Surviving radiation for rectal cancer

Please feel free to read, share your thoughts, your stories and connect with others!
mozart13
Posts: 147
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Surviving radiation for rectal cancer

Postby mozart13 » Sat Nov 10, 2018 12:58 pm

I had 25 sessions of chemo/rad(xeloda/radiation), cancer completelly erased. Almost 2 years ago, still negative.
Felt tired after those 25 sessions, but overall not bad. Pushed to have folfox after, my surgeon was ok with that. He thought that 10 rounds was a bit over killing. Managed to get 8 in, plus 2 xeloda rounds.
Neuropathy from oxylaplatin setlled inn, and ain't going any where, but it's small price to pay. Didn't need surgery, am on close observation.
Sometimes I get burning sensation where radiation was, my surgeon says that radiation works for years.

Peak of radiation is about 16,17 weeks from the start of radiation, probably the best time to start with chemo, folfox (TNT-new trend), as oxylaplatin is very potent, specially when combined with radiation.


There is another tread on this forum with a lot's of useful links and info:
viewtopic.php?t=53498
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Nov 11, 2018 2:59 am

mozart13 wrote:I had 25 sessions of chemo/rad(xeloda/radiation), cancer completelly erased. Almost 2 years ago, still negative.
Felt tired after those 25 sessions, but overall not bad. Pushed to have folfox after, my surgeon was ok with that. He thought that 10 rounds was a bit over killing. Managed to get 8 in, plus 2 xeloda rounds.
Neuropathy from oxylaplatin setlled inn, and ain't going any where, but it's small price to pay. Didn't need surgery, am on close observation.
Sometimes I get burning sensation where radiation was, my surgeon says that radiation works for years.

Peak of radiation is about 16,17 weeks from the start of radiation, probably the best time to start with chemo, folfox (TNT-new trend), as oxylaplatin is very potent, specially when combined with radiation.
Hi thanks so much .. could you tell it had worked after the 25 weeks ? Or did you have no idea ? That's interesting having chemo without surgery, I thought if they put you on "watch and wait" they didnt give chemo ? Was there a reason ? Did you have bad side effects ? Xxxx Annie xxx


There is another tread on this forum with a lot's of useful links and info:
viewtopic.php?t=53498
Eleda wrote:I'll do that no problem Anne,,,it was 2.5/3cm above AV so really really low, apparently TATME is mainly used for men ( narrow pelvis, or grossly obese) but yes as u said becoming very popular,,
I'm fact I had chosen against this surgery with the other surgon but in the end had it with my original one,,,,, I had quite a bit removed because I also had a polop at 15cm and 6 effected lymphs, so my complete misseorectal envelope was removed this way
So it can be done
Adele X

mozart13
Posts: 147
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Surviving radiation for rectal cancer

Postby mozart13 » Sun Nov 11, 2018 1:26 pm

Hi Annie!
W&W approach is changing.
Used to be only chemo/rad, risk was high, one doesn’t know if any microcell is left in the body, or not. That extra chemo is to wipe out those questionable microcells.

California was most advaneced, they have been doing this kind of approach for more than 10 years. Originally started in Brazil, so call Habr-Gamma, it has evolved since than.
Memorial sloan hospital from NY is lead hospital in big study when it comes to that kind of approach:
https://www.mskcc.org/clinical-updates/ ... alResearch

They call it Total neadjuvent therapy. Even people that don’t have complete clinical response and need surgery benefit from this kind of approach, as is very often dificullt to start and complete chemo right after surgery.

I did know that my cancer is gone after 25 sessions of chemo/rad,they call it complete clinical response. It was my choice to have extra chemo( folfox) after, would do it again regardless of symptoms.
I did a lot’s of research on my own.

Always check with your surgeon and oncologist what is best approch for you personally, at the end they are professionals.
Good luck to you!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Nov 11, 2018 1:37 pm

Sorry Anne, I missed Ur reply,,, IIf u saw me also
I LOOK THE PICTURE OF HEALTH LOL
If I knew how to upload a picture I would lol
I know it seems weird that the symptoms begun near end of radiation, but have no explanation as to why,,, after they did disappear,
When are you due to have Ur sigmoid????
I remember the night before mine feeling sick with worry that it didn't shrink,,,,,,
I did everything possible to help Inc ,,,
I had VIT C INFUSIONS
CANABIS OIL etc
U have done what u can, NOW it's only wait to see results
Finger's crossed it's enough
Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

User avatar
susie0915
Posts: 904
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surviving radiation for rectal cancer

Postby susie0915 » Sun Nov 11, 2018 2:30 pm

mozart13 wrote:Hi Annie!
W&W approach is changing.
Used to be only chemo/rad, risk was high, one doesn’t know if any microcell is left in the body, or not. That extra chemo is to wipe out those questionable microcells.

California was most advaneced, they have been doing this kind of approach for more than 10 years. Originally started in Brazil, so call Habr-Gamma, it has evolved since than.
Memorial sloan hospital from NY is lead hospital in big study when it comes to that kind of approach:
https://www.mskcc.org/clinical-updates/ ... alResearch

They call it Total neadjuvent therapy. Even people that don’t have complete clinical response and need surgery benefit from this kind of approach, as is very often dificullt to start and complete chemo right after surgery.

I did know that my cancer is gone after 25 sessions of chemo/rad,they call it complete clinical response. It was my choice to have extra chemo( folfox) after, would do it again regardless of symptoms.
I did a lot’s of research on my own.

Always check with your surgeon and oncologist what is best approch for you personally, at the end they are professionals.
Good luck to you!

I was told all that was left after chemo/radiation was scar tissue, and a pet scan showed no cancer. I was not offered watch and wait, but I wish I was even though after surgery the pathology showed minimal residual cancer cells. Is there any way without surgery they can know for sure there are no cancer cells left, or is this what doing additional chemo is suppose to address? I would've loved avoiding surgery. Even though now it's been three years and I am doing pretty well, the surgery does affect your digestive system, especially when most of the rectum is gone.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

mozart13
Posts: 147
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Surviving radiation for rectal cancer

Postby mozart13 » Sun Nov 11, 2018 3:39 pm

Hi Susie, I don't think there is any test at present time that is able to pick up micro cells. It is risky, but every thing is risky.
Additional chemo is suppose to address any distant or local micro cells.
Specially if cancer already responded to initial chemo/rad, there is big chance that disease will be erased.
But at present time nothing can replace surgery, is still considered the king.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Tue Nov 20, 2018 1:59 pm

Eleda wrote:Sorry Anne, I missed Ur reply,,, IIf u saw me also
I LOOK THE PICTURE OF HEALTH LOL
If I knew how to upload a picture I would lol
I know it seems weird that the symptoms begun near end of radiation, but have no explanation as to why,,, after they did disappear,
When are you due to have Ur sigmoid????
I remember the night before mine feeling sick with worry that it didn't shrink,,,,,,
I did everything possible to help Inc ,,,
I had VIT C INFUSIONS
CANABIS OIL etc
U have done what u can, NOW it's only wait to see results
Finger's crossed it's enough
Adele


Hey Adele do you get a phone call or appointment after your scans after radio ? !! This week !! Aargh wish me luck everyone ! Is it the oncologist that see you after scsns or consultant surgeon ? Did you have sigmoidoscopy after scans Adele ? Thanks again., hope you ok xxx

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Tue Nov 20, 2018 2:20 pm

Hi Anne,
I had a sigmoid after my radiation,, 8 weeks after if I remember correctly, because apparently would be too sore any earlier,,,, no scan or MRI at that stage,,,
Then organised surgery,,, was able to talk to the surgon during sigmoid so was good,,,

No waiting for results
( That kills me " the waiting" ) booked in the surgery that week!!!!

Going for gastro enema Tomorrow for leek check,,,
Again,,,,, slightly anxious, evan tho I'm sure id know if there was a leek,,,,
Back to surgon Dec 7th to book reversal

When is Ur next proceedure???
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Nov 21, 2018 5:50 am

Eleda wrote:Hi Anne,
I had a sigmoid after my radiation,, 8 weeks after if I remember correctly, because apparently would be too sore any earlier,,,, no scan or MRI at that stage,,,
Then organised surgery,,, was able to talk to the surgon during sigmoid so was good,,,

No waiting for results
( That kills me " the waiting" ) booked in the surgery that week!!!!

Going for gastro enema Tomorrow for leek check,,,
Again,,,,, slightly anxious, evan tho I'm sure id know if there was a leek,,,,
Back to surgon Dec 7th to book reversal

When is Ur next proceedure???
ADELE X


Hi Adele thanks for coming back .. I'm waiting for scans .. arrrgh before seeing consultant for next step .. why are they checking for leaks ? Is it just standard...? Before reversal.. good luck with it ! .. btw . do you remember exactly how low your tumour was ? Just that it's so good you avoided stoma with it being so low ? Thanks as ever for your help Adele xxxx Annie xxx

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed Nov 21, 2018 6:22 am

Yes it's standard practice here Anne before reversal to make sure everything is ok before he closes up..
Just out and all sealed ( TG)

My tumor was 2.5 to 3cm above anal verge and was 3cm in diameter
Reduced by 80% due to radiation, but still took pretty much all of my rectum and did a straight anastomosis with coloplasty( was the plan) I must clarify that with him on the 7th.
A sigmoid colonoscopy to me would benefit u better at this stage to see accuracy, or possibly both
I also had a DRE in his office before the Colo if I remember correctly!!!!!
Different doctor's differ,,,

How many weeks since it first radition???
Apparently 17 weeks later is pretty much perfect time for Colo to check on shrinking as won't go any dmalliAftrr that

Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Nov 21, 2018 7:01 am

Hi Adele
So pleased for you about no Leak. ! Reversal here you come hey ? Wow that was low - was it just as you go into rectum then ? Because it sounds very similar in size and position to mine yet they said before that there was risk of stoma if they had to operate as so low., so I am really interested in how you avoided it .. !! ? it is nearly 12 weeks since my radio finished and my diagnosis symptoms are still gone .. but I know that doesn't necessarily mean it is all gone .. aargh .. I think my appointment will be next week which will be 13 weeks after radio ? When was your sigmoid after radio? When do you think reversal will be for you? Thanks so much Xxx Annie xx

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed Nov 21, 2018 11:02 am

A Very skilled surgeon I think Anne,
yes just inside,,
He can feel it with his finger in an exam
( Great fun lol)
It s 17 weeks from beginning so u seem to be on track,!!!
We take a lot from the USA in relation to proceedure but then again
Apparently new protocol is now 3 months adjuvant chemo but a lot of Americans on here are still doing 4/6 months!!! Do u know the name of Ur surgon???
My sigmoid was 17 weeks after begining radio
Adele x
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Nov 22, 2018 5:54 am

Eleda wrote:A Very skilled surgeon I think Anne,
yes just inside,,
He can feel it with his finger in an exam
( Great fun lol)
It s 17 weeks from beginning so u seem to be on track,!!!
We take a lot from the USA in relation to proceedure but then again
Apparently new protocol is now 3 months adjuvant chemo but a lot of Americans on here are still doing 4/6 months!!! Do u know the name of Ur surgon???
My sigmoid was 17 weeks after begining radio
Adele x


Hi Adele
When is adjuvant chemo done ? Is that as well as capecitidne during radio ? The name of potential surgeon is Omer Aziz .. at The Christie Manchester xxx Annie xxx

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Thu Nov 22, 2018 6:19 am

It's the chemo after surgery Anne
I was on folfox( 5FU & Oxaliplatin) for 3 months,,,,
only Finnish last Tuesday,,,, I had 6 OXI and 85FU because of an allergic reaction innitally to OXI......
Looks like Ur in good hands Anne

https://www.iwantgreatcare.org/doctors/ ... ziz?page=2
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Nov 26, 2018 3:02 pm

Eleda wrote:It's the chemo after surgery Anne
I was on folfox( 5FU & Oxaliplatin) for 3 months,,,,
only Finnish last Tuesday,,,, I had 6 OXI and 85FU because of an allergic reaction innitally to OXI......
Looks like Ur in good hands Anne

https://www.iwantgreatcare.org/doctors/ ... ziz?page=2
ADELE X

Hi Adele, so I went to my consultant appointment to get my post radio results from CT and MRI and they were both clear.. no spread and no sign of tumour on MRI . !!!!!! What an appointment. Terrifying.. so now the consultant wants to do a biopsy to check if any sneaky cells left ? And then if there are discuss "non surgical and surgical" options whatever non surgical alternatives means !!! So I was amazed !! :shock: But what next ? A slight sigh of relief for 5 mins How do they see on MRI ? What does it show up as ? So confused but happy I have had such a good response !! Thank you so much you have been such a rock and help to me.. but what if the biopsy says something left ? Surely that would show up on MRI ? Xxx annie xxx


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: margiej, Rock_Robster and 52 guests