Symptom stages

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Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Symptom stages

Postby Eleda » Sun Jan 14, 2018 11:49 am

Hi all, I've gone through most of ur posts but just need some reassurance ATM from people who have been there.
Tomorrow will be day 9 of my chemoradiorherpy
3days
5days
Back to week 3 tomorrow
Of 25( 35grey)

So far no ill effects only a UTI, I THINK??
I have my period so can't determine where, the blood is, from ATM
Every hole is bleeding ffs lol :lol:
Anyway, I can deal with that ( lots of cranberry)
My main 2 questions are

Is this, a false sence of security????
When will the major side effects begin( 1650mg zeloda2 x day also)

My bleeding between poos has stopped and normal every other day or 2 po has returned
But I'm finding lots, of clear mucus, that I never had before!!!!!
Don't know if this is "normal"


How do u monitor ur po?
Do u go in a tub and then check??? Because I find looking in the toilet none effective :(

I've also read a post in relation to reconnection after resection
My neighbor had it done with the risk of major infection ( which she got)
Has, anyone successfully attempted this and if so did the risks outweigh a bag for 6 months
Thanks Adele
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: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Symptom stages

Postby susie0915 » Sun Jan 14, 2018 1:50 pm

I did fine with radiation/xeloda until about the last couple weeks. Severe pain when I would urinate and basically a charred bottom. I soaked in a tub once or twice a day, and the radiation oncologist gave me lidocaine that I would use to numb the area so I could urinate without pain. Worked great. I really didn't have any issues with the xeloda just mostly pain from the radiated area. It is cumulative so will get worse as time goes on. Just be sure to talk to your radiation oncologist so they may be able to help with it. Mine even offered oxycodone for pain but I was fine with Advil.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Symptom stages

Postby AppleTree » Sun Jan 14, 2018 3:15 pm

When I had radiation, I took an anti spasm medication. My feeling was I had a UTI, but labs said no. The anti spasm medication made that feeling go away. Report every new thing to your DRs...they have all sorts of creams and meds to help you along the way, as needed.

Make sure you use your hand/foot cream too!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Symptom stages

Postby Lee » Sun Jan 14, 2018 3:47 pm

Eleda wrote:So far no ill effects only a UTI, I THINK??

Has, anyone successfully attempted this and if so did the risks outweigh a bag for 6 months
Thanks Adele


Talk to your Onc. When I was on chemo, I thought I had a UTI, mentioned something to the Onc about see my PCP to get it checked out. She said it's probably a yeast infection, gave me a script. Yep 24 hrs later, it was mostly gone.

Chemo causes a lot of diarrhea, having a bag can help control accidents.

This was 14 yrs ago, a lot of advancements have been made, I started having accidents weeks into my radiation treatment. I had no control by the time I finished radiation. When I saw my surgeon, was told me 2/3 of my rectal muscles were gone. No wonder :shock: Anyway I have a permanent colostomy today. That bag gave me my life back.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Symptom stages

Postby Eleda » Sun Jan 14, 2018 4:36 pm

I've already been checked for UTI and yeast infection
None have come up positive
It's like pissing fire ( typical UTI SYMPTOMS)
I'll bring a sample tomorrow to radiation
And I think I've swollen left side groin nymph now also as it's very tender on the left so somthimg is deffo going on.
Think I just, assumed first symptoms would be skin burning
I've no dioreah !! accept increased mucus???In fact it's, the opposite,, "NORMAL" LOL if there's such a thing
Thanks Adele
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: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Symptom stages

Postby susie0915 » Sun Jan 14, 2018 4:48 pm

I thought the same the urinary tract infection but was negative. I think it's just the tissue burned from radiation and when urine hits it's like passing glass. The lidocaine was awesome, I would dab it up in there before I urinated and it numbed the area otherwise I wouldn't have drank anything because the pain was so awful. Ask your dr tomorrow for lidocaine it's a gel it really works well so you can go without pain. My clinic had tubes and tub es of it in there office they would just hand me a few whenever I asked.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Symptom stages

Postby Eleda » Sun Jan 14, 2018 6:40 pm

Thanks Sussie
She gave me a jel to help to run on the outside,
it has lidocane in it so will ask if I can squeeze it in because its, painful the whole UT
Don't know how to upload a picture but it's called optilube active( 1g lidocane in 11g syrynge)
Thankfully my bum is not bothering me yet :( :( :(
Adele
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: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Symptom stages

Postby susie0915 » Sun Jan 14, 2018 7:14 pm

it would just take a little to put up there and numb it so I could go. Mine was 2% Lidocaine hydrochloride jelly. I kind of just figured it out on my own and told the doctor what I was doing and he was okay with it. Good luck, I know how awful that is.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Symptom stages

Postby Eleda » Mon Jan 15, 2018 12:53 pm

Thanks susie
Just out and apparently there is an infection there, I brought another urine sample today so starting ABX tomorrow for a week. Ouch :( :( :(
First world problem lol
Adele
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: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Symptom stages

Postby susie0915 » Mon Jan 15, 2018 1:44 pm

Good. I'm glad you got some meds. Hope you will feeling better soon
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Symptom stages

Postby Caat55 » Mon Jan 15, 2018 9:47 pm

Eleda,
I had a period during the first month of chemo/radiation, it was my last, doctor said I would have no more and he was right. Welcome hot flashes. No diarrhea. No more signs of blood. Tired. Peeing was painful. Developed a fissure so BM were like passing razor blades. The only relief was a bath several times a day. I am one month out from treatment, still occasionally issues. Skin is healing but still red.
Be diligent about the lotion on your hands and fingers. Mine cracked a little but never painful but it happens a lot according to oncologist. Mine now look water logged and without finger prints.
Its a process and this group is just a blessing.
Do at 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, 5/20

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Symptom stages

Postby Eleda » Tue Jan 16, 2018 4:37 am

Thanks caat,
Mine won't seem to go away ATM lol
And if go Menaoausal ( Im hoping to have them removed in surgery)
If the sting FROM the UTI would go away is b pretty much asymptomatic
Apart from the hangover head I seem to have every morning ( so tired)
I am diligent with the creams and TBF the team are great to PX anything u need to make the ride a bit easier
Good luck with ur surgery end of the month, I'll b following ur progress!!! Do u know what procedure u will b having???
Adele
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

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

Re: Symptom stages

Postby BethD » Wed Jan 17, 2018 1:14 pm

My radiation nurse recommended pyridium to help with the burning sensation when I pee.
My radiation team also had me use dilators during treatment to help keep my vaginal tissue out of the radiation field and help prevent stenosis.
I had my period in October during the start of radiation, and that's been the last one. Hot flashes started in late December.
Definitely keep up with the creams. I mixed calendula, coconut oil, olive oil and RSO and shaped this cream into a little bolus shape that I would put in the freezer. It was a relief to apply it cold.
Rinsing with the peri bottle and lots of baths helped too.

Beth
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Symptom stages

Postby Eleda » Wed Jan 17, 2018 6:51 pm

Thanks Beth, so far apart from lathergy, I've no other side effects,, , burning turned out to be a UTI, so I've an abx for that now
Tomorrow will b session 12 so at least I'm half way without any major problems
They gave me dialators but said wait till at least 3 weeks after radiation finishes
Then use them 3 times a week till whenever :o
When did u start feeling menopause???
I'm just waiting for all these things to kick me at once lol
Adele
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: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Symptom stages

Postby Caat55 » Wed Jan 17, 2018 9:18 pm

Adele,
I had a period in October, which was my last. Hot flashes started in late December. I throw all the blankets on my husband and am grateful it's winter so I cool down. My radiation got bad about 2/3 of way through. I am very fair and my skin was very burned. I haven't worn anything but skirts since mid. November. Surgeon suggested he would take everything out if my genetics testing was positive. Not sue how I feel about that!
I worked full time all though but couldn't wait to get to bed, slept easily 8 to 10 hours a night.
Hold tight, you can do this

S
Do at 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, 5/20


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