my Colon Cancer Story and That Nasty Neuropathy

 

On 2/6/2007 Joe70 wrote:

My name is Joe and im 36 years old.In April of 01 i was having issues getting sick and was diagnosed with a "reflux" disorder.  I lived with what all the doctors told was just that reflux. Well in May06 it got to the point i was bed ridden.  I went to see the doctors again and was told again it was exactly that. a reflux disorder. i went to a gastroentologist for a 2nd opinion.  After an endoscopy/colonoscopy i was told i had plum sized tumor in my colon just past my appendix. I was 80% blocked and everything going through my system was bottle-necked and being pushed back up. it was colon cancer. four days later i had a right hemi-coloctomy removing the tumor , my appendix and about4-6 inches of both my colon and small intestine. I went through a full 15 treatments of lukovorin, 5FU and Oxcilaplatin. My oncologist before treatment ever started informed me of the possible side effects of the drugs including the PN. After even the  first round of chemo i had the the PN effects. it lasted for around 4-6 days and then subsided leaving me with about 3-5 days of being PN symptom free before the next round of chemo. This cycle repeated itself through the next 6-7 treatments. Around the 8th treatment. the PN didnt go away. And gradually the effects got worse as chemo sessions progressed. It wasnt until i had 2 treaments to go before the dosage of the oxcilaplatin was reduced. and then only minimally. I finishd chemo the 2nd week of Dec 06. so it hasnt been that long. and the PN has only gotten worse.   The effects plateaued last week. But its agonizing. My feet are constantly numb and tingly. they feel like they are asleep all the time. If the sheets or blankets move over my feet at night i wake up and have a hard time going back to sleep. this happens 2-3 times a night. And my hands, well i have a hard time writing now, tying shoes for my sons, etc. I repair fine electronics. I work with my hands. and now i no longer have a good sense of touch. And im not real sure how this is going to work out. I got a referral to a neurologist and saw him actually just today. He told me that the fact the sensations have plateaued bodes well plus my age which is relatively young for all that has happened. anyways, he told me that at this point in time there is no real treatment for what is going on and only time will tell exactly how this is going to pan out. But he did prescribe me Symbalta. I believe its actually an antidepressant. He stated that the drug has had some good response to actually helping with the numbness and tingling sensations associated with PN. Anyways, I hope things improve for all you.

 

Hello Joe - I'm sorry to hear  all the bad things that have happened to you, but glad to hear it sounds as if the worst is past.  I have trouble with my hands too, and I'm a secretary by trade so typing is crucial for me; it must be very difficult for you as a fine technician.  Buttons are difficult, tying shoes hard, small earrings almost impossible, picking up a penny very difficult, etc.  I had kind of learned to live with the wooden feet/legs by wearing the most comfy shoes and giving myself massages.  But then the trouble with my hands got really bad in the middle of last year, which is when I really started trying to find a way to fix it myself as doctors have been no help.  The things I'm doing seem to be working, as it's not getting any worse and for awhile there I was very scared - I'm 57 years old, recently divorced, and no one is going to take care of me except myself. 

What I'm doing is this:  heavy doses of B vitamins, about 3,000 millegrams of Vit. C per day (1,000 ml. with each meal), 1 tbsp. of L-gluthamine in apple juice, regular multi-vitamins, and NO ALCOHOL, sob.  That's the tough one, but seems to be the most important.  Comfy shoes and a good brisk walk for about a half hour every day, yoga (esp. inverted exercises, seems to help circulation), and learning how to not get stressed out no matter what happens (which is probably why doctors prescribe antidepressants). 

Just yesterday I saw an ad in a magazine for a product called Lyrica Pregabalin, which purports to provide relief from "stabbing pain in your feet, tingling, numbness, burning or shooting sensations" .  I'm going to check it out online as soon as I finish this email.  The website is www.pfizerhelpfulanswers.com.  You might want to look at it too. 

Also, have you tried wearing thick sox to bed at night?  I would imagine they would protect your feet from the sensations of the sheets touching them and waking you up. 

Thanks for adding your input here, I check this site all the time hoping more people will add comments.  Hope Brian sees your response too.  Blessings to you -

Rosy

I just read this online and thought it was interesting.  You can see the whole story at yahoo mail science "HIV-related foot pain".  Won't do me any good as I certainly couldn't smoke joints all day, but maybe it will give someone some ideas re tetrohydro-whatsit.   Rosy

"The study, conducted at San Francisco General Hospital from 2003 to 2005 and published Monday in the journal Neurology, involved 50 patients suffering from HIV-related foot pain known as peripheral neuropathy. There are no drugs specifically approved to treat that kind of pain.

Three times daily for nearly a week, the patients smoked marijuana cigarettes machine-rolled at the National Institute of Drug Abuse, the only legal source for the drug recognized by the federal government.

Half the patients received marijuana, while the other 25 received placebo cigarettes that lacked the drug's active ingredient, tetrahydrocannabinol. Scientists said the study was the first one published that used a comparison group, which is generally considered the gold standard for scientific research.

Thirteen patients who received marijuana told doctors their pain eased by at least a third after smoking pot, while only six of those smoking placebos said likewise. The marijuana smokers reported an average pain reduction of 34 percent, double the drop reported by the placebo smokers as measured with a widely accepted pain scale.

"These results provide evidence that there is measurable medical benefit to smoking cannabis for these patients," said Dr. Donald Abrams, the University of California, San Francisco professor who led the study."

 

My error - the website for the drug lyrica is www.lyrica.com.  The other website address is how to get free or reduced rate prescriptions from Pfizer. 

Rosy

Hello everyone. I am 57 and I was diagnosed with colorectal cancer approximately a year ago. I had about 16" of my colon removed. I've had the full 6 mos of Folfox treatment which ended on March 29. I was lucky that I only postponed 1 treatment by a week due to low platlet counts and another treatment by a week due to a low white cell count. My neuropothy symtoms seem to be very similiar as everyone else. The first 6-8 tratments I was okay. The neuropothy would go away prior to the next treatment. As time went on though, I noticed that it was getting worse and not going away. At one point I actually found myself chocking from breathing in the cold. During the whole treatment cycle, I was able to work on/off but most of the time, not the full day. I was told at the time that neuropothy symtoms can take 1-2mos, 6mos, 1-2 yrs, or never, to subside. I feel right now that my symtoms are not any better or worse than how they were  after my last treatment. I've had 2 CT scans and recently a colonoscopy and everything looks clean. I'm very concerned though, with the neuropothy. I've only tried a B vitamin AlphaBetic, and I haven't seen any changes. I'd appreciate any suggestions. Also, on a good note, if the cancer will be gone forever, I can put up with the neuropothy.

My husband is 37 with stage 3 colon cancer.  He has had 6 rounds of Folfox, which has cause severe neuropothy!  Thank you for your story; it helps. 

Hi ron my name is brenda. I am currently in remission from colon cancer i had surgery in december 06, and after surgery i started chemo. I am still having problems with oxalipatin neuropathy and is currently unable to work. My neuropathy is so bad in my hands and feet. The doctor has tried several medication to help with the pain, tightness, num finger, feet and toes. I am currently taking 2000mg of neurontin ( gabapentin) 2 caps 4 x a day so i sleep alot. I have tried several other medication such as lyrica. The gabapentin helps some.Ron,Do you have trouble with cold temp weather because i do? How can you work with the pain and numness?