Mop up chemo experiences

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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 Apr 07, 2018 12:43 am

Caat55 wrote:My oncologist wants to increase my dose of xeloda with the next infusion to a European dose. We would add 3 more pills twice a day. I am only going to do five rounds of the combined treatment.

Is this the treatment schedule that you are on (5 cycles total)?

    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
    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

For your information, here is my experience with the XELOX regimen (5 years ago):

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43268&p=309170#p309170

Are you keeping a log of your side effects progression? It might be useful to show a log to your oncologist after each cycle so that any overall pattern can be observed.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490
.

Caat55
Posts: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Apr 08, 2018 11:30 pm

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
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

I have been keeping track of my symptoms which seem to be all Oxal. related. It is strange to have the cold sensitivity turn off. I see the oncologist on either Monday or Tuesday after infusion so its fresh in my mind. I see your notes to drink lots of fluids, working that but it may also contribute to watery stools. Its hard to know what causes what, meds or diet?
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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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Mop up chemo experiences

Postby O Stoma Mia » Sun Apr 08, 2018 11:53 pm

Caat55 wrote:... I see your notes to drink lots of fluids, working that but it may also contribute to watery stools. Its hard to know what causes what, meds or diet?
S

NOTE: I don't think that champagne or wine count as fluids. In fact, I think they count in a negative way by causing dehydration - - which is just the opposite of what you want to accomplish.

Dehydration and Alcohol
https://gastrolyte.com.au/dehydration/dehydration-and-alcohol/

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Mon Apr 09, 2018 5:58 am

For me, the hands and feet kicked in after several cycles. The symptoms are better today, about 5 days after the last Xeloda pill for the cycle. It's probably progressive.
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: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Apr 09, 2018 11:18 pm

O Stoma Mia wrote:
Caat55 wrote:... I see your notes to drink lots of fluids, working that but it may also contribute to watery stools. Its hard to know what causes what, meds or diet?
S

NOTE: I don't think that champagne or wine count as fluids. In fact, I think they count in a negative way by causing dehydration - - which is just the opposite of what you want to accomplish.

Dehydration and Alcohol
https://gastrolyte.com.au/dehydration/dehydration-and-alcohol/



Good thing I don't like champagne and despite knowing the wine tastes good, it all tastes bad to me. I am happy with a sip of my husbands or tea. It was nice to enjoy some cold water after doing yard work. It was nice to be able to work in the tasting room, chat with guests and handle the wine bottles.

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: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Apr 09, 2018 11:19 pm

NHMike wrote:For me, the hands and feet kicked in after several cycles. The symptoms are better today, about 5 days after the last Xeloda pill for the cycle. It's probably progressive.

Good to know Mike. We are all just trying to make sense of this.
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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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Chemobrain experiences

Postby O Stoma Mia » Tue Apr 10, 2018 2:48 am

It seems that most of the experiences posted so far on this thread pertain to physical effects of chemo. However, there are other kinds of short- and long-term effects to consider. Some of these are more mental or emotional in nature.

One of the main enduring effects is called "chemo brain." It is one of 18 possible effects of chemo listed in the article cited below (and shown in the article's body diagram):

    1. Brain fog or “ chemo brain”
      Foggy thinking and memory problems are often referred to as having “ chemo brain.” This side effect can cause further anxiety and stress during your recovery.
    2. Anxiety and depression
    3. Hot flashes and menopause
    4. Weak heart
    5. Nausea and vomiting
    6. Discolored and cracked nails
    7. Loss of appetite
    8. Sexual dysfunction
    9. Skin sensitivity
    10. Hair loss
    11. Mouth sores
    12. Lower blood cell count
    13. Digestive distress
    14. Decreased urination
    15. Red urine
    16. Bone loss
    17. Poor coordination and tired muscles
    18. Swollen hands and feet
Reference: The Effects of Chemotherapy on Your Body
https://www.healthline.com/health/cancer/effects-on-body#1


What I would like to suggest is that all of you to pay some attention to the mental and emotional changes that you may notice over the course of chemo therapy. This is because there are some things that can be done right now, or measures that can be taken during therapy, that can help minimize the burden of chemo brain over the long term.

Here are some references on this:

Tips for Managing Chemobrain
http://www.dana-farber.org/health-library/articles/tips-for-managing-chemobrain/

Chemo Brain – Diagnosis and Treatment
https://www.mayoclinic.org/diseases-conditions/chemo-brain/diagnosis-treatment/drc-20351065

Understanding “Chemobrain” and Cognitive Impairment after Cancer Treatment
https://www.cancer.gov/about-cancer/treatment/research/understanding-chemobrain

10 Easy Ways to Overcome Chemo Brain Naturally
https://drheatherpaulson.com/overcome-chemo-brain/

Coping with 'chemo brain' – 5 tips for combating mental fogginess after treatment
https://www.fredhutch.org/en/news/center-news/2014/05/5-tips-for-combating-chemo-brain.html

Fighting Post-Treatment Fog: Chemo Brain Explained
https://www.healthline.com/health/chemo-brain#1

Caat55
Posts: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue Apr 10, 2018 11:30 pm

Does every one have the steroids with the infusion? What would happen if I skipped the steroids? Would the effects of the chemo be more immediate, would the crash be less or sooner?

My brain and my fingers are working in unison again. I have a bunch of special education evaluations to complete now that I am back to work, these are complicated kiddos.

On a positive note, my husband and I were totally on it tonight. 12-2 win at Bocce Ball. Not giving this treatment any more room to mess up my life.

And a rant.... why don't the vents work better? I am frustrated by this balloon on my belly. I cover it when showering but I know it gets plugged inside too no matter how frequently I empty this bag.

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: 1838
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Wed Apr 11, 2018 5:11 am

Caat55 wrote:Does every one have the steroids with the infusion? What would happen if I skipped the steroids? Would the effects of the chemo be more immediate, would the crash be less or sooner?

My brain and my fingers are working in unison again. I have a bunch of special education evaluations to complete now that I am back to work, these are complicated kiddos.

On a positive note, my husband and I were totally on it tonight. 12-2 win at Bocce Ball. Not giving this treatment any more room to mess up my life.

And a rant.... why don't the vents work better? I am frustrated by this balloon on my belly. I cover it when showering but I know it gets plugged inside too no matter how frequently I empty this bag.

S


The steroids control nausea for about three days. In the beginning, that’s good enough, but the nausea effects are longer with subsequent infusions so you need other anti—nausea meds or you just suffer.

The vents don’t work if liquid gets on either side. So if it.stuff inside the bag gets there, then it gets clogged. That happens when you lie down. I sleep inclined and that helps a bit. If you have a two-piece system, then you can do what is called burping the bag. There should be a tab at the top right that you can pull to let gas out and then close it again.
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 » Wed Apr 11, 2018 12:24 pm

Caat55 wrote:Does every one have the steroids with the infusion? What would happen if I skipped the steroids? Would the effects of the chemo be more immediate, would the crash be less or sooner?

My brain and my fingers are working in unison again. I have a bunch of special education evaluations to complete now that I am back to work, these are complicated kiddos.

On a positive note, my husband and I were totally on it tonight. 12-2 win at Bocce Ball. Not giving this treatment any more room to mess up my life.

And a rant.... why don't the vents work better? I am frustrated by this balloon on my belly. I cover it when showering but I know it gets plugged inside too no matter how frequently I empty this bag.

S


I hate that balloon feeling too! I use a 2 piece system now (like tupperware) and can burp the bag to release air if needed. You're right about the vents, they really don't do much.

I have been able to reduce my steroid dosage over time because my current chemo isn't causing nausea so you have to discuss with your doctor. I would like to quit steroids entirely but have been too chicken to try! Good win at Bocce Ball, glad that you can enjoy yourself!
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: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed Apr 11, 2018 7:10 pm

I hate that balloon feeling too! I use a 2 piece system now (like tupperware) and can burp the bag to release air if needed. You're right about the vents, they really don't do much.
I have been able to reduce my steroid dosage over time because my current chemo isn't causing nausea so you have to discuss with your doctor. I would like to quit steroids entirely but have been too chicken to try! Good win at Bocce Ball, glad that you can enjoy yourself![/quote]

I use the two piece two but when it swells up in a public place it just so obvious, have to sneak away to a restroom to burp it. I will ask on Tuesday as I haven't experienced any nausea and I was practically stoned after chemo last time but will see what tomorrow brings.

Bocce is a great sport, you can talk, eat and drink and still play.
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: 1838
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Wed Apr 11, 2018 7:42 pm

Caat55 wrote:I hate that balloon feeling too! I use a 2 piece system now (like tupperware) and can burp the bag to release air if needed. You're right about the vents, they really don't do much.
I have been able to reduce my steroid dosage over time because my current chemo isn't causing nausea so you have to discuss with your doctor. I would like to quit steroids entirely but have been too chicken to try! Good win at Bocce Ball, glad that you can enjoy yourself!


I use the two piece two but when it swells up in a public place it just so obvious, have to sneak away to a restroom to burp it. I will ask on Tuesday as I haven't experienced any nausea and I was practically stoned after chemo last time but will see what tomorrow brings.

Bocce is a great sport, you can talk, eat and drink and still play.
S[/quote]

Yes, you need to find a private place to do it at. I've taken to wearing XL shirts for the length and just lift it up and burp it and then close it back up. I will do it in my office sometimes (I can close and lock the door and just face away from the window in the door).
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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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Day 22 - Start of Cycle 2

Postby O Stoma Mia » Thu Apr 12, 2018 10:43 am

    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
    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
Start of Cycle 2 today. Do you have any sort of recap or summary of your Cycle 1 experience?

Caat55
Posts: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Fri Apr 13, 2018 1:18 am

Round one: First bite, bothered by cold began at the end of first evening, not intolerable but noticeable. Claw arms and hands two day, last about 3 or 4 days. Intolerance for cold kicked in big day after chemo, lasted about 12 days. Was able to drink cold liquids, touch things normally by day 14. I was tired but able to push through it. Returned to work full time on day 18. No nausea, no diarrhea.

Round two: Symtoms started almost as soon at bag started to go. I felt the intolerance for cold almost immediately. The fan that was on for hot flashes caused my throat to swell and make breathing by mouth impossible, lost my speech, which was corrected after fan was turned off and nurse brought me a heated rice pillow. Hand and arm cramps. Tingling in hand and thighs. Eyes watered and got stuck. Words also get stuck, hard to form almost like asleep from dentist. No nausea but stomach pain like from wearing uncomfortable clothes. HOT FLASHES ARE CRAZY INTENSE!!!!

I can't believe how quickly that stuff goes through you. I had to pee seven times.

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

Re: Mop up chemo experiences

Postby O Stoma Mia » Fri Apr 13, 2018 2:26 am

Here are a couple of threads on throat tightness and breathing problems while on oxaliplatin:

So is this normal after only one infusion of Oxi?
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50202&p=383259#p383259

Throat tightness on FOLFOX
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44314&p=319153#p319153


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