Feeling nervous n very high anxiety

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horizon
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Re: Feeling nervous n very high anxiety

Postby horizon » Wed Dec 06, 2017 10:02 pm

Hopegirl wrote:Hi everyone , had my first infusion of Oxaliplatin this morning and took my 3 pills of xeloda also this morning will have to take another 3 tonight. I was ok when getting the infusion . I been home since 12pm . Took a nap I think about an hour not sure it’s because my Xanax was making tired . Now getting a little , some minor stomach issue . Not too painful . Been writing everything down what I feel . So far just a little tired . I wonder at which cycle do u get really fatigued or the xeolda pills will make me tired too because I have to take it 14 days straight . Sigh after tonight 13 more days than 1 week off . Can’t wait . Counting down for 3 more cycles to go. Hopefully everything works out with my blood count . Thank you everyone for your great advice .


I did Xelox also. Now that you've done one you don't have the fear of the unknown to deal with regarding getting an infusion. They week off from the pills was glorious. It felt like a mini-vacation for me and I joked that I pretended I was a normal person during that week.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

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O Stoma Mia
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Re: Feeling nervous n very high anxiety

Postby O Stoma Mia » Thu Dec 07, 2017 1:23 am

Hopegirl wrote:.. . I wonder at which cycle do u get really fatigued or the xeolda pills will make me tired too because I have to take it 14 days straight .. .

I don't remember exactly since it was so long ago. What I do remember, though, is that I became exceptionally tired all of a sudden on a Saturday morning and there was no one at the infusion center until Monday, and in the mean time I became very sick, so sick that I failed my next blood test and had to postpone the next infusion by a week or two. I had also missed some of my morning or evening pill-taking sessions because when I did go to sleep I would sometimes sleep. for 12 to 16 hours non-stop, and when I would wake up I would not know whether it was morning or evening, or even what day of the week it was.

Sometimes I would eat my meal and then while waiting the required 30 minutes before taking the pills I would fall into a deep sleep and not wake up until after the time for the next pill-taking session.

When you are on Xelox, you are on your own at home for 20 days with no one observing you except for yourself. So, it's up to you to keep very good records of what is happening so thst you can have something accurate to report on when you eventually see your doctor again. (You can't count on your memory. You need to write it down.)

You also need to have contact numbers for who to contact 7 days a week 24 hours a day in case you have a problem during the holidays or when the infusion center and doctors offices are closed. My infusion center was closed every week-end and all week long between Christmas and New Yesrs.

NHMike
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Re: Feeling nervous n very high anxiety

Postby NHMike » Thu Dec 07, 2017 6:20 am

O Stoma Mia wrote:
Hopegirl wrote:.. . I wonder at which cycle do u get really fatigued or the xeolda pills will make me tired too because I have to take it 14 days straight .. .

I don't remember exactly since it was so long ago. What I do remember, though, is that I became exceptionally tired all of a sudden on a Saturday morning and there was no one at the infusion center until Monday, and in the mean time I became very sick, so sick that I failed my next blood test and had to postpone the next infusion by a week or two. I had also missed some of my morning or evening pill-taking sessions because when I did go to sleep I would sometimes sleep. for 12 to 16 hours non-stop, and when I would wake up I would not know whether it was morning or evening, or even what day of the week it was.

Sometimes I would eat my meal and then while waiting the required 30 minutes before taking the pills I would fall into a deep sleep and not wake up until after the time for the next pill-taking session.

When you are on Xelox, you are on your own at home for 20 days with no one observing you except for yourself. So, it's up to you to keep very good records of what is happening so thst you can have something accurate to report on when you eventually see your doctor again. (You can't count on your memory. You need to write it down.)

You also need to have contact numbers for who to contact 7 days a week 24 hours a day in case you have a problem during the holidays or when the infusion center and doctors offices are closed. My infusion center was closed every week-end and all week long between Christmas and New Yesrs.


I normally set alarms on my watch to wake up and empty the bag two times early morning but the alarms have failed to wake me up a few times because I was so tired. But fortunately no bag breakages. I've cut back on food in the evening to help prevent that. This morning I had to leave at 4:00 AM so I set my phone alarm which is far louder than my watch alarm. I don't like to use it because it can wake others up. I got up before the alarm went off so no problems. I think that I'll do the same thing when on Chemo. I can ask my wife to wake me up as well or remind me before going to bed.
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; 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, 2/12 1.2
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
2/19: Clean CT

Stan Klem
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Re: Feeling nervous n very high anxiety

Postby Stan Klem » Thu Dec 07, 2017 7:24 am

You and me both! Had colonoscopy yesterday, they found 3 cm tumor in upper colon, and sent for biopsy. I underwent lung cancer treatment 4 years ago........nervous wreck here!

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susie0915
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Re: Feeling nervous n very high anxiety

Postby susie0915 » Thu Dec 07, 2017 9:52 am

NHMike wrote:
susie0915 wrote:I don't remember a lot of fatigue. But I'm sure I was tired. Felt a little neuropathy a couple days after the second infusion that lasted a couple days. My neuropathy didn't really kick in until about a month after finishing treatment. My bloodwork was generally okay. I did have to go in for hydration a couple times because of diarrhea. My xeloda dose was reduced a couple times. I was able to exercise most days. Try not to stress about what may happen. I did 6 rounds and I think many do 8-12. So hopefully with you only doing 4 your side effects won't be as bad as I think side effects progress as more rounds are given.


I think that FOLFOX is 8-12 rounds while XELOX is 4-8.

Yes Mike, I think you are right about that. My oncologist originally scheduled me for 7 rounds. It has to do with total rounds given which also includes preadjuvant therapy. She said I could stop at 6 rounds as my son was getting married and I had to travel out east. I wanted a month to recover. Have you found out if you will be doing Xelox or Folfox?
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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

Re: Feeling nervous n very high anxiety

Postby NHMike » Thu Dec 07, 2017 10:59 am

susie0915 wrote:
NHMike wrote:
susie0915 wrote:I don't remember a lot of fatigue. But I'm sure I was tired. Felt a little neuropathy a couple days after the second infusion that lasted a couple days. My neuropathy didn't really kick in until about a month after finishing treatment. My bloodwork was generally okay. I did have to go in for hydration a couple times because of diarrhea. My xeloda dose was reduced a couple times. I was able to exercise most days. Try not to stress about what may happen. I did 6 rounds and I think many do 8-12. So hopefully with you only doing 4 your side effects won't be as bad as I think side effects progress as more rounds are given.


I think that FOLFOX is 8-12 rounds while XELOX is 4-8.

Yes Mike, I think you are right about that. My oncologist originally scheduled me for 7 rounds. It has to do with total rounds given which also includes preadjuvant therapy. She said I could stop at 6 rounds as my son was getting married and I had to travel out east. I wanted a month to recover. Have you found out if you will be doing Xelox or Folfox?


I'm doing XELOX as I know that I tolerate Xeloda well and the convenience factor of not having to carry the pump around.
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; 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, 2/12 1.2
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
2/19: Clean CT

Hopegirl
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Location: Modesto ca

Re: Feeling nervous n very high anxiety

Postby Hopegirl » Thu Dec 07, 2017 1:19 pm

Hi, I know constipation is also a side affect . This is the 2nd that I haven’t had a bowel. Is it because of the zolfran that I have to take for 2 days after my xelox infusion. Usually hot coffee makes me go . This time it didn’t work . Sucks I don’t have any appetite at all . I feel like throwing up when trying to eat but I just force myself to eat a little bit . Will this nausea go away . I had to take my Xanax earlier just to see if that will help . I wish I can cut my pills to 4 pills a day instead of 6. 3000 milligrams is a bit high for me . I’m very sentive to meds that why. Sigh . Hope I can get thru the 14 days . Can’t wait for that 1 week off
Diagnosed 10/11/17 at 46 years old . Now 50,4 kids 29, 25, 15, 13
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
7-19-2019 Clean scan
7-19-2019 Cea 0.7
1-14-2020 Cea 0.5 :D
Pray for NED Always

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susie0915
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Location: Michigan

Re: Feeling nervous n very high anxiety

Postby susie0915 » Thu Dec 07, 2017 2:31 pm

Hopegirl wrote:Hi, I know constipation is also a side affect . This is the 2nd that I haven’t had a bowel. Is it because of the zolfran that I have to take for 2 days after my xelox infusion. Usually hot coffee makes me go . This time it didn’t work . Sucks I don’t have any appetite at all . I feel like throwing up when trying to eat but I just force myself to eat a little bit . Will this nausea go away . I had to take my Xanax earlier just to see if that will help . I wish I can cut my pills to 4 pills a day instead of 6. 3000 milligrams is a bit high for me . I’m very sentive to meds that why. Sigh . Hope I can get thru the 14 days . Can’t wait for that 1 week off

My oncologist cut my xeloda twice due to diarrhea. Zofran can cause constipation. I used to take it just for that reason. I never really had nausea. If the constipation continues, let your oncologist know. I don't think the xeloda causes constipation, but the other meds may. She may be able to help with that I'm not sure.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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O Stoma Mia
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Re: Feeling nervous n very high anxiety

Postby O Stoma Mia » Thu Dec 07, 2017 3:40 pm

Hopegirl wrote:Hi, I know constipation is also a side affect . This is the 2nd that I haven’t had a bowel. Is it because of the zolfran that I have to take for 2 days after my xelox infusion? ..

Both XELOX and Zofran documentation list constipation as a side effect. So does Xanax documentation.

- - - - - - - -
Drugs That May Be Prescribed by Your Doctor for Constipation:
Your doctor may recommend one or more of the following medications to prevent or treat constipation:

Psyllium (Metamucil ®)
Senna (Senokot®)
Bisacodyl (Dulcolax®)
Docusate sodium (Colace®)
Glycerin suppository
Magnesium citrate
Magnesium hydroxide (Milk of Magnesia®)
Lactulose (Chronulac®)
Sorbitol and sodium phosphate (Fleet's enema®)

Ref. http://chemocare.com/chemotherapy/side-effects/constipation-and-chemotherapy.aspx
Last edited by O Stoma Mia on Thu Dec 07, 2017 11:02 pm, edited 1 time in total.

Hopegirl
Posts: 55
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling nervous n very high anxiety

Postby Hopegirl » Thu Dec 07, 2017 3:55 pm

susie0915 wrote:
Hopegirl wrote:Hi, I know constipation is also a side affect . This is the 2nd that I haven’t had a bowel. Is it because of the zolfran that I have to take for 2 days after my xelox infusion. Usually hot coffee makes me go . This time it didn’t work . Sucks I don’t have any appetite at all . I feel like throwing up when trying to eat but I just force myself to eat a little bit . Will this nausea go away . I had to take my Xanax earlier just to see if that will help . I wish I can cut my pills to 4 pills a day instead of 6. 3000 milligrams is a bit high for me . I’m very sentive to meds that why. Sigh . Hope I can get thru the 14 days . Can’t wait for that 1 week off

My oncologist cut my xeloda twice due to diarrhea. Zofran can cause constipation. I used to take it just for that reason. I never really had nausea. If the constipation continues, let your oncologist know. I don't think the xeloda causes constipation, but the other meds may. She may be able to help with that I'm not sure.

When did you start having diarrhea? Is it right away . I just to my nurse . She says zolfran can make you constipated . I’ll. Wait and see if go tomorrow or not . Your so lucky you didn’t have nausea isssues. I would be ok if I didn’t have nausea. It’s not so severe but it’s bothersom .
Diagnosed 10/11/17 at 46 years old . Now 50,4 kids 29, 25, 15, 13
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
7-19-2019 Clean scan
7-19-2019 Cea 0.7
1-14-2020 Cea 0.5 :D
Pray for NED Always

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling nervous n very high anxiety

Postby susie0915 » Fri Dec 08, 2017 9:38 am

I had diarrhea quite a bit during chemo. I had most of my rectum removed and my ileostomy was reversed before I started chemo so that is probably why I had such problems. I did take zofran to slow things down not because of nausea. Call your oncologist you may be able to take miralax which should help move things along. It is milder than other laxatives and generally what many doctors recommend. I don't know if a change in your diet may help. If you have nausea, you probably are not eating a lot either so won't go as often. Just be sure you let your oncologist know so she maybe prescribe something or reduce your dosage.
Last edited by susie0915 on Fri Dec 08, 2017 12:52 pm, edited 1 time in total.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: Feeling nervous n very high anxiety

Postby horizon » Fri Dec 08, 2017 10:42 am

O Stoma Mia wrote:Hi, I know constipation is also a side affect . This is the 2nd that I haven’t had a bowel. Is it because of the zolfran that I have to take for 2 days after my xelox infusion? ..

Both XELOX and Zofran documentation list constipation as a side effect. So does Xanax documentation.
[/quote]

That's interesting because it was only ever a problem for me the 1-2 days after an infusion. Stool softeners helped a little but it was never an issue afterwards when I was just taking Xeloda.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

Hopegirl
Posts: 55
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling nervous n very high anxiety

Postby Hopegirl » Sun Dec 10, 2017 5:02 pm

Hi, this my 5th day on xeloda and I’m still nauseous. Is this normal to be nauseous this many days . My nurse says it will go away but when. It’s so hard being nauseous all the time and hard to eat anything. Xanax helps a little bit . I’m on 3000 milligrams a day. Do you think the dr. Can change the dosage if Nausea continues . Ugh I hate the cold sensitivity. Feels like I have something in my throat and I keep forgetting about that first bite . Any advise I really appreciate it
Diagnosed 10/11/17 at 46 years old . Now 50,4 kids 29, 25, 15, 13
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
7-19-2019 Clean scan
7-19-2019 Cea 0.7
1-14-2020 Cea 0.5 :D
Pray for NED Always

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling nervous n very high anxiety

Postby susie0915 » Sun Dec 10, 2017 5:12 pm

I would call your oncologist tomorrow and see if she can reduce your dosage. I had my xeloda reduced twice because of diarrhea. She may only take 500 mg at a time. I think I started at 3500mg/day and went down to 2000 mg/day. My cold sensitivity and first bite only lasted a couple days, so that may subside soon for you. I never really had nausea, my main issue was diarrhea.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

TheSquire
Posts: 11
Joined: Wed Apr 26, 2017 11:09 am

Re: Feeling nervous n very high anxiety

Postby TheSquire » Sun Dec 10, 2017 6:28 pm

I just completed eight 14-day cycles of XelOx. One side effect you will likely feeling a hand and foot rawness. I suggest using Eucerin lotion on your hands and feet twice a day and to start now even if you don't have any rawness yet. It will come as Chemo builds in your body. You may also go through a period of constimation (at he beginning if the cycle) and diarrhea a little later. I took two Metamucil pills a day to keep me regular. It seems to work. The cold sensitiviy will wear off quickly .
I wouldn't worry about that so much. I am experiencing some lingering neuropathy though and I hope it will go away.
My last rectal Exam showed no tumor!
Age 53, male. Diagnosed with rectal cancer in lower rectum on 3/21/17. T2, N0, M0. No surgery. Going with Chemo-radiation approach. Started treatment on 4/25/17. Eight 14-day cycles of XelOx. Ended treatment on 11/3/17. Rectal exam and sigmoidoscopy (12/7) shows no tumor/complete response. Now on "watch and wait." Two years out still clear. Dec 2019.


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