Surviving radiation for rectal cancer

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Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Tue Jul 24, 2018 4:34 pm

But I'm all for less suffering, so whatever it takes I'll do

Adele X[/quote]

Wish me Luck I start tomorrow.. very nervous, what's very scary is that I feel and look so well ? Did everyone feel like that ? xxxx Annie[/quote]

No one would ever guess from the look of me I had cancer. Did and still wear skirts. Pants were way too uncomfortable.
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

Annie50
Posts: 17
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Tue Jul 24, 2018 4:37 pm

Eleda wrote:Good luck Anne,,,,
U'll be fine,,,,,
For me that was not too bad so hopefully will be the same for u..........
Fingers crossed for u
ADELE X

Thanks Adele ! I'll keep you posted .. here goes .. thanks so much for your help xxxx

Eleda
Posts: 157
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Tue Jul 24, 2018 6:15 pm

I don't know what I would have done myself Anne without this forum this past few months.

Such educated people with balanced and reseherched information and impartial advice that's priceless only willing to help in any way....

All our experience are valuable to others behind,,,
All hopefully of a good outcome for each other

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: 17
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Jul 25, 2018 5:37 am

Eleda wrote:I don't know what I would have done myself Anne without this forum this past few months.

Such educated people with balanced and reseherched information and impartial advice that's priceless only willing to help in any way....

All our experience are valuable to others behind,,,
All hopefully of a good outcome for each other

ADELE X

Yes Adele it is very humbling to see such good people on forums such as this. A good use of the internet ? I don't know what I would have done either without you and people like you / no one knows other than people who are in a similar journey.. people's capacity to help is quite amazing and will change my views for ever.. well here goes today .. xxxxx

Hi Adele. Ending week 2 ! Positive is discomfort from the actual tumour has disappeared .. so something must be happening but bad news is burning of skin from radio darting to cut in .. any tips anyone and did anyone feel the results of shrinking during radio ? Or don't you know ? Many thanks as ever love Annie xxxx


Anyone help with terrible stinging from radio ?? Xxxx

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Thu Aug 23, 2018 10:26 pm

Stopping in to say thanks for this topic. I am nearing the end of my 8 rounds of FOLFOX (at least I hope I am - I have 2 rounds left) and I'm already thinking ahead to radiation and what fresh hell that will bring. Given I had some extreme constipation during one round (which was absolute torture and nearly put me in the ER), I don't want to even imagine what exquisite pain radiation will bring to BMs. And thinking of other side effects . . . I am already lining up my pelvic floor specialists to discuss vaginal stenosis. Good to know you fine folks are here with lots of empathy and good advice. Thank you!

BTW, I believe I will get more 5FU (as a pill, daily) during my radiation. I assume this will come with its own digestive issues? (5FU is hard enough on my stomach with the pump).

Thanks!
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

Annie50
Posts: 17
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sat Aug 25, 2018 7:40 pm

lakeswim wrote:Stopping in to say thanks for this topic. I am nearing the end of my 8 rounds of FOLFOX (at least I hope I am - I have 2 rounds left) and I'm already thinking ahead to radiation and what fresh hell that will bring. Given I had some extreme constipation during one round (which was absolute torture and nearly put me in the ER), I don't want to even imagine what exquisite pain radiation will bring to BMs. And thinking of other side effects . . . I am already lining up my pelvic floor specialists to discuss vaginal stenosis. Good to know you fine folks are here with lots of empathy and good advice. Thank you!

BTW, I believe I will get more 5FU (as a pill, daily) during my radiation. I assume this will come with its own digestive issues? (5FU is hard enough on my stomach with the pump).

Thanks!


That's interesting .. having chemo before radio chemo .. I am just going through radio chemo and it is doable but protect yourself with the creams and potions they prescribe .. I am having a lot of stinging as it nears the end of the 5 weeks .. but you can do it ! Xxx Annie

Hocks
Posts: 6
Joined: Fri Jul 27, 2018 10:17 pm
Facebook Username: Teo Hock Soon

Re: Surviving radiation for rectal cancer

Postby Hocks » Thu Sep 06, 2018 9:23 pm

weisssoccermom wrote:I should have also added that radiation is given for two main reasons. The one that everyone is aware of is to shrink the tumor. The other, just as important reason, is to 'sterilize' the lymph field around the rectum. Don't forget that that is equally important. While patients are given chemo with the radiation, the dosage of chemo is much less than when a patient has chemo by itself. In other words, you can't reliably count on the chemo during radiation to eradicate stray cancer cells. Sure the chemo helps but the majority of the work to help insure that cancer cells that may be in the lymphatic system (remember no radiological tests.....ultrasound, CT or MRI) is done by the radiation...and NOT the chemo. (Remember that no ultrasound, MRI or CT scan with respect to local lymph nodes is 100% guaranteed).


Hi, where did you get the info that radiation kills cancer cells in the lymphatic system that chemo can't? I thought chemo supposed to treat the systemic micro cancer cells in the lymphatic system for those whose lymph nodes were infected?

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

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Thu Sep 06, 2018 9:48 pm

I only said that radiation kills (or at least it is supposed to) the cancer in the FIELD of the radiation. In other words, radiation is used to help sterilize the nodes around the rectum. It certainly would NOT have any effect on distant lymph nodes that were outside of the field of radiation. In addition, many people with suspicious lymph nodes in areas that are amenable to radiation (not necessarily those related to rectal cancer) have their nodes 'zapped' by radiation. Some areas simply cannot be zapped....due to their location. Talk to your oncologist and ask the questions. It's not at all uncommon for radiation to be used to treat certain lymph nodes.
With rectal cancer, again it is only those nodes, located IN the pelvis and IN the radiation field that might benefit from radiation. There are certainly people....some on this board who have had radiation for rectal cancer and still have positive nodes after surgery...so no, it is not a guarantee that radiation will eradicate all pelvic lymph nodes.
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

Annie50
Posts: 17
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Fri Sep 14, 2018 3:17 am

weisssoccermom wrote:I only said that radiation kills (or at least it is supposed to) the cancer in the FIELD of the radiation. In other words, radiation is used to help sterilize the nodes around the rectum. It certainly would NOT have any effect on distant lymph nodes that were outside of the field of radiation. In addition, many people with suspicious lymph nodes in areas that are amenable to radiation (not necessarily those related to rectal cancer) have their nodes 'zapped' by radiation. Some areas simply cannot be zapped....due to their location. Talk to your oncologist and ask the questions. It's not at all uncommon for radiation to be used to treat certain lymph nodes.
With rectal cancer, again it is only those nodes, located IN the pelvis and IN the radiation field that might benefit from radiation. There are certainly people....some on this board who have had radiation for rectal cancer and still have positive nodes after surgery...so no, it is not a guarantee that radiation will eradicate all pelvic lymph nodes.


Hi do you think these days oncologists and radiologists know if it's responding well during radio chemo as they have scanners inbuilt in the Radio machines which they use during treatment to ensure hitting the right position .. as during my treatment just finished the oncologist increased suddenly to 28 from 25 where the last 3 were boosts direct to the actual tumour.. and the radiologists seemed to know position and area throughout .. ? X

Eleda
Posts: 157
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri Sep 14, 2018 3:24 am

I had 6 LN effected, and after radiation 1 still remained so was removed within the musorectal envelope during surgery,,,

Yes Ann they can see the reaction to the radiation but it continues to work for weeks after, I think the peek ( no more shrinking after this time) time after radiation is 17weeks from day one

Also 28 is actually the normal amount of sessions, and it much depends on the amount of grey in each radiation session

Is it Ur urethra stinging Anne??
Or where exactly???
If u could be more specific people will be able to 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: 17
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sat Sep 15, 2018 3:04 am

Eleda wrote:I had 6 LN effected, and after radiation 1 still remained so was removed within the musorectal envelope during surgery,,,

Yes Ann they can see the reaction to the radiation but it continues to work for weeks after, I think the peek ( no more shrinking after this time) time after radiation is 17weeks from day one

Also 28 is actually the normal amount of sessions, and it much depends on the amount of grey in each radiation session

Is it Ur urethra stinging Anne??
Or where exactly???
If u could be more specific people will be able to help,,,,,

ADELE x


Hi Adele
Well it felt like the worst case of cystitis in human history.. stinging/burning when passing water ! But to be fair 2 weeks now today after radio chemo stopped it is getting much better.. still stinging during BM from the burns but that is
Improving by the day. What is great is that all the symptoms from the actual tumour disappeared by week 2 of radio and haven't returned and my CEA was 2 during radio .. did you find all your symptoms disappeared Adele afte / during radio ? Now I am on the long wait of at least 10-12 weeks to see if completely disappeared or shrunk .. you do worry a bit about waiting such a long time ? I just wondered how much they knew during radio treatment as I got the feeling they knew more about your tumour response than they say. Did you still experience burning after radio ? That's interesting about the lymph nodes do you think radio sterilised the others or that they were not infected anyway ? Thanks so much Adele for your help xxx Annie

NHMike
Posts: 1700
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Sat Sep 15, 2018 8:11 am

I'm not Adele but two weeks after radiation I felt great. It was the most normal I've been on the journey. The tumor shrank over 90% so it was easy to go to the bathroom.
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

User avatar
susie0915
Posts: 840
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surviving radiation for rectal cancer

Postby susie0915 » Sat Sep 15, 2018 9:08 am

I also had that burning when urinating during radiation. Was horrible like passing glass. I had to use lidocaine gel to numb the area before I went. It took about two weeks to totally subside. I didn't have alot of symptoms before diagnosis, just some blood on my stool. But the sigmoidoscopy a few weeks after finishing radiation showed only scar tissue remained. I did still have surgery, and pathology showed minimal residual cancer cells. But the radiation did do the job which was to shrink the tumor to make surgery easier to preserve as much rectum as possible.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/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

Eleda
Posts: 157
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sat Sep 15, 2018 9:09 am

Hi Anne, as Mlike Mike said 2weeks later, nearly back to normal,,, only problem I was left with was ( self DX radiation induced stenosis)
Just before surgery in the theater I asked the nurse to use a small cathater during surgery due to the stenosis, and she said fine!!!!!!!!!,,, but in fact they called in the urologists after I was put to sleep, and they put in a larger one Which infact, worked a treat, and now I only have a sting if I hope my pee too long,,, but no other problems with that.... perfect flow " no pressure like before.....
So something to think about if Ur suffering with that , I also took cranberry capsules ( juice had too much sugar) and magnesium citrate to dilute the acid in the pee and ascorbic acid,
I know Ur thinking about chemo before surgery but I'd imagine it will b rough on Ur bum as I'm in the middle of chemo now and can see from the output in the bag if I had to actually dispell that myself ( I'd b crying in pain ) like being on radiation....m

I have all the products at the ready because I'm following mike's thread so expecting a rough ride after reversal

Hope this helps
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: 157
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sat Sep 15, 2018 9:19 am

In relation to lymph nodes, I believe they "were" infected because the last one was therefore I still concider that I've 6 effected even tho they are now all gone,
But I consider that they had time to travel through the bloodstream so chemo is necessary,,,, and in fact I'll take as much chemo as my body can cope with
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


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