New to board and need advice.

MaryC62

Hi, I'm Mary. I was diagnosed with stage 3 colon cancer last July (2013). Had resection surgery in August. Chemo started in September. Had leucovorin,5-fu, oxaliplatin and neulasta every two weeks for 12 cycles. Finished chemo in Feb. March ct scan came back clear. I was hoping (silly me) that I could get back to my "normal" life pretty quick. Since last month I've started to experience terrible joint pain. I'm ok when I'm moving but when I stop or sit for awhile I feel about 100 years old. I have to work my hands every morning to get the stiffness out. Another thing is PAINFUL sex. I'm post menopausal so dryness is usual but not this pain. I see my primary next week to discuss all this. Wanted to know if anyone has had any experience with hormone creaams or suppositories. Lots of stuff no one warns you about! Thanks for any and all advice.

carrieh

hi mary

Hi Mary,

I sent you a private message. When you log in you can access it

Carrie

Trubrit

I've had the same problem

Joint pain, most prominent in my knuckles, right arm, hips and knees. 

I was pretty much on the same regime as yourself, though I didn't do Nulesta. 

Funny thing happened with me though. Just recently, my CEA rose abruptly. I knew what it meant, though I was hoping it was not true. Anyway, I started cutting down drastically on bread and sugar, because I was reading this great book that suggested it. I didn't realize it for a few weeks, but one day I noticed that I wasn't having the joint pain. Wow! This is nice, I think to myslef. Then, after the liver surgery, I started eating more bread and sugar and guess what? Yeah, the joint pain came right back. 

So for me, it seems like the joint aches are triggered by either or both bread and sugar. 

This doesn't mean that yours are too; but it might be worth playing with the foods you eat, and see if you experience any relief. 

Saying that, I've just eaten two freshly baked bread rolls. Yeah, I don't learn. 

Welcome to the forum. We really are a great bunch, and I hope that you come back and join us. 

MaryC62

Trubrit said:

I've had the same problem

Joint pain, most prominent in my knuckles, right arm, hips and knees. 

I was pretty much on the same regime as yourself, though I didn't do Nulesta. 

Funny thing happened with me though. Just recently, my CEA rose abruptly. I knew what it meant, though I was hoping it was not true. Anyway, I started cutting down drastically on bread and sugar, because I was reading this great book that suggested it. I didn't realize it for a few weeks, but one day I noticed that I wasn't having the joint pain. Wow! This is nice, I think to myslef. Then, after the liver surgery, I started eating more bread and sugar and guess what? Yeah, the joint pain came right back. 

So for me, it seems like the joint aches are triggered by either or both bread and sugar. 

This doesn't mean that yours are too; but it might be worth playing with the foods you eat, and see if you experience any relief. 

Saying that, I've just eaten two freshly baked bread rolls. Yeah, I don't learn. 

Welcome to the forum. We really are a great bunch, and I hope that you come back and join us. 

Not bread!

hi Trubrit. thanks for the idea of diet being the culprit. Noticed it right after I went back to work. I clean houses and my husband and I were also getting a rental propery ready to rent. Lots of physical stuff. Probably pushed myself too hard but I'm so sick of being sick, just wanted my normal active life back. Hopefully my primary will help. Good night for now, Mary

MaryC62

carrieh said:

hi mary

Hi Mary,

I sent you a private message. When you log in you can access it

Carrie

Thanks

Hi Carrie. Thanks for the advice. So nice to have this forum to discuss...things. See my primary next week so hopefully I'll be back with some news. Otherwise have to wait til appt with oncologist.

annalexandria

Welcome to the forum, Mary!

I have problems with post-tx joint pains as well.  I think the oxiliplatin is probably the culprit (the platinum based drugs have all kind of nasty lingering side effects, including nerve damage, which can lead to pain).

My GP has unfortunately been less than helpful, but I will be seeing a specialist called a "physiatrist" in a couple of weeks.  They focus on tx of chronic conditions that are the result of illness or injury.

If they give me any good ideas, I'll let you know.  At the moment, I just take Vicodin for the pain, which does help some, but I'm tapering off and need to find something else.  I might try acupuncture.  Have you looked into that?

And on the alternative side of things, my naturopath believes that chemo can damage the lining of the gut so much that it becomes permeable, allowing tiny food particles to leak out.  These are perceived as foreign by the immune system, which then moves the particles away from the core and into the extremities...leading to joint pain in hands, feet, etc.

She recommends testing for food allergies, or doing a food elimination diet, to see what foods you are most reactive to.  It may or may not be bread that is the culprit!  Oddly enough, for me, red dye in candy and aspartame in diet coke make my joints hurt like crazy.  I can live without the soda, but I'm sad about giving up Hot Tamales.