Surviving radiation for rectal cancer

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NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed May 09, 2018 6:21 pm

weisssoccermom wrote: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!


My place gave me a bottle and said fill it up to the line and drink it 30 minutes before appointment.
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; 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, 2/12 1.2
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
2/19: Clean CT

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Wed May 09, 2018 6:42 pm

Obviously no one wants a patient to be in 'distress'.....feeling so uncomfortable that they are going to pee on the table. I was also told to drink about 30 minutes before each procedure. A full bladder also helps to minimize the radiation effects on the bladder. Again though, it is a side effect that most rad oncs don't bother to address.....it's not that important to them.
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!
Perform random acts of kindness

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed May 09, 2018 7:38 pm

weisssoccermom wrote:Obviously no one wants a patient to be in 'distress'.....feeling so uncomfortable that they are going to pee on the table. I was also told to drink about 30 minutes before each procedure. A full bladder also helps to minimize the radiation effects on the bladder. Again though, it is a side effect that most rad oncs don't bother to address.....it's not that important to them.


The biggest problem for me with the water when my appointment was delayed. The worst case was about two hours. So they came out and said that it was okay to release a little into the toilet. My son explained that water can absorb a lot of radiation so it helps to prevent inadvertent damage to other organs.
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; 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, 2/12 1.2
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
2/19: Clean CT

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Wed May 09, 2018 7:56 pm

That is likely why having a full bladder helps to minimize the effects of the radiation on the bladder itself. Makes sense.
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!
Perform random acts of kindness

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Surviving radiation for rectal cancer

Postby ocstacy » Mon May 14, 2018 11:44 pm

Hi there. My mommy went through the same pain you are explaining last summer. Towards the end she said the pain was a 10 because her location was 3 inches above rectum, very close to opening. Not sure if your nurse explained the end treatment is the strongest because they narrow down the radiation and target harder. Glad they explained to me cause I would say my mom experienced the most pain 2 weeks after her last radiation. She explained as sharp, icicles.. where you barely move and it's like ice blades. You can't really do much when you are doing radiation, but can you take some pain meds, and there is zinc oxide that can help too but ask your dr. There is some kind of numbing spray, but always ask the nurse. I had horrible hemmy's about three years ago and I was in tears and in bed for 4 days straight. I thought that my hemmy was going to burst as it was pulsating.. worst pain ever so I can't even imagine what your pain feels like. I did not have insurance at the time, so i let it go so bad that i had an infection. I couldn't even sit down, only on a donut. The only thing that worked was proctozone. Best wishes and it will get better soon. I have a ton of zinc I can send you if your dr. says you can use it. brand new :-)
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Tue May 15, 2018 12:03 am

PUSH HARD NOW (a true story...)

OK now breath deeply now push ....... AAAAArrrrrrgh it hurts
Keep going...... Yaaaaaaa
A qick breath, good, now push again.....
OOOWWWWWWWWWW it hurts like ..........(BEEP censored......)
Pant, pant, pant,
Breathe and
YAAAAAAAAAA........WOWW
Its coming push harder now
AaaaaaaaRRRRRGGGGGG
wawawawa........cry, cry, cry.... sob sob in agony...

Well done now stop crying only another 52 bits of barbed wire (or razor blades) to go..... :( :( :D :( :( :(
MAN IT HURTS POOING THROUGH AN IRRADIATED POO HOLE...

**TO ALL MOTHERS- I apologise for ever wondering what it is like to give birth. Man you ladies are brave..... And have some guts. I take my hat off to you and will forever remember mothers day with respect.

Seriously though WOW it is so awful that even passing gas can have you wincing..... :(
My tumour is right against my anus so everything down there (including junior - other guys will know what I mean) is suffering. The medical folk are really good though and doing their best to help combat the symptoms of such radiation. And to be fair I was warned and knew what was likely.
I must admit though they need a few 'real live survivors witness accounts' rather than the perfectly correct medical description.
Last edited by SteveNZ on Tue May 15, 2018 2:33 am, edited 1 time in total.
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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Tue May 15, 2018 12:23 am

LAUGHTER THE BEST MEDICINE
True Story- Apparently when on the loo 'struggling away' trying to pass some 'smashed glass' (what it feels like), apparently I talk to the stuff and make all of these interesting sounds, groaning, squealing, wimpering and interesting comments??
Well I was in hospital for two nights (due to bad chest pains) in the toilet and a few other people were in their own cubicles (the shared bathroom on the ward has a few plus showers) and word got out about this guy suffering away.
And they mimic, some quite well................
So those in my room have a good laugh (in good fun, nothing awful) as they know it is me. While others............ who knows what they are saying?

LESSON-In public cringe and bear it.........LOL *You can't it is too painful.

LATEST TORTURE - Two nurses introduced it to me at hospital.
Folk with an irradiated 'feaces output unit' know that you can barely touch the area and any thought of using a wire scraper (what toilet paper or a wash cloth feels like) is out of the question.
So they shared this idea of sitting on a SOFT pad of saline solution.
So you do and '.....@#$^*)(&^$%^^%%$%^^^.....'' you told them everything they wanted to know. And even tried to think up state secrets to share to get it to stop. But it worked..... cleansed you well..... but made you cry....
Haha..... If I was Catholic that was the time for a father to hold confession...LOL :( :D :(
Last edited by SteveNZ on Wed May 16, 2018 3:28 am, edited 1 time in total.
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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Surviving radiation for rectal cancer

Postby Soccermom2boys » Tue May 15, 2018 8:55 pm

You are cracking me up, SteveNZ, with your descriptions of dealing with bowel movements during radiation! Sadly I know all too well of your pain. Two tips to help ease the pain a bit: ask for a sitz bath, those were my “treat” several times a day during the last two weeks or so of radiation. Also, instead of using toilet paper, as we know it honestly feels like sandpaper at this point, ask for a peri-rinse bottle and just squirt off any stool and then ever so gently dab off anything still sticking around. :lol:
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Wed May 16, 2018 2:32 am

Soccermom2boys wrote:You are cracking me up, SteveNZ, with your descriptions of dealing with bowel movements during radiation! Sadly I know all too well of your pain. Two tips to help ease the pain a bit: ask for a sitz bath, those were my “treat” several times a day during the last two weeks or so of radiation. Also, instead of using toilet paper, as we know it honestly feels like sandpaper at this point, ask for a peri-rinse bottle and just squirt off any stool and then ever so gently dab off anything still sticking around. :lol:

Thank you for that.
The radiation staff also advised that some form of rinse bottle will work well. I admit that I was dubious but your experience has convinced me.
??? What is a 'sitz bath'?
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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Wed May 16, 2018 3:13 am

Soccermom2boys wrote:......ask for a sitz bath, those were my “treat” several times a day during the last two weeks or so of radiation. l:

Thank you. I have found out about a sitz bath..... One of Susie's (my lovely wife) friends in the US purchased one. It turns out she had a similar type of cancer so is now interacting back and forth. :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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

GilletteRazorMan
Posts: 10
Joined: Sun May 20, 2018 3:27 pm
Facebook Username: Marc Lowell

Re: Surviving radiation for rectal cancer

Postby GilletteRazorMan » Sun Jun 17, 2018 3:48 pm

Using silver Flamazine for butt cheeks. Developed burn on penis dispite being on stomach on beam radiation machine...rays went through. New problem...trying to figure which proper cream to use for new penis burnvand ulcer. Missed 3 days of rad last week cause of this new problem. Tested for stds etc negative..mmust be a burn..on wing wang of all places!! Painful to wear clothes and skin penis burns after every pee!! Back to rad tomorrow...how am going to lie down with new pain??? June 17 2018.

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Sun Jun 17, 2018 5:29 pm

GilletteRazorMan wrote:Using silver Flamazine for butt cheeks. Developed burn on penis dispite being on stomach on beam radiation machine...rays went through. New problem...trying to figure which proper cream to use for new penis burnvand ulcer. Missed 3 days of rad last week cause of this new problem. Tested for stds etc negative..mmust be a burn..on wing wang of all places!! Painful to wear clothes and skin penis burns after every pee!! Back to rad tomorrow...how am going to lie down with new pain??? June 17 2018.

WOW. Man I can almost feel it with you. :cry: They don't really warn us guys that 'junior' can really suffer from it all. :cry:
Thinking of you.
I have got over the worst of it now but cringe at the thought of ever returning.

Steve
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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

GilletteRazorMan
Posts: 10
Joined: Sun May 20, 2018 3:27 pm
Facebook Username: Marc Lowell

Re: Surviving radiation for rectal cancer

Postby GilletteRazorMan » Tue Jul 03, 2018 10:34 pm

I just cant bathe period these days...stings too much from Radiation burns and Thrush on Penis. Supposed to clean area daily..having troubles. Using hand held shower head to minimize pain and stinging. Keep water flow low and temperature cool. Trying to spray butt hole after every poo. Some falls out into bathtub...used old towel to rub shit leftover out but irritates burns on butt cheeks and hole. Called...Radiation Shuffle.. Feels kinda erotic but hurts afterwards.

Anal itch picked up and bad..Flamazine and Glaxen cream not working for anal itch. 2 more days to go off dose and 1/2 Rad...then supposedly finished...believe that when I hear it tomorrow from the Horse's Mouth(Radiologist).

Overheard some lady last week planning a recovery House boat trip..Nurse said Sorry Doc added 3 more weeks to her treatment. She was in tears..thought it was DONE!

Find out tomorrow...if only have 2 days left or not.

Meanwhile itch and pain have started up once again.Back on Oxycodone after two weeks not needing it. Must be worse the last few days of treatment!!

Gary's Wife
Posts: 1
Joined: Fri Jul 06, 2018 11:00 am
Facebook Username: Randi F Mezzy

Re: Surviving radiation for rectal cancer

Postby Gary's Wife » Fri Jul 13, 2018 12:19 pm

Someone on this forum mentioned a product called Recticare. It is available OTC and while expensive, it is a MIRACLE PRODUCT. My poor husband was in the fetal position from pain. He tried Domeboro, Calendula gel & Calmoseptine, which helped but not enough. Recticare was the answer! Magical stuff. I am a big fan of buying generic products, but in this case, all the commentors on Amazon indicated that not even the Prep H version of this (lidocaine 5%) was as effective as brand name Recticare. I am not being compensated for this, I promise. I wish I were!

I bought it at CVS for $32 but have since ordered it from Amazon for much less. I feel all the radiation oncologists should know about this product and provide it for their patients! We have told our doc at Smilow Cancer Center (which, by the way, is an awesome place. We refer to it as "Smilow Cancer Theme Park" because it is so enjoyable to visit. EVERYONE is so warm and kind, and they go out of their way to make things as easy as possible for the patient and his family).

Working on the signature instructions....

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Fri Jul 13, 2018 2:50 pm

When I was undergoing radiation, my rad onc had Rx'd me some Premarin cream....for the dry vaginal issues. I thought....well, heck, why not use it on the 'back end'. Man does that stuff make the difference! I spoke with my colorectal surgeon who admitted she never thought about it but when we discussed it....she said it made a lot of sense. During radiation, the treatments thin and dry out the skin and the skin in the rectal issue is already thin and sensitive so adding radiation to the issue doesn't help one bit. I should also add that I NEVER used anything but a glycerin based soap from the waist down during radiation.....it is SO much better than regular soap which may say it is soft, promotes all sorts of stuff, but, in reality is still very drying. Back to Premarin though. It is an estrogen based cream used by women primarily during menopause to help with the extreme dryness that most of us experience due to menopause and changing hormones. It does more than just 'lubricate' the vaginal tissue....it replenishes the hormones (in minute local amounts) that help the tissue have more elasticity and not be so dry. So, when I started using in the rectal area, I experienced the exact same response and my colorectal surgeon (and GYN agreed as well) that it made sense and the small amount of 'local' hormones wouldn't do anything. It made the world of difference. The tissue around the anus wasn't dry, didn't feel as though I was sitting on barbed wire when I had a BM and overall.....it was a welcome welcome relief!

Just a thought....particularly for the women to fairly easily get the cream for other reasons. Talk to your doctor about it. It works!!!
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!
Perform random acts of kindness


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