mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[jeanette57]

First - had a great stay at a 4 star hotel and was spoiled. Then the party had 37 people and 10 mad friends who couldn't come down for it. I guess I am going to treat them to lunch this month. won 20 dollars on 10 cent penny machine - quit then. It was tip money for bell hop.
the new chemo is a bear but better today. I did a lot of puking in the chair so they took from 10- 5:30 pm to get me out. This morning took the xolodia - first day and reached for strawberry jam OUCH - felt like I got an electrical shock. SO fast? playing it safe now- 3 pictures hope I did this right

[Guinevere]

Love it, Jeanette! Glad you had a good time and even won some money. Congrats, too, on figuring out how to post pics! You're still rocking on and that's nothing to sneeze at. Yes, the cold intolerance can start pretty quickly. Keep oven mitts or gloves near the fridge. Don't forget to start moisturizing your hands and feet now and keep it up. You know the drill. Xeloda can be a booger to deal with because of the nausea. It also got to where it made my bones hurt - especially my leg bones.

I got the tooth that broke off last week extracted yesterday. Today, I have Dilaudid hangover and just a small amount of tenderness where the tooth was. I've slept a lot already today and see more naps in my future.

God bless ~
Gwen

[jeanette57]

TO WHOM EVER YOU ARE!!! PROFOUND THANK YOU FOR THE MONEY. IF YOU PRIVATE EMAIL ME - CAN SEND THANK YOU CARD! OMG WHAT A SURPRISE

[Guinevere]

TO WHOM EVER YOU ARE!!! PROFOUND THANK YOU FOR THE MONEY. IF YOU PRIVATE EMAIL ME - CAN SEND THANK YOU CARD! OMG WHAT A SURPRISE

Me too! You have blessed us more than you can ever know. The verse on the card is one that let me know that I do have peace and has become a precious verse for me. The parental units will be blessed as well.

God bless you abundantly as you've blessed others ~
Gwen

[tchan8888]

Hi Stage IV Fighters ....

Just checking in. Just started back on FOLFIRI last week (Session 21 overall) and will be on it for at least 4 cycles. Side effects are more challenging this time. Had significant chemo brain. Trying to stay focused on the treatment, but it gets tougher and tougher to go into the infusion center. Thought I would be able to travel for work during my offweek, but don't think I will be able to manage with the ongoing side effects. It took me 5 days to even have a clear head any any energy/motivation.

Stay strong ....

Blessings,

Tom

[skypup]

hi Tom, thanks for the update. 5 days was my recovery period for folfiri, too. I'll be back on it, plus Erbitux, in a month. My doc is giving me a chemo vacation until then, which I hope to make the most of even if it is only staying home and appreciating the days. I will have a wonderful trip to Santa Fe, though. A friend is giving me a bucket list gift: we will spend three nights at Ten Thousand Waves Japanese-style spa, go to the opening night of the Folk Art Festival, and go to Santa Fe Opera's performance of Fidelio, Beethoven's only opera which I have never seen and can't WAIT to see!!!!

I went to Hawaii last week and it was a wonderful trip with 4 good friends, but the travel really took it out of me! Not sure I want to do trips that long anymore. Don't know how you do it, Tom. But I did steal a page from your book and ate really well.

Anyone else having to deal with pain? I have abdominal pain and referred pain down my leg that is wearing me down. Nothing shows on scans, although I have another next week at MDA and will ask the radiologist to look carefully there. It seems odd that we have no good way to communicate with the person reading our scans. I could give valuable info. Ah, well, that's medicine... I am trying to line up a nerve block while I am there.

Wishing all who read this a restful, comfortable night.

[Icesk8tr]

Skypuppy,
I hope you get relief from your abdominal and leg pain. Enjoy your chemo vacation and your trip to Santa Fe. It sounds like
It will be a lot of FUN!

Christine

[jeanette57]

hi group
well the oxyplatplation (spell) and xelodia is kicking butt. chemo brain is not going so well. I set the toaster on the stove and sat it on fire. Yicks, It is my first fire ever - at least I knew to pull the plug --family got me another toaster asap.

the letter and money was from out of the United States. wow - still thanks - just strange to think you guys think I have some wisdom. Hum - just God peeking out of me as I learn life lessons. the last one given with the white stone was DISCERNMENT (john) getting lots of lessons to learn this and I can't even remember the name. oh boy hard one. oh white stone is very old - mult-cultural- but so full of age and wonder and for me it works.

I have to sneak out this week and make cremation stuff. I can't let the family know as they are telling me I can make it another couple of years. Yicks- they go crazy when I try to tell them I want to be cremated. guess have to get friend to take me. is just me or do your family avoid all mention of funerals - like I am getting out of this alive-- smiling at them

the home help is great. My house is shaping up and I was able to get rid of 40% of my good suits and outfits. Everything dry cleaning was given to women's shelter. I am so happy some will look great in them. she took out 2 items for mom and that made her happy. Mom is not allowed to be here as she hordes everything.

great love and hugs to all

[Guinevere]

Jeanette, I'm so glad you didn't do damage to your house. I was laughing as I read about you prohibiting your mom from coming over while you got rid of stuff!

Saw the Princess yesterday and we ended up taking a nap after her having a bout of hiccups.

Skypup, your Santa Fe trip sounds like it will a blast! Hope you have a wonderful time.

God bless to all ~
Gwen

[Guinevere]

Jeanette,
Where are you? Sending good thoughts and prayers your way, girl!

Yesterday was a booger for me. I slept until 11 a.m. after going to sleep between 12 and 12:30. I didn't feel that great when I woke up either. My stomach rumbled most of the day and I just felt blah. Started evacuating a lot of stool as well and thought this might be a good thing since it seems I'm constantly constipated. Well, on the way to dinner about 20 miles away, I started dumping like I had just had a CT scan. Stopped at a gas station and had a pouch full. Got to the restaurant and had another pouch full. Ugh! The mess but I just did the minimum I could get by with and thought I'd clean up better when I got home. Got home and had another full pouch! Cleaned up and put on a new pouch and I'll be danged if I didn't have another sudden dump that went under the skin barrier! So, I cleaned up again and totally changed out my ostomy gear. Frankly, I felt drained after all of that.

I'm not feeling all that well today either but there's nothing I need to do so I'm gonna rest and may watch RIPD. I DVRed it the other night. Maybe it will take my mind off of Ashlee for a little while. I'm so glad we have victories here that we can celebrate because, otherwise, this board would be too hard to deal with day in and day out.

God bless ~
Gwen

[Bev G]

Jeanette,
Where are you? Sending good thoughts and prayers your way, girl!

Yesterday was a booger for me. I slept until 11 a.m. after going to sleep between 12 and 12:30. I didn't feel that great when I woke up either. My stomach rumbled most of the day and I just felt blah. Started evacuating a lot of stool as well and thought this might be a good thing since it seems I'm constantly constipated. Well, on the way to dinner about 20 miles away, I started dumping like I had just had a CT scan. Stopped at a gas station and had a pouch full. Got to the restaurant and had another pouch full. Ugh! The mess but I just did the minimum I could get by with and thought I'd clean up better when I got home. Got home and had another full pouch! Cleaned up and put on a new pouch and I'll be danged if I didn't have another sudden dump that went under the skin barrier! So, I cleaned up again and totally changed out my ostomy gear. Frankly, I felt drained after all of that.

I'm not feeling all that well today either but there's nothing I need to do so I'm gonna rest and may watch RIPD. I DVRed it the other night. Maybe it will take my mind off of Ashlee for a little while. I'm so glad we have victories here that we can celebrate because, otherwise, this board would be too hard to deal with day in and day out.

God bless ~
Gwen

((((Gwen)))))

That's all I got. Love you, Gwen.

[skypup]

Here's another: (((Gwen)))
I'm resting, too, binge-watching Orange is the New Black. Silly fun.

I got an adjustable bed frame yesterday and love it! It doesn't take the pain away, but it sure helps get comfortable! Two thumbs WAY up!

[Frenchie's Wife]

As some of.you know, I have been battling this awful disease for almost 5 years. It hasten' t been too difficult a journey for me. I am almost ashamed to tell you that I have never experienced any pain during this time. So many of you are suffering through so much worse than me. I tolerated chemo very well, with very few side effects except for extreme fatigue. That is actually the main reason I decided to stop all treatments back in February. My QOL was suffering . It is because of this forum and the many people on it that suffered through chemo after chemo only to die with a very poor QOL at the end that made me decide to die with dignity. In a hospital bed, hooked to machines and looking like death is not the way I want to be remembered. I am catholic and my religion does not permit suicide so that option is out. At the present time, my energy has returned and I feel great !! The day I quit treatment in February, I went out and bought myself a new Cadillac with all the bells and whistles. I wanted one of those for a long time but life and kids came first. I also bought myself a used camper van last week so I can go to the mountains this summer. I don't think about death much, I have had a lot of time to make piece with myself and my maker. Enjoying life to the fullest right now !!

[Guinevere]

Jeanette,
Where are you? Sending good thoughts and prayers your way, girl!

Yesterday was a booger for me. I slept until 11 a.m. after going to sleep between 12 and 12:30. I didn't feel that great when I woke up either. My stomach rumbled most of the day and I just felt blah. Started evacuating a lot of stool as well and thought this might be a good thing since it seems I'm constantly constipated. Well, on the way to dinner about 20 miles away, I started dumping like I had just had a CT scan. Stopped at a gas station and had a pouch full. Got to the restaurant and had another pouch full. Ugh! The mess but I just did the minimum I could get by with and thought I'd clean up better when I got home. Got home and had another full pouch! Cleaned up and put on a new pouch and I'll be danged if I didn't have another sudden dump that went under the skin barrier! So, I cleaned up again and totally changed out my ostomy gear. Frankly, I felt drained after all of that.

I'm not feeling all that well today either but there's nothing I need to do so I'm gonna rest and may watch RIPD. I DVRed it the other night. Maybe it will take my mind off of Ashlee for a little while. I'm so glad we have victories here that we can celebrate because, otherwise, this board would be too hard to deal with day in and day out.

God bless ~
Gwen

((((Gwen)))))

That's all I got. Love you, Gwen.

((((Bev)))))
That's all that's needed, dear friend! <3

[Guinevere]

Here's another: (((Gwen)))
I'm resting, too, binge-watching Orange is the New Black. Silly fun.

I got an adjustable bed frame yesterday and love it! It doesn't take the pain away, but it sure helps get comfortable! Two thumbs WAY up!

Thanks, Skypuppy! Woohoo for your new bedframe! Sometimes, comfort of some kind is all we can hope for. Glad you found a silly show to watch. I'm sure it helps as well.

God bless ~
Gwen