Stage 3, likelihood of recurrence after resection & chemotherapy

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boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby boxhill » Sat Nov 21, 2020 11:10 am

Well, I'll hop back on my hobbyhorse.

You and your H should IMHO do your best to become informed about the disease and potential treatment plans. Google is your friend, not your enemy, as long as you use it intelligently. When you find an article, look at the date it was published. If it is more than 2 years or so old, it may be very out of date. Consider the source. Do not read stuff from obvious quacks and people peddling miracle cures, claiming to have cured themselves with vitamins or whatever. Those people are preying on the fears of vulnerable people.

Looking up survival stats is the opposite of using it intelligently. As everyone will tell you, those stats are backward-looking, and do not reflect the treatments available NOW. I'll give you an example. There are plenty of old articles out there stating that the prognosis for people who are MSI is worse than that of those who are MSS. But that was before immunotherapy. Now, the small percentage of us who are MSI are the lucky ones.

I would also advise you to be more aggressive about collecting information about your husband's cancer from the doctors. Ask for a copy of the pathology report right away. Without the information it contains you can't prepare yourselves for discussing treatment.

Good luck going forward. It sounds like you H has an excellent chance of a cure.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sat Nov 21, 2020 11:49 am

ANDRETEXAS wrote:From my experience, I think the sooner a plan is established the better. When healed, I started chemo as soon as I could after surgery.



Totally agree, it seems easier to face when there is a plan! We assume that they will start chemo within 8wks post op so that time frame is already in our minds.
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sat Nov 21, 2020 11:54 am

horizon wrote:I was stage 3 and went through resection and chemo also. Every single time I looked up charts with any statistics (survival, recurrence, etc) it only accomplished one thing: causing me tremendous worry and anguish. I got to the point where I decided I was going to deal with anything bad that came up but stop trying to predict what would/wouldn't happen.

You also have to remember that a lot of the statistics can be skewed because so many CC patients are much older.

Sending good vibes to you both.


Thank you, totally sympathise - the stats create so much anxiety, even when they're pretty good I convince myself he'll fall into the worst case!
100%, that's so true, all stats and research papers are often about people older than my husband!
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

User avatar
horizon
Posts: 1570
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Sun Nov 22, 2020 9:28 am

LivinginHope wrote:Thank you, totally sympathise - the stats create so much anxiety, even when they're pretty good I convince myself he'll fall into the worst case!
100%, that's so true, all stats and research papers are often about people older than my husband!


One of the times I was feeling sorry for myself and commented on how everyone else in the waiting room looked like they could be my grandparents. A nurse pointed out to me that I was able to bounce back much better than them from surgery because of that fact. I never forgot that.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Sun Nov 22, 2020 10:29 am

horizon wrote:
LivinginHope wrote:Thank you, totally sympathise - the stats create so much anxiety, even when they're pretty good I convince myself he'll fall into the worst case!
100%, that's so true, all stats and research papers are often about people older than my husband!


One of the times I was feeling sorry for myself and commented on how everyone else in the waiting room looked like they could be my grandparents. A nurse pointed out to me that I was able to bounce back much better than them from surgery because of that fact. I never forgot that.


Honestly that's so true. In the UK, we have a Macmillan nurse (a cancer charity that provides specialist support to cancer patients and families, supports us through the process)... She has said that younger people often tolerate treatment (surgery and chemo) better than older people, so we are being positive.
Just impossible to know how things are going to go before Chemo starts :cry:
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

User avatar
Green Tea
Posts: 237
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby Green Tea » Mon Nov 23, 2020 12:26 am

LivinginHope wrote:... 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

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horizon
Posts: 1570
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Mon Nov 23, 2020 9:59 am

LivinginHope wrote:Honestly that's so true. In the UK, we have a Macmillan nurse (a cancer charity that provides specialist support to cancer patients and families, supports us through the process)... She has said that younger people often tolerate treatment (surgery and chemo) better than older people, so we are being positive.
Just impossible to know how things are going to go before Chemo starts :cry:


I was more scared of the chemo than I was of the surgery because it was such an unknown. Everyone reacts differently but I handled it pretty well. I had several frustrating side effects, but I was able to keep going to work and the gym (with breaks during infusion time of course). If he's debating whether or not to get a port I could dig up the thread where the forum talked me into one. I'm glad they did.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Mon Nov 23, 2020 10:27 am

horizon wrote:
LivinginHope wrote:Honestly that's so true. In the UK, we have a Macmillan nurse (a cancer charity that provides specialist support to cancer patients and families, supports us through the process)... She has said that younger people often tolerate treatment (surgery and chemo) better than older people, so we are being positive.
Just impossible to know how things are going to go before Chemo starts :cry:


I was more scared of the chemo than I was of the surgery because it was such an unknown. Everyone reacts differently but I handled it pretty well. I had several frustrating side effects, but I was able to keep going to work and the gym (with breaks during infusion time of course). If he's debating whether or not to get a port I could dig up the thread where the forum talked me into one. I'm glad they did.


Totally get that, we feel the same. Surgery is one thing but once it's done (in most cases and after recovery) it's done. Chemo is likely to be 6 months of unknowns :cry: and it won't end after 6m for us... As we'll then have to wait another 6m to see whether he's fertile or not. In 1 way I feel like the hard part (diagnosis & surgery) is done but then I remember we basically have 1yr of unknowns and it's so daunting and sad.
Thank you though, I'm hoping he'll handle it as you did. Then he can keep working (from home) and get back to the gym and have as much normality as possible.
Not sure what chemo he'll be having yet...would they recommend a port if he's on CAPOX... The infusion is for 2-3hrs every 3 wks. I understand FOLFOX has longer infusions? Thank you though!
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby boxhill » Mon Nov 23, 2020 11:16 am

I personally would recommend a port for ANY chemo regime, especially one that involves oxaliplatin. Apparently giving it by IV does a number on one's veins in several ways. Once the port is in you can just about forget about it. No pain, does not hamper movement or activities, etc. Which side to put it in is usually determined by which shoulder is most often crossed by the seatbelt, which depends on whether the patient is usually the driver and of course whether you drive on the left or the right. Although mine is on the left, because I usually drive, I have no discomfort at all when I'm the passenger.

ETA to correct: mine was on the right.
Last edited by boxhill on Mon Nov 23, 2020 10:21 pm, edited 1 time in total.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

User avatar
horizon
Posts: 1570
Joined: Tue Apr 12, 2011 10:10 pm

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby horizon » Mon Nov 23, 2020 12:54 pm

LivinginHope wrote:Totally get that, we feel the same. Surgery is one thing but once it's done (in most cases and after recovery) it's done. Chemo is likely to be 6 months of unknowns :cry: and it won't end after 6m for us... As we'll then have to wait another 6m to see whether he's fertile or not. In 1 way I feel like the hard part (diagnosis & surgery) is done but then I remember we basically have 1yr of unknowns and it's so daunting and sad.
Thank you though, I'm hoping he'll handle it as you did. Then he can keep working (from home) and get back to the gym and have as much normality as possible.
Not sure what chemo he'll be having yet...would they recommend a port if he's on CAPOX... The infusion is for 2-3hrs every 3 wks. I understand FOLFOX has longer infusions? Thank you though!


I had the choice between XELOX and FOLFOX. I went with XELOX. That was an infusion (several hours) of Oxi every three weeks. With FOLFOX you also have to wear a pump for a set amount of time and a port really helps with that.

The unknowns and waiting is awful and I really feel for you both. For the longest time it consumed all my thoughts. Things got much better for me and I hope they do for him also.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

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Green Tea
Posts: 237
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

FOLFOX vs. XELOX

Postby Green Tea » Mon Nov 23, 2020 11:24 pm

Here are the UK guidelines for FOLFOX and XELOX

(FOLFOX) Folinic acid, fluorouracil and oxaliplatin
https://about-cancer.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/folfox

(XELOX/CAPEOX) Capecitabine and oxaliplatin
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/oxaliplatin-capecitabine


Here are the UK consent forms for FOLFOX and XELOX

PATIENT AGREEMENT TO SYSTEMIC ANTI- CANCER THERAPY: Oxaliplatin- Fluorouracil (FOLFOX)
https://www.cancerresearchuk.org/sites/default/files/colorectal_oxaliplatin-fluorouracil_folfox_v1.pdf

PATIENT AGREEMENT TO SYSTEMIC ANTI- CANCER THERAPY: Oxaliplatin- Capecitabine (CAPOX)
https://www.cancerresearchuk.org/sites/default/files/colorectal_oxaliplatin-capecitabine_capox_v2.pdf

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Wed Nov 25, 2020 4:46 am

horizon wrote:
I had the choice between XELOX and FOLFOX. I went with XELOX. That was an infusion (several hours) of Oxi every three weeks. With FOLFOX you also have to wear a pump for a set amount of time and a port really helps with that.

The unknowns and waiting is awful and I really feel for you both. For the longest time it consumed all my thoughts. Things got much better for me and I hope they do for him also.


I think he would prefer XELOX, he's said he would find that easier to face in terms of trying to have some 'normality' (whatever that is aha) during his treatment.
Thank you, I've generally been okay between him coming home after surgery up until the past week. Now I just keep feeling so overwhelmed with worry. A few months ago we were planning our wedding, now I'm just praying we make it through this with as few side effects as possible and it doesn't come back :cry: the thought of losing him is unbearable.
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: FOLFOX vs. XELOX

Postby LivinginHope » Wed Nov 25, 2020 4:47 am

Green Tea wrote:Here are the UK guidelines for FOLFOX and XELOX

(FOLFOX) Folinic acid, fluorouracil and oxaliplatin
https://about-cancer.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/folfox

(XELOX/CAPEOX) Capecitabine and oxaliplatin
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/oxaliplatin-capecitabine


Here are the UK consent forms for FOLFOX and XELOX

PATIENT AGREEMENT TO SYSTEMIC ANTI- CANCER THERAPY: Oxaliplatin- Fluorouracil (FOLFOX)
https://www.cancerresearchuk.org/sites/default/files/colorectal_oxaliplatin-fluorouracil_folfox_v1.pdf

PATIENT AGREEMENT TO SYSTEMIC ANTI- CANCER THERAPY: Oxaliplatin- Capecitabine (CAPOX)
https://www.cancerresearchuk.org/sites/default/files/colorectal_oxaliplatin-capecitabine_capox_v2.pdf


Thank you! Helpful to see the side effects written like that.
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

LivinginHope
Posts: 19
Joined: Sat Oct 31, 2020 4:42 am

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby LivinginHope » Wed Nov 25, 2020 4:49 am

boxhill wrote:I personally would recommend a port for ANY chemo regime, especially one that involves oxaliplatin. Apparently giving it by IV does a number on one's veins in several ways. Once the port is in you can just about forget about it. No pain, does not hamper movement or activities, etc. Which side to put it in is usually determined by which shoulder is most often crossed by the seatbelt, which depends on whether the patient is usually the driver and of course whether you drive on the left or the right. Although mine is on the left, because I usually drive, I have no discomfort at all when I'm the passenger.

ETA to correct: mine was on the right.



Thank you for this. He hasn't had his oncology appt yet so we aren't sure what they will discuss/advise. Will raise this with him though.
Husband (36):
- 05/10/20 - Dx Rectal CA, 15cm (upper rectum)
- 21/10/20 - laproscopic Anterior Resection, 21 nodes removed
- 31/10/20 - Results: 5/21 tested positive, Adjuvant Chemo needed :cry: although surgery has removed the cancer (YAY! :D )
- 11/20 - Fertility Preservation Successful :)

- 01/12/20 - Oncology appt for chemo plan

User avatar
Green Tea
Posts: 237
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Stage 3, likelihood of recurrence after resection & chemotherapy

Postby Green Tea » Wed Nov 25, 2020 8:46 am

LivinginHope wrote:... He hasn't had his oncology appt yet so we aren't sure what they will discuss/advise....

Macmillan website wrote:"...Appointments and other chances to speak with your healthcare team can be short. It is good to be prepared..."

Thank you for updating your signature with the oncology appointment date. If your husband will in fact be talking to the oncologist on December 1, then that leaves 6 days for him to get prepared for the meeting. Several thoughts/questions come to mind:

- Is this going to be an in-person meeting, or will it be a meeting by telephone or video?
- Will both your husband and you be able to participate in the meeting?
- If the meeting is by telephone, will you be able to hear and follow your husband's converation with the oncologist?

- Since the meeting might be time-constrained, your husband should have all of his questions outlined, prioritized, and printed out on paper before the meeting so that the meeting can proceed efficiently and without delay.
- It would also help if you had a copy of his prioritized checklist so that you could check that he has covered all of the important points by the end of the meeting.

If your husband needs some ideas on what to cover in the meeting, I'm sure there are members here who could chime in with their suggestions.

Good luck!


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