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Re: NEW-Need some positivity here.

Posted: Fri Nov 10, 2017 6:38 pm
by CRguy
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

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 7:23 am
by teacher2017
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 7:31 am
by Aqx99
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 7:35 am
by Beckster
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

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 8:57 am
by Robino1
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 10:54 am
by Beckster
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:

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 12:58 pm
by teacher2017
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 2:36 pm
by heiders33
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 2:48 pm
by Robino1
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:

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 2:50 pm
by Aqx99
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 3:11 pm
by susie0915
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 3:29 pm
by heiders33
Congrats, Aqx99! I will be you in a few months.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 4:03 pm
by Aqx99
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 4:07 pm
by Aqx99
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.

Re: NEW-Need some positivity here.

Posted: Sun Nov 12, 2017 4:50 pm
by susie0915
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.