Hello everyone,
This is the first time I try to join a forum and my hope is that it may enable me to find some sort of comfort knowing I am not alone in this. After removal of a section of the colon, I was left with stage III since cancer cells were found in three lymph nodes.
I completed my six months of chemo (FOLFOX) in June and since then I am having a progressive type of neuropathy, I am now walking wiith the aide of a cane and I am getting very good at dropping things out of my hands (no feelings on fingers...) My doctor told me that it is a normal side effect to Oxaliplatin. Has anyone gone through this?
Since my surgery in November, i have not been able to go back to work and I am afraid I am loosing what's left of my sanity.
I will appreciate your comments and look forward it.
With prompt recovery wishes to all.

My mom is experiencing the neuropathy you speak of. She is Stage IV rectal cancer. Its now metasised to her lungs, so that's what she's getting treated for. She's on the Oxaliplatin as well as Avastin. She just had her first chemo treatment of this new formula on Wednesday. She said the other day, she went to reach into the fridge to grab some strawberries. She pulled them out of the container and when she touched them to cut them up, she discribed as an electric shock! She almost threw the strawberries across the room!! She also said she can't tolerate very cold or hot drinks....it almost makes her throat seize up. She claims it has subsided since then, but the couple days after were the worst. My mom has been working, and hopefully she'll continue to. I'm sorry to hear that you have to walk with a cane...that must be frustrating. I would expect that now you are finished treatment, that your side effects should subside soon. Its hard to say though as everyone takes treatment differently. Hope you feel better soon! :angel:

I'm on folfox5, going through the same cold sensitvity. It is like an electrical shock, very strange. I got used to room temperature water for the first 4-5 days, then its ice cream, cold beer and slurpees until the next chemo..
The throat feeling is different. Its sensitive to the cold but I seem to have scarred it and its particularly felt with room temp liquids.

Have a set of gloves near the fridge and put the glass of milk in the micorwave for a few seconds, its manageable.

Thank you for your replies hoping4best and bossan. I am sorry to hear about your mom's metastasis.
Bossan, I also kept gloves by the fridge. I was craving a cold drink through the summer but had to be contented with room temperature drinks. What is really happening now is the loss of sensitivity on my hands and feet. I was told that Oxaliplatin can damage the nerve endings and that is why I can't feel hands nor feet and have to walk with the cane... What is strange is that it will be two months since my last chemo and the limbs are progressively getting worst and hurting more, is this something experienced by any of you?

I experienced the neuropathy in my hands and feet towards the end of my six month treatment with Oxaliplatin, 5FU, Leucovorin and Avastin. (stage IV Colon cancer) At first it was the cold sensitivity, but by the 5th month my fingers and toes were numb. Always dropping things and feeling like I was walking on stumps, so I can understand your need for a cane. I finished my treatment February. Every day after that, there has been improvement. My doctor said most people will have a complete recovery, some not. Now it is barely noticible - only in the very tips of fingers and my big toes. Unfortunately, I had a recurrence and am back on chemo. My doctor put me on Camptosar. He said I could go back on Oxaliplatin since it worked well for me, but he wants to give me more time to heal from the neuropathy. Hopefully you will soon notice small improvements every day and will be able to return to work. You found the best place for questions. Everyone on this forum is wonderful - so much support and a wealth of information.

Thank you Dianakay, I truly hope you will win this second round. My doctor told me that there is a high recurrance with patients on stage III and IV so I am now being tested again and I hope they will not detect another tumor because I had such a difficult time with the chemo that I am thinking of not taking it (if the case should arise).
I try to get inspired by all of you, strong people and fighters. I know keeping a positive mental attitude is a great medicine as well as laughter, I wish I could force my mind to stay off depression!
Even though I don't know you, I will be pulling for you and sending you my best wishes for strengh and speedy recovery.

Welcome ToniaP. I finished chemo mid May. There is some neuropathy in my finger tips. I seem to notice more when I am tired. I think some people have it go away completely with time, and others don't. Don't think depression and fear aren't common with cancer. I would guess everyone of us and our families have had these feelings. Sometimes they can be overwhelming, and sometimes you actually forget about the cancer for a while.

Thank you Edinaman, I feel like I need to be stronger, I wish I could go through this situation without so much struggle, every day I wake up thinking that this will be the day I get a better grip and as soon as i put my feet on the ground the pain I feel on the legs turns off any other toughts and I get angry at myself for being such inmature adult that can't stop crying. I just did my 2nd CT scan and PET scan and tomorrow I am seeing the doctor for further tests and to hear the results of the scans, I am afraid it will not be good, I have been researching my stage and what I've learned left me very discouraged. Last week, I began walking and trying not to pay attention to my painful legs, I don't know if it will help, I just can't seat at home any longer! I feel like I am complaining all the time and I am sorry if this is the way I sound to all of you courageous people, I pray I will have some strengh to help me go ahead...

Tonia - you have the strength, just don't get in your way. When you cry let the tears fall, take a handful rub them on the legs, tears are real and beneficial. Do the same when the sun is shining, bask in its warmth and joy..... driving out the dark thoughts that haunt us all...... something I learned a few years ago, I hear everything I say..... so I tried to say only the good stuff.... Instead of aint it awful I say its a Little bit better...it helps maintain a positive outlook and a sense of humour. Of course you have the stuff to get through this - finding this forum proves it -just don't let yourself get in the way of releasing it s power. Take care post often will be wishing you well - great place this spot...... we are never alone here :)

Tonia:
Everthing EVERYONE says is accurate. BUT REMEMBER... You have EVERY RIGHT to have bad days. We ARE ALL NOT STRONG EVERYDAY. Please don't let us fool you! Mudlark alluded to this... if you feel like crying... cry. It's OK. This IS a lot to bear, for ANYONE (We Manly Men on the Board included!) This disease IS horrific. The side effects some days are too hard to bear. We all have days where we would rather NOT pull the covers from our heads... sometimes, we can't and give in for the day. OVERALL, though, ATTITUDE IS EVERYTHING, and we TRY like HECK to FIGHT DAY BY DAY!

I Just wanted you to know what you are feeling IS perfectly normal, and we ALL FEEL this way, despite how strong some of our posts sound!

Strength to you and Best of Luck,
CancerDad

I feel like I am complaining all the time and I am sorry if this is the way I sound to all of you courageous people, I pray I will have some strengh to help me go ahead...

We cannot deny that we were dealt a bad hand, but how we deal with it and/or accept it varies with each person and there is no right or wrong way way.

Try to see yourself as well/whole, focus on something you want to do, someone you love and makes you laugh. I insist on seeing comedy when watching movies and tv sitcoms, I sing songs that I love, I cry and pray for hope and wellness.

Keep us posted and keep writing whatever you feel like.....it helps you and everyone else who reads.

Love and happiness.... :wave:

My most sincere gratitude to all of you for your replies and words of courage, it really means a lot to me since I am alone dealing with my situation, members of my family have travelled from EU to spend some time with me while I was on chemo. I always feel like I am a burden to anyone that sees me because of my depressive moods but I want to try to get hold of my positive side and keep growing with its glow, I actually feel better, perhaps as a result of the very comforting good results from the scans and tests even though they are not 100% as my onc. reminded me, at least no new growths or deseased organs showed, but now I wonder what happens to the cancer cells that were detected on the lymph nodes, do they go away and die eventually? The onc. wants me to keep the port in for 2 years in case or a reacurrance... I have an app. with a neurologist to find out how can the nerve damage be reversed, I heard from some of you that evntually it goes away, although my side effects are not diminishing but not progressing to any worst either, so now I am walking (with help from a cane, 1 mile a day to see if that will help but also to gain my musle tissue back, yes, I do care about the way I am on the outside, I will age with pride regardless of my desease!

THANKS AGAIN TO ALL OF YOU AND MY VERY BEST WISHES.

Tonia

Dear Tonia

i think its a bit rough for the onc to tell you to keep your port for a whole 2 years ,,........ "just in case" . Thats like a constant reminder and a constant constraint. Is that really necessary?


btw, one mile a day is great and prob more than i do in a week !!!!!! :eek:

take care
ktee

Ktee, you are so right about that, but the onc. told me that he would have the port removed if it became a problem or painful... in the meantime I have to take warfarin as long as the port is in. Since they are now watching a new cyst I supposse it will be better to keep it, although it does bother if I sleep on the side where it's inserted.
I have grown so bored in the last 10 months of being at home that walking (sometimes in the Vitamaster and sometimes around the neighborhood) is a great pleasure, disregarding my painful legs...
Best wishes for you and your husband,
Tonia

Tonia:

I too use a cane. I'm sure you have read my story. I use it more for pain though do experience the sensory neropathy you do on occassion from the oxali I had. For the most part, that neruropathy is gone now... on occassions, it flares though, and lasts for days, then subsides. I'm sure you have tried the anti-depressants, and anti-convulsants for pain control (not depression, although I understand that as well!).

I have a suggestion... why not try aqua therapy and see if some of the pain lessens up. I know it's frustrating not to be able to go as far as you once could. But in water, you are weightless, and I just feel a burden lift from the chronic pain I suffer. That and I do use the ThermoSpa... hot tub with therapeutic jets... almost daily. You might also try Capsascin (sp??) to stimulate nerves in other areas and lessen the amount you feel in the hands and feet... just DON'T GET IT IN YOUR EYES!!

FOOD For thought.

BTW I'm still out from work too. I wonder if we took a poll how many patients return to work on a full-time basis. Now there's something to look into. It will be 2 years for me in Oct or November.

Good Luck,
CancerDad

PS I still have my port, though I did convince my onc to get rid of it. I was scheduled for removal, but figured that I would keep it since I likely will have more surgery. Otherwise, I say OUT WITH IT. I know some people keep it in for a while, but it's a constant reminder for me, and I get shooting pains around it at times. Do you?? Keep in mind, if you were to have a recurrence, you could always have one put back in.-- Your choice though. Remember that.-- CD
*ATTITUDE IS EVERYTHING**

CancerDad,

I posted twice a reply yesterday and they are not showing... I don't know what happened. The first one was by accident, caused by my numb fingers pressing the space bar... The second one, my screen went blank and I had to reboot.

I appreciate your suggestions and I sure will try them once I stop feeling the strong and painful sensitivity to hot and cold. Today I will visit with a neurologist and I truly hope he can help me reverse the nerve damage or whatever is that I have now. I will ask if he can prescribe Capsascin as you mentioned.

May I ask why are you so convinced that you will have more surgery? I know that once the c is on T3 or T4 there is a high probability of new growth or recurrance, but I only wish for all of us that there was a point where we can go on with our lives without any further agony, to me it is an agony to fear new c's, I do not know how to take it in a positive way as some people are constantly telling me.

I also feel sharp pains from the area where the port tubing is laying.

CD, I do wish you well, you seem to be such a great source of information and it is great that you research the subject and that you are such great comfort to so many of us with your wise advise and caring postings, you know how much you are appreciated around here. You, as well as all the other members in this circle of friends, have touched my heart.

Take care,
Tonia

Tonia:
Thanks for the kind words... in some way, I feel if I can try to help people avoid what I had/have to endure then it's worth it.

With that said... I have a mess of problems with anastamotic strictures... where they reconnected me to what little rectum I have left... suffer Great Pain everyday, have not been able to have a normal stool because the opening is smaller than your pinkie finger tip, NO matter what they do. I'm just SO SICK OF DOCTORS. SO SICK OF IT ALL. I am now scheduled for a perm colostomy and proctectomy at the end of August.. this is why I say I'm expecting surgery. The closer I get though, the more I want to tell them all where to go, and find someone who can help, or at least try... I have an appointment with a last ditch effort... someone I have been waiting forever to see, but that's at the beginning of September. This is why I say that I don't think I will do this surgery. It already got pushed to the end of August because my specialist had to take a vacation, so he changed the date. Well, I think I need to change the date too, to accommodate this Expertise opinion.

I've babbled enough. I wish you the best with your ailments. Isn't this fun???

Fondly,
CancerDad

PS Can you tell I'm just having a BAD week?

CancerDad,
It really upsets me to hear that doctors manage to make you have further difficulties, this is so disturbing. I know that if I say to you that I am sorry to hear what you have to go through does not make you feel any better and I sincerely wish I could find a way to help or add some comfort to your days.

Allow me to send you a big hug.

Something funny to laugh at... do you know how many times I have to hit the backspace key and delete the extra letters that my dumb numb fingers insist on hitting...? Well, this was not meant to be a question but the answer would be: constantly! My daughter told me with pride that she now can type faster than me!

Babble as much as you want and then more.

Tonia

CancerDad, it is too bad we are at the mercy of the Doctors and their changing schedules. I don't think they care or have any concern for what we are going through when they reschedule appointments time after time.
Tonia, I think you have given me a good excuse for my poor typing. I hope things went well at the neurolgist.
CancerDad, this must be the week for feeling bad. We all need a chance to vent and ramble.

Then I say VENT AND RAMBLE. Thank you ALL for Being here!
~CD

Then I say VENT AND RAMBLE. Thank you ALL for Being here!
~CD

My heart is with you CancerDad, you are truly a strong soul but scream all you want....I know I do. I'm praying for you out here on the left coast...

Hi, this is my first time on the board. I really need some advice. I was diagnosed with Stage II Colon Cancer (T-3, NO). My surgery was July 18. My oncologist wants to give me FOLOX 4 Chemo treatment, but reading all the info I'm not sure if I need it. Please, is anybody out there with the same problem. Thanks, Travelnut

Hello Travelnut,
I had the same surgery and was treated with Folfox during 6 months. If not for the side effects, I can say that I was glad to have gone through that since I do not have any further tumors and I know it is the results of the chemo. I would suggest you speak with your doctor about your doubts or if it is possible for you, find another doctor to get a second opinion.
I wish you the best.
Tonia

I'd also get a second opinion.

I'm starting Folfox-4 regiment next week for stage-3 colon cancer. Everything I've read about the Folfox-4 regiment is very encouraging.

For me personally, If I was a stage two.....I'd probably do the chemo jsut to be on the safe side.

Good luck,
Gary

Stage IV here, liver and abdomen nets, I'm not a candidate for surgery so all I've be getting is folfox. Everything has gone down at least 70% and some spots are gone in just 5 treatments. I'm all for it. I've had some side effects but its been manageable. I'm also seeing a naturopath and getting acupuncture twice a week to offset the chemo. Do something positive while you go, talk to friends, read a fun book, sing, whatever...I play my guitar while getting the chemo.

Peace and health...

My hubby is really scared of permanent neuropathy - I read what ToniaP has been going through. (and I'm scared too!)

The Dr said we could stop FOLFOX (and change to 5fu/leucovorin) if the neuropathy becomes bad. Is there a point where you can stop that will prevent it from becoming permanent? What does it feel like when it changes from just cold sensitivity to the permanent kind?

He had the cold sensitivity last time, but it went away after ~5 days. Day 1 of his second dose was today. He has been going to the bathroom MUCH more often that he was before he started the chemo. He's taking lomotil - it helps, but not enough. He's in excruciating pain during the times when he's visiting the bathroom constantly. He has tried lydocaine (no effect), calmoseptine (slight improvement), baby powder, A&D, and several others. Any suggestions for when things are so bad and the pain pills take 1hr to kick in?
I hate seeing him in so much pain.

ToniaP - has your neuropathy improved? (I hope it has!)

Thanks, again and again, for all your help!

Happy Holidays and may everyone's 2006 be better!
(expletives about 2005 deleted...)

HI ToniaP, wanted to see how you're doing. Back in August, I replied to your post. Said my mom has been experiencing the hot and cold sensitivity.

WELL, she seems to be in the same situation as you are now (or hopefully were). Her last chemo treatment was in December '05. She was doing the 5FU, Oxip (sp?) and Avastin. The tumors in her lungs are not improving, so now they've stopped her for good.

BUT, she is having severe numbness in her hands and feet, not just the cold sensitivity....COMPLETE NUMBNESS! It hasn't been getting better. Her hands feel like they are numb and buzzing all the time, and it feels like she's walking on stumps too.

Have you noticed any improvement? We are going the natural/alternative route with my mom now, and so I will be getting her on a couple of supplements to see if it can help the neuropathy. I really hope its not permanent nerve damage. My mom finds it very frustrating, as I'm sure you do....

Hope you're getting better....let me know!

Thanks!

hoping4best - how bad did her neuropathy get during treatment? My husband's legs get numb sometimes. Warming him up seems to make it go away sooner. (He's on #5 of 12 FOLFOX treatments.)

I hope your mom gets better soon. Let us know if any of the alternative stuff helps.

Thanks!

My dad has this in his hands mainly, although he says he cannot feel his feet sometimes too... he finds that putting his hands on the electric blanket takes the feeling away....only problem is it returns pretty much when he stops!! Doc said it may improve with time but no certainty.....

caffiened - My mom had about 17 treatments over 1 year, and the numbness happened near the last few treatments. She had the cold and hot sensitivity throughout, but the complete numbness was near the end. Makes her wonder why she got put through so many treatments. She wonders if it would have made a difference if she didn't have the last few!

fannyann - Thanks for your reply! Warmth seems to have little effect on the numbness, and her hands feel cold all the time, even though when I touch them, they are warm to me....very odd.

BUMP

Any of your suffering neuropathy try neurotin?? My mom is still not getting any better. She cannot walk through the mall without sitting 6 times!