Surviving radiation for rectal cancer

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Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sun May 12, 2019 10:00 am

Happy Mother’s Day. Glad we are on this side of it, hope we stay clear.
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun May 12, 2019 10:05 am

Hi Anne,
How r u doing,,,,
Have u made a decision on W&W
HOPE ALL IS GOOD

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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun May 12, 2019 10:06 am

Hi Susan,
are you impoviding any bit????

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: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sun May 12, 2019 10:59 pm

Yes thanks Adele. I have to drink plenty of water, keep things moving. I have been taking one gabapentin daily for safety. I enjoyed fresh asparagus and strawberries today without any problems so far. Pretty much normal life except thinking, worrying about bathrooms.
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surviving radiation for rectal cancer

Postby Rock_Robster » Thu May 16, 2019 6:10 pm

Hi all, today I finished my 25th and final fraction of pelvic radiation, with Xeloda 3000mg/day. I must say after reading this thread I was pretty terrified going into this. This post isn’t meant to diminish the difficulties I know many folk have had - clearly this can be a very tough process with long-lasting effects.

Overall I was fortunately to find it fairly tolerable, with the main side effects being diarrhoea, fatigue, and some local burning-type pain. Imodium, MooGoo cream and a bidet toilet attachment were my friend. On a couple of days I also had some nausea, so Zofran and Buscopan helped a lot there. I was doing treatment ‘supine’ (on my back) due to my liver surgery wound (rather than the usual ‘prone’, ie face down), which I was told would result in more gastrointestinal symptoms but likely less local skin damage. The first 2-3 weeks were largely side effect-free, with the last 2 weeks being a bit more challenging. I wasn’t working thankfully though probably could have, with the exception of maybe 2-3 days in total where nausea and fatigue was worse. Overall, I found this much more manageable than FOLFOX chemo.

I had a good naturopath who helped me throughout with vitamins, glutamine and pre/probiotic supplements to try to maintain gut health.

This is just a brief note to give folk some hope going into this that all outcomes are possible in terms of side effects, particularly if you’re prepared and get on top of them early. Best of luck to all.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Annie50
Posts: 86
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed May 22, 2019 7:27 am

Eleda wrote:Hi Anne,
How r u doing,,,,
Have u made a decision on W&W
HOPE ALL IS GOOD

Adele X


Hi Adele how are you doing now ?
Yes been on W&W now since September and just had another CT and MRI clear with latest sigmoid and biopsies clear so ... onwards ! I hope you are feeling better ? Let me know Adele !

Lots of love Annie xxxx

CF_69
Posts: 80
Joined: Sat Dec 22, 2018 9:44 pm

Re: Surviving radiation for rectal cancer

Postby CF_69 » Wed May 22, 2019 7:56 am

Anybody get severe back / hip pain after radiation?

My 25th and last treatment was mid January. I had a LAR at the end of March. Now I have sciatica for sure. Terrible pain in my left hip/buttock area that radiates to my calf and makes my toes numb.

This flared up about a month ago.

I went to the Emerg because the pain was so bad I thought I had a blockage. They x rayed me and said I wasn’t.

I talked to my radiation oncologist at the follow up and he said it could be part of the reason.

I went to the surgeon and he said it wasn’t related to the surgery, which I find hard to believe.

I made an appt. at my family doctor’s clinic with a non MD practitioner, I can’t remember his title. Anyway he gave me a script for naproxen and a muscle relaxer and told me to try physio and/or acupuncture. The pills did nothing.

I’ve been doing the physio exercises for years since I’ve had disc problems before. I went to a chiropractor / acupuncturist a few times and he hasn’t been able to get my tight side to release.

So I’ve made yet another appointment with a doctor at the clinic and my goal is to get a referral for an MRI at least and hopefully to an orthopaedic surgeon.

It’s pretty awful. I can’t walk for more than a few minutes without needing to sit and wait for the pain to subside. I spend most of the day in bed lying on an ice pack.

I can’t sleep unless I lie on my left side. Every other position is too painful. I’ve been eating Robax like it’s candy.

Just so weird for this to have come up since there was no obvious event that caused the injury. I spent 5 days in the hospital after surgery so that was quite uncomfortable. I was walking a few weeks later but that’s not super strenuous. I didn’t push myself at all physically.

I guess it’s normal for radiation issues to manifest themselves 4 months later or even longer. Hard for me to see the connection though.

I really think I will need surgery. I’m on Xeloda for adjuvant therapy at the moment too. Cycle 2 starts tomorrow. So I can’t imagine I’ll be able to have anything major done until that’s finished.

But I’m in Canada anyway, it will take months to get to surgery. Hell it will take months to even get an MRI done unless I get one at a private clinic in Quebec, but I can’t pay for that now that I barely work.

It’s just weird watching all these medical professionals that were so apparently on the ball with my cancer treatment just kind of shrug off my back problems. I’ve had them before but never like this.

Anyway. Kind of rambled there :lol:
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

martd
Posts: 108
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Surviving radiation for rectal cancer

Postby martd » Wed May 22, 2019 8:50 am

A few years back BC (before cancer) I had terrible back pain in that same spot. Thought for sure I had a disc problem, X-ray showed everything was fine. I ended up stretching and thats all it needed. It must have been a tight muscle or something. I was amazed the pain went away almost instantly that same day. I would put a leg up on the bathroom counter bend forward and twist a little until I felt the pain and hold it there about 20 seconds. I could feel the pain let up as the muscle stretched out. Hope yours is as easy as that.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

CF_69
Posts: 80
Joined: Sat Dec 22, 2018 9:44 pm

Re: Surviving radiation for rectal cancer

Postby CF_69 » Sat Jun 01, 2019 3:56 pm

No such luck. Stretching seems to have made it worse.

I can feel something pushing on the nerve. Have an MRI coming up as soon as I get the call. I’ve been basically immobile for over a month now.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

Annie50
Posts: 86
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Jun 09, 2019 2:38 pm

Eleda wrote:Hi Anne,
How r u doing,,,,
Have u made a decision on W&W
HOPE ALL IS GOOD

Adele X

How are you doing Adele. ?? Xxxx let me know xxx

Annie50
Posts: 86
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Jun 17, 2019 7:46 am

Eleda wrote:Hi Susan,
are you impoviding any bit????

ADELE X

Hi Adele how are you doing ? Xxx Annie

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Jun 17, 2019 2:58 pm

Hi Anne, I'm doing good some days and bad other days
It's so unpredictable :mrgreen: :mrgreen: :mrgreen:
All bloods and markers are good so that's good

How r u doing????

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: 86
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Tue Jun 18, 2019 11:55 am

Eleda wrote:Hi Anne, I'm doing good some days and bad other days
It's so unpredictable :mrgreen: :mrgreen: :mrgreen:
All bloods and markers are good so that's good

How r u doing????

ADELE X

That’s great Adele I’m so pleased ! I’m now a year after diagnosis and finished my radio chemo last August .. after going on W&W then I’ve just had my 3rd clear MRI and CT and 3rd sigmoidoscopy today which was clear and my wonderful surgeon said showed still complete response with “scar healing nicely” so next one’s in August and onwards we go ? I know it could change but just walking onwards? Is yours improving ? Do you still have scans ? Great to hear from you ? Let me know ..Much love Annie xxxxxxxx

Annie50
Posts: 86
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Tue Jun 18, 2019 12:02 pm

Annie50 wrote:
Eleda wrote:Hi Anne, I'm doing good some days and bad other days
It's so unpredictable :mrgreen: :mrgreen: :mrgreen:
All bloods and markers are good so that's good

How r u doing????

ADELE X

That’s great Adele I’m so pleased ! I’m now a year after diagnosis and finished my radio chemo last August .. after going on W&W then I’ve just had my 3rd clear MRI and CT and 3rd sigmoidoscopy today which was clear and my wonderful surgeon said showed still complete response with “scar healing nicely” so next one’s in August and onwards we go ? I know it could change but just walking onwards? Is yours improving ? Do you still have scans ? Great to hear from you ? Let me know ..Much love Annie xxxxxxxx


by the way .. I meant pleased that you were ok and about bloods ! Not thar it’s unpredictable !hopefully that will get better ?

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Wed Jun 19, 2019 5:46 pm

Hi Gang,
Things are generally going well. I can go all day to work without issues, generally can wait to finish up what I am doing, as an example pouring wine in tasting room. I was able to finish up with customers, transition to a staff member and drive home. I still don't like using public restrooms, especially shared ones.
So sex. Does anymore worry that they might loss it during? I know its an odd question but honestly I worry about it.
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
PET NED 12/18
Clear Colonoscopy 2/19


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