Mop up chemo experiences

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Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Mop up chemo experiences

Postby Caat55 » Sun Mar 25, 2018 12:14 pm

Starting a new thread cause I an feeling different with this hopefully, last course of treatment. I started oxaliplatin and Xeloda Thursday. My hands and feet are tingling if even a little chilled. Calves feel cramped as do forearms. I tried to work on some reports but my hands don't like the position of typing. Really, I just want to sleep. Does this last the whole of the treatment, does it get better with time away from infusion? I got in nearly 10000 steps yesterday but what a struggle cold air has me freathing like croup. This isn't me.
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

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

Re: Mop up chemo experiences

Postby heiders33 » Sun Mar 25, 2018 1:36 pm

I had all the same experiences you had, except my struggle with cold air was a tingling in my throat, not so much trouble with breathing. I didn’t feel like myself and had to spend a lot of time in bed for a few days afterward. Lots of intermittent tingling in my hands and feet even when I wasn’t cold. Believe me, it’s normal and it does go away. Just watch out for any persistent numbness or tingling and let your onc know. I am now over a month out from chemo and the only lasting side effect is mild tingling in my feet if I stress them out too much or when they touch the cold floor in the morning. I also get a strange sensation in my feet from time to time, not painful. All that to say, yes the side effects suck but they do pass. Hang in there and feel free to vent here any time. We all get it! Also, drink a lot of water and electrolytes to help with hand and calf cramps.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4

Lee
Posts: 5621
Joined: Sun Apr 16, 2006 4:09 pm

Re: Mop up chemo experiences

Postby Lee » Sun Mar 25, 2018 5:49 pm

Cold will effect you. Can you wear something around your throat when you are outside. Where are you? Hopefully spring is around the corner and the weather will get a lot better.

Because you are a stage III you really want to get a few cycles of Oxaliplatin under your belt. Is there a chance you could stop the pills and go on the pump. For some people, the side effect are not as bad on the pump. Talk to your Onc, sometimes they can reduce the dose of the Oxaliplatin.

For me, my personal experience, the side effect increased with each passing cycle. You are doing the right things in exercise, as that is suppose to help ease the side effects.

A few people on this forum have found great success with side effect by fasting. Some how by fasting a day or two prior to infusion, it shuts down the healthy cells and thus the cancer cells get all the chemo. If you do a search on the tab "Search this Forum" under fasting, I believe you will find someone recently who has found fasting the way to go.

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 - 10 years and counting!

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Mar 25, 2018 7:47 pm

Thanks Lee and Heider. I will ask my oncologist tomorrow about the fasting. I will also try to drink as much water, tea, etc. as I can and flush this stuff out. Sat outside in the sun for a bit today, than a cloud pulled in and it started to hail. The lesson I am learning is to be prepared for anything.
People ask how you are feeling, but they don't really want to hear it. Thank goodness for all of 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

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

Re: Mop up chemo experiences

Postby heiders33 » Sun Mar 25, 2018 7:50 pm

If you are taking Xeloda pills you may not be able to fast since you have to take them with food. If you switched to the pump then it may be possible. It sounds like all of your side effects are from the Oxi so far. Side effects from Xeloda are mostly gastrointestinal, plus I developed dry, chapped feet over time.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: Mop up chemo experiences

Postby retiredteacher » Sun Mar 25, 2018 9:43 pm

Thanks for starting this thread Susan. I have had a cold since before the first infusion Thursday - I thought it was getting better, but has taken a turn for the worse - low grade fever 99.2. My throat shut down just from phone conversations Friday morning; I have been a little afraid to go outside. Maybe will try tomorrow. Some foot tingling - has passed. Cold sensitivity. Dropped a pot of hot spaghetti water Friday - I was thinking klutz but now realize may have been a side effect. Very bothersome is the sharp jaw pain - first bite or sip. What do people do to control nausea - I have a script for Zofran - how extensive can the nausea be with Xeloda? Hubby found a loaf of organic bread without folic acid fairly easily. I don't feel great, but not bad enough to skip a glass of wine. Imagine that will come later ...
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.

Deb m
Posts: 417
Joined: Tue Jan 14, 2014 10:08 am

Re: Mop up chemo experiences

Postby Deb m » Mon Mar 26, 2018 9:29 am

My husband experienced all of what you are. It all resolved except very mild tingling on the bottom of his feet. He's 7years out now. Hang in there.

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Mar 26, 2018 9:45 am

Do the side effects lessen between infusions or stay about the same for the whole course?
I don't know which drug is responsible but I get very pink very quickly with just a bit of sun. Will have to get out sun screen, I had a scoop necked shirt on yesterday and my chest and neck are red.
I haven't tired the nausea mess yet, just doing tea.
Loose stools, thankful for the bag or bum would be very sore.
I did find that cranberry juice tastes pretty okay warm. I am seeing oncologist today, will swing by grocery and pick up more. I am cutting it with water as I don't want all the sugar.
I read that the fasting before chemo can be as much as 500 calories a day, but for best results four days. That's a long time. If the calories are divided between Xeloda does, that would be manageable. You can eat a lot of veggies with only a few calories. I was thinking that limiting sugars and carbs might be helpful too as we do prior to a PET scan to drive those little cancer cells crazy.
I would be going to work today if It was a normal week but my schools are on spring break, some this week and some next. I will ease back in slowly.
Red wine still tastes good but only a half glass or I would have fallen asleep at dinner. I could sleep all day.
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: 398
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Mop up chemo experiences

Postby Shana » Mon Mar 26, 2018 2:32 pm

Caat55 wrote:People ask how you are feeling, but they don't really want to hear it. Thank goodness for all of you.

Susan


I second that! Hope this week goes well for you Susan, I think warmer weather will help if it reaches your area!
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
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

mozart13
Posts: 133
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Mop up chemo experiences

Postby mozart13 » Mon Mar 26, 2018 3:31 pm

Evening of my first day of folfox, crampes kicked in, took Magnesium, it worked.
After that on my day of therapy, would take Magnesium as soon as got home, never had cramps again.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: Mop up chemo experiences

Postby retiredteacher » Mon Mar 26, 2018 4:07 pm

Steroids/ steroid withdrawals have any mental effects?
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.

cbsmith
Posts: 64
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Mop up chemo experiences

Postby cbsmith » Mon Mar 26, 2018 6:06 pm

Sun sensitivity is a side affect of 5-FU, or Xelox, if you are taking the pill form.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

orlar
Posts: 61
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Mop up chemo experiences

Postby orlar » Mon Mar 26, 2018 7:26 pm

I think you will find room temp. liquids (for me, food also) are best because OXI can cause cold sensitivity in the mouth, throat, lips the first several days of your cycle. My side affects during FOLFOX always improved as I progressed through my 2 week cycle. The first cycle is tougher because of the unknown and trying to see what's your normal. You'll get through it and the next cycle won't be nearly as stressful as you'll know what to expect. Try to relax as much as possible, drink all the fluids you can (and then more fluids) and things will work out O.K.
56yo male DX 5/17, Right Hemi colectomy 6/17
mod diff adenocarcinoma 6x4x1cm
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 CT=liver/lung mets-Stage 4
MSS KRAS G13D
2/18 PET=liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 PET=mets shrinking
7/18 CT=4 new liver mets/lung mets growing, Folfiri stopped working, looking at Clinical Trials
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue Mar 27, 2018 11:32 am

orlar wrote:I think you will find room temp. liquids (for me, food also) are best because OXI can cause cold sensitivity in the mouth, throat, lips the first several days of your cycle. My side affects during FOLFOX always improved as I progressed through my 2 week cycle. The first cycle is tougher because of the unknown and trying to see what's your normal. You'll get through it and the next cycle won't be nearly as stressful as you'll know what to expect. Try to relax as much as possible, drink all the fluids you can (and then more fluids) and things will work out O.K.


Thank you. I went to lunch yesterday and the nice young man brought me a mug of water and a teapot of hot water to keep it going. I have been cutting juice with warm water, not too bad. Tired of tea. The radiation sent me into menopause and I get so hot and crave a cool drink.

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.

He thought my response to the steroids was pretty funny, as did my husband and friends. Pretty sure mushroom or pot wouldn't have been as exciting.
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

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: Mop up chemo experiences

Postby rp1954 » Tue Mar 27, 2018 6:06 pm

If you are going to the European dose of Xeloda, be sure to ruthlessly weed out folic acid in your diet (regular bread, fortified grains, etc) and old style multivitamins. European Xeloda patients didn't have folic acid fortified foods. The extra toxicity is to you, rather than a cancer benefit. Folinic acid (leucovorin) or natural folates are useful. About 50% of patients have a lot worse toxicity due to folic acid combined with 5FU drugs. This is discussed more in the archives.

We actually built up a B multivitamin formula without any folic acid and added liver or liver spread for the natural folate and vitamins content for long term oral 5FU treatment. Liver helped "our" blood work a lot.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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