It's come back - :(

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Jess83
Posts: 34
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Fri Jan 29, 2021 6:10 pm

DarknessEmbraced wrote:I'm glad your surgery went well. :) I hope your chemo goes well.*hugs*

Thank you :D
2012 - Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Jan 2021 - Adrenal gland removed
Started 3 rounds of FOLFOX

Jess83
Posts: 34
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Fri Jan 29, 2021 6:55 pm

Markdale wrote:Hi,
I’m being treated publicly through the Monash health, had my surgery at the Dandenong hospital. I was really happy with the outcome of the operation the surgeon was great.
This will be the last planned round before I have ct to see the if anything else has popped up. I’m hoping the the chemo is working against the cancer as my potential met had disappeared by round 3.
Yeah warm water is hard to drink, I was drinking a lot green teas to keep the fluid levels up. Also ondansetron and metoclopramide I take regularly even if I’m not that nauseous seems to stop the nausea getting out of control and it’s easier than chasing the nausea.


That’s great that it might be the last round! Fingers crossed for a clean scan for you. Will they do a PET scan or just CT?
I only ask as they missed my secondary on my initial CAT scan and it was picked up on my PET.
I’ve just started drinking camomile tea, hoping it will also tame my poor old bowel. It did not like the chemo by day 6!!!!

I’m hoping the will do a scan before I start my rad/chemo. Just want that reassurance that there is nothing else there lurking.

I’m being treated in Geelong at the Epworth. So far they have been awesome. I’m really happy with my team of doctors.

Have you been working whilst you’ve been receiving chemo? I am hoping to work through this round and the chemo/radiation stuff.
2012 - Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Jan 2021 - Adrenal gland removed
Started 3 rounds of FOLFOX

Markdale
Posts: 17
Joined: Wed Dec 02, 2020 4:45 pm

Re: It's come back - :(

Postby Markdale » Fri Jan 29, 2021 10:52 pm

Jess83 wrote:
Markdale wrote:Hi,
I’m being treated publicly through the Monash health, had my surgery at the Dandenong hospital. I was really happy with the outcome of the operation the surgeon was great.
This will be the last planned round before I have ct to see the if anything else has popped up. I’m hoping the the chemo is working against the cancer as my potential met had disappeared by round 3.
Yeah warm water is hard to drink, I was drinking a lot green teas to keep the fluid levels up. Also ondansetron and metoclopramide I take regularly even if I’m not that nauseous seems to stop the nausea getting out of control and it’s easier than chasing the nausea.


That’s great that it might be the last round! Fingers crossed for a clean scan for you. Will they do a PET scan or just CT?
I only ask as they missed my secondary on my initial CAT scan and it was picked up on my PET.
I’ve just started drinking camomile tea, hoping it will also tame my poor old bowel. It did not like the chemo by day 6!!!!

I’m hoping the will do a scan before I start my rad/chemo. Just want that reassurance that there is nothing else there lurking.

I’m being treated in Geelong at the Epworth. So far they have been awesome. I’m really happy with my team of doctors.

Have you been working whilst you’ve been receiving chemo? I am hoping to work through this round and the chemo/radiation stuff.

I believe it’s just a ct. I had a potential met In right lower lung that had disappeared by the 3 rd round of chemo so I’m hoping the chemo is working really well against the cancer cells.
I’ve been able to continue working full time but I take the 3 days off I’m hooked up to the bottle off, I’ve had to take some days off. I thought if I stopped working all I’d think about is the cancer and I want to keep living as normally as possible, I’d also run out of cash. I havnt had severe side effect so I still look fairly normal which has helped with work and the whole psychology part of the sickness. I never received the chemo radiation so I don’t know how that will effect.
I’ve read of a few people here that had the metastasis cut out before the main tumour do you know why that is? I’m just curious.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

Jess83
Posts: 34
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Sat Jan 30, 2021 3:34 am

I think because it was a single met and they could remove it by keyhole surgery is why they took it out first. Originally we were thinking I wouldn’t be able to have the adrenal surgery until March, so was going to start FOLFOX and then have it removed when I have my resection. But the specialist was able to squeeze me in and because it was only going to delay the chemo by two weeks- we went for it. I’m so glad it’s out!!!
I’m pretty lucky that I only work 3 days a week so I’m hoping I can juggle it all along with parenting. My first round went well so fingers crossed it keeps that way. I love going to work, it helps keep it all as normal as possible.
2012 - Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Jan 2021 - Adrenal gland removed
Started 3 rounds of FOLFOX

Markdale
Posts: 17
Joined: Wed Dec 02, 2020 4:45 pm

Re: It's come back - :(

Postby Markdale » Fri Feb 19, 2021 7:55 pm

Jess83 wrote:I think because it was a single met and they could remove it by keyhole surgery is why they took it out first. Originally we were thinking I wouldn’t be able to have the adrenal surgery until March, so was going to start FOLFOX and then have it removed when I have my resection. But the specialist was able to squeeze me in and because it was only going to delay the chemo by two weeks- we went for it. I’m so glad it’s out!!!
I’m pretty lucky that I only work 3 days a week so I’m hoping I can juggle it all along with parenting. My first round went well so fingers crossed it keeps that way. I love going to work, it helps keep it all as normal as possible.

Hey Jess,
How is your treatment going?
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

Jess83
Posts: 34
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Sat Feb 20, 2021 5:08 pm

Hi, it’s going ok. I’m just getting over my round 3 infusion. It’s really knocked me this time. The nausea and fatigue are relentless this time round, but I’m now day 6 so hopefully will start turning the corner.
I had my planning scan for my radiation/chemo on Friday so it looks like I’ll be starting that in March.
Hope you are going well :D
2012 - Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Jan 2021 - Adrenal gland removed
Started 3 rounds of FOLFOX

I_will_fight
Posts: 62
Joined: Mon Jun 29, 2020 3:38 pm

Re: It's come back - :(

Postby I_will_fight » Mon Feb 22, 2021 2:05 am

Jess83 wrote:Hi, it’s going ok. I’m just getting over my round 3 infusion. It’s really knocked me this time. The nausea and fatigue are relentless this time round, but I’m now day 6 so hopefully will start turning the corner.
I had my planning scan for my radiation/chemo on Friday so it looks like I’ll be starting that in March.
Hope you are going well :D


If you are getting Oxaliplatin it may be worth for you to take a look at icing hands, feet and mouth. Many people tried this and most of them experienced diminished side effects.

JC

EDIT: re-reading I think you already completed your chemo course, so my advice to try icing was too late anyway.
In any case, congratulations on completing your chemo, please keep us posted.
46 yo male Spain
06/20 - 6cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, 13cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy
02/21 - MRI liver lesion is nonspecific, stable.

NoVA21
Posts: 5
Joined: Thu Feb 25, 2021 7:15 pm

Re: It's come back - :(

Postby NoVA21 » Sun Feb 28, 2021 8:48 am

I am so sorry to hear this.
I do second one of the previous posts here that medicine has advanced tremendously since 2010.
I was prescribed 12 rounds of Folfox for my colon cancer. It was tough for me personally. But I had a friend who didn’t even feel any side effects. Thus, it is different from one person to another.

My experience was rough that I could not even finish the 12-round regiment. The nausea, tingling and constipation were my main issues. Get ahead of the symptoms with your anti nausea medications. I was given Zofran and Ativan. I was trying to be tough and not taking any of it until it was too late. I paid the price with the symptoms.

It has been almost 6 years and I still have tingling in my feet. My current oncologist (I switched doctors), said that after round 7 or 8 he would have switched me to be without Oxaliplatin as that is what’s causing the tingling if he was my original onco.

The side effect is cumulative. Round 1, 2, etc. I was able to get over the effects in 1-2 days. It took a week to get over round 8-9. By round 11, I could not feel the tips of my fingers and that was the reason I didn’t finish.

Again, this is what I experienced with Folfox and everybody is different reacting to it.

I hope you are coping the effects well and more importantly to have a great NED result at the end of it.
Dx Jan 2015
Colon Resection Feb 2015 stage 3B
Folfox started Mar 2015
Could only finish 11 out of 12 rounds
Mar 2016 dx mets on both lungs - officially stage 4
Apr 2016 double lung resection
By the grace of God, am still clear today.


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