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-   -   Crazy Year (https://www.neurotalk.org/peripheral-neuropathy/218729-crazy.html)

Geneo76 04-12-2015 10:34 PM

Crazy Year
 
It has been a crazy year for me. Last October I found out that I had Stage 3 colon cancer. So, I went through 5 1/2 weeks of radiation and chemo which finished on December 31. I had surgery February 11th to remove the cancerous part and am now taking chemo pills until July. They had to reroute my plumbing, so I have to wear a temporary bag for my waste on my stomach. That will come off in June.
But I have been very lucky as far as the treatment has gone. I have not been sick or fatigued one day from the radiation/chemo or lost any hair. God has been on my side through this adventure.
My biggest problem I have these days is the PN in my feet. I cannot bend my toes. This has been getting worse over the past 4 years. I have been to Washington University in St. Louis and they have run all the tests. They say they cannot find what the problem is. I am not overweight, 145lbs now, ( down 10lbs since cancer deal), and my feet tingle and do not burn or hurt like some folks. I can walk fine but if I have to walk real slow or stand in one spot for any amount of time, that's when I have to look for something to on to for balance. It seemed like it has gotten worse over the past 6 months.
Up until the cancer scare, I was active and worked out 2x a week for an hour at the local gym. I am 56 years old.
Oh, I have been getting a B12 shot monthly to see if that helps with the PN, but I don't see any improvements.

Neuroproblem 04-13-2015 03:48 AM

Quote:

Originally Posted by Geneo76 (Post 1135311)
It has been a crazy year for me. Last October I found out that I had Stage 3 colon cancer. So, I went through 5 1/2 weeks of radiation and chemo which finished on December 31. I had surgery February 11th to remove the cancerous part and am now taking chemo pills until July. They had to reroute my plumbing, so I have to wear a temporary bag for my waste on my stomach. That will come off in June.
But I have been very lucky as far as the treatment has gone. I have not been sick or fatigued one day from the radiation/chemo or lost any hair. God has been on my side through this adventure.
My biggest problem I have these days is the PN in my feet. I cannot bend my toes. This has been getting worse over the past 4 years. I have been to Washington University in St. Louis and they have run all the tests. They say they cannot find what the problem is. I am not overweight, 145lbs now, ( down 10lbs since cancer deal), and my feet tingle and do not burn or hurt like some folks. I can walk fine but if I have to walk real slow or stand in one spot for any amount of time, that's when I have to look for something to on to for balance. It seemed like it has gotten worse over the past 6 months.
Up until the cancer scare, I was active and worked out 2x a week for an hour at the local gym. I am 56 years old.
Oh, I have been getting a B12 shot monthly to see if that helps with the PN, but I don't see any improvements.

sorry about the diagnosis, and the recovery sounds wonderful, you will need regular colonscopies right? or biopsies?

Chemotheraphy is a known cause of PN, if not the most common cause in the treatment of cancer, what chemo drug are you taking?
how much is in the b12 shots?

EnglishDave 04-13-2015 07:24 PM

Hi Geneo76,
Others here can address your PN issues, I just want to say I know what it's like dealing with colorectal cancer and neurological problems. I opted against replumbing in '13 as it would have been a 5 hour op under spinal block (no anaesthetic - heart probs), but my Dad had a temporary bag. Hopefully, this time will fly by and your treatment and reversal will conclude with haste.
I am now 20 months clear - checked every 4, and if I can do it anyone can. Keep positive.

Dave.

ger715 04-14-2015 12:47 AM

Adding one more to plumbing; i had rectal cancer surgery in 2012. Rectum completely removed along with 2 ft of colon. I had enough muscle left so I do not have a bag. Colon is directly attached to, for a better choice of words, elimination area. I declined post surgery chemo/radiation.
I Had a colonoscopy about 5 months ago. Just had one non cancerous growth. Unfortunately because of spinal(fusion surgery) pain and PN, i take narcotic meds which cause constipation so it makes things a bit more difficult because of daily Miralax. I'm wondering if marijuana would avoid constipation and the need for Miralax.


Gerry

zkrp01 04-14-2015 12:39 PM

Still have the jug
 
Quote:

Originally Posted by ger715 (Post 1135514)
Adding one more to plumbing; i had rectal cancer surgery in 2012. Rectum completely removed along with 2 ft of colon. I had enough muscle left so I do not have a bag. Colon is directly attached to, for a better choice of words, elimination area. I declined chemo/radiation.
I Had a colonoscopy about 5 months ago. Just had one non cancerous growth. Unfortunately because of spinal(fusion surgery) pain and PN, i take narcotic meds which cause constipation so it makes things a bit more difficult because of daily Miralax. I'm wondering if marijuana would avoid constipation and the need for Miralax.


Gerry

I got tired of the ritual also. I am currently drinking water like it's my job and leaning heavily on the veggies. I take Magnesium supplement along w/ two capsules a day of Psylium (incorrect spelling) fiber. All has been going well(pun intended) for several months. I still have that jug of Miralax in the corner of the vanity. Hopefully your pain will ease to the point of getting off the opiates. You have been through a lot and thanks for sharing. "River Gravel" constipation was one of the reasons I had to get off Hydrocodone. As far as the weed, it might work if if you make your own brand of guacamole dip. Two highest fiber foods are Avacado and Artichoke. Good Luck, Ken in Texas.

ellsac 04-14-2015 12:43 PM

I agree-I eat avocados almost everyday, and tons of veggies-keeps things moving along no matter what else is going on in my body.

ger715 04-14-2015 04:12 PM

Quote:

Originally Posted by zkrp01 (Post 1135597)
I got tired of the ritual also. I am currently drinking water like it's my job and leaning heavily on the veggies. I take Magnesium supplement along w/ two capsules a day of Psylium (incorrect spelling) fiber. All has been going well(pun intended) for several months. I still have that jug of Miralax in the corner of the vanity. Hopefully your pain will ease to the point of getting off the opiates. You have been through a lot and thanks for sharing. "River Gravel" constipation was one of the reasons I had to get off Hydrocodone. As far as the weed, it might work if if you make your own brand of guacamole dip. Two highest fiber foods are Avacado and Artichoke. Good Luck, Ken in Texas.


Ken,
If I understand correctly using marijuana itself will not avoid the constipation of using narcotic meds. Unfortunately, I have been on them since my spinal fusion/laminectomy over 8 years ago; eventually going from spine pain, along with PN, edema and Stasis Dermatitis . Unfortunately, I do not see myself being able to withdraw from the narcotic meds. (60mg's Oxycontin every 6 hrs., 7.5/312 Percocet for break thru with a max of 4 a day.) That's why my ears perked up about marijuana.

It was because of becoming impacted from the meds that led me to go to the ER one Saturday in 2012. The ER was unable to get me cleaned out enough so I was admitted to the hospital. After finally getting cleaned out, a GI doctor encouraged me to have a colonoscopy (I never had one before). Next day had colonoscopy where a 3" tumor was found at top of rectum. Following day had surgery. The rest is history.


Gerry

Geneo76 04-14-2015 10:06 PM

Quote:

Originally Posted by Neuroproblem (Post 11353454)
sorry about the diagnosis, and the recovery sounds wonderful, you will need regular colonscopies right? or biopsies?

Chemotheraphy is a known cause of PN, if not the most common cause in the treatment of cancer, what chemo drug are you taking?
how much is in the b12 shots?

After I finish with the Chemo, I am sure that I will be on a regular schedule for the colonoscopies.
As far as chemo pills I am taking. I take Capecitabine, 3-500mg tabs 2x a day and 1-150mg tab 2x a day. I take the meds for 14 days and then take 7 days off. Then start the cycle over. I also take a 2500 mcg methyl B-12 for extra measure about an hour after I eat in the morning. I believe after I had the tests at Washington University my level was about 460 if I remember right. The shot I get from the doctor is just a standard, nothing special.
Thanks for all the help. I got some very good info off of the Braintalk forum years ago that helped me greatly. It is always good to hear from folks in the same boat as you are.:winky:
Gene

mrsD 04-15-2015 05:46 AM

I strongly suggest you do NOT take B12 with food or after eating.

It must be taken on an empty stomach so the micrograms are not lost in the food. It depends on passive absorption in the intestine when used this way...and food blocks that.

A level of 460 is barely normal. The new low now is 400pg/ml. The old scale is no longer being used by many in the US... and in Japan has not been used for decades (theirs is 500-550).

Many of us here keep our levels at 1000 (and some test out even higher).

zkrp01 04-15-2015 12:30 PM

It's hard to imagine
 
Quote:

Originally Posted by ger715 (Post 1135638)
Ken,
If I understand correctly using marijuana itself will not avoid the constipation of using narcotic meds. Unfortunately, I have been on them since my spinal fusion/laminectomy over 8 years ago; eventually going from spine pain, along with PN, edema and Stasis Dermatitis . Unfortunately, I do not see myself being able to withdraw from the narcotic meds. (60mg's Oxycontin every 6 hrs., 7.5/312 Percocet for break thru with a max of 4 a day.) That's why my ears perked up about marijuana.

It was because of becoming impacted from the meds that led me to go to the ER one Saturday in 2012. The ER was unable to get me cleaned out enough so I was admitted to the hospital. After finally getting cleaned out, a GI doctor encouraged me to have a colonoscopy (I never had one before). Next day had colonoscopy where a 3" tumor was found at top of rectum. Following day had surgery. The rest is history.


Gerry

having to stay on those meds.I felt the same w/ hydro and I am still in a relationship w/ sleeping pills. Time may enable you to reconsider. I was a daily smoker of weed for my college years and ended up getting a degree in *&^%$#^* up. IMHO Miralax should be kept close as you try other systems. Realizing that relief will be tomorrow. You didn't explain your delivery system and I never chewed and swallowed weed to explore the fiber rich goodness it MAY contain. In closing I will say hydrate, hydrate, hydrate. Good Luck, Ken in Texas.


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