The Colon Club

heiders33 wrote:Congrats! I remember that 5th cycle being an absolute whammy. So glad that you are done! Go out and celebrate!

Whammy is right. Nausea right off even with whatever I got iv. This response is taking me forever to type due to claw hand, uncooperative fingers.
I can't wait to celebrate.

Caat55 wrote:Just finishing round five, last one. Symptoms come on so quickly now. This time already experiencing nausea and fatigue. Skin down there bleeds when I blot after peeing. Everything is so fragile.
Good news though, we ordered aTesla 3 four years ago when released, wepick up tomorrow. Something to look forward to, new car smell, long gasfree drives with husband as we explore Tesla network
Susan

Congratulations! Both for the last round of chemo and the new car!

Claudia

Thank you

Atoq wrote:

Caat55 wrote:Just finishing round five, last one. Symptoms come on so quickly now. This time already experiencing nausea and fatigue. Skin down there bleeds when I blot after peeing. Everything is so fragile.
Good news though, we ordered aTesla 3 four years ago when released, wepick up tomorrow. Something to look forward to, new car smell, long gasfree drives with husband as we explore Tesla network
Susan

Congratulations! Both for the last round of chemo and the new car!

Claudia

Congrats! Last one! Report from the front: wine will be TASTY again in five weeks!
Terri

Congrats on completion! Such a great feeling when you're done.

Congrats! Time to celebrate on your success!

So I just came from oncologist's office. He ordered a CEA level and said I don't to any other tests until I come back in six months. That seems a long time. How do I know what's going on inside? Effectiveness of chemo?
S

Shana wrote:Congrats! Time to celebrate on your success!

How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S

Caat55 wrote:

Shana wrote:Congrats! Time to celebrate on your success!

How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S

This is the surveillance schedule that my oncologist at Dana Farber recommended:

Three months after you complete the chemo, we will perform a CT scan to make sure you are disease free and then plan for ileostomy reversal and port removal. I or my NP will see you every 3 months for two years and every 6 months for 3 years thereafter. [surgeon] will perform a colonoscopy 6-9 months after ileostomy reversal and usually yearly thereafter for at least two years. CT scans annually for 3 years.

I had a CT scan this week because my CEA accelerated above normal levels but my oncologist at Dana Farber would have ordered one three months after the end of chemo. The schedule is off from his suggestion because the surgeon said that she could do the reversal one month after the end of chemo. I am going to have the Barium Enema (that doesn't use Barium) and I assume that that is some kind of scan as well.

You might ask your oncologist what his or her surveillance protocol is.

NHMike wrote:

Caat55 wrote:

Shana wrote:Congrats! Time to celebrate on your success!

How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S

This is the surveillance schedule that my oncologist at Dana Farber recommended:

Three months after you complete the chemo, we will perform a CT scan to make sure you are disease free and then plan for ileostomy reversal and port removal. I or my NP will see you every 3 months for two years and every 6 months for 3 years thereafter. [surgeon] will perform a colonoscopy 6-9 months after ileostomy reversal and usually yearly thereafter for at least two years. CT scans annually for 3 years.

I had a CT scan this week because my CEA accelerated above normal levels but my oncologist at Dana Farber would have ordered one three months after the end of chemo. The schedule is off from his suggestion because the surgeon said that she could do the reversal one month after the end of chemo. I am going to have the Barium Enema (that doesn't use Barium) and I assume that that is some kind of scan as well.

You might ask your oncologist what his or her surveillance protocol is.

Thanks MIke, see you again in six months just didn't sound right. I will email my surgeon and second opinion oncologist to see what their protocal is as well.
S

Caat55 wrote:How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S

First and foremost, CONGRATS on completing your tour of duty! Yay! It probably feels surreal right about now when you look back on what all you have been through this past year. I completed my last chemo treatment two years ago and sometimes it’s still hard to mentally wrap my brain about what all I went through and how it made me feel. This is definitely an experience that sticks with you over time.

I had a CT scan one month after my last treatment and only because I had a slightly enlarged spleen (which can happen from the FOLFOX treatment) was I able to get a CT scan authorized by insurance at the six month post chemo stage. Now the first year after my last treatment, I had blood work done and met with either my oncologist or a nurse practitioner every three months at the center to review results and discuss side effects, etc. My CEA is not a good marker for me as it was something like 1.6 at diagnosis, but I still get it measured per the protocol. So now I do a CT scan just annually (just met today with onc and am still NED ) and also meet at the six month mark with the nurse practitioner and have blood work done then as well. I will do this until I am five years out from last treatment as long as everything continues to show NED. I have never had a PET scan—only CT scans of chest/abdomen/pelvis and only had one MRI after initial diagnosis from colonoscopy.

It can be a scary feeling thinking there is no active looking for cancer, but I choose to look at it as freeing—free from treatment for another six or twelve months. Enjoy your new found freedom!

Hi guys, while im delighted to see u all come through this alive and kicking,,, I on the other hand am n the horrors
I'm post 1st FOLFOX chemo 5 days,,, while I thought I would choak to death day after disconnect, Thursday
Today Sunday I feel kinda" normal"

As per New European protocol, I'll do 4 months but, and a big BUTT, it looks as u guys across the pond do evey 3 weeks where as I do 2 week cycles so effectively the same thing ( 8 rounds)

My question is will it continue like this where I get a break from the torture in-between???? Or is this a false sense of security????
This I think I can cope with if it doesn't get any worse!!!

I can't drink on my bad 3 days so going to ask for a bag of fluids on disconnect day( base ball in troath) like u Sharon.....

They already add magnesium to the chemo on infusion day, so t least I'm not concerned about elecroites and take a slow release sodium tablet belong to my son

Hot regular tea seems to be my only thing to drink but can't get n 2lt of that
Any help would be great
Thanks Adele

Hi Eleda—

I too did eight rounds of FOLFOX. Not everyone does the Xelox regimen with the pills—I barely made it out alive taking all of those Xeloda pills during radiation, no way was I going to be able to do all that was needed for the Xelox regimen. As for the rebounding on your off weeks, I was pretty similar to your first experience. I always did infusions on Mondays and disconnects on Wednesdays and by the following week I felt as normal as was possible. I could drink cold drinks again. I was fortunate in that I was never nauseated during all 8 rounds. For me, the biggest issue was probably keeping hydrated—the last four rounds I would stay longer at the center after disconnect and have them give me a bag of fluids for safe measure. I also had to have Neulasta shots after most of my rounds because my red blood cell count was on lower end. I never had more than the usual pins and needles feelings in my hands due to the cold sensitivity, but right as I was starting last infusion the neuropathy started in my feet and the tingling in hands also started to increase. Took about 8-12 months post chemo to not have tingling in hands anymore, but over two years out and my feet are not back to normal so I can’t assume that will change. However, they are not really hurting, just more of an odd feeling that does not thankfully restrict me from walking and running, etc. it’s amazing the spectrum of experiences from these drugs, no two people have quite the same experience. I hope you continue on with the next seven rounds being as relatively low-key as possible.

Eleda wrote:Hi guys, while im delighted to see u all come through this alive and kicking,,, I on the other hand am n the horrors
I'm post 1st FOLFOX chemo 5 days,,, while I thought I would chick to death day after disconnect, Thursday
Today Sunday I feel kinda" normal"

As per New European protocol, I'll do 4 months but, and a big BUTT, it looks as u guys across the pond so evey 3 weeks where as I do 2 week cycles so effectively the same thing ( 8 rounds)

My question is will it continue like this where I get a break from the torture in-between???? Or is this a false sense of security????
This I think I can cope with if it doesn't get any worse!!!

I can't drink on my bad 3 days so going to ask for a bag of fluids on disconnect day( base ball in troath) like u Should.....

They already add magnesium to the chemo on infusion day, so t least I'm not concerned about elecroites and take a slow release sodium tablet belong to my son

Hot regular tea seems to be my only thing to drink but can't get n 2lt of that
Any help would be great
Thanks Adele

The two full options are:

8 Cycles of Xeloda + Oxaliplatin for three weeks per cycle = 24 weeks or about six months
12 Cycles of FOLFOX for two weeks per cycle = 24 weeks or about six months

So folks on Xeloda + Oxaliplatin for 8 cycles is the equivalent of FOLFOX for 12 cycles.

I had two one-week breaks for low lab numbers or where I wasn't feeling well.

The electrolytes are a good idea - I needed them daily for a while after an infusion.

Finding enough hot things to drink was a problem that I had as well. Soup, hot chocolate (with low sugar), tea, coffee, hot orange juice, ginger slices in hot water - tried lots of things. An electric kettle came in very handy.

Eleda wrote:Hi guys, while im delighted to see u all come through this alive and kicking,,, I on the other hand am n the horrors
I'm post 1st FOLFOX chemo 5 days,,, while I thought I would choak to death day after disconnect, Thursday
Today Sunday I feel kinda" normal"

As per New European protocol, I'll do 4 months but, and a big BUTT, it looks as u guys across the pond do evey 3 weeks where as I do 2 week cycles so effectively the same thing ( 8 rounds)

My question is will it continue like this where I get a break from the torture in-between???? Or is this a false sense of security????
This I think I can cope with if it doesn't get any worse!!!

I can't drink on my bad 3 days so going to ask for a bag of fluids on disconnect day( base ball in troath) like u Sharon.....

They already add magnesium to the chemo on infusion day, so t least I'm not concerned about elecroites and take a slow release sodium tablet belong to my son

Hot regular tea seems to be my only thing to drink but can't get n 2lt of that
Any help would be great
Thanks Adele

Adele,
I haven't seen you post in a while, glad to hear you made it through first round.

I also had, have the rock in my throat which doesn't go away, a fan or cool temps make it worse. My tongue and roof of mouth feel funny as well. I can only tolerate warm liquids. My feet and hands are intolerant of cold, I wear garden gloves, New of course, to hold veggies, eggs when preparing meals? Sadly, each infusion is a little more challenging. I went Thursday, pooped out Saturday and Monday back to work. This final time, sick immediately and for about 7 days.

Started an strengthening program for pelvic work, abs and glutes yesterday. A 12 week course to prepare for reversal. I have to schedule a barium enema according to surgeon.

I can't wait to be able to tolerate cool, want to go kayaking and enjoy some time camping. I notice I don't heal well if nicked, bumped or mosquito bit.

Susan