10 down, 2 to go

kathleenss

Hi.

I wrote a couple of weeks back when I had just 3 Folfox sessions to go, and suddenly I was scared to death after being really, really strong up til then. Thanks to y'all and some good friends who listened and prayed, I went in and I am back to whatever normal is. Now, I have only 2 left. I see my doctor before the next session, and I need help.

What questions do I ask? I know there is some scheduling over the long, long term. Could you help me?

Also, what do I expect after chemo is over? I thought I was relatively home free, but I have been reading here about side effects that not only lasted long after chemo ended, but some that are permanent and some that didn't even show up until after chemo was over! I don't know what to expect.

I have a great oncologist to whom I can present any question at all. My surgeon is the same. They are both kind and loving. They frequently hand out hugs after the office visit. Please help me get my mind organized and get all my ducks in a row.

Kathleen

kmygil

Hi Kathleen,

Congratulations on 10 down!!!! it's wonderful that you only have 2 more to go. The best advice I can give you is not to get ahead of yourself.

As far as long-term/permanent side effects, the best advice I can give is to monitor yourself carefully. For instance, if the numbness/tingling doesn't subside FULLY before the next session, postpone it. Be sure that your blood counts are good. Be sure that you are nutritionally optimized and stay hydrated.

Since many of the side effects are cumulative, it is increasingly important to really evaluate where you are after each treatment. I know this all sounds very basic and common sense-like, but I know when I was getting toward the end, I just couldn't wait for it to be over, and I couldn't bear the thought of postponement, so I kinda/sorta of didn't tell my onc when the numbness/tingling hadn't subsided fully, and I am now dealing with rather bad neuropathy. My fault!

You hang in there. We are all pulling for you!!!

Kirsten

robinvan

Hi Kathleen,
What a great feeling... only 2 to go. The end is in sight.
In 2004/05 I had a 6 month/12 session protocol similar to yours. My oxaliplatin was switched with irenotecan for the last 3 months.
I can vividly recall the sense of relief and freedom when the port was de-accessed for the last time. Generally I took it easy. I stayed off work for another 4-months to allow for my constitution to be restored. It was a great 4 months!! Very restorative. I very quickly found my sleep pattern restored and gradually began doing more things.
I've heard people say that for Chemo recovery you can count on at least as many months as you were on Chemo. For myself I was back to work and most things after 4 months. I didn't have any lasting neuropathic problems, but I'd already been off oxaliplatin for 3 months.

Good luck in your next few treatments.

Rob

kathleenss

robinvan said:

Hi Kathleen,
What a great feeling... only 2 to go. The end is in sight.
In 2004/05 I had a 6 month/12 session protocol similar to yours. My oxaliplatin was switched with irenotecan for the last 3 months.
I can vividly recall the sense of relief and freedom when the port was de-accessed for the last time. Generally I took it easy. I stayed off work for another 4-months to allow for my constitution to be restored. It was a great 4 months!! Very restorative. I very quickly found my sleep pattern restored and gradually began doing more things.
I've heard people say that for Chemo recovery you can count on at least as many months as you were on Chemo. For myself I was back to work and most things after 4 months. I didn't have any lasting neuropathic problems, but I'd already been off oxaliplatin for 3 months.

Good luck in your next few treatments.

Rob

I'm trying not to be impatient. My only really bothersome problem is sores in my mouth, throat, etc. I hope those don't stay around. I've worked nearly full time all the way except for the 4 weeks after the surgery. Sleep is the most tempting thing I can think of! My job is rather sedentary, but then, so am I. Thanks to both you and Kirsten for the encouragement. What a job - Patience?! I'll try. I so want this to be over.

hopefulone

Congratulations on the only 2 to go! That's a milestone. Sorry I don't have any advice for you from experience on completing treatment, but I'm wishing you all the best.
God Bless
Diane

taraHK

Yea! I'm 11 down, one to go, so we can be celebration buddies!

This is not my first time round, so I have a little experience to share.

First, ask your doc what the plan is for monitoring and follow-up. S/he should have a definite plan for this. I will be having a scan 4 mos after chemo ends, and then regular monitoring kicks in after that. The schedule can vary, place to place. Most people have colonoscopy scheduled, and CT and or PET. The frequency gradually decreases the further you get from the chemo.

Second, some people experience quite strong emotions as chemo ends, as they switch from "warrior" mode to "waiting" mode. You might want to be prepared for that.

In my experience, most of the symptoms from chemo faded very quickly (including mouth sores - ouch!). The only exceptions were toe/finger tingling and general energy levels. For tingling, mine did go away almost completely but it took about a year. I took vit B6. For energy levels, hard to say. I, of course, was determined to throw myself back in everything right away. It probably took 6 mos before I was fully back to normal.

Good luck and have fun celebrating

kangatoo

taraHK said:

Yea! I'm 11 down, one to go, so we can be celebration buddies!

This is not my first time round, so I have a little experience to share.

First, ask your doc what the plan is for monitoring and follow-up. S/he should have a definite plan for this. I will be having a scan 4 mos after chemo ends, and then regular monitoring kicks in after that. The schedule can vary, place to place. Most people have colonoscopy scheduled, and CT and or PET. The frequency gradually decreases the further you get from the chemo.

Second, some people experience quite strong emotions as chemo ends, as they switch from "warrior" mode to "waiting" mode. You might want to be prepared for that.

In my experience, most of the symptoms from chemo faded very quickly (including mouth sores - ouch!). The only exceptions were toe/finger tingling and general energy levels. For tingling, mine did go away almost completely but it took about a year. I took vit B6. For energy levels, hard to say. I, of course, was determined to throw myself back in everything right away. It probably took 6 mos before I was fully back to normal.

Good luck and have fun celebrating

Not far to go now Kathleen....soon, in no time you will be telling us the chemo is finished.
Tara made a good point about the effects of completing chemo. In some ways it is emotional for a lot of people(I was one of them).
It is kinda like having "your security blanket taken away"......you don't like doing it but knowing chemo is doing some good is a form of security. When it finishes there is always the question as whether coming off it will allow the cancer to return I think most of us felt that way so be prepared.
Nonetheless, look forward to all the horrid feelings leaving you...the bad taste, mouth sores etc.
I am 3 years out from my last chemo, NED and reasonably healthy but to be honest a couple of side effects remain. One is poor sleep, the other is some memory loss.....chemo brain we call it. Everone reacts differently but these things are a small price to pay....being NED overshadows the small inconveniences.
All the best and try to look forward to throwing chemo out tha window!
Ross and Jen