Surviving radiation for rectal cancer

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Annie50
Posts: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Oct 18, 2018 4:17 pm

Hi I'm sure it will ! You have done so well ! I am at The Christie in Manchester a famous cancer centre . .. sorry but was yours just at the rectum entrance from the anal canal or higher. That is so interesting I hope I can track a good surgeon down ? !! Xxxxx thanks Annie

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Thu Oct 18, 2018 6:08 pm

It was ment to b LAR, but ended up being a TATME AND LAPAROSCOPY, so no external scars really and quick recovery too TBH,,, I was offered this surgery by a new upcoming surgon who worked n the UK and US but I had such comfidance in my surgeon , I politely declined,, lol
( He had been an understudy to my surgon at one time) but in the end I had that surgery by my surgon,

I had a tummy tuck 5 years previously, so when they went to put air n my stomach so they could see, it wouldn't blow up because of scar tissue due to necrosis,

So that was part of the reason,,, it was 10.5 hours,,, and I had an illeostomy after ( temporary)

I'm now waiting a phone appointment from him on the 24th to organise a gastrografin enema,,, all going well , I'll set up surgery for the new year,,,

I'm now discharged from oncologist as of last week with my 6th folfox on the 26th October

Had a clean scan last Tuesday
( Long may it last )

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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Fri Oct 19, 2018 12:24 am

Plumbing is pretty easy to manage except when it balloons up, I call it a jelly bean . Have a 3 year patient whose mom had a reversal, she is a great resource she Uses immodium to manage bowels, 8 a day. Never taken meds, been sick before this, guess I will learn. Scheduled barium enema.
S
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
CT NED 9/2018

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri Oct 19, 2018 6:39 am

I'm looking forward to trying to get back to somewhat normal, my surgon suggests I'll have more evacuation problems than incontinence, but that remains to b see after it's done, but that's easy sorted with a softer or mild laxative,,
Everyone has such different outcomes its impossible to predict,,,,
Think we've suffered enough lol so hopefully last lap will be a bit easier on us

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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Oct 21, 2018 11:13 am

Eleda wrote:It was ment to b LAR, but ended up being a TATME AND LAPAROSCOPY, so no external scars really and quick recovery too TBH,,, I was offered this surgery by a new upcoming surgon who worked n the UK and US but I had such comfidance in my surgeon , I politely declined,, lol
( He had been an understudy to my surgon at one time) but in the end I had that surgery by my surgon,

I had a tummy tuck 5 years previously, so when they went to put air n my stomach so they could see, it wouldn't blow up because of scar tissue due to necrosis,

So that was part of the reason,,, it was 10.5 hours,,, and I had an illeostomy after ( temporary)

I'm now waiting a phone appointment from him on the 24th to organise a gastrografin enema,,, all going well , I'll set up surgery for the new year,,,

I'm now discharged from oncologist as of last week with my 6th folfox on the 26th October

Had a clean scan last Tuesday
( Long may it last )

Adele X


That is so fantastic Adele !! A clear scan ! And long may it last indeed ! That sounds great that op as yours was very low wasn't it ? Do you know the name of that UK surgeon ? May need it ! Thank you so much for your help it has been invaluable to me xxxx love Annie xx

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Oct 21, 2018 4:12 pm

Anne my surgon was Irish,,,,
His understudy had trained in. The UK and USA,,,
I'm not fimilliar with UK surgeons but I've a friend n Dublin who's friends husband is a colorectal surgeon,, I can ask for a recommendation if u like??? What part are u in???
From my surgery u can see it's possible, so don't let them tell u otherwise,,,
By biggest fear was a permanent colostomy :mrgreen:
But in hinsite, I have an temp illeostomy, and it's not as bad as I thought so if it doesn't go well I can live with the bag no problem,,,,,
I'll look for the positive in it lol
My recovery was also minimal because or the transanal which for stage 3 they normally wouldn't do ( not sure why)
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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Oct 21, 2018 5:55 pm

Eleda wrote:Anne my surgon was Irish,,,,
His understudy had trained in. The UK and USA,,,
I'm not fimilliar with UK surgeons but I've a friend n Dublin who's friends husband is a colorectal surgeon,, I can ask for a recommendation if u like??? What part are u in???
From my surgery u can see it's possible, so don't let them tell u otherwise,,,
By biggest fear was a permanent colostomy :mrgreen:
But in hinsite, I have an temp illeostomy, and it's not as bad as I thought so if it doesn't go well I can live with the bag no problem,,,,,
I'll look for the positive in it lol
My recovery was also minimal because or the transanal which for stage 3 they normally wouldn't do ( not sure why)
Adele X


Hi Adele
I am at The Christie in Manchester so that area. But I would travel if it meant the right expertise for this. Can I ask how low yours was ? And it would be greatly appreciated if you could give some or ask for some recommendation of someone in that area. Like you I want to avoid a permanent colostomy if I can !!! I believe TATME is becoming much more relevant and used according to latest research ? Thank you again so much Annie xxxx

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Oct 22, 2018 2:39 am

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
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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Nov 01, 2018 8:59 am

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


Thanks so much Adele, just wondered if you had managed to get any names ? Xxx Annie xxx

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri Nov 02, 2018 4:17 pm

I'm waiting on a reply Anne, they were on holiday, so mauvy tomorrow!!! How r u doing???
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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Fri Nov 02, 2018 6:18 pm

Thanks so much for asking for me xx Still waiting for my scans another 3 weeks ! Feeling great though can't believe I'm prob still ill .. all my symptoms gone but the little bugger may still be there ? Who knows ! Terrified of the scans ! How are you Adele ? Xxxx Annie.., xxx

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Nov 04, 2018 4:17 pm

Hi Anne
The following is the reply I revieved


Hey pal here's the info I got from my pal.
Paul Zipprin is in St. Mary’s but that’s in London. Apparently the Christie Hospital in Manchester has a v good repetition, but he doesn’t know any of the consultants in it.
Hope your weekend went well xx


Hope this is a help
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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Nov 07, 2018 3:07 pm

Adele,
Thanks so much you are a superstar .. it gives me a lift to know Christies is good .. I'll do some more digging ! .. scans after radio coming up .. terrified what they show.. all my symptoms gone and feel so well ! only thing worries me is my stools are a bit narrower than before but some people have said radio does that too ? Xxx helllp xxx

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed Nov 07, 2018 6:07 pm

It did that to me Anne, if that's any conciliation
And I had 80% reduction
As far as I remember, 17 weeks after first radition is optimal time for Colo/scan to check progress,,,
Good luck I know it's stressful,
A lot is riding on Ur reduction, but as I say I had exactly the same reaction and symptoms, so fingers crossed
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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Fri Nov 09, 2018 2:47 pm

Hi Adele, That does make me feel a little better .. it's so odd because I feel so well and look so well that it's hard to know what's going on ? Thanks so much Adele for your help .. if you had that issue when you had 80% shrinkage do you think it was caused by what was left or the effect of radiotherapy.. did they say ? Xxxx love Annie xxx


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