year old loved one.

My oncologist showed me his cancer center's internal stats, and they were much higher. A IIIc had a 60% chance of being cancer-free at 5 years if they did the follow-up chemo, especially someone "young" (under 70). That's still pretty good odds. Most people are still cured.

For your own sanity and peace of mind, you should choose to believe he will be cured until you get definitive proof otherwise (a scan or test!!). I have had sharp pains, coughs, and all kinds of things that made me worry. My oncologist told me not to worry unless there is pain that wakes me up. I have stuck with that and try not to worry about every little pain and cough.

It will be 8 years this summer since my diagnosis and I'm still cancer-free. I originally had a lymph node light up near my sacrum that they could not remove during surgery. I also had my tumor break all the way through the wall. Both very bad signs. I was much happier once I decided to believe I would be cured. The odds are in your favor, so just go with that until a test or scan tells you something else.

[polluxx]

I really appreciate the statistic from your own doctor’s cancer group. I was also staged at 3c and I interpreted what I read online to mean that only 25% of 3c patients were even alive in 5 years. Either way, I like 60% much better.

When I finished Chemo, my oncologist wanted me to get my port taken out. I decided to keep it for 2 years anyway. She said, ”I really don’t think you will need it again.” That surprised me, but also made me feel a little more hopeful. It is better to try to live like you expect to go on living, but I find that hard to do sometimes. My oncologist reminded me that I almost died twice then had 6 months of Chemo, so it is just going to take longer for my emotional healing to catch up to my physical healing.

[horizon]

I have had sharp pains, coughs, and all kinds of things that made me worry. My oncologist told me not to worry unless there is pain that wakes me up. I have stuck with that and try not to worry about every little pain and cough.

That's something that really sucks about our situation. Something such as a cough that I could have easily brushed off before can potentially cause a ton of worry. I try to do the same.

[LivinginHope]

Hi all,

Thank you for your posts - I have read them but things have all been a bit busy over Christmas and New Year! Hope you're all well and had a nice restful festive period!

My husband had his 2nd Oxaliplatin infusion this week. So far so good again, no major side effects, no neuropathy, no nausea etc. Still feeling very lucky as we know how much others have suffered.

In other news, his Oncologist has been part of research seminars over the past few weeks where they have pulled apart studies into the comparison of 3m v 6m of CAPOX adjuvant chemotherapy for Stage 3. She was really pleased to be able to recommend (with my husbanda agreement of course) that his regime be reduced to 3m instead of 6m as the evidence they looked at in greater detail showed that for cases like his, 3m is just as good as 6m!
So he will be finished with chemo by early March

He's very relieved and pleased, whilst I share those feelings, I'm also a bit apprehensive because at the start we were told 6m was better than 3m but I do trust that the oncologist has explored every detail and wouldn't recommend 3m if she didn't think it was genuinely as safe.

So that's where we're at! Hope everyone else is doing okay!

[horizon]

Hi all,

Thank you for your posts - I have read them but things have all been a bit busy over Christmas and New Year! Hope you're all well and had a nice restful festive period!

My husband had his 2nd Oxaliplatin infusion this week. So far so good again, no major side effects, no neuropathy, no nausea etc. Still feeling very lucky as we know how much others have suffered.

In other news, his Oncologist has been part of research seminars over the past few weeks where they have pulled apart studies into the comparison of 3m v 6m of CAPOX adjuvant chemotherapy for Stage 3. She was really pleased to be able to recommend (with my husbanda agreement of course) that his regime be reduced to 3m instead of 6m as the evidence they looked at in greater detail showed that for cases like his, 3m is just as good as 6m!
So he will be finished with chemo by early March

He's very relieved and pleased, whilst I share those feelings, I'm also a bit apprehensive because at the start we were told 6m was better than 3m but I do trust that the oncologist has explored every detail and wouldn't recommend 3m if she didn't think it was genuinely as safe.

So that's where we're at! Hope everyone else is doing okay!

Wow, that's really interesting. I was so over it at six months. Now he has something closer to look forward to!