Mop up chemo experiences

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NHMike
Posts: 1686
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Thu May 03, 2018 2:41 pm

Caat55 wrote: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


I haven't had the Bronchiospasm but it sounds awful.

I had a bag leak early on and it was contained by my clothing and a towel that I had under me. But it wasn't fun waking up and calling for help in the middle of the night. After that I determined that it would never happen again as a bigger leak would make for a big mess. So I always sleep with a towel underneath and I wake up every three hours to empty the bag. I have an iPhone nearby and set it for three hour intervals. And yes, it messes with your sleep and I feel down the stairs twice because I was so tired and didn't want to turn on the lights. I know others that do the same thing.

Sometimes I will just burp the bag if it's mostly gas but I'll still wake up.

Just another of those things to deal with.
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: 1426
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Re: Mop up chemo experiences

Postby O Stoma Mia » Fri May 04, 2018 10:39 pm

Has your doctor mentioned EpiPen? You might want to ask if it's appropriate in your case.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44314&p=319158#p319158

retiredteacher
Posts: 87
Joined: Sat Oct 21, 2017 1:34 pm

Re: Mop up chemo experiences

Postby retiredteacher » Sat May 05, 2018 10:41 am

Thinking about you up there in Oxi-side-effects-land! Hoping these next few days pass quickly - just as we learn how to stay on top of one issue or side effect, another new one pops up!
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.

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue May 08, 2018 9:56 am

Wow, how to handle heat. It is so strange to have tingles, cold intolerance when it is 90 degrees. Want a/c but it shuts down breathing. Suggestion peeps?
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: 1686
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Tue May 08, 2018 10:14 am

I'd say enjoy the heat as it's better than the alternative. You might also use a dehumidifier rather than AC if the humidity is the main problem.
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

retiredteacher
Posts: 87
Joined: Sat Oct 21, 2017 1:34 pm

Re: Mop up chemo experiences

Postby retiredteacher » Tue May 08, 2018 10:59 am

I had breathing problems from talking - at room temperature. Had to bail out of social situations or shut down a phone convo. Just not talking helped - also hands over mouth and breathing warmed air this way seems to help. Some folks wear a mask - was considering a Vog https://www.vogmask.com
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.

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Fri May 11, 2018 12:21 am

retiredteacher wrote:I had breathing problems from talking - at room temperature. Had to bail out of social situations or shut down a phone convo. Just not talking helped - also hands over mouth and breathing warmed air this way seems to help. Some folks wear a mask - was considering a Vog https://www.vogmask.com

I do the hands over mouth and nose thing too. My coworkers are temporarily trading around work stations to put me closer to the front door, away from a/c. It is crazy to be suffocating one minute and experiencing a monster hot flash the next.

Everything tastes metallic this round. Is this common?

I can’t wait to enjoy a glass of ice tea or lemonade.
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: 1686
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Fri May 11, 2018 5:03 am

Caat55 wrote:
retiredteacher wrote:I had breathing problems from talking - at room temperature. Had to bail out of social situations or shut down a phone convo. Just not talking helped - also hands over mouth and breathing warmed air this way seems to help. Some folks wear a mask - was considering a Vog https://www.vogmask.com

I do the hands over mouth and nose thing too. My coworkers are temporarily trading around work stations to put me closer to the front door, away from a/c. It is crazy to be suffocating one minute and experiencing a monster hot flash the next.

Everything tastes metallic this round. Is this common?

I can’t wait to enjoy a glass of ice tea or lemonade.


Yes, I lose about 70 % taste early on after a few cycles. It does come back. I am drinking room temp water after swishing it around.
I’m not doing cold stuff for at least another week.
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: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon May 14, 2018 11:36 am

Terrible stomach pains all last night and on and off most of last week. Wondering if this is a side effect of this xeloda? Put a calling to my oncologist to see about that and possibly decreasing back to the 3000 mg a day does I was on before this cycle.

Energy level feels good during the day. We got our garden in the sprinklers going and build a new fence yesterday.
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: 1686
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Mon May 14, 2018 11:40 am

Caat55 wrote:Terrible stomach pains all last night and on and off most of last week. Wondering if this is a side effect of this xeloda? Put a calling to my oncologist to see about that and possibly decreasing back to the 3000 mg a day does I was on before this cycle.

Energy level feels good during the day. We got our garden in the sprinklers going and build a new fence yesterday.


The only times when I had stomach pains were when I ate too much at a time. I think that it overall works better with the illeostomy with small amounts of food scattered through the day.
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

margiej
Posts: 38
Joined: Sat Apr 14, 2018 8:46 am

Re: Mop up chemo experiences

Postby margiej » Mon May 14, 2018 1:02 pm

I had stomach pains, cramps, discomfort on Xeloda.. Sort of on and off. Kind of forgot about it until I read this. Was not caused by too much food since I ate so little! I did have occasional diarrhea and it might have been related to that. Dr prescribed Prilosec but I didn't take it often because I couldn't handle another pill and it didn't seem to help.
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: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon May 14, 2018 2:05 pm

margiej wrote:I had stomach pains, cramps, discomfort on Xeloda.. Sort of on and off. Kind of forgot about it until I read this. Was not caused by too much food since I ate so little! I did have occasional diarrhea and it might have been related to that. Dr prescribed Prilosec but I didn't take it often because I couldn't handle another pill and it didn't seem to help.
Margie



Thanks Margie, probably the meds. For me as well eating too much isn't an issue as food just doesn't taste right. I did have a few pounds I wanted to lose so I guess this is the time for it.

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

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon May 14, 2018 2:06 pm

NHMike wrote:
Caat55 wrote:Terrible stomach pains all last night and on and off most of last week. Wondering if this is a side effect of this xeloda? Put a calling to my oncologist to see about that and possibly decreasing back to the 3000 mg a day does I was on before this cycle.

Energy level feels good during the day. We got our garden in the sprinklers going and build a new fence yesterday.


The only times when I had stomach pains were when I ate too much at a time. I think that it overall works better with the illeostomy with small amounts of food scattered through the day.



I am definitely eating several small meals, keeps the nausea at bay. Just isn't fun. You are almost there Mike!
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: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun May 20, 2018 10:44 am

I finally went to Medical Cannabinol yesterday. I have four meds from oncologist and nothing touched my nausea or the rocks in my chest. I got gummies and a tincture . The gummies are supposed to be a single dose, I took 1/8 of a square. The whole dose has 30 mg CBD and less than 2 mg thc. The nausea went away after the gummy so I tried a little of the tincture. 9.5 mg+ .5 Thc. The young man at dispensary recommended I start with half a dropper so I did. Went out with husband and stepson to hear bluegrass band and I realized, both symptoms were gone. I wasn't really expecting such a positive result. I am so excited as the nausea mess we're making foods taste funny. There was no buzz at all.

This gives me courage to proceed with Thursday's chemo, knowing I have some control of side effects. How come there is so much resistance to this plant? I have never been a pot user, drugs of any kind but this is my miracle.
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: 1686
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Sun May 20, 2018 11:15 am

Caat55 wrote:This gives me courage to proceed with Thursday's chemo, knowing I have some control of side effects. How come there is so much resistance to this plant? I have never been a pot user, drugs of any kind but this is my miracle.


It's been claimed that it's a gateway drug and has been illegal for most of my life. My state is the third-worst in the country for drug overdose fatalities (per capita) and drugs definitely are a problem here; both for the user and he general community.

I'm happy that you and many others have something that works for you to ease the chemo process.
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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