The Colon Club

Thanks for the well wishes! Today is the day. In just under and hour I will take my first 1000mg of Xeloda then get myself ready for my first Oxaliplatai infusion at 1000...chair number 5. Not quite my lucky number 3, but i will take it. i think of it as Goldschlager, the digusting alcohol we probably all had in college.

It has gold flakes in it much like the platinum based Ox, so that’s how i chose to refer to it as. Like the Ox, I didn’t care for Goldschlager, but it was the thing to do at the time and though it made me sick as a dog the next day, i always went back to it at the next ‘party’. so here we go!

Port doesn’t hurt anymore. last night i took two extra strength tylenol a few hours after the procedure and then right before going to bed. took the edge off. i slept on my back and my left side through the night without any pain. my port is on my right side. the muscles are still a tad bit tender and i do not do anything super active with my right arm, but it feels alot better than yesterday.

my head and emotions are somewhat back to normal. i stopped reading everything as i am now ‘in treatment’ and my journey is my own, nothing else is going to help or prepare me for what is to come at this point...it will all be a new experience. i am having two cappuccinos and cherrios cereal with left over Mediterranean veggie pizza as my breakfast of champions. drinking 32oz if water in preparation for the infusion.

i am in the zone...any encouragement is welcome!

we can do this, ALL of us. whatever odds we may read are stacked against us and no matter what the debbie downers may say to bring us down, this is our FIGHT and we control our own destinies! God bless everyone on this beautiful day of living!

DH

DonutHead wrote:Thanks for the well wishes! Today is the day. In just under and hour I will take my first 1000mg of Xeloda then get myself ready for my first Oxaliplatai infusion at 1000...chair number 5. Not quite my lucky number 3, but i will take it. i think of it as Goldschlager, the digusting alcohol we probably all had in college.

It has gold flakes in it much like the platinum based Ox, so that’s how i chose to refer to it as. Like the Ox, I didn’t care for Goldschlager, but it was the thing to do at the time and though it made me sick as a dog the next day, i always went back to it at the next ‘party’. so here we go!

Port doesn’t hurt anymore. last night i took two extra strength tylenol a few hours after the procedure and then right before going to bed. took the edge off. i slept on my back and my left side through the night without any pain. my port is on my right side. the muscles are still a tad bit tender and i do not do anything super active with my right arm, but it feels alot better than yesterday.

my head and emotions are somewhat back to normal. i stopped reading everything as i am now ‘in treatment’ and my journey is my own, nothing else is going to help or prepare me for what is to come at this point...it will all be a new experience. i am having two cappuccinos and cherrios cereal with left over Mediterranean veggie pizza as my breakfast of champions. drinking 32oz if water in preparation for the infusion.

i am in the zone...any encouragement is welcome!

we can do this, ALL of us. whatever odds we may read are stacked against us and no matter what the debbie downers may say to bring us down, this is our FIGHT and we control our own destinies! God bless everyone on this beautiful day of living!

DH

One down! You've got this! Take care- we are with you. Go you!

DH..of course you can do this......Was there any question? I had my port on the right side and becasue I sleep on my right side...that way I could just let the port lie on the bed next to me with a pillow over it so the intravenous line didn't tangle up when I was sleeping. Stay positive....stay hydrated....and take each day as it comes.....You will be through in no time... Andre

...side effects of oxipalitain first round so far...

when my wife and i got in about 20 mins after the infusion was done, i grabbed a gatorade out if the fridge in the garage. it was cold, but refreshing before oxi. when i drank it, it felt like i was drinking water from the antartic with freezing icicles inside. like someoe was spraying a fire extinguisher in my mouth. not unbearable, but not good either. room at room temperature was a bit better, but same sensation. from the back of my tongue to around my epiglotis there was a freezing cold sensation. not fun, but manageable.

i also grabbed a banana and biting on that was the weirdest sensation ever, kind if the feeling you get when you knock your funny bone...but in the back of my mouth, back teeth, and jaw hinges. it subsided after some chewing, but the shock of that sensation made me buckle and stop everything.

i went for a run, but the port install is heeling so ended up walking a fast paced 4 miles with no problems experienced, actually felt great! when i got back, i had warm water right out of the faucet and that was lovely. seems i figured that one out the hard way. my wife mad me toast and the same senation as before came over me with the banana earlier, but also subsided with some chewing.

and so far (touch wood) that’s all... i guess these will last for a few days and subside? i hope?

one hour now and my second 1000g of Xeloda will be going down...

anyone starting that may have questions, please feel free to ask! we are here for each other!

DH

...and my treatment was clearly explained to me today by the infusion nurse, she was amazing!

With a clean PET going in to round one, that is the best news. However, regarless...in doing chemo i get 6 months of steady treatment and 12 rounds is the standard. Now, i may not make it all 12 rounds because of low blood counts or problems handling the chemo, both of which can cause delays, but the duration will remain 6 months. i could go 8 rounds, 10, or all 12, but the time frame will remain 6 months regardless.

So i am good with that now knowing what i am facing. 6 months it is!

DH

DonutHead wrote:...side effects of oxipalitain first round so far...

when my wife and i got in about 20 mins after the infusion was done, i grabbed a gatorade out if the fridge in the garage. it was cold, but refreshing before oxi. when i drank it, it felt like i was drinking water from the antartic with freezing icicles inside. like someoe was spraying a fire extinguisher in my mouth. not unbearable, but not good either. room at room temperature was a bit better, but same sensation. from the back of my tongue to around my epiglotis there was a freezing cold sensation. not fun, but manageable.

i also grabbed a banana and biting on that was the weirdest sensation ever, kind if the feeling you get when you knock your funny bone...but in the back of my mouth, back teeth, and jaw hinges. it subsided after some chewing, but the shock of that sensation made me buckle and stop everything.


i went for a run, but the port install is heeling so ended up walking a fast paced 4 miles with no problems experienced, actually felt great! when i got back, i had warm water right out of the faucet and that was lovely. seems i figured that one out the hard way. my wife mad me toast and the same senation as before came over me with the banana earlier, but also subsided with some chewing.

and so far (touch wood) that’s all... i guess these will last for a few days and subside? i hope?

one hour now and my second 1000g of Xeloda will be going down...

anyone starting that may have questions, please feel free to ask! we are here for each other!

DH

I had that first bite syndrome. The first bite of anything a day or two after chemo I would get pain down from my ear down my jaw line. Was shocking the first time. Chewing and biting after the first was fine. Kind of weird. The cold drink was weird too. Sometimes I would forget. I did chemo in winter so always had a scarf around my face when I left.
Do you go every two weeks or three weeks? I had infusions every 3 weeks and xeloda for two. I did 6 rounds and that took 4 months.
Sounds like you tolerated your first infusion pretty well. One down.

DH,

I think I understand your post now. You go 6 months regardless of how many rounds is that right? Once six months is done regardless of how many rounds are completed. I was originally scheduled for 7 rounds but asked my oncologist if I could stop at 6 to give me a month to recover for my son's wedding. I think she scheduled 7 as that added to the xeloda I took for chemo/radiation before surgery equaled 6 months total of chemo. She didn't think one less round would be an issue.
I was thinking 12 rounds in 6 months sounded impossible but re-read your post. Again sounds like you did well.

I thought the dr would push for 12 rounds. Even though studies show 8 is just as good. Because so many lymphs were involved with me, she wanted this to go directly into my bloodstream. She sounded like 12 was my number. I guess everyone's treatment is different.

teacher2017 wrote:I thought the dr would push for 12 rounds. Even though studies show 8 is just as good. Because so many lymphs were involved with me, she wanted this to go directly into my bloodstream. She sounded like 12 was my number. I guess everyone's treatment is different.

I'm not sure what the criteria for number of rounds is. I just remember my oncologist saying with the 5 weeks of xeloda during pre adjuvant therapy and what I get after surgery would total 6 months. Isn't folfox given every two weeks so 12 rounds would be 6 months? Maybe that's why it's 12 rounds. Xelox is every 3 weeks.

i think they tell you that keying in on the standard chemo protocol. they are not going to tell you that you are going shorter in an effort to keep you focused on the standard. they have to. that's what my infusion nurse told me today. in her 25 years, she said she has not seen many make it through all 12 cycles because they can be excruciatingly tough as the body needs a rest at time to come back for the next round.

she too said 8 appears to be the magic number. so what she suggested was to figure out 6 months of treatment and just show up when i am supposed to, do the pills as precribed at home and the onc will handhold me through. that puts me to mid april. i think i will go all 12 rounds, but if 8 is what i get then so be it.

hang in there, teacher....i feel so much better about everything having this one cycle in...just waiting for side effects now and will tell you everything as this goes along to help feed you helpful information. hang in there you are almost in the chair to full recovery,

DH

DonutHead wrote:i think they tell you that keying in on the standard chemo protocol. they are not going to tell you that you are going shorter in an effort to keep you focused on the standard. they have to. that's what my infusion nurse told me today. in her 25 years, she said she has not seen many make it through all 12 cycles because they can be excruciatingly tough as the body needs a rest at time to come back for the next round.

she too said 8 appears to be the magic number. so what she suggested was to figure out 6 months of treatment and just show up when i am supposed to, do the pills as precribed at home and the onc will handhold me through. that puts me to mid april. i think i will go all 12 rounds, but if 8 is what i get then so be it.

hang in there, teacher....i feel so much better about everything having this one cycle in...just waiting for side effects now and will tell you everything as this goes along to help feed you helpful information. hang in there you are almost in the chair to full recovery,

DH

I had first bite syndrome, but I think it kicked in around round 2/3. It seemed to lesson as treatment progressed. I know about cold sensitivity so drank everything room temp until day before next round I could stand a milkshake.

I was cut from oxi after round 7. So I did not make the full 8, but was ready to do it, even though recent studies (ASCO) suggest 6 is only 2% less effective as 12 and reduces chance of permanent neuropathy down from 85% to 15%. That was the big difference. My lymph involvement was only 1 out of 27 and it was the one closest to the tumor, only .1mm from the tumor itself as tumor spread just shy of the outer wall. >.1mm in some areas. It was also graded as low/slow growing and well to moderate differentiated.

My onc said after round 7 I'd had enough as my counts had been trashed right after treatment - mostly neutrophils. Then all the growth factor shots started morphing my red blood cells and reducing them along with platelets to dangerous levels. So onc pulled me off and now I'm doing leucovorin with 5FU only - well along with the standard anti nausea steroids. I Just received treatment 11 and still packing my pump (mona) until tomorrow.

I went in with clean scan other than the original tumor which was removed via robotic assist ULAR 5 weeks prior to Chemo.
Had a port installed in between.

I have another CT scan on 20th and hoping/praying it comes back clean.

Treatment gets progressively harder as you go along, but after stopping of OXI - 5fU and leucovorin seem a cakewalk.
I've been improving since 2 weeks after stopping OXI. Both on counts and energy.

You can do it, just make sure all symptoms are reported to ONC so they can monitor neuropathy and perhaps introduce other tests like LDH during your blood draws.
It's a delicate balance to make sure you're body isn't getting too damaged from the chemo, while keeping up with the treatments.

Good luck.

benben,

thanks for the readout. we are close to the same diagnosis..i was called at T3 N1 (scant invasion) M0 with 25 nodes and 8 inches of sigmoid colon removed. the tumor did not break out of the colon, was G2 and moderately differentiated

the colonoscopy doctor said i was the, "luckiest son of a bith ailive!"' he suggested the tumor may have been there 6 years or more. EFF ME! when he broke the news, said it was the right cancer to have, highly responsive to treatment, no colon blockage, centered in the sigmoid, somewhat flat, less than an inch in length by half inch in size, and not yet extending outside of the colon.

i dunno, i would not consider myself lucky being diagnosed with cancer though it appears to be a favorable diagnosis. i just think of it this way...some day something will take me, but it will not be this shit. i plan on living another 30 years at least, a great life both cancer and illness free. i want to be a fun grandad one day. this was not genetic, i do not carry the gene. probably environmental, but who really knows?

keep in touch and please let me know how it goes...you will beat this, we all will.

DH

For first bite, this is what helps me. Take a bite but do not chew. Move it towards the center and back part of your tongue. Slowly transfer it to the back side. Let it sit there and then transfer to other side. You will still feel first bite but you can slowly get those taste buds woken up with less pain.

For cold drinks, I sometimes just let it sit in my mouth for a bit to warm them up before swallowing.

If you are doing 5FU, you will probably get thrush in your mouth. As soon as you see evidence, talk to your oncologist. She can prescribe Magic Mouthwash. It will help take care of that.

Good luck and you got this!!

I wish I had done chemo after my resection. I may not have been going through this journey now.

Oh well, shoulda, coulda, didn't. All in the past and can't be changed. I am fight the beast and am determined to win.

DonutHead wrote:benben,

thanks for the readout. we are close to the same diagnosis..i was called at T3 N1 (scant invasion) M0 with 25 nodes and 8 inches of sigmoid colon removed. the tumor did not break out of the colon, was G2 and moderately differentiated

the colonoscopy doctor said i was the, "luckiest son of a bith ailive!"' he suggested the tumor may have been there 6 years or more. EFF ME! when he broke the news, said it was the right cancer to have, highly responsive to treatment, no colon blockage, centered in the sigmoid, somewhat flat, less than an inch in length by half inch in size, and not yet extending outside of the colon.

i dunno, i would not consider myself lucky being diagnosed with cancer though it appears to be a favorable diagnosis. i just think of it this way...some day something will take me, but it will not be this shit. i plan on living another 30 years at least, a great life both cancer and illness free. i want to be a fun grandad one day. this was not genetic, i do not carry the gene. probably environmental, but who really knows?

keep in touch and please let me know how it goes...you will beat this, we all will.

DH

It is a good day when your onc calls you a lucky SOB! I could only wish. I wish I knew how I got it and what I can now do to prevent it! I hear all this info on cannibis oil and alkalining the body, and some say it's everything in moderation. Don't know what to believe! I have an onc appt on the 25th for blood work and consult. Hoping this gets rolling soon. I assume it's because I have bronchitis and need the meds gone from my system. Meeting with the work dr to try to get back to work on Monday. Some normalcy please!

Robino1 wrote:For first bite, this is what helps me. Take a bite but do not chew. Move it towards the center and back part of your tongue. Slowly transfer it to the back side. Let it sit there and then transfer to other side. You will still feel first bite but you can slowly get those taste buds woken up with less pain.

For cold drinks, I sometimes just let it sit in my mouth for a bit to warm them up before swallowing.

If you are doing 5FU, you will probably get thrush in your mouth. As soon as you see evidence, talk to your oncologist. She can prescribe Magic Mouthwash. It will help take care of that.

Good luck and you got this!!

I wish I had done chemo after my resection. I may not have been going through this journey now.

Oh well, shoulda, coulda, didn't. All in the past and can't be changed. I am fight the beast and am determined to win.

You will win. Don't beat yourself up over not having chemo. Were you even given the choice? I didn't want to do it but my oncologist and husband
persuaded me. I don't know if it made a difference but it did leave some side effects I'm still dealing with and probably will forever. And it wasn't easy
going through it either. I still worry even though I did have chemo. Stay strong and don't think back, move forward. You have such a positive attitude.