New to Forum-So Many Questions

Welcome, friend!

And we're here for your questions. Pile them on. 

While I can only address one or a few, others with experince in that area, will pop on, as the days go by, and share what knowledge and advice, they have. 

So, here goes:

1. Has anyone been on this treatment protocol and what was their experience?

I can help you with part of this. I was on FOLFOX. While having the Oxaliplatin, I did 48 hour pump of 5FU - the liquid version of your Xeloda pill -

Side effects. Well, My own personal experience means I could list many, many. But that ightscare you, and others side effects are pretty mild, and others still, fall somewhere in-between. 

You will not know, and cannot tell, just how the chemo will affect you personally.  Some things are prettu much a given, though. Cold sensitivity. Touch something even luke warm, and you're going to get an electircl shot type feeling. Not nice, but short lived.  No cold drinks, gloves on when going into the fridge. Going outside in the cold. Touching door handles.  I dropped more yogurt than the cown producing milk. Not easy to clean up. 

Fatigue can be a problem, is usually a problem. It can vary in degrees, and again, depends on you as an individual. 

Nausea. Take those nausea meds. I skipped my Zofran once, because, holding it under my tongue made me retch. Well, a little retching is just fine, becasue it beats that constant need to throw up. 

I'll let others share some more, for you. I dont want to monopolize. 

I will post the link to my list of FOLFOX side effects, but will warn you, it is not pretty, sometimes graphic, and I was on the extreme end.

I also did 30 radiation treatments while hooked up 24/7 to my cocktail of 5FU.  Radiaton was HELL! Others, not so much. So, prepare for bad and be happy when its good - or goodish -

2. I can't seem to lock my doctor down to the staging of the tumor.  While the MRI indicates that the tumor is a T3b, how does this convert to the actual staging?  My doc tells me that he sees only one suspicious node and doesn't seem to think there is really any nodal involvement. 

The best way to stage a tumour is to have it removed and a biopsy performed. Cutting or needling a tumour can release Cancer cells. Just go with the flow, and call yourself Stage T3B.

3. Assuming the plan at the end of the day is a temporary ileostomy with a takedown sphincter sparing surgery, what can I expect?  I have read horror stories on the internet and almost feel as if I should just opt forthe colostomy bag.

Can't advice at all on this one, but many of my friends here, can. 

Oh, keep a note book. A DETAILED notebook. Everything goes down, even the bogies that feel like razors in your nostrils. Nothing is too small or insignificant for your note book, and then your Oncologist.  Your Oncologist WILL listen to you. If he thinks he's busy, remind him that he isn't. 

Good luck, hardly seems like the right comment. Just know, we're all in the same boat, either ourselves personally, or our loved ones. 

Tru

I've been through the FOLFOX as well

1. Has anyone been on this treatment protocol and what was their experience?

I have had 12 sessions of the FOLFOX (that is the 5FU stuff with the Oxaliplatin, like TunaDog and Tru). I will concurr that you do not want to miss taking the anti-nausea meds. For my side effects, I had a fever whenever I was on the take home 5FU pump, had a cold sensitivity that increased over the duration of my chemo, and I still have a little lingering neuropathy in the form of numbness in my finger tips. I am now just over a year past my last chemo treatment. It isn't enough to interfere with my day to day life, but during my treatment, I was starting to get to the point where I was beginning to lose my fine motor control for things like typing. I hit a LOT of wrong keys during that time.

 

2. I can't seem to lock my doctor down to the staging of the tumor.  While the MRI indicates that the tumor is a T3b, how does this convert to the actual staging?  My doc tells me that he sees only one suspicious node and doesn't seem to think there is really any nodal involvement. 

I could be wrong, but I think the staging also has to do with the amount of spread, and how much other organs are involved. Mine was stage 4 not because of the size, but because it had spread to the lymph and peritonial tissue. I think the staging also involves how deeply the tumor has penetrated the tissue. Something located on the surface being easier to deal with than something that has penetrated into the muscle wall for example.

3. Assuming the plan at the end of the day is a temporary ileostomy with a takedown sphincter sparing surgery, what can I expect?  I have read horror stories on the internet and almost feel as if I should just opt for the colostomy bag.

I had a temporary ileostomy for about a year, and had my reversal just over a year ago. My cancer was a little further up the line from yours, but my experience with my resections has not been nearly as bad as what I have heard and read about. In terms of pain and discomfort, as long as I payed attention to what I was eating, I didn't have much trouble. What you eat GREATLY affects the consistency of what comes out, and I had to pay a lot of attention to eating foods that caused gas and such. An Ostomy bag can and will inflate like a balloon till it pops right off your tummy, which you REALLY won't enjoy any part of. Overall though it wasn't anything that can't be adjusted to. 

Post reversal, I still have to pay a little more attention to what I eat. I can still feel things like raw vegies or popcorn when it passes over the resection points. Most days I feel more tired than I used to before chemo, but I think that is gradually improving. I have heard it can take quite a while for all the chemo effects to pass. Some people find they linger, but I'm hopeful that I will work through it eventually.

Good luck, and stay positive. That one simple thing will make a huge difference for you.

Thomas

Hello and welcome. This is a

Hello and welcome. This is a really scary and overwhelming time for you. It'll get better and being on this forum is much better than Googling things that may be out of date or not accurate at all.

I didn't have your protocal for chemo so I can't address that. As for staging, they didn't stage mine until I had the surgery to remove the tumour and my understanding is that that's pretty typical. I had a temporary illeostomy done but have decided to keep it. It is reversible but my quality of life is better with it due to previous IBS that severely affected my life negatively. I do sometimes wonder if I'd have been ebtter off with a colostomy but I don't know enough about them to say either way. 

Jan

Ileostomy

I had an ileostomy for 6 weeks.  It wasn't fun, but I learned to cope with it.  Then had it reversed. All that in 2010.  Been NED(no evedence of disease) since.  Only side effect: occasional diahrrea.  Since you are only 51, I consider you just a kid.  I was 77 when dxed- am currently approaching 86. 

It may be a bumpy ride, but it is doable, so just take it a day at a time.  Good luck!!!

Cindy225 said:

So Many Questions

Oh-my completely understand how your brain is whirling with emotions and trying to cope with your diagnosis.  It’s life changing and feels crazy. I was originally diagnosed with early stage rectal cancer in October 2016 during a routine colonoscopy and later restaged to III B after having the LAR surgery and 7/13 lymph-nodes were involved.  Agree with the other comments that the pathology reports determine final staging.  

I went through 8 cycles of Oxaliplatin and 12 cycles of 5 FU every 2 weeks.  Although, I had all the side effects that have been previously mentioned I got through it relying a lot on mindfulness and walking. I still have some neuropathy in my hands and toes and my hair is finally starting to fill in.  

I also had a temporary ileostomy which was reversed in July 2017. I’m glad I had the reversal but I was anticipating the surgery, recovery and new normal to be the “victory lap” which it was not.  Had I been better mentally prepared that surgery is surgery and healing takes time including the new normal I would have coached myself differently.

Having gone through it all I am currently NED.  I have the 18 month scan in early March so scan-xiety is starting to set in a bit…

That said, life is good now.  Just got back from a mini college re-union in Utah and I am so grateful that I could fly, eat, go to movies and function normally.  I am running again and starting my training plan for a 10 miler in May.  Cancer will always be a part of my life. Right now I’m living life completely.

I know you are at the beginning of your cancer journey. Take it one day at a time...

Cindy     

How much of your hair did you

How much of your hair did you lose? was it just thinning, or did you need a wig? I have long, thick hair. I am hoping it only thins. Silly considering I am stage 4 that I would worry about my hair, but I do.

Hello

I don't wanna say welcome to the forum but here we are.  I had 5-Fu with oxaliplatin for 3 cycles, didn't have any problem with that.  I shifted to the oral form of 5-Fu, Xeloda, with oxaliplatin and this time, it was more of a struggle than the 5-Fu.  But they were tolerable.  I also didn't lose my hair, thinned a bit but didn't go bald.   Didn't have nausea and neuropathy.  Just fatigue around 3 days after infusion, mainly because my entire hand is very very numb (the oxaliplatin must be very strong for it to completely numb my hand). I have an ileostomy and have no plans of having it reversed.  Sure, my sleep is interrupted because I have to drain it from time to time, but I'm loving it.  I only have to drain it when its full, as opposed to my life before it when I'm at the bathroom every 10 minutes.  

So many emotions

Hello, From the sounds of things, I got off pretty easy, I was diagnosed with stage 3 colon cancer 4 years ago, went thru 6 months of chemo treatments every other week, survived that and picked up my life.  Christmas this year found out my cancer had matatasized to my lung.  Had lung surger February 8, no need for Chemo.  So....why am I so depressed.  I've been so fortunate to have excellent doctors and oncologists  and surgical results but I feel no joy.  What can I do?  Is this normal?  I'm so much more depressed than when I was litterly fighting for life.

I know...

Tru:

I know that you meant to type "gut punch" instead of guy punch but maybe this is one of those Freudian slips?  Do you not like us guys?

Just teasing.  Keyboarding with a cast is challenging.  I once fractured my wrist (dominant hand) and was casted up to my shoulder.  My writing was terrible, but it resembled the handwriting of a doctor.

Regardless, we've just got to keep rolling with the punches, even if some guy did it to us.

Jim

PetMom said:

So many emotions

Hello, From the sounds of things, I got off pretty easy, I was diagnosed with stage 3 colon cancer 4 years ago, went thru 6 months of chemo treatments every other week, survived that and picked up my life.  Christmas this year found out my cancer had matatasized to my lung.  Had lung surger February 8, no need for Chemo.  So....why am I so depressed.  I've been so fortunate to have excellent doctors and oncologists  and surgical results but I feel no joy.  What can I do?  Is this normal?  I'm so much more depressed than when I was litterly fighting for life.

I think that's completely

I think that's completely normal. I was pretty upset when I found out mine had gone to my lung, too. I'd thought I'd beaten it for almost a year. It took some time for me to accept it. I'm still choked about it but all the extras I seem to get that have to do with having cancer but not directly from the cancer take my mind off of the cancer itself. It almost seems secondary to the other crap.

I think when you're actually fighting for your life you have a different focus and now it just seems like it adds insult to injury. Sounds like you're doing great, though. Continued good success with it! Yay for no chemo! I start back on it tomorrow.

Jan