Neuropathy? Radiation Side Effects? Nutrition/Exercise/Stress?

[lakeswim]

Hi again. (I just posted "FINALLY staged.." with some time-sensitive questions ... so I hope it's okay to post again about different topic...

I am staged and ready to start treatment (debated in above mentioned post). I am so nervous and feel so naive about what I'm about to endure....my questions (for today).....

Neuropathy from Chemo> I am very nervous about the neuropathy from the chemo (FOLFOX) and whether this will stay around long term. What is it like short term and do we know how often people have it long term/permanently? What do people do to counter the neuropathy? Do people wear gloves? Does it really make you feel like you are choking/can't breathe?

Radiation Side Effects > I have read about how radiation can affect your bowel function. Seems brutal (and ironic, given it's intended to shrink a tumor so surgery has less consequences). What are your experiences with radiation side effects?

Nutrition/Exercise/Stress> I just read where MikeNH (I think) mentions nutrition, exercise, and stress management as critical in recovery (and in general). Is this based on a study? (Not questioning - just curious.)
- Nutrition - I have received no nutritional advice from my doctors. Any book suggestions on this or other resources? (I live with a vegetarian so rarely eat meat and haven't eaten red meat in 30 years so I'm not sure how I can improve my diet but will try anything that may help get me through this and stay healthy - if I make it.)
- Exercise - I have run marathons and triathlons and swam 3 mile open water swims so exercise did not prove to prevent this cancer. I have been quite tired in the last year or two (maybe the cancer growing, maybe perimenopause, maybe my daughter's health issues) and only walk for an hour each day. I honestly hope I can keep this up, given what I have read about chemo. How do people find the energy/will to keep moving and if you do, what are reasonable expectations for exercise while doing chemo and/or radiation?
- Stress - I arrive at this diagnosis after a brutal 1.5 years of managing my daughter's eating disorder (which is ongoing and can kill her as much as cancer can kill) and I firmly believe that the incredible stress of her illness is part of the reason I am here. Yet, she/we have fought hard (it's an unrelenting disease and she's very vulnerable, ironically, with the added stress of my diagnosis) and I'm not about to abandon her. But that's a lot to shoulder. How do you manage your cancer-related stress? (Meditation? Reiki? Therapy? TaiChi? )

Thank you for any and all advice!!

Susan

[NHMike]

The neuropathy for me is tingling in the fingers at the top knuckles. It can spread down knuckles as well and I had it in my feet though it didn't affect me as much. The tingling can be a major nuisance. I was at 100%, 100%, 70%, 65%, 0%, 55% on Oxaliplatin. The 0% is where we skipped it for a cycle because I had neuropathy into the end of the fifth cycle and I was worried that it wouldn't go away. It had gone away in previous cycles sometime in the third week.

The other major issue with hands and feet is "Hands and Feet" syndrome which comes from the 5FU. This has been with my since the fourth cycle. It went away in previous cycles in the third week. RIght now the effects fade around 2.5 weeks in the cycle but they don't go away completely. Hands and Feet feels like arthritis. I've had osteoarthritis from running and tennis in the past. It's worst when I wake up and it's generally not as bad if I'm working out regularly.

I also have worries about these things becoming permanent. Many have reported getting hit with the neuropathy a month or two after their chemo finishes. I've read of some that had it for six, twelve and eighteen months and some that have had it for a very long time.

I read a research paper that the mechanism for neuropathy has been discovered. So there may be a cure for it down the road.

The feeling of choking is cold sensitivity from the Oxaliplatin. Basically do NOT drink anything cold after your infusion until the cold sensitivity goes away overall. You will feel this in your face, fingers, toes and maybe some other areas.

[heiders33]

My radiation side effects involved frequent and sometimes uncontrollable bowel movements. Now I am post-reversal, and frequency is still an issue but not control.

I am a couple months out from Xelox and I sometimes get tingling sensations in my feet, but otherwise I don’t really have lingering neuropathy. I sometimes drop lids when I am screwing them on or off. I did six rounds of Xelox, the last one at 50% Oxi. I mostly feel normal with no ongoing problems.

Everyone is different, but I hope my story helps. I am relatively young and otherwise no health problems so I’m sure that has helped.

[O Stoma Mia]

Here is the book that I used when planning my recovery:

Anticancer - A new way of life

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46677&p=342599#p342599

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44129&p=316997#p316997

[lakeswim]

Thank you so much for these responses. I wonder why I no longer get emails/ notifications when people respond? (I did last month...and have changed nothing.)

Everyone here seems to know so much. I don't know what some of these means.

What is Xelox?

And what do the percentages mean?

Thank you for the book recommendations. I will click on links and check them out.

[lakeswim]

Also, if I am understanding you right, NHMike, you seemed to have long chemo cycles. I will get chemo every other Monday for 4 months. So, that's a 2 week cycle, right? If you got symptoms 2.5 weeks into your cycle - then it must have been longer.

I am STILL LEARNING SO MUCH. You are all so informed. I am a smart woman and my parents were both PhD research scientists but I can only read so much and then I get overwhelmed and emotional and have to stop.

Thanks for all your help.

[NHMike]

Thank you so much for these responses. I wonder why I no longer get emails/ notifications when people respond? (I did last month...and have changed nothing.)

Everyone here seems to know so much. I don't know what some of these means.

What is Xelox?

And what do the percentages mean?

Thank you for the book recommendations. I will click on links and check them out.

The board software has had issues with notifications at least since last summer. They seem to come and go from time to time. So I just visit the board if I haven't received any email notifications in a while.

We mostly knew zilch when we started. We have had a steep learning curve.

XELOX is Xeloda + Oxaliplatin. Xeloda is a brand name of the pill form of 5FU.

[NHMike]

Also, if I am understanding you right, NHMike, you seemed to have long chemo cycles. I will get chemo every other Monday for 4 months. So, that's a 2 week cycle, right? If you got symptoms 2.5 weeks into your cycle - then it must have been longer.

I am STILL LEARNING SO MUCH. You are all so informed. I am a smart woman and my parents were both PhD research scientists but I can only read so much and then I get overwhelmed and emotional and have to stop.

Thanks for all your help.

5FU (part of your FOLFOX) cycles are 2 weeks. XELOX (pills) have 3 week cycles. The standard of care for Adjuvant Chemo is 6 months which is 12 cycles of FOLFOX or 8 cycles of XELOX.

[O Stoma Mia]

In Folfox (the regimen you will be on) each of the 12 cycles is 2 weeks long. In each cycle, all of the chemo is delivered in the first 2 days (48 hours) and then there are 12 days rest before the next cycle begins.

In Xelox things are different. Each of the 8 cycles is 3 weeks long. The chemo is delivered over the first 14 days and then there are 7 days rest before the next cycle begins.

[NHMike]

In Folfox (the regimen you will be on) each of the 12 cycles is 2 weeks long. In each cycle, all of the chemo is delivered in the first 2 days (48 hours) and then there are 12 days rest before the next cycle begins.

In Xelox things are different. Each of the 8 cycles is 3 weeks long. The chemo is delivered over the first 14 days and then there are 7 days rest before the next cycle begins.

Minor clarification: with XELOX, you get the Oxaliplatin the first day of the cycle and take Xeloda pills for the first 14 days.

[rp1954]

I have no personal insight on radiation. However, I do have experience with a particular knowledge base that attempts to reconcile conventional US medicine with global medical sources and natural medicine.

Global medical sources? The rest of the world has products and techniques, many generic, that have not been used or admitted into the US or commonly utilized. LEF attempts to fill part of that gap eclecticly.

When my wife first was diagnosed with colon cancer, the first source I turned to was the main Life Extension articles on cancer and colon cancer. They had information that was moderate, helpful and life saving. This Life Extension article, a substantial introduction on radiation treatment, probably can be very useful, used diligently.

Lest this sound too much like a commercial, we usually buy cheaper stuff elsewhere, but there are times when LEF is priced competively (particular items, or annual bloodwork sales and vitamin sales) and/or best for the price or we're really in a jam. Sometimes I consult their best nutritional specialists directly, for free.