Newbie - Colon Cancer Stage 2B - T4 - Folfox regime with port

Wendolyn

You are awesome!
Can I just say that! Wow! It is so great to hear from you guys and get support. Thank you for all the advice. My second round went well this week. Except for the neurothopy in fingers and feet this time and neck.. everything seemed a little easier.

I have been taking your advice to. It is so nice just to hear how everyone dealt with this... and how they are doing. It is comforting. Thank you for taking the time. I hope I can be of help too.

Wendolyn

westie66 said:

FOLFOX chemo treatment
Hi Wendolyn: I'm actually a visitor to this board as I have gallbladder cancer with seeding to the peritoneum. But the chemo treatment I'm getting is the same as for colon cancer. I got the severe neuropathy right during the first treatment, almost as the oxaliplatin was going into my PICC line - it felt like my face was falling off and my hands were shaking and my pupils were very dilated. I mistakenly took a cold glass of water with pills and my throat seized up as did the nerves around my mouth - what an awful feeling. The first thing I did was have the amount of oxaliplatin reduced by 40% and the infusion rate slowed by half. That really helped! Some people on this board recommended 5grams/day of L-Glutamine powder mixed into juice or milk or some liquid and so I've been doing that daily ever since, plus taking VitB6, Calcium/Magnesium, and Alpha Liloic Acid supplements. All of that together and I haven't had a problem since treatment 2. Whateer works! I drink cold water and eat ice cream!
My cocktail is oxaliplatin/irenotecan/5FU on a pump. The irenotecan and 5FU cause severe diarrhea which isn't pleasant as the 5Fu affects the mucous lining of orifices like the nose, throat, and the diarrhea exit point. For the first I gargle with club soda but am now going to move to a prescription mouthwash as it is getting worse. For the diarrhea, I use baby diaper rash cream, cottonelle wipes, and soft soft toilet paper.
You may get the sweats after awhile (perhaps from the Emend) which means you drip drip drip especially with a change in temperature. something happens to the body's ability to regulate temperature but I think it is also a good way to get rid of the chemo toxins.
For the fatigue, I rest when it comes on and then walk my dog. I also sip a bit of Rock Star energy drink but not much.
For the nausea - well, they give us so many pills to take before, during, after that I haven't had a problem with this.
Your hair may break off in places. I use an overnight hair serum which helps. This is from the oxaliplatin I think.
Hope these suggestions help. Every body reacts differently.
Cheryl

Great advice...
I am taking all of this to heart. I really would like the neuropathy to go away. I saw L-Glutamine on some other posts here ... I will try it. I have been trying to take a regular vitamin regime.

There is a little something going on with my lungs... almost like I feel the start of something coming on ... but it hasn't progressed any further than that. Did you ever have anything in your lungs?

I did have some sweats one night. I am glad you said what you did... I am 48 and haven't went through menopause and I have heard sometimes chemo progresses that process. :-) We will see how it goes!

Wendolyn

Steve Z said:

2 years from 2B
Sorry you had the need to find the board, but you'll be glad you did. I'm 2 years from my resection year and half from my 12 folfox treatments. Exercise was tough for me, treatments through the winter left me indoors. It got me out of shoveling snow though. Keep an open communication with your oncologist. They can make adjustments, lengthen your infusion time, add other meds etc. that can help. I had a few blood issues which delayed a treatment or two so my counts could come back up. I got discourage by this at first but it actually was a nice break that my body needed.

I had my port removed last week after my one year post chemo colonoscopy came back clear. I don't need another colonoscopy for 2 years, just CT's. Set some short term goals and you'll be done before you know it.

Congrats on port removal!
Congrats on getting your port removed! I can't wait for that day! That is great. Has your neurothopy gone away?

Will do with the short term goals!

Sundanceh

Hi Wendy:)
I'm late checking in to your post, but just wanted to say howdy and welcome:)

I've done alot of what is out there. I'm a stage IV and have just finished a year long battle with my 3rd recurrence. I've been actively fighting cancer for 7-years though.

I've had cancer 3 times - and I've knocked it back down 3 times. So far, so good. I mention only because I sense that you are the type of person who is looking for some hope from people with this disease.

Maybe my story will give you some of that hope that you are looking for. Many days, I wonder how I have stayed alive this long. I'm still working during all of this time as well.

This past year with my last recurrence really tested my metal though and it was very difficult at times, but I made it through the surgeries, radiation and chemo treatments. Anytime I see a new person, I always try and go back to the beginning of my journey and put myself back in their shoes and what they are feeling for the first time.

It always helps to keep my perspective in line, because all of us are so many various stages of fighting or cancer. I'm at the tail end - and you're at the beginnng.

My approach to cancer is different than so many. I'm not sure mine is the right way though, but then again I was told in December of 2007 that I would not see Xmas of 2008 by 3 different doctors. Go figure, right?

I think it's Summer 2011 if the calendar isn't lying:)

Since you're doing the Oxy, the best thing that worked for me was the MAGNESIUM SULFATE, which is given through infusion. It really cut the cold sensations in the throat right out and I could do treatment on one day and drink cold beverages that very night. It helped with the peripheral neuropathy as well.

It does not always work for everyone, but if it were to work for you, it would really improve your outlook and make your treatments more humane. You know, I've always said that Cancer is a game of concession. From the moment we are diagnosed, we seem to give away this while cancer takes away that, you know what I mean?

So, "The Mags" can give you that feeling that you are taking something back and putting some sense of control that you can have. And empowerment is a great thing to have in our battles.

I'll be looking in on you and once again - Welcome!

-Craig