Mop up chemo experiences

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Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Thu Jul 05, 2018 9:35 pm

heiders33 wrote:Congrats! I remember that 5th cycle being an absolute whammy. So glad that you are done! Go out and celebrate!

Whammy is right. Nausea right off even with whatever I got iv. This response is taking me forever to type due to claw hand, uncooperative fingers.
I can't wait to celebrate.
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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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Mop up chemo experiences

Postby Atoq » Fri Jul 06, 2018 2:56 am

Caat55 wrote:Just finishing round five, last one. Symptoms come on so quickly now. This time already experiencing nausea and fatigue. Skin down there bleeds when I blot after peeing. Everything is so fragile.
Good news though, we ordered aTesla 3 four years ago when released, wepick up tomorrow. Something to look forward to, new car smell, long gasfree drives with husband as we explore Tesla network
Susan

Congratulations! Both for the last round of chemo and the new car!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Fri Jul 06, 2018 11:59 am

:D
Thank you
Atoq wrote:
Caat55 wrote:Just finishing round five, last one. Symptoms come on so quickly now. This time already experiencing nausea and fatigue. Skin down there bleeds when I blot after peeing. Everything is so fragile.
Good news though, we ordered aTesla 3 four years ago when released, wepick up tomorrow. Something to look forward to, new car smell, long gasfree drives with husband as we explore Tesla network
Susan

Congratulations! Both for the last round of chemo and the new car!

Claudia
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

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: Mop up chemo experiences

Postby retiredteacher » Sat Jul 07, 2018 8:11 pm

Congrats! Last one! Report from the front: wine will be TASTY again in five weeks!
Terri
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

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susie0915
Posts: 861
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Mop up chemo experiences

Postby susie0915 » Sun Jul 08, 2018 8:15 am

Congrats on completion! Such a great feeling when you're done.
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

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Mop up chemo experiences

Postby Shana » Mon Jul 09, 2018 1:27 pm

Congrats! Time to celebrate on your success!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Jul 09, 2018 5:08 pm

So I just came from oncologist's office. He ordered a CEA level and said I don't to any other tests until I come back in six months. That seems a long time. How do I know what's going on inside? Effectiveness of chemo?
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Jul 09, 2018 5:54 pm

Shana wrote:Congrats! Time to celebrate on your success!

How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
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

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Mon Jul 09, 2018 6:19 pm

Caat55 wrote:
Shana wrote:Congrats! Time to celebrate on your success!

How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S


This is the surveillance schedule that my oncologist at Dana Farber recommended:

Three months after you complete the chemo, we will perform a CT scan to make sure you are disease free and then plan for ileostomy reversal and port removal. I or my NP will see you every 3 months for two years and every 6 months for 3 years thereafter. [surgeon] will perform a colonoscopy 6-9 months after ileostomy reversal and usually yearly thereafter for at least two years. CT scans annually for 3 years.

I had a CT scan this week because my CEA accelerated above normal levels but my oncologist at Dana Farber would have ordered one three months after the end of chemo. The schedule is off from his suggestion because the surgeon said that she could do the reversal one month after the end of chemo. I am going to have the Barium Enema (that doesn't use Barium) and I assume that that is some kind of scan as well.

You might ask your oncologist what his or her surveillance protocol is.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Jul 09, 2018 6:46 pm

NHMike wrote:
Caat55 wrote:
Shana wrote:Congrats! Time to celebrate on your success!

How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S


This is the surveillance schedule that my oncologist at Dana Farber recommended:

Three months after you complete the chemo, we will perform a CT scan to make sure you are disease free and then plan for ileostomy reversal and port removal. I or my NP will see you every 3 months for two years and every 6 months for 3 years thereafter. [surgeon] will perform a colonoscopy 6-9 months after ileostomy reversal and usually yearly thereafter for at least two years. CT scans annually for 3 years.

I had a CT scan this week because my CEA accelerated above normal levels but my oncologist at Dana Farber would have ordered one three months after the end of chemo. The schedule is off from his suggestion because the surgeon said that she could do the reversal one month after the end of chemo. I am going to have the Barium Enema (that doesn't use Barium) and I assume that that is some kind of scan as well.

You might ask your oncologist what his or her surveillance protocol is.


Thanks MIke, see you again in six months just didn't sound right. I will email my surgeon and second opinion oncologist to see what their protocal is as well.
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

Soccermom2boys
Posts: 195
Joined: Tue Nov 10, 2015 10:29 pm

Re: Mop up chemo experiences

Postby Soccermom2boys » Tue Jul 10, 2018 12:39 am

Caat55 wrote:How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S


First and foremost, CONGRATS on completing your tour of duty! Yay! It probably feels surreal right about now when you look back on what all you have been through this past year. I completed my last chemo treatment two years ago and sometimes it’s still hard to mentally wrap my brain about what all I went through and how it made me feel. This is definitely an experience that sticks with you over time.

I had a CT scan one month after my last treatment and only because I had a slightly enlarged spleen (which can happen from the FOLFOX treatment) was I able to get a CT scan authorized by insurance at the six month post chemo stage. Now the first year after my last treatment, I had blood work done and met with either my oncologist or a nurse practitioner every three months at the center to review results and discuss side effects, etc. My CEA is not a good marker for me as it was something like 1.6 at diagnosis, but I still get it measured per the protocol. So now I do a CT scan just annually (just met today with onc and am still NED :D ) and also meet at the six month mark with the nurse practitioner and have blood work done then as well. I will do this until I am five years out from last treatment as long as everything continues to show NED. I have never had a PET scan—only CT scans of chest/abdomen/pelvis and only had one MRI after initial diagnosis from colonoscopy.

It can be a scary feeling thinking there is no active looking for cancer, but I choose to look at it as freeing—free from treatment for another six or twelve months. :wink: Enjoy your new found freedom!
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

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Mop up chemo experiences

Postby Eleda » Sun Jul 15, 2018 8:15 am

Hi guys, while im delighted to see u all come through this alive and kicking,,, I on the other hand am n the horrors
I'm post 1st FOLFOX chemo 5 days,,, while I thought I would choak to death day after disconnect, Thursday
Today Sunday I feel kinda" normal"

As per New European protocol, I'll do 4 months but, and a big BUTT, it looks as u guys across the pond do evey 3 weeks where as I do 2 week cycles so effectively the same thing ( 8 rounds)

My question is will it continue like this where I get a break from the torture in-between???? Or is this a false sense of security????
This I think I can cope with if it doesn't get any worse!!!

I can't drink on my bad 3 days so going to ask for a bag of fluids on disconnect day( base ball in troath) like u Sharon.....

They already add magnesium to the chemo on infusion day, so t least I'm not concerned about elecroites and take a slow release sodium tablet belong to my son

Hot regular tea seems to be my only thing to drink but can't get n 2lt of that
Any help would be great
Thanks Adele
Last edited by Eleda on Sun Jul 15, 2018 11:30 am, edited 3 times 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

Soccermom2boys
Posts: 195
Joined: Tue Nov 10, 2015 10:29 pm

Re: Mop up chemo experiences

Postby Soccermom2boys » Sun Jul 15, 2018 10:16 am

Hi Eleda—

I too did eight rounds of FOLFOX. Not everyone does the Xelox regimen with the pills—I barely made it out alive taking all of those Xeloda pills during radiation, no way was I going to be able to do all that was needed for the Xelox regimen. As for the rebounding on your off weeks, I was pretty similar to your first experience. I always did infusions on Mondays and disconnects on Wednesdays and by the following week I felt as normal as was possible. I could drink cold drinks again. I was fortunate in that I was never nauseated during all 8 rounds. For me, the biggest issue was probably keeping hydrated—the last four rounds I would stay longer at the center after disconnect and have them give me a bag of fluids for safe measure. I also had to have Neulasta shots after most of my rounds because my red blood cell count was on lower end. I never had more than the usual pins and needles feelings in my hands due to the cold sensitivity, but right as I was starting last infusion the neuropathy started in my feet and the tingling in hands also started to increase. Took about 8-12 months post chemo to not have tingling in hands anymore, but over two years out and my feet are not back to normal so I can’t assume that will change. However, they are not really hurting, just more of an odd feeling that does not thankfully restrict me from walking and running, etc. it’s amazing the spectrum of experiences from these drugs, no two people have quite the same experience. I hope you continue on with the next seven rounds being as relatively low-key as possible. :D
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

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Sun Jul 15, 2018 10:40 am

Eleda wrote:Hi guys, while im delighted to see u all come through this alive and kicking,,, I on the other hand am n the horrors
I'm post 1st FOLFOX chemo 5 days,,, while I thought I would chick to death day after disconnect, Thursday
Today Sunday I feel kinda" normal"

As per New European protocol, I'll do 4 months but, and a big BUTT, it looks as u guys across the pond so evey 3 weeks where as I do 2 week cycles so effectively the same thing ( 8 rounds)

My question is will it continue like this where I get a break from the torture in-between???? Or is this a false sense of security????
This I think I can cope with if it doesn't get any worse!!!

I can't drink on my bad 3 days so going to ask for a bag of fluids on disconnect day( base ball in troath) like u Should.....

They already add magnesium to the chemo on infusion day, so t least I'm not concerned about elecroites and take a slow release sodium tablet belong to my son

Hot regular tea seems to be my only thing to drink but can't get n 2lt of that
Any help would be great
Thanks Adele


The two full options are:

8 Cycles of Xeloda + Oxaliplatin for three weeks per cycle = 24 weeks or about six months
12 Cycles of FOLFOX for two weeks per cycle = 24 weeks or about six months

So folks on Xeloda + Oxaliplatin for 8 cycles is the equivalent of FOLFOX for 12 cycles.

I had two one-week breaks for low lab numbers or where I wasn't feeling well.

The electrolytes are a good idea - I needed them daily for a while after an infusion.

Finding enough hot things to drink was a problem that I had as well. Soup, hot chocolate (with low sugar), tea, coffee, hot orange juice, ginger slices in hot water - tried lots of things. An electric kettle came in very handy.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Jul 15, 2018 4:47 pm

Eleda wrote:Hi guys, while im delighted to see u all come through this alive and kicking,,, I on the other hand am n the horrors
I'm post 1st FOLFOX chemo 5 days,,, while I thought I would choak to death day after disconnect, Thursday
Today Sunday I feel kinda" normal"

As per New European protocol, I'll do 4 months but, and a big BUTT, it looks as u guys across the pond do evey 3 weeks where as I do 2 week cycles so effectively the same thing ( 8 rounds)

My question is will it continue like this where I get a break from the torture in-between???? Or is this a false sense of security????
This I think I can cope with if it doesn't get any worse!!!

I can't drink on my bad 3 days so going to ask for a bag of fluids on disconnect day( base ball in troath) like u Sharon.....

They already add magnesium to the chemo on infusion day, so t least I'm not concerned about elecroites and take a slow release sodium tablet belong to my son

Hot regular tea seems to be my only thing to drink but can't get n 2lt of that
Any help would be great
Thanks Adele

Adele,
I haven't seen you post in a while, glad to hear you made it through first round.

I also had, have the rock in my throat which doesn't go away, a fan or cool temps make it worse. My tongue and roof of mouth feel funny as well. I can only tolerate warm liquids. My feet and hands are intolerant of cold, I wear garden gloves, New of course, to hold veggies, eggs when preparing meals? Sadly, each infusion is a little more challenging. I went Thursday, pooped out Saturday and Monday back to work. This final time, sick immediately and for about 7 days.

Started an strengthening program for pelvic work, abs and glutes yesterday. A 12 week course to prepare for reversal. I have to schedule a barium enema according to surgeon.

I can't wait to be able to tolerate cool, want to go kayaking and enjoy some time camping. I notice I don't heal well if nicked, bumped or mosquito bit.

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


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