foot/palm pain on xeloda

keefer

Hi, eveyone.

I'm new to all of this--so apologies in advance if this topic has already been covered elsewhere. My brother just stated Xeloda and radiation tx for Stage 2 colorectal ca. He's having a tough time with the pins/needles feeling from xeloda, especially to soles of feet. I suggested he visit your website, but he's not really open to sharing in an online forum. We don't live close geographically, and his doc didn't specify whether his stage 2 is 2a, 2b, or 2c or 2becontinued.... Not sure if brother just didn't know enough to ask, or if doctor just doesn't share info. I'm a hep c survivor, and know from experience the patient can't just "trust the doc" implicitly: personal responsibility demands education and active involvement, if one wants the best possible outcome.

Anyway, any suggestions for alleviating some of the Xeloda sides would be appreciated.

keefer

Trubrit

Welcome to the forum

We have many folks posting here on behalf of their loved ones, so we welcome you and look forward to helping you help your brother. 

The tingling in hands and feet is a sign that neuropathy is starting. Neuropathy can get out of hand very quickly and become permanent if allowed to get out of control. 

My suggestion to you would be to let your brother know that he MUST talk to his Oncologist about the side effects (all of them, not just the neuropathy) at EVERY visit. 

If the neuropathy is getting out of hand, then the dosage on his Xeloda should be lowered.  That is what the Oncologist is there for, to make adjustments to treatment, so that the patient gets the required dose to work on the Cancer, without causing long-lasting disability. 

There are definitely MANY Cancer patients out there who do not wish to know what their staging is. I actually read about a study and I was quite shocked at the results, being one who wants to know everything. 

So, there is nothing short of lowering the dosage that can help the neuropathy. Though, saying that, I have found that for me, perosonally, if I eat allot of sugar, my neuropathy is definitely worse; and that makes sense, because it is sugars attatching to the nerves that cause the tingling, numb feelings. 

I am one of those who have long-term neuropathy, because I wasn't upfront with my Oncologist about how bad it was getting. It wasn't until my hands went purple and my Onc noticed, and at that point, he stopped my 5FU immedietely.  I do believe mine was casued by an overdose of 5FU - there is a story behind that - as I didn't suffer anything during my FOLFOX treatment.  

What a wonderful sister you are to reach out on behalf of your brother. Love can take a Cancer patient a long, long way. 

Tru

abita

Trubrit said:

Welcome to the forum

We have many folks posting here on behalf of their loved ones, so we welcome you and look forward to helping you help your brother. 

The tingling in hands and feet is a sign that neuropathy is starting. Neuropathy can get out of hand very quickly and become permanent if allowed to get out of control. 

My suggestion to you would be to let your brother know that he MUST talk to his Oncologist about the side effects (all of them, not just the neuropathy) at EVERY visit. 

If the neuropathy is getting out of hand, then the dosage on his Xeloda should be lowered.  That is what the Oncologist is there for, to make adjustments to treatment, so that the patient gets the required dose to work on the Cancer, without causing long-lasting disability. 

There are definitely MANY Cancer patients out there who do not wish to know what their staging is. I actually read about a study and I was quite shocked at the results, being one who wants to know everything. 

So, there is nothing short of lowering the dosage that can help the neuropathy. Though, saying that, I have found that for me, perosonally, if I eat allot of sugar, my neuropathy is definitely worse; and that makes sense, because it is sugars attatching to the nerves that cause the tingling, numb feelings. 

I am one of those who have long-term neuropathy, because I wasn't upfront with my Oncologist about how bad it was getting. It wasn't until my hands went purple and my Onc noticed, and at that point, he stopped my 5FU immedietely.  I do believe mine was casued by an overdose of 5FU - there is a story behind that - as I didn't suffer anything during my FOLFOX treatment.  

What a wonderful sister you are to reach out on behalf of your brother. Love can take a Cancer patient a long, long way. 

Tru

Did the oncologist say that

Did the oncologist say that sugar casues the neuropothy? While I have eaten some sugar cookies a friend made me for Christmas, the truth is I have had no desire, and a hard time tolerating, sweets since I left the Hospital in Oct. My lips get a little numb, and I am numb around my surgery scar. Forgive me for not knowing and asking. I have mostly not googled anything as I don't want to see bad things. I may have my head in the clouds, but for the most part, I believe my cancer is cureable as my oncologist told me, and that I will make it through this, and have the ability to lead a healthy happy life when I finsih my chemo and surgery. I do have my moments, but that probably makes me human.

Trubrit

No!

You should never apologize for asking quesitons. It is how you learn and it is why we are all here, to share and to learn.

I am a medical assistant for a Podiatrist (foot doctor) and we deal with allot of diabetic patients with neuropathy.   In diabetic patients with neuropathy, the sugars attatch themselve to the ends of the nerves, thus causing tingling, pain, numbness otherwise known as nerve damage. 

So what I am saying that I PERSONALLY feel that when I eat too much sugar, my neuropathy is aggrivated.  Wether that is the true cause, I do not know, but my spirit tells me that for me it is an issue. 

While whatever it is in the chemo that caused the nerve damage, my neuropathy, three years five months out from treatment, is still present and I've lived with it long enough to notice when it flares up. 

Here is a paragraph that talks specifically about sugars and neuropathy. 

Dr. Richard P. Jacoby, author of Sugar Crush, explains how sugar imacts the nerves this way: "When you eat a diet heavy in provesed foods full of wheat and refined sugar, you body is put on a glucose roller coaster. Because fiber has been stripped out of these products, the sugar inherent in all carbohydrates literally enters the blood stream in a rush. As your blood sugar spikes, most of the excess gets carried away to be stroed as abdominal fat. While that's happening, excess glucose still circulates throughout your body, attaching itself to protien and building up sorbitol in the cells. causing them to swell and compress the nerves. 

Annabelle41415

Welcome

Welcome to the boards and thank you for being such an advocate for your brother.  He should be very proud of you, but know that there are some that just don't want to come here.  That foot/hand syndrome can be difficult.  It really never bothered me but it does others terrible.  My oncologist told me to always apply heavy lotion day and night to both areas.  As far as the tingling - you should let your doctor know right away.  It might be something that could become permanent and he doesn't want that.  Make sure the doctor knows exactly what he is feeling.  Hope that his symptoms get better.

Kim

Annabelle41415

Trubrit said:

No!

You should never apologize for asking quesitons. It is how you learn and it is why we are all here, to share and to learn.

I am a medical assistant for a Podiatrist (foot doctor) and we deal with allot of diabetic patients with neuropathy.   In diabetic patients with neuropathy, the sugars attatch themselve to the ends of the nerves, thus causing tingling, pain, numbness otherwise known as nerve damage. 

So what I am saying that I PERSONALLY feel that when I eat too much sugar, my neuropathy is aggrivated.  Wether that is the true cause, I do not know, but my spirit tells me that for me it is an issue. 

While whatever it is in the chemo that caused the nerve damage, my neuropathy, three years five months out from treatment, is still present and I've lived with it long enough to notice when it flares up. 

Here is a paragraph that talks specifically about sugars and neuropathy. 

Dr. Richard P. Jacoby, author of Sugar Crush, explains how sugar imacts the nerves this way: "When you eat a diet heavy in provesed foods full of wheat and refined sugar, you body is put on a glucose roller coaster. Because fiber has been stripped out of these products, the sugar inherent in all carbohydrates literally enters the blood stream in a rush. As your blood sugar spikes, most of the excess gets carried away to be stroed as abdominal fat. While that's happening, excess glucose still circulates throughout your body, attaching itself to protien and building up sorbitol in the cells. causing them to swell and compress the nerves. 

Tru

Never knew that about sugars but my neuropathy will happen even when going without eating all day.  Mine is permanent due to my oncologists negligence.  She never wanted to listen when telling her it was bad during treatment.  I'm sure that everyone reacts different so that is good information you gave for some people.  It sure could help.

Kim

keefer

thanks, gang!

I appreciate the feedback and insights! I'll be speaking with brother later today, and will relay to him the necessity of telling dr about ALL the sides EVERY visit. Tomorrow's his day to take xeloda (he only takes it once a week), and I'm not sure when he actually SEES the oncology staff.... radiation tx, yes--but no onco there.

Growing up, people thought I was the big brother--because I was physically larger than he from age 3 going forward. I THOUGHT we were twins---until he started 1st grade without me. Yes, there's an "almost twin" connection. We don't do a lot of talking normally--but that's changing since he started tx.

QUESTION: Our sister told me brother is not allowed to drink tea or coffee with meals--because it would inhibit iron absorption????? Between meals, no prob--but not while taking food for nutrition purposes..... Anything to that? I am seriously NOT CRAZY ABOUT brother's oncologist--don't know his name, but based on what brother says, he just doesn't sound like a doctor I'd be able to trust with my life!

Thanks--and happy new year!

kEEfEr