Surviving radiation for rectal cancer

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Marcia Mullins

Re: Surviving radiation for rectal cancer

Postby Marcia Mullins » Sun Jun 16, 2013 11:09 am

I don't know why it is not the standard but everyone having this treatment should be seeing a
WOCN (Wound/Ostomy/Continence Nurse).
Ask to see a WOCN when you start the radiation treatments. They can help you get through it.
My WOCNS saved my a**. Literally.

Marcia Mullins
3c rectal
2 years out from diagnosis

scaredwidowedmom
Posts: 49
Joined: Thu Oct 11, 2012 12:24 pm

Re: Surviving radiation for rectal cancer

Postby scaredwidowedmom » Mon Jun 17, 2013 8:50 am

I feel your pain. Literally! I went thru the razor/broken glass poops and it was horrible. I begged for something to numb it as the bidet attachment and suppositories didn't work. They told me that the numbing creams they had had alcohol in them & would dry the skin worse. :( I literally cried when I pooped. It was horrible and I broke the toilet seat from grabbing it to deal with the pain. Then I went to an adult novelty shop. I found a product that is specifically used to numb the anal area. It helped tremendously! It had 7.5% benzocaine and no alcohol. Then upon further research I found that tooth ache medicine has 20% benzocaine & no alcohol! I never leave home without a tube of it. It was a life saver for me that and cold water from the bidet.
Susan Diag @ 45
DX 10/1/12 T3N2M0
Chemo/Rad
Ultra LAR w/ileo 2/13
3/13 18 X- 5fu & oxali
TD 9/2013
Ct clear watching lungs & liver 12/2013
2/14 colonoscopy 2 pre-c
7/14 permanent painful cipn & gastroparesis
Next ct 10/14

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: Surviving radiation for rectal cancer

Postby jjlist » Mon Jun 17, 2013 12:37 pm

Calmoseptine is an over the counter ointiment that has helped me greatley when things go bad.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

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neilmaciejewski
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Facebook Username: neil maciejewski
Location: Berkeley California
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Re: Surviving radiation for rectal cancer

Postby neilmaciejewski » Wed Jun 11, 2014 9:06 am

Hello --

I feel your pain literally. I am currently, right this moment, going through this as well. My radiation and chemo treatments ended on June 2nd 2014 and I am in the middle of my anal and groin area healing from blisters and burns. Thank you everyone for posting your regimes for pain relief. I find that that the silver sulfadiazine cream works, I apply with a Qtip. Warm bathes and NO wiping. I got some moist baby wipes to use (no fragrance) and they helped. Sitting on ice packs is a dream, numbs the area for a time. Medical marijuana has helped with the pain and fatigue - I get the lozenges and the cookies with marijuana in it - they work well. Also, Percocet helps as well.

3/27 - tumor removed in anal canal
4/1 - diagnosed Stage 1/2 rectal cancer
4/28 - chemo/rad began
4/28 - 6/2 - Radiation 5x a week
4/28 - 6/2 - Chemo 1st & 5th week 5FU & Mitomycin
Next PT scan is end of August to determine if cancer is gone
http://fallingfree2014.blogspot.com

PainInTheAss
Posts: 661
Joined: Tue Jul 02, 2013 3:08 am

Re: Surviving radiation for rectal cancer

Postby PainInTheAss » Wed Jun 11, 2014 3:45 pm

Super hot bath was my main source of relief. My pain actually got worse and worse until I was crying up to a few days before surgery. My tests showed that most of the tumor was dead with just a few trace cancer cells, so I think that because it was so close to the sphincter and the dead tissue was getting harder and harder, my bms hurt like hell trying to push through that dead tissue. My final relief was surgery, but that brought on a whole new set of problems. Recovering from surgery has been the worst part for me. But now, 8 months later, I'm so glad the pain is sooooooo much less (I still have an apr wound that hasn't fully healed yet). My pain was really bad before radiation, too. God I hate pain!

Hang in there! You don't want to stop treatment and "take a break." If it hurts, it's working! Push through and hope you get a complete response. Tell your rad onc about any and all side effects. They often have amazing solutions.

Mary
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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CRguy
Posts: 9592
Joined: Sun Feb 10, 2008 6:00 pm

Re: Surviving radiation for rectal cancer

Postby CRguy » Thu Jun 12, 2014 3:54 pm

I've probably posted elsewhere a while ago BUTT a few meds and tips from my early days of chemoradiation, sacral abscess and post takedown :

topical ointment called Glaxal Base, soothing, non medicated, hypoallergenic and what pharmacists use to "compound" other ointments so it is non-staining and non reacting. For heavy duty protection and waterproofing -> ZincoFax type ointments but they are messy.

Medicated ointmets or suppositories ( check with the doctor ) Proctosone / Proctomyxin types have a combo of antifungal, antibiotic, cortisone, surface protectant, analgesic ( lots of varieties available by prescription. ) Calmoseptine has been recc'd here ( never used it )

non-medicated / non-scented baby wipes ... YES !

sitz baths, bidet ( I had one in the house already ... HUGE saver of butts ! ) or the BioBidet toilet seat which adapts to an existing toilet and provides " flush the tush and blow dry capabilities " I even hear there is a Japanese model which gives you a spritz of your fave cologne :shock:
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

SteveNZ
Posts: 140
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Wed May 09, 2018 6:18 am

So Cal David wrote:.......... Pardon my lack of modesty but passing a stool is like shiting razor blades........

YUK. For myself (exactly half way thru the radiation) the pain is amazing. If you can excuse my lack of modesty (in New Zealand here with much farming) it feels like dragging barbed wire thru with each bowel motion......... :(

This forum has helped (well helped warn me) and I am not looking forward to more. I am taking 'suppositories' ( as the Dr said, almost smiling, 'you take them internally but not by mouth'.) and this helps. At each radiation treatment I can share what is up and if necessary staff will see you there and then.
O'BOY.......Beam me up Scotty...LOL :( :D :(
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

NHMike
Posts: 1699
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed May 09, 2018 6:47 am

Radiation is tough, no doubt about it. But I healed up about two weeks after it was over. I did complain to the doctor and other caregivers but just toughed it out in the end. A lot of us have been there (as I sit on my specially designed foam cushion - an artifact from radiation). I don't think that they're inclined to stop with the radiation as it's progressive and it really does shrink the cancer a lot.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Eleda
Posts: 156
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed May 09, 2018 2:21 pm

Reading all the posts here I seem to think I've had a different form of radiation, as I didn't have any BUTT UP!!!!!! but mearly lay on a slab shimmied my tracksuit to below the tattoos, and lay still for about 3 minutes,,
Up and out so maybe that's why I didn't have as bad external damage as many others here,,,,

Aquaphor was great but not on radiation days
And sitz bath
And shower after every poooooo


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

NHMike
Posts: 1699
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed May 09, 2018 2:24 pm

Eleda wrote:Reading all the posts here I seem to think I've had a different form of radiation, as I didn't have any BUTT UP!!!!!! but mearly lay on a slab shimmied my tracksuit to below the tattoos, and lay still for about 3 minutes,,
Up and out so maybe that's why I didn't have as bad external damage as many others here,,,,

Aquaphor was great but not on radiation days
And sitz bath
And shower after every poooooo


Adele x


This is what they did for me too. I didn't have to change into a johnny or gown. I recall it taking quite a bit more than three minutes though.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Eleda
Posts: 156
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed May 09, 2018 3:56 pm

Mike the actual radiation beam lasted about 15 seconds on both sides and back ( through the table apparently)
Longest part was waiting, and no bladder full either for me apparently :D
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

NHMike
Posts: 1699
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed May 09, 2018 4:06 pm

Eleda wrote:Mike the actual radiation beam lasted about 15 seconds on both sides and back ( through the table apparently)
Longest part was waiting, and no bladder full either for me apparently :D


That sounds right. There was also some time moving the stuff into place.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

SteveNZ
Posts: 140
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Wed May 09, 2018 4:44 pm

Eleda wrote:Mike the actual radiation beam lasted about 15 seconds on both sides and back ( through the table apparently)
Longest part was waiting, and no bladder full either for me apparently :D

I am glad for you Eleda with little pain. :D :D
I have to get a full bladder. My radiation was similar although times tended to vary. On some days I would get something like a 15 then 10 on the sides. I assume the strength verse time required varies throughout the sessions.

I think that much of it is also that the tumour is very low touching my anus (all of these names) so that the radiation probably 'zaps' a fair bit of that muscle as well.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Eleda
Posts: 156
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed May 09, 2018 5:57 pm

I think for men but may b slightly different as regards bladder Steve,
I had 28/35grey if I remember correctly.
Mine was 2.5/3cm from anal verge and shrunk up to 4cm now,,, so also very low, so fingers crossed all will go well tomorrow with the anastomosis,,, drinking prep as we speak :mrgreen:
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

weisssoccermom
Posts: 5868
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Wed May 09, 2018 6:20 pm

No actually a full bladder....for either sex....has been shown to be preferable. The bladder helps push some of the colon out of the way from the radiation field. No one may actually tell you not to have a full bladder....it's something you 'hear' about and realize that its one of those things that the rad oncs neglect to mention.

I also just lay flat on the table....on my back and that was 12 years ago!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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