Mop up chemo experiences

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Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Thu May 24, 2018 9:32 am

I have my previous scheduled appt. in three weeks. I will reschedule the fifth one. I guess I don't even take Xeloda during this time. Mike , you did or did not on your oxi break? They will call me if they have a cancellation but so long as it isn't really hurting outcome, honestly I don't mind the break.
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

NHMike
Posts: 1729
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Thu May 24, 2018 9:40 am

Caat55 wrote:I have my previous scheduled appt. in three weeks. I will reschedule the fifth one. I guess I don't even take Xeloda during this time. Mike , you did or did not on your oxi break? They will call me if they have a cancellation but so long as it isn't really hurting outcome, honestly I don't mind the break.


I have had 7 cycles of Xeloda and the final one starts next week.

I had 6 cycles of Oxaliplatin so we skipped on (#4 or #5) and we aren't doing it for #8.

I had two one-week breaks because my bloods weren't great and I was feeling awful.
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

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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 » Thu May 24, 2018 12:08 pm

Susan,

I hope this unexpected break will make your trip even more enjoyable but I can understand wondering if it's "okay". Will your doctor or a nurse be contacting you abour your concerns?

Hope you get some answers so you don't have to worry for nothing.

Have a good day, enjoy the sunshine if you're getting any... overcast and gloomy here

Take care,
Shana
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: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Thu May 24, 2018 2:03 pm

NHMike wrote:
Caat55 wrote:I have my previous scheduled appt. in three weeks. I will reschedule the fifth one. I guess I don't even take Xeloda during this time. Mike , you did or did not on your oxi break? They will call me if they have a cancellation but so long as it isn't really hurting outcome, honestly I don't mind the break.


I have had 7 cycles of Xeloda and the final one starts next week.

I had 6 cycles of Oxaliplatin so we skipped on (#4 or #5) and we aren't doing it for #8.

I had two one-week breaks because my bloods weren't great and I was feeling awful.


So I have not heard back from oncologist despite a promise of a call last night or this morning, I called again and left another message. I guess I will proceed with taking the xeloda? Not sure but it seems that it's a standard course.
Argggggggg
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

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Mop up chemo experiences

Postby O Stoma Mia » Sat May 26, 2018 3:48 am

Caat55 wrote:...
So I have not heard back from oncologist despite a promise of a call last night or this morning, I called again and left another message. I guess I will proceed with taking the xeloda? Not sure but it seems that it's a standard course...

Just a couple of questions: Your Round#4 infusion was canceled/deferred, but have you had your pre-Round#4 blood test yet? Are all your tests still within the normal range? Are you sure that your body can handle another 14 days of Xeloda right now? What does your doctor say?

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue May 29, 2018 10:02 am

What a lovely weekend without Oxil. I got to be the driver for my husband's colonoscopy. He came out fine, asking for pancakes, biscuits and gravy...what a difference from me thank God. We had a pick up event at the winery for which I am responsible, it went great. We had a dozen friends for dinner, able to enjoy the food though wine tastes all the same so don't bother with in. Chocolate also tastes bad. We had Air BNB guests for the three day weekend, fun to chat. Played a round of disk golf, gardened and yesterday working in the tasting room. A normal weekend at last. Can't wait for this to be the normal and not the exception.
I have my supplies precut for airplane. Taking extra just in case. Also going to avoid anything with bubbles on plane as it seems to go right through me. I have my storma and my port cards for airline. We are typically PreTSA. I will have to get a new Passport with maiden name as California drivers licenses won't be good for drive and my passport has old married name, I use maiden name again now.
I guess putting off infusion was a good thing. The sxeloda doesn't bother me at all. I have started taking it at end of meal rather than after as it seems to be cause of ump on my chest if I wait full 30 minutes.

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

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

Re: Mop up chemo experiences

Postby Shana » Tue May 29, 2018 2:19 pm

Sounds like a great weekend! So glad that you are feeling good and able to enjoy :)

Have a great vacation!

Shana
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: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue May 29, 2018 2:50 pm

Shana wrote:Sounds like a great weekend! So glad that you are feeling good and able to enjoy :)

Have a great vacation!

Shana

Thanks! Hope you get some nice weather, also answers to your questions and a plan forward,
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

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sat Jun 02, 2018 9:52 pm

Slow day, only 14000 steps. So hot and muggy. Finally raining. Great vacation so far. Managing in public restrooms, planes, trains, etc.
Grabbed wrong bags so ordered some delivered to the Amazon locker on the corner. Might not need them but better safe. Next time attach all the parts to pieces to make sure I have right stuff.

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

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed Jun 13, 2018 9:51 am

Well it is that time again, going in for lab work today in anticipation for Oxil. Infusion again tomorrow. My daughtergavemesugfestions for a new book, will read or listen tomorrow. Dread is not even close to describing how I feel. I am so lucky to have friends that drive me, the five hours in the chair wastes me and I have felt loopy afterwards, don't like to do tow lane hilly roads home driving myself. Got the gummy CBDs for nausea ready this time.

I will changes to easiest bag tomorrow before I go, Mio Sentra tabs are easy on fingers for emptying, cleaning for me when clumsy. Does anyone else find they have different preferences depending on what they are up to?

My radiated skin got bad again after pool, heat, who knows. Going to see gynecologist next week to follow up on some bleeding after sex, hot flashes.

My quality is life is actually good on outside, I keep my complaints to myself and all of you. Getting exercise, enjoying friends, great vacation, attended a family wedding where those in the know were blown away by how good I look.
I have a four week break from school, only working about 6 hours a week with my special kids. Have a couple of big events at Winery I am responsible for and it's a busy time for our Air BnB, so no time for welding sorry.

It is supposed to get close to 100 again today. I don't like being hot but even 6 weeks out from last treatment, AC makes me get rocks in my throat. I can drank ice tea, cold beverages but that will change tomorrow.
Off to play ball with dog in park. Walks are curtailed till he gets rattlesnake vaccine on Friday, can't be too careful.

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

NHMike
Posts: 1729
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Wed Jun 13, 2018 10:19 am

Caat55 wrote:Well it is that time again, going in for lab work today in anticipation for Oxil. Infusion again tomorrow. My daughtergavemesugfestions for a new book, will read or listen tomorrow. Dread is not even close to describing how I feel. I am so lucky to have friends that drive me, the five hours in the chair wastes me and I have felt loopy afterwards, don't like to do tow lane hilly roads home driving myself. Got the gummy CBDs for nausea ready this time.

I will changes to easiest bag tomorrow before I go, Mio Sentra tabs are easy on fingers for emptying, cleaning for me when clumsy. Does anyone else find they have different preferences depending on what they are up to?

My radiated skin got bad again after pool, heat, who knows. Going to see gynecologist next week to follow up on some bleeding after sex, hot flashes.

My quality is life is actually good on outside, I keep my complaints to myself and all of you. Getting exercise, enjoying friends, great vacation, attended a family wedding where those in the know were blown away by how good I look.
I have a four week break from school, only working about 6 hours a week with my special kids. Have a couple of big events at Winery I am responsible for and it's a busy time for our Air BnB, so no time for welding sorry.

It is supposed to get close to 100 again today. I don't like being hot but even 6 weeks out from last treatment, AC makes me get rocks in my throat. I can drank ice tea, cold beverages but that will change tomorrow.
Off to play ball with dog in park. Walks are curtailed till he gets rattlesnake vaccine on Friday, can't be too careful.

Susan


A lot of that sounds absolutely normal. I know that it isn't but that's a lot of normal for cancer treatment.

I have a variety of bags but I just stick to what works best overall at the time. I have the Mios but I've never tried them - I guess what the nurses give you has a strong impact on what you use. I wouldn't be surprised if there were better things for specific purposes.
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: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed Jun 13, 2018 11:33 am

I got a ton of samples from the three major makers, Hollister, Coloplast, And Convex. Came with great bags that I keep in car, desk or purse with scissors, mirror, and storage for extra wafers, pouches, powders, etc. Stanford set me up with Hollister, but I have tried them all. One pieces are great for travel, less to manage. Closed pouches for water sports that I can swap with a regular one once out of water(Hollister). Got a lightweight coloplast that is great on hot days, dries quickly after showers.
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

NHMike
Posts: 1729
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Wed Jun 13, 2018 11:58 am

Caat55 wrote:I got a ton of samples from the three major makers, Hollister, Coloplast, And Convex. Came with great bags that I keep in car, desk or purse with scissors, mirror, and storage for extra wafers, pouches, powders, etc. Stanford set me up with Hollister, but I have tried them all. One pieces are great for travel, less to manage. Closed pouches for water sports that I can swap with a regular one once out of water(Hollister). Got a lightweight coloplast that is great on hot days, dries quickly after showers.
S


I think that experimentation is great and I do have samples - just never got around to trying them. I actually dislike changing the bag which is why I put it off as long as I think reasonable. I had difficulties getting samples when I started out but I spoke with the WOC nurse and she got them to send me samples. The little bags are nice - I have one which I carry around in my backpack. There are many here that have experimented around and found the products that work best for them for specific purposes. I've been a bit lazy in that area.
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
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Mop up chemo experiences Cycle 5

Postby O Stoma Mia » Wed Jun 13, 2018 11:56 pm

    XELOX (CAPEOX) Treatment Schedule

    Cycle 1 Infusion: March 22, 2018- Day 01
    Cycle 2 Infusion: April 12, 2018 - Day 22
    Cycle 3 Infusion: May 3, 2018 - Day 43
    Cycle 4 Infusion: May 24, 2018 - Day 64 (Note: Oxaliplatin infusion skipped on Cycle 4)
    Cycle 5 Infusion: June 14, 2018 - Day 85◄◄◄
    Last Xeloda pill: June 28, 2018 - Day 98
    End of TX cycle: July 5, 2018 - Day 105

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences Cycle 5

Postby Caat55 » Thu Jun 14, 2018 9:50 am

O Stoma Mia wrote:
    XELOX (CAPEOX) Treatment Schedule

    Cycle 1 Infusion: March 22, 2018- Day 01
    Cycle 2 Infusion: April 12, 2018 - Day 22
    Cycle 3 Infusion: May 3, 2018 - Day 43
    Cycle 4 Infusion: May 24, 2018 - Day 64 (Note: Oxaliplatin infusion skipped on Cycle 4)
    Cycle 5 Infusion: June 14, 2018 - Day 85◄◄◄
    Last Xeloda pill: June 28, 2018 - Day 98
    End of TX cycle: July 5, 2018 - Day 105

According to oncologist, i will have kast cycle of infusion now on July 5th. He still wants me to try 5 for a total of 24 weeks of chemo, 120 days.
How do ypu keep track of us all? Thank you.
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


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