Surviving radiation for rectal cancer

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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 27, 2018 8:00 am

OMG ANNE
Thats amazing, couldn't have asked for anymore,,,,
Anxiety over for a while now lol
It shows dark on an MRI,,,,
Non surgical would be Watch & Wait!!!!!!!!!
Follow lakeswim,,, she's where u are ATM , so would be very helpful,,,,

There's pros and cons to both!!!!

Only con I can see with non surgical is anxiety of reacurance ( I personally couldn't deal with that)
I was throwing up the day before my sigmoid to check on shrinkage!!!!!!
I'm generally not anxious person,,, but when it comes to this cancer,,, I'm always afraid of my next scan etc

But on the flip side u won't have any of the possibility of LARS
Then again who knows how u will be after a reversal
No one knows until it's done!!!!

Uve a lot to think about here with life-changing concaquences either way!!!!

Only u can decide what's best for u
But definitely talk to people here who were n Ur position,,, because until Ur faced with it I don't think u can understand the predicament

I'm so happy with Ur good news,, Long may it last
Adele X


viewtopic.php?f=1&t=53498#p423816
Last edited by Eleda on Tue Nov 27, 2018 10:57 am, edited 1 time in total.
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

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Tue Nov 27, 2018 9:21 am

Hello, all. I see this thread about surviving radiation and thought I'd chime in because I finished radiation a week ago.

I took a lot of notes during summer chemo but didn't during chemoradiation, and my chemo brain seems worse now (after chemo and chemo/rad), so I'm sorry I don't remember exact timing and details.

Summmer chemo was rough (I had to stop Oxaly early due to extreme side effects) but I found Chemo/Rad to be just as challenging in different ways (and mostly from the side effects of the capecatabine). During chemo, I had my off weeks and many of those weeks were pretty normal and I felt ok. But, the capecetabine (sp?) DAILY (weekdays) was terrible. I hated it. I took 3 pills with breakfast and dinner and by the second week, I dreaded it. You are required to EAT in order to take them, but the pills made my stomach hurt and the diarrhea became unpredictable. I found that the less I ate, the less my symptoms. So, I generally ate very little - and mostly bananas, oatmeal, applesauce, and rice. My radiation was mid morning so I took 2 immodiums every morning so I could be confident about getting to radiation without an accident. It worked for a while until the 3rd/4th week when I had to camp out near my oncologist office's bathroom before my follow up appt. and wear a pad on the way, just in case. I lost much more weight during this time than during summer chemo. I had one or two weekends at the start where I felt better on weekends but then, that stopped and I had issues most days (it seemed unpredictable). There was one night where I woke up with diarrhea and nausea (first time real nausea for me - even after a summer of chemo). My Onc stopped the drug (gave me a few days break) after that - but the Rad Onc felt I had done enough of the drugs (I think we paused on Day 20 - of 28 total - and that day was day 24 at that point) and re-starting with 4 days of treatment to go wasn't necessary. I hugged my Rad Onc when he told me I didn't need to take anymore. (I HATE that drug. Not as much as Oxaly but I'll take 48 hours on the 5FU pump every other week over this daily.)

STOMACH PAIN: I thought I'd magically feel better after the drugs stopped, but perhaps due to my lack of nutrition or whatever, I felt terrible for all sorts of reasons (severe stomach pain on Sat, migraine (new to me) on Sunday) on the final weekend. When I was in the teens (in terms of treatment days), I started getting sharp stomach pains a few hours after I ate. I don't know whether it was from the drug or the radiation (the Rad Onc said it was too high to be the radiation), but it was akin to labor pains in terms of pain level. Thankfully, it was brief and happened only after I ate (and I ate as little as possible). I felt it was related to digestion because of how the pain behaved. This pain has stopped a few days after I was done with radiation. I only had pain while pooping one time and that was during diarrhea.

The diarrhea stopped 4 few days after I stopped the drugs - which left me with only a few days of radiation. Then, I had gorgeous BMs - better than even before I was diagnosed. :-) (So, maybe my "glue poos" - as my family called them - were a symptom of the tumor? I had glue poo for YEARS!)

Experiencing the urgent and unpredictable diarrhea really made me feel for those with LARS. I can only imagine how difficult is must be when it's far worse to have any normal QOL. (Radiation made me stop and consider W&W seriously for the first time.....)

SKIN ISSUES from radiation: I had (and still have) VERY mild discomfort in the skin near my tailbone (where one beam went) but it was never bad and I only knew about it because the Rad Onc team insisted I put cream on it to keep it at bay. The beam points on my hips got a little dry after it was done but nothing really there.

THE BIGGEST (CONSISTENT) THING for me has been the SKIN issues from the capecatabine (I can't spell this to save my life). My Onc PA says mine isn't even that bad compared to others but it's very bothersome (and uncomfortable). I have been religious about the Urea cream (which they recommended). The hands started early but I started wearing cotton gloves to do ANYTHING (esp folding warm laundry or unloading warm dishes from DW as the heat really bothers them) and at night. The hands and feet (red/inflamed) got really bad the weekend before they stopped the drugs. I didn't start using the cream on my feet soon enough (because I didn't have problems with my feet early one) but I guess you should do it early regardless. (Hot showers really aggravated my feet!)

I found two issues with my hands/feet. The numbness/ tingling at the tips of my finger and toe tips is one thing. The other thing is the redness/inflammation/pain. Sometimes I had both. The latter bothers me the most and it's still somewhat of an issue - 2 weeks after stopping the drugs. (Also, the numbness at the finger/toe tips is still around.) They say it will take a good month for that to subside but I also have to remember that I may have Oxaly neuropathy (from summer chemo) playing a part in this. (I had some neuropathy - but it felt different - during my break after chemo.) I also have had - when I lie down at night to sleep - this vibrating feeling - like electricity going up and down my legs. Again, time will tell what all of it is because they SAY the capecatabine hand/foot thing definitely goes away, but the neuropathy takes longer (or doesn't go away). They did point out that the tingling and the redness/inflammation is part of the capecatabine, so we will see. It is frustrating now because I feel pretty good and want to start walking again (to get back in shape should I have surgery) but the walking (friction) aggravates the skin on my feet.

FATIGUE - My team has been surprised by my lack of fatigue, given that's a big one for people. We've decided that I have been feeling fatigue for years (I think, looking back, it was a big symptom for me that I blamed, at the time, on perimenopause and some other exteme stress related to my daughter's health) so I am familiar with this devil so I don't report it as much as others. Feeling tired/bleh is unfortunately normal for me. That said, I did/do feel fatigue though and it is unpredictable. I can feel ok and then, all of a sudden, feel really tired. (Both the drugs and the radiation cause fatigue. I think the drug made me more tired than the radiation). I was like a toddler in the evening - just cranky and out of sorts. It was nice to sleep like a rock through the night (most nights) during radiation after having such sleeping problems while on the summer chemo.

Aches: A week out from finishing, I have aches in my lower back, hips, and upper right thigh. I need to bring this up with them but haven't yet. Sometimes I need to use a heating pad.

I hope this wasn't too long. If I think of anything else or experience anything else, I will come back to add to this. But what I learned now - after chemo and radiation - is that everyone IS different and you can't assume you will have the same experience as someone else. (That is good and bad news given it could be better OR WORSE than others.) But it's good to have this forum so you know what to ask about and look out for.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Tue Nov 27, 2018 9:33 am

Very nice summary of what a lot of us went through.
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

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 » Tue Nov 27, 2018 9:58 am

This is good news. I too had a great response to chemo/radiation. Pet scan showed no sign of disease, and surgeon did a sigmoidoscopy and said all that was left was scar tissue. I was never offered a non-surgical decision, just depending on pathology after surgery I may not need to do chemo. The pathology after surgery showed minimal residual cancer cells but clear margins and no lymph nodes affected. My oncologist still recommended chemo as she could not guarantee no cancer cells got into the blood stream. I was disappointed but went ahead and did 6 rounds of Xelox. It is good your doctor is doing a biopsy to check for cells. I guess it would not have mattered if my surgeon did a biopsy as I did have a few residual cells. It's been 2 1/2 years since I have finished chemo. The chemo could be difficult at times, and I had a temporary ileostomy that was reversed 5 weeks after my resection as I had to have surgery for a small bowel obstruction due to scar tissue. My surgeon said if he had to do surgery he would reverse the ileo. As a result, I did have diarrhea with chemo and it was difficult as most of my rectum was gone. I do have some minimal neuropathy in my feet from chemo, just annoying, but doesn't stop me from doing anything. It is a tough decision, the surgery for rectal cancer can cause problems with bowel movements but there are solutions, and I am doing pretty well. Good luck with your decision. Great news that the chemo/radiation worked.
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

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Tue Nov 27, 2018 10:10 am

HI Susie. Thanks for your positivity and your experience. I am not sure if it worked (scan in mid Jan will tell!) or whether I'll have a biopsy (that's a questions I have for my team!) but I do hope it worked (so I have an option to consider). Funny that I went from not even considering W&W to being eager to know if it's an option for me. I guess going through radiation made me see what it could be like after surgery - for LIFE.

I am thankful you are sharing your post-operative experience as, in another thread, I asked about whether everyone has LARS and to what extent - so I have this information as part of my decision making (or my list of questions).

I'm curious if most are put under twilight sedation for their sigmoidoscopy? I was put under - that last time I had it. I can't imagine being awake for it - but apparently many are?
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

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 27, 2018 11:08 am

Lakeswim I was awake and unsedated for both, and wasn't an issue at all, in fact it was better because I was able to see what was going on and ask questions during the 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

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 » Tue Nov 27, 2018 3:46 pm

lakeswim wrote:HI Susie. Thanks for your positivity and your experience. I am not sure if it worked (scan in mid Jan will tell!) or whether I'll have a biopsy (that's a questions I have for my team!) but I do hope it worked (so I have an option to consider). Funny that I went from not even considering W&W to being eager to know if it's an option for me. I guess going through radiation made me see what it could be like after surgery - for LIFE.

I am thankful you are sharing your post-operative experience as, in another thread, I asked about whether everyone has LARS and to what extent - so I have this information as part of my decision making (or my list of questions).

I'm curious if most are put under twilight sedation for their sigmoidoscopy? I was put under - that last time I had it. I can't imagine being awake for it - but apparently many are?

I was put under twilight. I cannot imagine not being under some sort of sedation.
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

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

Re: Surviving radiation for rectal cancer

Postby Annie50 » Tue Dec 18, 2018 11:52 am

Eleda wrote:Lakeswim I was awake and unsedated for both, and wasn't an issue at all, in fact it was better because I was able to see what was going on and ask questions during the proceedure
Adele X

Hi Adele
How you doing ? Lots of love Xxx Annie xxxx

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 Dec 18, 2018 3:49 pm

Hi Anne, all good here,,
Met my surgeon last week and defered my reversal till end of Feb because of my shingles!!!!
Also suggested stretching the rectum during surgery ( should be great fuckin fun lol)
He checked via DRE in his office and he obviously seems to think it's a bit tight,
TBH following Mike NH
IM very nervous about the reversal
What's Ur situation thus far????
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 cancerl

Postby Annie50 » Thu Dec 20, 2018 10:40 am

Eleda wrote:Hi Anne, all good here,,
Met my surgeon last week and defered my reversal till end of Feb because of my shingles!!!!
Also suggested stretching the rectum during surgery ( should be great fuckin fun lol)
He checked via DRE in his office and he obviously seems to think it's a bit tight,
TBH following Mike NH
IM very nervous about the reversal
What's Ur situation thus far????
ADELE X


Adele ?!! Just got back from appointment with my colo surgeon at Christie to get my biopsy results which he has been away so I thought it was bad news calling me in so quick and OMG he took 8 biopsies (he was really looking hard for something !) and he said after chemo radio NO CANCER cells in any of biopsies !??!!! So he had offered watch and wait ? No surgery complete clinical response .. I am in shock ? Very Happy but confused What do you think ? Xxx annie xxx

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancerl

Postby NHMike » Thu Dec 20, 2018 10:49 am

Annie50 wrote:
Eleda wrote:Hi Anne, all good here,,
Met my surgeon last week and defered my reversal till end of Feb because of my shingles!!!!
Also suggested stretching the rectum during surgery ( should be great fuckin fun lol)
He checked via DRE in his office and he obviously seems to think it's a bit tight,
TBH following Mike NH
IM very nervous about the reversal
What's Ur situation thus far????
ADELE X


Adele ?!! Just got back from appointment with my colo surgeon at Christie to get my biopsy results which he has been away so I thought it was bad news calling me in so quick and OMG he took 8 biopsies (he was really looking hard for something !) and he said after chemo radio NO CANCER cells in any of biopsies !??!!! So he had offered watch and wait ? No surgery complete clinical response .. I am in shock ? Very Happy but confused What do you think ? Xxx annie xxx


Sounds awesome to me.
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

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Thu Dec 20, 2018 2:19 pm

Congrats! Yay!!!! So nice to have that option. (I get my scan in Jan and hope to have the option to consider.)

What do you think?
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Thu Dec 20, 2018 2:22 pm

Annie....ps... you must be doing TNT AS WELL you are at a similar place in treatment as me!
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

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 Dec 20, 2018 4:26 pm

Wow wow wow
How amazing, what a result, u must be so Happy :lol: :lol:
I couldn't possibly give u
advice on this in afraid because if I was not Ur position, I'd be the same as u!!!!!
In fact it's a very difficult position to b in bearing in mind it's Ur future of reacurance Ur deciding on( no fun there)
But only you can decide this
All I can say it's 3things
Research
Reaserch
Research!!!!!!!
And then make Ur own informed decision....
U alone an ONLY do this unfortunately,,, but I'm sure I will choose what's best for u
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: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Thu Dec 20, 2018 11:29 pm

Good news. I got my PET scan results back on Monday, clean, no cancer. I saw surgeon on Tuesday and am planning reversal for March. Stanford has a study that combines diet, strengthening and exercise to improve outcomes. I am going to see if dropping a few pounds, building up core and endurance helps, given what I read so far can't hurt. Waiting to March and a super healthy diet may give my skin more time to toughen up. Couldn't take the wiping now. Happy to say that sex is finally not resulting in discomfort the following few days.
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


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