I'm a new comer.

wanxia58 · May 2009

Hi, everybody. It's nice to be a member of the group. I read some of the posting, and I found them very informational and helpful. I also have Stage IV colon cancer, and I finished my chemo treatment about two month ago. I'm now dealing with the very severe side effect of numb hands and feet, even legs. I took Nuerontin, and it didn't work. I'm now taking lyrica. The effect isn't obvious, but I'm going to give it a little more time. Anybody here took lyrica before?

pamness · May 2009

Welcome (a very sad welcome) to this board -
I don't have experience with what you are asking but I know a number of people on this board will respond.

Pam

tootsie1 · May 2009

Welcome
I can't answer your question, but I just wanted to welcome you to our board. I'm sorry you have to be here, but I hope you will find it comforting and helpful.

*hugs*
Gail

kimby · May 2009

Lyrica
Welcome to the group. So glad you found us. I have an unusual situation but I'll give you the details.

I take 200 mg of vitamin B6 for neuropathy (hand/foot syndrome really) and started it the same month my meds were changed to Lyrica for my fibromyalgia. Because of that I can't really say with any degree of certainty which (or both?) has made the difference. My hand/foot syndrome has improved markedly and my fibro pain has lessened incredibly. I'm happy with the results but won't be stopping either any time soon!

HTH,

Kimby

CherylHutch · May 2009

Welcome!
Welcome to the board, Wanxia! I'm sorry you've had any need to even search for a support board but now that you've found us, come on in!! There is a wealth of information in this board and no question is a dumb question. You'll be surprised at just how often people do experience the same things... before, during and after chemo!

Congratulations on finishing your chemo treatments! Since they ended about two months ago, I suppose you are coming up for getting your blood work done and a possible scan?

Do stick around and let us know how you are doing! That's a real bummer about the hands, feet and legs. I'm thinking that that was probably caused by the oxiliplatin? I have the neuropathy in my feet and shins... the rest of me has weird muscle/bone pains and pains that seem to just circulate around... one day the feet will be bad, next day they are fine but the shoulders are bad. And so goes life while on this journey but hey... I can handle the pain if it means we've got the monster under control

I, too, am Stage IV and finished my chemo at the end of Oct, 2007. So far, I've not had to go back to the chemo for 18 months! But, alas, the neuropathy is still with me. Oh well... you win some, you lose some

Huggggs,

Cheryl

chicoturner · May 2009

hi, I'm Jean and new here
hi, I'm Jean and new here too. I've been reading a lot of the posts and am encouraged. I was diognoised a year ago this past march with stage 4 colon cancer. I completed 6 months of chemo (5FU) and thought we had good results, but a 3 month break gave it time to grow back! I have tumors on my lungs only. I am now on avastin and irinotecan (sorry about spelling) and my scans in Mar were very good. My doctor said I will no doubt stay on these as long as they work and I can tolerate it. I really have few side affects from this med, but do still have nueropathy in hands, feet and legs from prev. meds. I have tried a few things, but really no change. I'd love to hear what others are trying. I work and would love my feet to feel better! Help.

shoppergal · May 2009

chicoturner said:
hi, I'm Jean and new here
hi, I'm Jean and new here too. I've been reading a lot of the posts and am encouraged. I was diognoised a year ago this past march with stage 4 colon cancer. I completed 6 months of chemo (5FU) and thought we had good results, but a 3 month break gave it time to grow back! I have tumors on my lungs only. I am now on avastin and irinotecan (sorry about spelling) and my scans in Mar were very good. My doctor said I will no doubt stay on these as long as they work and I can tolerate it. I really have few side affects from this med, but do still have nueropathy in hands, feet and legs from prev. meds. I have tried a few things, but really no change. I'd love to hear what others are trying. I work and would love my feet to feel better! Help.

Nueropathy
My dr gave me a prescription for Lyrica to help with my nueropathy which was extremely bad in both my hands and feet. For some reason my insurance company at the time wouldn't cover it, so I got Gabapentin instead which is generic for Nuerontin. I was on it for maybe a month and I didn't feel like it was working for me so I weaned myself off.After I was off for a while I noticed that the nueropathy started to get worse, so of course I went back on them. It took quite awhile before I noticed them working and now I only have it slightly in my hands. My feet are a different matter. I still have it in my toes and halfway into my foot but its tolerable. Sometimes its more uncomfortable than others but I would say it's alot better than it was.

PhillieG · May 2009

chicoturner said:
hi, I'm Jean and new here
hi, I'm Jean and new here too. I've been reading a lot of the posts and am encouraged. I was diognoised a year ago this past march with stage 4 colon cancer. I completed 6 months of chemo (5FU) and thought we had good results, but a 3 month break gave it time to grow back! I have tumors on my lungs only. I am now on avastin and irinotecan (sorry about spelling) and my scans in Mar were very good. My doctor said I will no doubt stay on these as long as they work and I can tolerate it. I really have few side affects from this med, but do still have nueropathy in hands, feet and legs from prev. meds. I have tried a few things, but really no change. I'd love to hear what others are trying. I work and would love my feet to feel better! Help.

Lyrica and other meds
Welcome aboard, this place is generally good because you get many different experiences from people. 5 yrs ago I had a similar experience with the numbness in hands and feet, I still have it but it's much milder and it never kept me from playing the guitar. I did have experience with Lyrica for pain issues after my last operation in July of 08 but I took myself off of it due to some things I had heard about it that I didn't care for so I use a fentenol pain patch now and am happy with it. I did hear about one of the B vitamins being good for the numbness. I have gotten most of my feeling back afer 5 years but not all of it.
Good luck
-p

CherylHutch · May 2009

PhillieG said:
Lyrica and other meds
Welcome aboard, this place is generally good because you get many different experiences from people. 5 yrs ago I had a similar experience with the numbness in hands and feet, I still have it but it's much milder and it never kept me from playing the guitar. I did have experience with Lyrica for pain issues after my last operation in July of 08 but I took myself off of it due to some things I had heard about it that I didn't care for so I use a fentenol pain patch now and am happy with it. I did hear about one of the B vitamins being good for the numbness. I have gotten most of my feeling back afer 5 years but not all of it.
Good luck
-p

Lyrica
Hey Phil... what things did you hear about Lyrica that you didn't care for? Next time I go to my GP I was going to ask about trying Lyrica but if you know of some things that aren't good about it, I'd like to know.

Me, I'm on Gabapentin, Tramadol and Tylenol #3 with codiene for pain and neuropathy. I'm thinking that they are helping for the most part... but my feet are still bad, as are both my shins. It's because of the neuropathy and arthritis (which is now also in my lower back) that walking any distance is a problem. I am TRYING to make myself walk... starting out short distances, but some days I can't even walk completely around the block. So anything that might help with this, I'm willing to give it a try... unless it is known to do other damage.

Thanks!

C.

kaitchin · May 2009

I'm a newby too!
I started having the numbness and tingling in my hands & feet on 5/01. I was diagnosed with small bowel cancer last September after having surgery for a blockage which we thought was caused by crohn's disease. The surgery gave me an iliostomy and 5 days later I was told I had cancer. :-(
Anyway, I did 6 months of Oxaliplatin, Leucovorin & 5FU - finished on 4/01. Now 30 days later I have this numbness!!!
I guess it could be worse.
Dr is putting me on celebrex for the leg cramping that wakes me up each morning @ 4 AM. I just spoke to her and mentioned the web sites and that many people suggest vitamin B6. I had B12 injections during therapy.
We'll try that.
I have to wait till 1 year after surgery for my scan. So keep your fingers crossed and keep me in your prayers!

wanxia58 · May 2009

kaitchin said:
I'm a newby too!
I started having the numbness and tingling in my hands & feet on 5/01. I was diagnosed with small bowel cancer last September after having surgery for a blockage which we thought was caused by crohn's disease. The surgery gave me an iliostomy and 5 days later I was told I had cancer. :-(
Anyway, I did 6 months of Oxaliplatin, Leucovorin & 5FU - finished on 4/01. Now 30 days later I have this numbness!!!
I guess it could be worse.
Dr is putting me on celebrex for the leg cramping that wakes me up each morning @ 4 AM. I just spoke to her and mentioned the web sites and that many people suggest vitamin B6. I had B12 injections during therapy.
We'll try that.
I have to wait till 1 year after surgery for my scan. So keep your fingers crossed and keep me in your prayers!

Thank you all so much for responding to my message.
First of all, to kaitchin: Neuropathy does start after the chemo is over. I thought the worst was over when I finished chemo, but neuropathy came and got worse every day. I was stubbornly waiting for it to get better, thinking the meds wasn't coming in any more. Yet it just kept on becoming worse. Get ready for that. Sorry for the bad news.

Secondly, before I can digest all the nice responses I've gotten from you guys, I have bad news to report: My new CEA number is up from 23 to 40. It's probably due to a 2 month absence of the chemo medicines. My next cat scan was scheduled for early June, but my doctor said that she would do an earlier scan if the CEA is high. I remember there is certain length of period between cat scans, but I forgot what it is. Does anyone remember it?

Thanks again for your warm welcome and informative discussions.

Wenchie · May 2009

Lyrica
Hi Wanxia:
I had the neuropathy in both my hands and my feet. My feet were much more numb than the hands. Somewhere, there is apparently a study showing that an infusion of calcium coats and protects the nerve endings from the Oxaliplatin and my neuropathy didn't show up until after they stopped the calcium. Regardless, I don't feel the Lyrica helped as much as time. My hands are completely back to normal and I only have slight numbness in my feet (more so when they're cold or I'm sitting funky on my legs). Where did your colon cancer spread to? Did you take Folfox as your first chemo regimine? What was your second chemo cocktail? Take care! Wenchie

kaitchin · May 2009

wanxia58 said:
Thank you all so much for responding to my message.
First of all, to kaitchin: Neuropathy does start after the chemo is over. I thought the worst was over when I finished chemo, but neuropathy came and got worse every day. I was stubbornly waiting for it to get better, thinking the meds wasn't coming in any more. Yet it just kept on becoming worse. Get ready for that. Sorry for the bad news.

Secondly, before I can digest all the nice responses I've gotten from you guys, I have bad news to report: My new CEA number is up from 23 to 40. It's probably due to a 2 month absence of the chemo medicines. My next cat scan was scheduled for early June, but my doctor said that she would do an earlier scan if the CEA is high. I remember there is certain length of period between cat scans, but I forgot what it is. Does anyone remember it?

Thanks again for your warm welcome and informative discussions.

Neuropathy
Thanks for the response Wanxia58.
I had neuropathy throughout my treatments but it would subside about 7 days later. Seems like just as all the reactions to the chemo were going away it was time for the next chemo session.
The Dr is putting me on Celebrex for the joint cramps and I will start taking extra B6 daily for the numbness & tingling and see if that helps.
I finished my 6 month chemo treatments on April 1rst and now have to wait till mid-September to see if everything is okay. I'm undecided on getting the iliostomy reversed because the Dr.'s don't know if I will suffer with the same pain from the Crohn's disease as before the surgery. The cancer is stage 3 and was in 15 of 19 lymph nodes. My Dr is very optomistic because all the tests prior to chemo were good.
I try to stay positive and go about my life as normal as possible. Like I tell anyone who asks "I don't have time to be sick"!!
Hang in there and stay strong!

wanxia58 · May 2009

Wenchie said:
Lyrica
Hi Wanxia:
I had the neuropathy in both my hands and my feet. My feet were much more numb than the hands. Somewhere, there is apparently a study showing that an infusion of calcium coats and protects the nerve endings from the Oxaliplatin and my neuropathy didn't show up until after they stopped the calcium. Regardless, I don't feel the Lyrica helped as much as time. My hands are completely back to normal and I only have slight numbness in my feet (more so when they're cold or I'm sitting funky on my legs). Where did your colon cancer spread to? Did you take Folfox as your first chemo regimine? What was your second chemo cocktail? Take care! Wenchie

spreading
My cancer has affected a lot of the lymph nodes, about the same number as yours, Wenchie. It has also spread to the small intestines, but not to liver or lungs. The main tumor in the colon and the side tumor in the small intestines were both taken out by surgery. Now my onc. has given me an earlier date for the next scan. I'm having it next Monday.

Guess what? I was just told by my doc to stop lyrica because it gives me itches. Once I stopped it, I found out that I was feeling much worse than with it. Now I'm suffering severe numbness and stiffness in my feet and legs and burning and swelling sensation inn my hands. Don't know what to do.

By the way, how do you post without replying only to one posting? In other words, how do you guys line up your replying message with the previous one?

CherylHutch · May 2009

wanxia58 said:
spreading
My cancer has affected a lot of the lymph nodes, about the same number as yours, Wenchie. It has also spread to the small intestines, but not to liver or lungs. The main tumor in the colon and the side tumor in the small intestines were both taken out by surgery. Now my onc. has given me an earlier date for the next scan. I'm having it next Monday.

Guess what? I was just told by my doc to stop lyrica because it gives me itches. Once I stopped it, I found out that I was feeling much worse than with it. Now I'm suffering severe numbness and stiffness in my feet and legs and burning and swelling sensation inn my hands. Don't know what to do.

By the way, how do you post without replying only to one posting? In other words, how do you guys line up your replying message with the previous one?

Hi Wanxia,

When it comes to posting in a thread... there's one of two levels when posting.

1) If you reply to the original post, no matter how many posts come after it, then your post will be in the main line of original replies to the person who started the thread.

2) If you reply to any of the other posts in a thread, then you are replying to only the person you hit the reply key to. Like right now, my post is in reply to yours.... not to the original post in this thread.

Does that make sense?

Hugggggs,

Cheryl

wanxia58 · May 2009

let me try
did i succeed? i did! thank you, cheryl.

PhillieG · May 2009

CherylHutch said:
Lyrica
Hey Phil... what things did you hear about Lyrica that you didn't care for? Next time I go to my GP I was going to ask about trying Lyrica but if you know of some things that aren't good about it, I'd like to know.

Me, I'm on Gabapentin, Tramadol and Tylenol #3 with codiene for pain and neuropathy. I'm thinking that they are helping for the most part... but my feet are still bad, as are both my shins. It's because of the neuropathy and arthritis (which is now also in my lower back) that walking any distance is a problem. I am TRYING to make myself walk... starting out short distances, but some days I can't even walk completely around the block. So anything that might help with this, I'm willing to give it a try... unless it is known to do other damage.

Thanks!

C.

Lyrica
It can cause suicidal tendencies. That would get rid of the pain though.
It's not like everyone who takes it has that side effect, but a friend who is a nurse said to me when I told them I was taking that (right after my last hospital stay) and they told me that and I thought, hmmm, that's the LAST thing I need at this point. So I stopped taking it. Now I only have homicidal tendencies*.
:-)

*a joke, don't report me

I'm a new comer.

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