NEW-Need some positivity here.

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CRguy
Posts: 9287
Joined: Sun Feb 10, 2008 6:00 pm

Re: NEW-Need some positivity here.

Postby CRguy » Fri Nov 10, 2017 6:38 pm

I have had both oral Xeloda x 2 protocols and the IV infusor (=pump) during the past 10 years.

We make .... what we make of it
We deal with it and move forward.

IMO with your presentation I do believe the pump is a good option.
YOU are making it work for you = kick ass !!!!!

Sending support and POSI +++++Vibes your way

Cheers
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Nov 12, 2017 7:23 am

Chemo 1 done. I'm proud of myself. But the thought of 11 more is daunting. The day after disconnect I was very sleepy and this headache/fog thing. I feel like I'm being preventative and proactive but I get depressed just thinking that this is a long road and it guarantees nothing. I guess these feelings are normal. Any suggestions to keep a positive attitude? Mine comes and goes.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

Aqx99
Posts: 249
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sun Nov 12, 2017 7:31 am

teacher2017 wrote:Chemo 1 done. I'm proud of myself. But the thought of 11 more is daunting. The day after disconnect I was very sleepy and this headache/fog thing. I feel like I'm being preventative and proactive but I get depressed just thinking that this is a long road and it guarantees nothing. I guess these feelings are normal. Any suggestions to keep a positive attitude? Mine comes and goes.


Find something you enjoy that can take your mind off treatment. I was feeling really down when my treatment started, so I decided to look into the future. I have been planning all of the things I want to do when I get well again. Camping is a favorite of mine, so I have been looking at various locations that I want to go, like the Smoky Mountains. I also decided to take up music again. I played the viola all through school and absolutely loved every minute of it. My viola has been gathering dust for years so I got it out, had the bow rehaired and have started playing again. Not for an audience, just for me.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Beckster
Posts: 181
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Sun Nov 12, 2017 7:35 am

teacher2017 wrote:Chemo 1 done. I'm proud of myself. But the thought of 11 more is daunting. The day after disconnect I was very sleepy and this headache/fog thing. I feel like I'm being preventative and proactive but I get depressed just thinking that this is a long road and it guarantees nothing. I guess these feelings are normal. Any suggestions to keep a positive attitude? Mine comes and goes.


The first 2 cycles were emotionally draining...thinking about how many I had to the end. With each cycle, it became easier and when you see the end near, you can't wait to have the next treatment. I use to plan a lunch date with my girlfriend at the end of every treatment. We would pick a different restaurant and celebrate the end of the treatment. I also planned a vacation when I was finished, so I had that to look forward to.

Beckster
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Sun Nov 12, 2017 8:57 am

My kids and grandkids made me a countDOWN calendar. Instead of the number going up each time, the number goes down. After the pump comes off, I change the number to one less.

Down to 3 :D

I was tired after my first session also. I think it was more the stress and sleeplessness prior. I haven't had that same tiredness since. After the second session, I pushed myself into not taking any naps and just going for walks and keeping as active as possible. Even though I felt a little draggy at times. I just pushed through.

Now I don't feel the blah anymore.

We have planned several trips through this. The first was going to my oldest grandchilds graduation party in Michigan. We live in Florida so it was my first time going through security with the port. I had the med card on me in case I needed it... they didn't say a word and went through the scanner no problem.

We have upcoming next week a train trip with the MIL to Pennsylvania for Thanksgiving and I am so looking forward to our Christmas trip to Michigan. Flying first class!!! Woot!!!! Our Christmas gift to each other. ;)

We are starting to plan a trip to Oregon to see another of our kids. Probably sometime in April. We are looking at making it an actual vacation and driving to several states after spending a couple of days in Portland. I've always wanted to see Mt Rushmore and Yellowstone. So we are working out a driving route from Portland and ending in Denver to fly back home. Stopping at several places and states along the way.

All this really gives me something to look forward to.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7

Beckster
Posts: 181
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Sun Nov 12, 2017 10:54 am

Robino1 wrote:My kids and grandkids made me a countDOWN calendar. Instead of the number going up each time, the number goes down. After the pump comes off, I change the number to one less.

Down to 3 :D

I was tired after my first session also. I think it was more the stress and sleeplessness prior. I haven't had that same tiredness since. After the second session, I pushed myself into not taking any naps and just going for walks and keeping as active as possible. Even though I felt a little draggy at times. I just pushed through.

Now I don't feel the blah anymore.

We have planned several trips through this. The first was going to my oldest grandchilds graduation party in Michigan. We live in Florida so it was my first time going through security with the port. I had the med card on me in case I needed it... they didn't say a word and went through the scanner no problem.

We have upcoming next week a train trip with the MIL to Pennsylvania for Thanksgiving and I am so looking forward to our Christmas trip to Michigan. Flying first class!!! Woot!!!! Our Christmas gift to each other. ;)

We are starting to plan a trip to Oregon to see another of our kids. Probably sometime in April. We are looking at making it an actual vacation and driving to several states after spending a couple of days in Portland. I've always wanted to see Mt Rushmore and Yellowstone. So we are working out a driving route from Portland and ending in Denver to fly back home. Stopping at several places and states along the way.

All this really gives me something to look forward to.


YES...I did a countdown number on my refrigerator too! I put them on pieces of different color construction paper and of course, I decorated each one to correspond with the number. It must be the teacher in me :lol: ! I found that each countdown became more artistic! It was actually fun to do, and I looked forward to creating each number. My husband thought I was nuts! Oh well....maybe I am, but who cares? :lol:
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D

teacher2017
Posts: 121
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Nov 12, 2017 12:58 pm

Sounds like I need to book a trip! I think I will treat myself after every chemo. This may become expensive but so what?! The countdown is a good idea. I think I'll do that too.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

heiders33
Posts: 20
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Sun Nov 12, 2017 2:36 pm

I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Sun Nov 12, 2017 2:48 pm

heiders33 wrote:I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.


It really does help to stay ahead of the nausea. Sucks when you are chasing it and trying to control it after it starts.
I'm glad your mom will be there to help and that you have something to look forward to.
You might be able to walk on the good week after chemo.

I'm not really looking forward to what my body will feel like when we go north for the holidays. Not sure how it will tolerate the cold. Here in Florida I haven't had to think about it. I am taking ski gloves that I had kept after we moved down here. I may have to get a scarf for around my face after we get there.

Playing it by ear and not sweating (hahaha) it beforehand. I have a plan in place in case I need it..... SHOPPING!!! like I need an excuse :lol:
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7

Aqx99
Posts: 249
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sun Nov 12, 2017 2:50 pm

heiders33 wrote:I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.


I'll be in the chair for an oxaliplatin infusion as well. It will be my sixth, and final, one.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

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susie0915
Posts: 441
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Nov 12, 2017 3:11 pm

Aqx99 wrote:
heiders33 wrote:I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.


I'll be in the chair for an oxaliplatin infusion as well. It will be my sixth, and final, one.

Congrats. I bet you can't wait to be done.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

heiders33
Posts: 20
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Sun Nov 12, 2017 3:29 pm

Congrats, Aqx99! I will be you in a few months.
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

Aqx99
Posts: 249
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sun Nov 12, 2017 4:03 pm

susie0915 wrote:
Aqx99 wrote:
heiders33 wrote:I have had one cycle so far and found it emotionally draining as well. I was fatigued and nauseous and napped a lot. Mentally I felt like I was never going to get out of the fog I was in. But I did! Now I am gearing up for my next Oxi infusion tomorrow and am determined to not let it take over my life. My mom will be with me all week from out of town, and then on Saturday I will go back with her to spend Thanksgiving with family. We all need something to look forward to! I like the idea of getting out and walking, although I tried that last time and my lip swelled up and my eye twitched a lot due to the cold air. Still, I'm determined to be more active this time, and to take my anti-nausea drugs ahead of the nausea, lol. I haven't been nauseous in years so I couldn't even identify it when it came. It's all about attitude going in, and when you know what to expect it's much more manageable.


I'll be in the chair for an oxaliplatin infusion as well. It will be my sixth, and final, one.

Congrats. I bet you can't wait to be done.


Thanks. I am glad to start getting back to some form of normal, at least until my reversal.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Aqx99
Posts: 249
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sun Nov 12, 2017 4:07 pm

heiders33 wrote:Congrats, Aqx99! I will be you in a few months.


Thanks. The best advice I can give you is to keep ahead of your side effects, and let your oncologist know about them. On my second cycle I tried to push through as I got hand-foot symptoms, but finally had to call when I couldn't walk the pain in my feet was so bad. The PA at my oncologist's office had me stop the pills 4 days early to clear up the symptoms. When I started my third cycle, my oncologist dropped my dose to prevent hand-foot.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

User avatar
susie0915
Posts: 441
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Nov 12, 2017 4:50 pm

Absolutely. Just know adjustments can be made. I was having issues with diarrhea because I had my reversal 5 weeks after my resection due to blockage and had to have surgery to remove scar tissue. Was happy about reversal but made it tough during chemo. My doctor reduced my xeloda a couple times to help relieve some of the diarrhea along with adding some meds in addition to immodium and lomotil. Also lowered my oxi a little too. Don't be afraid to ask.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT


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