Rectal cancer stage IV

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Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Mon Feb 12, 2018 2:05 pm

Hi Claudia,
How is it at home? Managing all the new tubs, bags, eating and staying hydrated? Thinking about you from half a world away.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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Atoq
Posts: 317
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Mon Feb 12, 2018 2:17 pm

Hi! Thanks for asking, I am fine, eating more ore less everything (I avoid meat and diary products) without problems, but I try to chew very well.

The new stomy is a bit more demanding because needs to be emptied more often, but compared to the colostomy I had before is not making noises :D

I drink a lot of ginger tea to stay hydrated and I have started training strength again, I of course avoid sit ups and heavy lifting. I also go for long walks with the dogs but it is quite windy and cold.

Tomorrow I will have a PET scan total body which I did not expect, I guess to evaluate my lung node.

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Wed Feb 14, 2018 12:41 pm

Hope your scan went well today. I am so impressed by your attitude. My friends are bringing me food, lots of casseroles, soups. I am going to avoid the cheese as well, it makes things slow down.

There is a private company here that does the genetic testing, about 400 dollars. I can't decide about doing it. Would I do anything differently?
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

User avatar
Atoq
Posts: 317
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Feb 14, 2018 1:29 pm

Hi! The scan went fine but I don't know when I will get the results, it looks like I am soon having surgery for the lung and I hope this time it will be endoscopic. I guess I will be more informed after the meeting with the surgeon on Friday. I would do the DNA testing mostly for my kids, but it is not urgent.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Wed Feb 14, 2018 1:33 pm

Caat55 wrote:Hope your scan went well today. I am so impressed by your attitude. My friends are bringing me food, lots of casseroles, soups. I am going to avoid the cheese as well, it makes things slow down.

There is a private company here that does the genetic testing, about 400 dollars. I can't decide about doing it. Would I do anything differently?
Susan

I went to see the genetic counselor at my cancer center and was told because no history insurance would not pay for testing. However, they recommended I do the color genetic testing that you can do online. They would do it all from their office or I could do myself online, and have all results sent to them. It's about $250 and they test for many different markers. Might be worth looking into.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Wed Feb 14, 2018 2:29 pm

Atoq wrote:Hi! The scan went fine but I don't know when I will get the results, it looks like I am soon having surgery for the lung and I hope this time it will be endoscopic. I guess I will be more informed after the meeting with the surgeon on Friday. I would do the DNA testing mostly for my kids, but it is not urgent.

Hi Claudia,

I hope that your lung surgery is endoscopic and resolves the problem. You are inspiring and I wish you much success dealing with all of these treatments and surgeries. I had DNA testing last year and they found nothing, tested for 500 mutations. I asked the doctor if that was good or bad news. He said it was good for using EGFR therapy but not good for other immunotherapies. I am MSS which means Opdivo and Keytruda are not effective from what I have read.

I shared the DNA results with my kids but still encourage them to go for early screening when they get older.

Take good care!
Shana

Claudia
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Wed Feb 14, 2018 3:13 pm

https://www.color.com/product/hereditar ... netic-test
$249 for Cancer genetics, $349 for everything.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

User avatar
Atoq
Posts: 317
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Feb 14, 2018 4:04 pm

Thanks Shana! I hope you can also have surgery soon.

Once I wanted to do the genetic test of 23and me but, being in Norway, I could only get information about genealogy and not health. I wonder if it is possible to do this multiple test for genetic disposition now.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Wed Feb 14, 2018 4:20 pm

Atoq wrote:Thanks Shana! I hope you can also have surgery soon.

Once I wanted to do the genetic test of 23and me but, being in Norway, I could only get information about genealogy and not health. I wonder if it is possible to do this multiple test for genetic disposition now.

Claudia


I don't know much about the genetic tests that one can send in. I had mine done at UCSF medical center in San Francisco after I had emergency surgery for my blockage. The insurance approved it so I don't know what criteria was involved. I had a very bad reaction to Folfox which gave me colitis and contributed to the inflammation causing the blockage. I know that they recommended genetic testing to make sure that I didn't carry any genes that would react negatively with Irinotecan. Ironically it didn't even show that I carried the gene which reacted poorly to Folfox... go figure!

I am resigned to living with the colostomy if resection isn't possible but I'd rather have the tumor removed regardless. Cancer free with a colostomy is acceptable, it's all about survival with quality of life.

Thank you for the good wishes :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

User avatar
Atoq
Posts: 317
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Feb 14, 2018 5:04 pm

Shana wrote:
I am resigned to living with the colostomy if resection isn't possible but I'd rather have the tumor removed regardless. Cancer free with a colostomy is acceptable, it's all about survival with quality of life.

Thank you for the good wishes :)


I would also sign up for that :D I had the colostomy for two months and at the end I totally forgot about it. And tou can even irrigate it and get more control over it.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Wed Feb 14, 2018 5:35 pm

The chemo I'm on keeps my colostomy quite active at times so it's hard to ignore but on the bright side I can sleep through the night even with all that activity going on! I never have to worry about finding a bathroom "right now" but of course it would be great to be cancer and "bag" free too!

Even though my tumor is at the splenic juncture on left side, due to the blockage I have a transverse colostomy. This is on the right side so irrigation doesn't work for me, not enough colon to make it worthwhile unfortunately.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

User avatar
Atoq
Posts: 317
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Feb 16, 2018 11:18 am

Today I talked to a surgeon (it is almost never the same), I did not get a copy of the pathology report, because I have to make an official request by snail mail for that. But he told me that I had 10 mm clear margins, 11 of 11 clean lynphonodes and downstaging from T4 to T3a (no tumor invasion in peritoneum or uterus). So no mop up chemo according to Norwegian standards.

But the PET CT scan confirmed cancer in the lung and I have to do a needle biopsy to see if it is metastasis of colon cancer or a new lung cancer, because the treatment is different. So I am celebrating the good news and then make me ready for a new round :|

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Fri Feb 16, 2018 11:29 am

Congrats Claudia on the good news. If you don't have to do mop chemo, when do you get the ileo reversed? Did they give you any information about what's going on with your bladder? I am full of questions. My doctor yesterday was telling us about the differences in treatment in US and Europe, a guess this is one of them.
When is the biopsy scheduled? It's hurry and wait isn't it?

Susan

BTW where in Norway are you? My husband used to live there and we have visited.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

User avatar
Atoq
Posts: 317
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Feb 16, 2018 11:50 am

Caat55 wrote:Congrats Claudia on the good news. If you don't have to do mop chemo, when do you get the ileo reversed? Did they give you any information about what's going on with your bladder? I am full of questions. My doctor yesterday was telling us about the differences in treatment in US and Europe, a guess this is one of them.
When is the biopsy scheduled? It's hurry and wait isn't it?

Susan

BTW where in Norway are you? My husband used to live there and we have visited.


Thanks! The ileo reversal was planned in two months, but will be after the lung operation, I might have to do mop up chemo after that as well, it will depend on the type of tumor or resection margins I guess, but the gastroenterologist said they will need a new meeting with the oncologist to decide that.

The bladder is going better, but I still use a catheter before to go to bed, because the bladder is not totally emptied. The control for that is scheduled in April...

I don’t know when the lung biopsy will be scheduled. I hope soon, but I guess I have to wait for full recovery before a new surgery.

I live in Trondheim, but actually I am Italian :D

Best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Fri Feb 16, 2018 12:04 pm

Everyone is cautioning about holding off on the reversal until well past mop up chemo due to side effects. If you have to do chemo for the lung maybe wait. The bag I think is easier to manage then a sore bum. The oncologist said the chemo is hard on body, and that is better to have colon rest than work so hard .

Trondheim is beautiful. We stayed there twice.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds


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