Feet problems after Treatment
I just joined and am so excited and impressed with this site. I stumbled on it trying to find out if someone out there is having the same weird side effect I'm having and knows what's causing it. I finished chemo 3 years ago and 1 year ago my feet became red most of the time (and I mean bright sunburned red) and the little vessels started to burst, etc. At first it was just the look of it and I wasn't too concerned but now it is painful if I'm on my feet a lot. It's like I'm 42 but my feet are 82. Vasculitis and arteial problems are ruled out and the best the vascular specialists could say was that it was most likely a latent side effect of chemo and to stay away from cold and wear socks - (gee, thanks, guys and here's your $500). I had the Folfox, 5FU regimen for 6 months- no avastin. I'm into a lot of natural, naturopathic stuff and have tried foot detox treatments and a lot of other things and nothing seems to make a difference. The only other thing I notice as far as side effects from when I was in treatment is that my eyes, when I tear up and my jaws when I eat sometimes will have that pain I remember from the Oxiliplatin side effects. The broken vein thing is moving up my lower legs a little now and I would love to know that I'm not the only survivor with this freaky leftover. Any ideas??
Comments
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Neuropathy
Hi Kelly, and welcome!
Sounds like you still have neuropathy. I'm having the same problem, mostly with my feet, but sometimes i do get the feeling in my mouth, you know the weird stinging feeling in the back of the throat when i drink something cold.
Also, i do still have neuropathy in my legs and feet, and lately have noticed my feet are in great pain, particularly when touched in certain areas. The area in front of the heel by the arch, and the top side of my left foot are the worst. I'm seeing a neurologist, but we're just finishing the tests to see how bad the neuropathy is. I could tell them exactly how bad it is, but i think they're testing determining equipment. I have not gotten the capillary problems you have, so i don't know if that's part of the neuropathy. Have you seen a neurologist? I've been out of treatment since August of '08. Oh, also, one doctor has said it will improve in a few years, another doctor has told me it may not.
Many hugs,
Krista0 -
chiming inkristasplace said:Neuropathy
Hi Kelly, and welcome!
Sounds like you still have neuropathy. I'm having the same problem, mostly with my feet, but sometimes i do get the feeling in my mouth, you know the weird stinging feeling in the back of the throat when i drink something cold.
Also, i do still have neuropathy in my legs and feet, and lately have noticed my feet are in great pain, particularly when touched in certain areas. The area in front of the heel by the arch, and the top side of my left foot are the worst. I'm seeing a neurologist, but we're just finishing the tests to see how bad the neuropathy is. I could tell them exactly how bad it is, but i think they're testing determining equipment. I have not gotten the capillary problems you have, so i don't know if that's part of the neuropathy. Have you seen a neurologist? I've been out of treatment since August of '08. Oh, also, one doctor has said it will improve in a few years, another doctor has told me it may not.
Many hugs,
Krista
first of all welcome kelly.these are tha things i worry about when i finish this sh$&.i go for #4 on tuesday and everyday i feel this chemo is killing me.and now i here people who have been off of the stuff are still having painful side effects.really is it all worth it?please somebody tell me.i know i shoulnt think like this but i went to my stepgrandmothers funeral the other day.she looked so peaceful and in no more pain.somedays i just dont have the fight in me.but then i think about my kids and husband and the fight comes back.i just so want to be normal again because i dont like this new normal.thanks for letting me vent and kelly im sorry you are still having those crappy chemo side effects Godbless.....johnnybegood0 -
Is it worth it?johnnybegood said:chiming in
first of all welcome kelly.these are tha things i worry about when i finish this sh$&.i go for #4 on tuesday and everyday i feel this chemo is killing me.and now i here people who have been off of the stuff are still having painful side effects.really is it all worth it?please somebody tell me.i know i shoulnt think like this but i went to my stepgrandmothers funeral the other day.she looked so peaceful and in no more pain.somedays i just dont have the fight in me.but then i think about my kids and husband and the fight comes back.i just so want to be normal again because i dont like this new normal.thanks for letting me vent and kelly im sorry you are still having those crappy chemo side effects Godbless.....johnnybegood
I'm always surprised when someone asks that question. Yes, it's a tough path we are all on, that's a given.... but there are lots of others who do not have cancer that are on just as hard journeys, they just don't get the "national" attention that cancer seems to get. And yet, their journeys could be way tougher with no solution/treatment. For example... what about a parent who loses a child? There is not treatment for that kind of pain. What about a person who has a terminal illness and has heard the words, "I'm sorry, there's nothing more that we can do for you. I'd advise you to get your affairs in order as soon as possible." What about the person who left home to go do some weekend chores and happened to be in the wrong place at the wrong time and was killed... never to come home again? There are so many "What about..." that we don't really think about because we are on our own journeys... but the difference for those who are on treatment, or still have the option of treatments is... there is HOPE for us to beat the monster! No one said life was going to be easy and painfree... and no one has given anyone a guarantee that they are going to have a long, happy life. But we all currently have life on our side and for those of us who still have the options of treatment, we have hope that we will beat the monster.
Is it worth it? I guess that is an individual question... if the alternative is death and you don't want to be on this earth anymore, then I guess the answer would be, "No, it's not worth it. I don't have anything here on this planet that I want to live for, so it's time to move on. No sense suffering the treatments just to survive on a planet that I'm ready to leave." But if the answer is, "YES! I have so much I still want to do, share and work on ... I do NOT want to leave this planet!" then you wouldn't even be thinking of possibly giving up.
From a totally personal perspective... it never entered my mind that I was going to allow myself to die. I would do everything I possibly have to do to beat the monster and live! Yes, the chemo has left some ongoing side affects, the worse being the chronic nerve pain, that I will probably have for the rest of my life. Am I angry? Not at all. I'm alive and now, one of my challenges is to find a med or combination of meds that will control the nerve pain and tell the brain this is NOT pain you are feeling so get over it
Not everyone sees life like I do, but I love it and love everyone in my life. So any treatment, surgery, drug that will keep me alive... it is worth it big time!! The side affects... well, they become secondary to life itself
Just my .02 worth
Cheryl0 -
thanksCherylHutch said:Is it worth it?
I'm always surprised when someone asks that question. Yes, it's a tough path we are all on, that's a given.... but there are lots of others who do not have cancer that are on just as hard journeys, they just don't get the "national" attention that cancer seems to get. And yet, their journeys could be way tougher with no solution/treatment. For example... what about a parent who loses a child? There is not treatment for that kind of pain. What about a person who has a terminal illness and has heard the words, "I'm sorry, there's nothing more that we can do for you. I'd advise you to get your affairs in order as soon as possible." What about the person who left home to go do some weekend chores and happened to be in the wrong place at the wrong time and was killed... never to come home again? There are so many "What about..." that we don't really think about because we are on our own journeys... but the difference for those who are on treatment, or still have the option of treatments is... there is HOPE for us to beat the monster! No one said life was going to be easy and painfree... and no one has given anyone a guarantee that they are going to have a long, happy life. But we all currently have life on our side and for those of us who still have the options of treatment, we have hope that we will beat the monster.
Is it worth it? I guess that is an individual question... if the alternative is death and you don't want to be on this earth anymore, then I guess the answer would be, "No, it's not worth it. I don't have anything here on this planet that I want to live for, so it's time to move on. No sense suffering the treatments just to survive on a planet that I'm ready to leave." But if the answer is, "YES! I have so much I still want to do, share and work on ... I do NOT want to leave this planet!" then you wouldn't even be thinking of possibly giving up.
From a totally personal perspective... it never entered my mind that I was going to allow myself to die. I would do everything I possibly have to do to beat the monster and live! Yes, the chemo has left some ongoing side affects, the worse being the chronic nerve pain, that I will probably have for the rest of my life. Am I angry? Not at all. I'm alive and now, one of my challenges is to find a med or combination of meds that will control the nerve pain and tell the brain this is NOT pain you are feeling so get over it
Not everyone sees life like I do, but I love it and love everyone in my life. So any treatment, surgery, drug that will keep me alive... it is worth it big time!! The side affects... well, they become secondary to life itself
Just my .02 worth
Cheryl
cheryl for the pep talk.i really needed it .i havent been to a funeral since i was dx and i guess it got the best of me{stress}im feeling better now.its a beautiful day in kentucky and i just went out in the middle of the field and just sat and watched my 3 horses and everything around me.then when my johhny got in the pond and started to play pawing at the water i said a little prayer.and now i know YES it is worth it thanks a lot cheryl and Godbless......johnnybegood0 -
Mortalityjohnnybegood said:thanks
cheryl for the pep talk.i really needed it .i havent been to a funeral since i was dx and i guess it got the best of me{stress}im feeling better now.its a beautiful day in kentucky and i just went out in the middle of the field and just sat and watched my 3 horses and everything around me.then when my johhny got in the pond and started to play pawing at the water i said a little prayer.and now i know YES it is worth it thanks a lot cheryl and Godbless......johnnybegood
The way i see it, we who have cancer, or we who have any life threatening illness at all are actually very fortunate in many things. For one thing, we are faced with our mortality, and eventually that makes you realize that every day is a gift. We all have horrible days where we feel like we can't endure another chemo treatment, another surgery, another poke of that needle that is hopeless to find a vein, yet we do it and carry on. I agree with Cheryl so much about trading the horrible side effects for life. The treatments to kill my cancer have given me life long ailments that are still accumulating, and i will continue to complain about them! At least i still have some quality of life, and i'm very hopeful that quality will continue to improve.
It helps to have somthing to look forward to. The big goal is looking forward to NED!
Many hugs,
Krista0 -
Mortalitykristasplace said:Mortality
The way i see it, we who have cancer, or we who have any life threatening illness at all are actually very fortunate in many things. For one thing, we are faced with our mortality, and eventually that makes you realize that every day is a gift. We all have horrible days where we feel like we can't endure another chemo treatment, another surgery, another poke of that needle that is hopeless to find a vein, yet we do it and carry on. I agree with Cheryl so much about trading the horrible side effects for life. The treatments to kill my cancer have given me life long ailments that are still accumulating, and i will continue to complain about them! At least i still have some quality of life, and i'm very hopeful that quality will continue to improve.
It helps to have somthing to look forward to. The big goal is looking forward to NED!
Many hugs,
Krista
Krista... I think you and I are definitely on the same page Yes, cancer sucks... so does getting hit by a car and having multiple injuries. One can say, "Ya, but with the car accident, the injuries will heal and then life gets back to normal"... but does it? Chances are you have memories and fears of that car accident, plus there could be sustained injuries that act up. Broken bones could cause severe arthritis, or a limp or maybe blinded in one eye. These things you have to learn to deal with in your "new" life.
Well, if you have been dealt the cancer card, then life as we knew it definitely changes. Sometimes, believe it or not, for the good... and sometimes, for the bad. Although we all know and want to keep a good, positive attitude... it can be difficult. The medical terminology alone is enough to scare the dickens out of anyone (whatever dickens are) And if you go look up the terminology on the internet, you either get more medical terminology that's impossible to understand, or sometimes the definitions are so scary. Of course, when you take anything out of context, it can be scary... hence, stay away from the internet if you are in a period where you are scared and confused.
I am looking forward, as much as the next person, to being declared NED. Right now my oncologist is still saying that it's unlikely that I will be "cured"... but, if you hear her words now, compared to her words when we first found out the cancer has spread... it's like night and day I think even she is surprised.
So, Jennifer, through all this babble, I guess the message I'm trying to get across is that YES you are scared and it is totally normal to be scared and confused after being given the diagnosis that you have cancer. It's also totally normal to be frustrated, scared and even angry that the doctors can't give you any more information right now until either more tests have been done or surgery. Right now, besides the "Why me??" question (the answer to that... because the cancer monster doesn't target certain people... it is a random selection and like us, you happen to have gotten hit), you probably have lots of other questions.
Another little pre-information. The doctors are going to be very solemn when they are telling you any news/information. I find that when they are solemn that is sometimes more scary than the news they are giving... and because you are scared, you take everything they say and read horrible things into it. Whenever you have a scary, horrible thought enter your head... pinch yourself and remind yourself that "This is one of those times that I'm reading more into what has been said, so I have to digest the news first before going into panic mode".
You have no idea how, in hindsight, I wish I had found this board before I started on my journey of surgery, chemo, radiation, etc. Don't get me wrong, I have the most wonderful friends in the world. I was in the hospital for a month when I was first diagnosed and my friends were with me every step of the way. I was actually in the hospital over Christmas and 3 friends gave up their own Christmas plans to spend it all day with me in the hospital (AND they brought my dog, Bridget, to the hospital for the day). Hahaha... that was the first time that I actually slept well at the hospital... when I had my dog with me and the two of us fell asleep together. But when I got out of the hospital, if I had only had this board and group of friends to bounce questions and fears off.
So you just settle in here... and know that no matter how bad it may sound, and no matter what kind of surgery or treatment you are going to be looking at... we all will be here, ready to hear what's happening, what the plans are and we can tell you what to expect
I'm glad to hear that you are feeling a bit better already
Hugggggggs,
Cheryl0 -
AHOY!
Hey there, KellyT05 -
Sounds like you may have some sort of late onset hand and foot syndrome that you would expect to see with the 5FU. Weird. Are your feet dry and cracking? Do you still have any neuropathy from the oxaliplatin? I wonder if the traditional "treatments" for those two issues would help? B complex has reportedly had positive results on reducing neuropathy and I found Mary Kay's nighttime emolient cream (http://www.marykay.com/skincare/specificneeds/10425800/10425800/default.aspx) (no, I don't drive a pink Cadillac or offer free facials or make-overs!) worked great.
As for those folks who are throwing you "nothingburgers" regarding how to address the issue, FIRE them! and find yourself a doc or docs who are interested in finding out what the issue really is!
Be well.
- SpongeBob0 -
Thankskimby said:Welcome
Kelly,
I don't really have any good suggestions for you but I did want to give you a big WELCOME. Hope this is past you forever. 3 years without treatment! WooHoo!!
Welcome and ask questions whenever you need,
Kimby
Just wanted to say thanks for the Woo!! Hoo!!s and the great welcome to the group. You know, I don't celebrate too much for myself because I feel like I'll jinx it but IT SURE IS NICE when someone else does it for me. Thank you for all of the advice - The foot thing is such a mystery because I don't have the typical stinging and pain associated w/ Neuropathy. It's so crazy to see the doctors look at it and be genuinely perplexed. I'll figure it out eventually. I'm new at this so I hope this posts so all can see that I read what one of the members said about wondering if treatment is worth it and saw, too, all of the great things people came back with. There were 2 times my mom had to talk me out of quitting chemo because of the side effects. I'm so glad I kept going. I look back now and realize I have a quality of life now that is better than I had before, in spite of the side effects. I love more and I pay attention more and I know that whatever crisis comes my way I have been through something that has strengthened my resolve that-anything can happen, for the good or bad, you just have to ride it out and see what's next. I wanted to be part of some group like this to help someone not be afraid like I was and I'm so glad I found it. So, rambling aside, I work fulltime, have 2 kids at home and have my life and my health back and I'm a wimp...so HANG IN THERE!!!!!
Kelly
Kelly0
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