Mop up chemo experiences

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Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue Apr 17, 2018 9:12 am

O Stoma Mia wrote:
Caat55 wrote: ... I see the oncologist on either Monday or Tuesday after infusion...

When you see the oncologist this week, maybe you could ask for a detailed review of your Round Two bloodwork to see if there are any tests that are borderline or trending out-of-range. This is because a common cause of cancelling or deferring a round is "low blood counts," and in some situations there might be something that could be done in advance to keep the count within normal range, thereby avoiding delays or cancellations of future rounds.


I looked at the numbers, a few slightly off compared to prior to first chemo. I will ask him today. Experienced nausea this time, keeping something in my stomach seems to be the answer, much like pregnancy only no joy in it. My husband and I joke about the bed of nails if sheets are cold.
This morning my tingly toes just won't stop even after warm shower, socks and UGGs. Face seems stuck, kind of eyelid freeze.

We have Bocce League tonight, will have to wear gloves to hold the balls.

Happy Tax Tuesday.
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

NHMike
Posts: 1352
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Tue Apr 17, 2018 9:22 am

You might try ginger products for the Nausea. I've had a touch of it the past few days.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

margiej
Posts: 27
Joined: Sat Apr 14, 2018 8:46 am

Re: Mop up chemo experiences

Postby margiej » Tue Apr 17, 2018 7:52 pm

This is my first time posting..I have been lurking on the site for the last couple of months and have learned so much. When I was diagnosed over two years ago, I was too overwhelmed to research what I was going through. I was just on autopilot and putting my faith in my surgeon and oncologist. Probably not the best approach but it has turned out well for me so far, fingers crossed and knock on wood. I might have had an easier time if I would have read all the experiences others have gone through and all the warm advice and best wishes. My experiences with Oxaliplatin and Xeloda were very similar to what others have been posting. I resisted a port and my first Oxy infusion was in the vein on the top of my hand. My hand and my arm were so, so painful, I had a hard time sleeping the first two nights. The rest of my infusions were inserted higher up on my arm and it was much less painful. Oxy causes the extreme sensitivity to cold and it's not a joke. My daughter-in-law got me a cold bottle of water partway through my first infusion and it was a big mistake..the prickling and pain in my mouth and throat--yowza. After that I always drank warm beverages during my infusions. I was also extremely nauseous. I don't know if it was from the Oxy or Xeloda or both. The compazin didn't help at all. I got Zofran about 3 days in and it helped a lot. Also, Emend was added as part of my infusion after the first time and I always felt pretty good for about three days after my infusions after that. The cold sensitivity was pretty bad for about a week after the Oxy infusion---brushed teeth with warm water, drank everything at room temperature or warmer. I wore oven mitts to take things out of the refrigerator. You just learn what you can and can't do. My throat really bothered me ...the first night I thought I had swallowed a chicken bone or something...didn't realize that it was a chemo side effect! I still have sort of a lump feeling in my throat that started when I started chemo and am positive after reading this, that it is just a lingering effect from the Oxy. I am not a great pill taker, but I opted for Xeloda because I didn't want the port and pump. Taking the pills was very difficult for me because I was so nauseous, plus having to take them with a warm beverage wasn't the greatest. It's easier for me to take pills with juice and warm juice is kinda blech! I started at 3500 mg/day and it was dropped to 3000 partway through. Because of the vomiting and occasional diarrhea and feeling too nauseated to eat and drink, I fought dehydration. I went in for IV fluids 4 or 5 times which definitely helped make me feel better. They always gave me a liter of fluids before my infusion too. I worked 1 or 2 days a week but it was very difficult with the nausea and weakness and fatigue. My co-workers were great...running errands for me and picking up lunch, since even walking down the hall was exhausting. I mostly wanted to sleep. Also my joints were very painful...like arthritis--particularly my knees and ankles. Happily the joint pain was only temporary and went away a few months after chemo was over. Even on my week off of Xeloda, I would be very nauseous. I would generally have one or two days of feeling sort of OK before it was time to start the cycle over again. I had neuropathy in my hands and feet starting about halfway through my treatment. It was tolerable, but I'm glad I only had six rounds of chemo (I originally thought it might be 8 but my oncologist decided that 6 would be good.) My neuropathy got much worse about a month and a half after my last infusion. It was hard to drive because I couldn't feel the gas pedal or brake! My manual dexterity was affected significantly--hard to deal cards, for example! My sheets felt like someone had dumped a bucket of sand in the bed. The neuropathy gradually improved and I just have a tiny bit of numbness or tingling in the very tips of my fingers and the balls of my feet and toes are bit numb but it's very tolerable. I can walk and run without problems. Going barefoot isn't a good idea and cold still bothers my extremities a bit.
Sorry to write so much...since it's my first post I'm just blurting out all I can remember! My doctor prescribed 1000 mg of Vitamin B12 for neuropathy so I have been taking that since the end of chemo. I also take 81 mg aspirin, 1000-2000 units of D3 and a K2 supplement. I also usually take 500 mg of turmeric.
In conclusion...chemo sucks but you just get through as much as you can as best you can.
Hugs and peace to all.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed Apr 18, 2018 12:30 am

[quote="margiej"]This is my first time posting..I have been lurking on the site for the last couple of months and have learned so much.

Thank you Margie for your post. It may have been a while but what you said mirrors a lot of my experiences. The cold sensitivity started with the first round, the nausea with this one. I was so nauseous tonight after dinner, don't know if it was the chemo or the food so I tried a zofrain. I feel better for what it worth, not good but better. I am trying to work, full time. Tonight my husband suggested I make some adjustments, it is so hard as I have so much to get done at work, slammed quite literally. We are working to up my Xeloda dose to 3600 mg a day.

I am trying the ginger tea, products Mike suggested. Found hot cocoa to be settling. It is strange to take pills with warm water I agree but that's the only way to get them down. Yes, the rocky feeling is awful. I have to make an effort to keep my mouth closed, my sister could run a mile with that comment, to prevent the awful throat feeling.

I could sleep for a week, so tired I didn't even wake to empty with balloon on my belly. Thankfully no explosion.

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

margiej
Posts: 27
Joined: Sat Apr 14, 2018 8:46 am

Re: Mop up chemo experiences

Postby margiej » Wed Apr 18, 2018 6:07 am

I was told to start the anti-nausea meds the day after my infusion (I believe...a little fuzzy on the timing, but I was usually ok for nausea for a couple of days because of the Emend I got with my infusion.). And take the compazin and zofran on a regular schedule before the nausea set in. It definitely helped although eventually nausea tended to win out.
Also some of the foods that would sit well with me were savory or spicy, like curry. Also wet foods like watermelon and canteloupe. I have read on here that folic acid contributes to nausea and I had no idea. I am sure I ate some Cheerios or other cereal with folic acid and wish I had known that was contraindicated.
Some people are able to work full-time on chemo and it's just not possible for others. I was an accountant for a non-profit and worked only three days a week and thought I would have no problem working through treatment. I was wrong and it was very hard to let go of my tiny control issues and tell my executive director that she would have to hire someone to fill in for me. You just do what you can do and try to take care of yourself as best you can.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sat Apr 21, 2018 10:59 pm

[quote="margiej"]I was told to start the anti-nausea meds the day after my infusion (I believe...a little fuzzy on the timing, but I was usually ok for nausea for a couple of days because of the Emend I got with my infusion.). And take the compazin and zofran on a regular schedule before the nausea set in. It definitely helped although eventually nausea tended to win out.
Also some of the foods that would sit well with me were savory or spicy, like curry. Also wet foods like watermelon and canteloupe.

Thanks for the suggestion, I will try to stay ahead of it next time. I think I waited to long before taking them, didn't notice a benefit. It feels like a lump in my throats and chest, like a burp that stuck. Does that make sense?

I made the most amazing dinner tonight. Pizza, folic free flour, the shaved asparagus and goat cheese and prosciutto and arugula. A asparagus vichyssoise. Dessert was rhubarb, raspberry cobbler. The ingrediants came mostly from our garden.
A coworker suggested garden gloves for cooking, picked up a pair yesterday. They have enough insulation and a grip that the prep, i.e. cutting the veggies, was doable.

Feels good to be 10 days out from chemo, know each day gets better until it starts again.
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

Capri
Posts: 35
Joined: Thu Apr 19, 2018 5:59 pm

Re: Folic acid and chemo?

Postby Capri » Sun Apr 22, 2018 10:58 am

Hello...

My son is 4 cycles into FOLFOX. He experiences the same SE as most of you: cold intolerance, throat tightening, jaw clenching, nausea, insomnia. Zofran & Compazine--compazine works a littel more effectively.

Can someone tell me about folic acid and -- is it the 5FU(?)--does the folic acid counteract the 5FU? I thought Leucovorin was a folate-related drug that enhances the 5FU, please correct me if I'm wrong.

Also how much magnesium to take to reduce the cramping in his jaw/throat area?

The chemo nutritionist he consulted with mostly okayed his multivitamin and didn't discuss any of this.

Thank you.
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT questionable liver spots 2 are hemangioma, 3rd? PET scan-nothing "lit" up
Neuropathy has started.

retiredteacher
Posts: 73
Joined: Sat Oct 21, 2017 1:34 pm

Re: Mop up chemo experiences

Postby retiredteacher » Sun Apr 22, 2018 12:49 pm

I second that emotion - I have the same questions re: Mg and folic acid - Susan I am coming to your house for dinner .....


Terri
63 yo female
RC 9/13/17 Adenocarcinoma 6.3 - 7 cm tumor (PET)
6 cm, or maybe 8 - 10 cm fr AV (PET)
G2: Moderately differentiated (Path rprt), MSS
Unstaged, guesstimate T3N0M0 PET, no MRI, no ultrasound
2500 Capecitabine/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 0.3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Folic acid and chemo?

Postby Caat55 » Sun Apr 22, 2018 1:25 pm

The chemo nutritionist he consulted with mostly okayed his multivitamin and didn't discuss any of this.

Thank you.[/quote]
Thr chemo education nurse and the conslting pharmatist from Anthem both said folic acid negatively interacts with the Oxiliplatin. Its in all mulri varimins I have checked on, its in most flours, cereal, bread products , cornmeal, etc. Natural folic acid, ie un whole food sources was okay.
I get a magnesium supplement as a part of chemo. I will check on doage. Still have jaw issues. Maybe U should supplement inbetween. Bananas help with cramps.
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Apr 22, 2018 4:13 pm

retiredteacher wrote:I second that emotion - I have the same questions re: Mg and folic acid - Susan I am coming to your house for dinner .....


Terri

Seriously, anytime you make it Murphys. Graduated to room temperature beverages.
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Apr 22, 2018 4:43 pm

Transplanted tomatoes, eggplant, peppers and basil in my greenhouse. Flowers are blooming like crazy, poppies all over the yard. So good to be able to enjoy fresh foods, veggies again. Last summer, before I knew about RC, everything bothered my gut.
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed May 02, 2018 11:01 pm

Round three tomorrow with the new higher dose of Xeloda. I feel like a human being again the last few days. Afraid the next infusion is going to knock me off the tracks... just keep plugging away as there isn't really any other choice is there?

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

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O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: Mop up chemo experiences Cycle 3

Postby O Stoma Mia » Wed May 02, 2018 11:57 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
    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: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences Cycle 3

Postby Caat55 » Thu May 03, 2018 9:07 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
    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

You got it. Can't wait to the finish, halfway there. Thanks for keeping me on track, all of us actually.
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Thu May 03, 2018 2:16 pm

In the chair getting premed. My nurse today gave me a name for what I am experiencing, Branchiospasms. It feels like a lump in my chest, throats constantly. It's a side effect of the oxilaplatin. It is the side effect that never goes away.
Had a bag blow up last night. I wish these vents worked for more than a day. My husband was so good about it, we stripped bed, changed sheets and showered. I eat a ton of vehhies, maybe that makes for more gas. It's a mess.
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


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