New to colon cancer and these boards - anyone else here have RSD and is getting treatment for cancer

2bhealed said:

Minnesota too
Hi Kathryn,

What's RSD?

Is this colon cancer a secondary cancer from your cervical cancer treatments?

Mayo Clinic is where my oncologist is and where I had my surgeries and follow up. Love the place. Works like a Swiss Watch.

Sorry that they misdiagnosed you. My sister died of adenocarcinoma of the small intestine in 1992 at 33 yrs old and none of my sisters (or parents) were advised to get colonoscopies. For years I was going to doctors and always told them her medical history and NOT ONE doctor ever mentioned that I needed to get scoped. They all would say how rare her cancer was......until I was doubled over in pain with bloody diarrhea. Finally a new GP suggested it.....by then I had Stage III sigmoid colon cancer lymph positive zero mets. Thank god it wasn't worse! Our lawyer friend wanted us to pursue a malpractice but even the thought gave me a gut ache. WE need to be our own advocates and EDUCATE ourselves on our bodies and DEMAND some answers.

The adjuvant chemo at Mayo eight years ago was only 5-FU and leucovorin since they saved the big guns for later. Now it seems they bring out the big guns right away. I opted to NOT do any chemo since I saw what it did to my sister. No thanks.

I saw a TCM in Bloomington and my treatments were like going to a spa every week. I highly recommend her if you're interested in pursuing any alternatives. She has a nursing background but just kept getting deeper involved in alternative healing ie. acupuncture, massage, Traditional Chinese Medicine etc. She was wonderful and pretty knowledgeable about cancer nutrition. My Naturopathic doctor was in St. Paul. She was great too.

peace, emily

hi Emily
The colon cancer is a totally new cancer. NED for cervical cancer since fall 2003. Lots of surgical procedures, but never needed radiation or chemo.

RSD = Reflex Sympathetic Dystrophy, also known as CRPS - Chronic Regional Pain Syndrome. It is a miserable syndrome that I'd never heard of till I got it. I was very lucky to be diagnosed early I was going to the Mayo Clinic - they were treating me for the infection from the injury because it was "foreign." I stepped on a sea urchine and got a spine stuck in my foot which tore up the tendon and joint at the big toe, and caused a sea-born infection. Instead of getting better as the infection cleared and the injury healed, the pain got worse, and my foot swelled huge, turned purple, and got very cold. The pain was awful - burning pain like I had put my foot in a bucket of acid, and spikes of pain like sharp knives sticking into my foot. Even though it was freezing to the touch, it dripped sweat. A very odd thing. The pain is beyond pretty much any other pain. The two biggest triggers for me to overcome were cold and vibration. I spent a lot of time at my house in Mexico that winter - I'd get a nerve block, and then head south to warmth and lots of walking. I slowly got better, and one day a friend commented that I didn't limp anymore! The pain was finally so low I didn't limp anymore.

While they run like a well-oiled machine and dx'd quickly, Mayo dropped the ball, leaving me sit on the list for the pain clinic once they diagnosed me (I got my appt letter in Feb, after dx in Oct). I started researching and realized I could NOT sit around waiting for them to call - I needed to be proactive and get treatment right away. The best shot at remission is within the first 6 months - if I'd waited for Mayo, I probably wouldn't be in remission today. I battled back with heavy PT, spinal nerve blocks, and "tricking" my brain with things like mirror box therapy. I've been pretty much in remission since fall 2008 (it started summer 2007 with an injury to my foot). Check out RSDSA.org for more information.

I don't want to go through what I did ever again. I know several people that live with RSD pain at high levels every day. It wears you out so badly, I can't imagine having the strength to go through chemo while enduring that kind of pain. I do have a very high pain tolerance - always have. But RSD is nasty. (I had surgery just 11 days ago, and today I walked a mile and did some gardening, and made dinner. Not much slows me down, but RSD did.) Even though I don't have my first official appt with the onc till tomorrow, I saw him briefly in the hospital and have talked with his staff. He wants me on 5FU, Leucovorin and Oxaliplatin. The OX has very high incidence of neuropathy - sometimes permananet. I'm thinking of pushing for Xeloda instead and no Ox. I have a friend with pancreatic cancer and liver mets that is currently taking Xeloda. He says it is much better than the different IV chemos he has taken on and off over the last 5 years. It seems a lot more convenient than dealing with all the trips in for hook-up and un-hook for IV chemo.

I've entertained the idea of no chemo, but with the node involvement, I'm worried there could be a few cells hanging around that could cause trouble later. I've already gone back to a diet of mostly raw fruits and veggies (easy this time of year when our fruit trees and garden are peaking). I eat no red meat. I've really cut out the processed food again (I got lax the last several years compared to the way I used to eat). But I just don't feel confident after knowing the battle I had with those persistent cervical cancer cells that I can fight this with diet and exercise only. I will probably agree to the trial if I have Wild Kras. The research I've done shows Cetuximab giving a pretty big boost in survival and/or length in between recurrance compared to not using it.

I was considering Isagenix products before and went ahead and ordered now. I'm going to do the shakes and Ionix supreme (liquid vitamins basically), and stick to a cleaner diet. I'm also looking for a chiropractor with a whole-health focus. I'm also looking for someone for massage, and am considering acupuncture. I would be very interested in information for your contact in Bloomington. I'm south of the river, but that isn't too far to go.

My sister's friend sent me her book when she heard my dx. She is a cancer survivor - stage IV breast cancer, and they gave her no chance of survival. Lori Lober - she wrote Bigger than Pink, and recently Still Bigger than Pink, after a few more years NED. She still lives each day as healthy as she can to stay cancer free. She's been NED for many years now. She fought back with nontraditional medicine and chemo - attack from all sides. She's also a big fan of Isagenix. My sister and her husband are too, and he is very hard to impress with anything. He is a chiropractor who runs a Wellness Center. I asked for suggestions on what I can do during this month to get stronger and healthier before starting chemo. Isagenix was top of his list, along with fresh fruits and veggies, and exercise.

It is so hard to believe none of your family was sent for colonoscopies after your sister's dx. I'm glad you found Mayo for your surgery - they are first-rate in most cases. Your story is so encouraging. I agree with many of your posts I have read. We do need to attack the underlying problem - not just treat the symptoms. But due to my past history, I think I have to do both to start.