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Chemo and Cancer Pain

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

Hello 

     So my dad is on folfiri chemotherapy and overrall things are going okay expect his pain level seems to be going up . He says his neuropathy is getting worse also that he has bad pain in his buttocks which got me thinking is this kind of thing normal ? Does the chemotherapy make pain worse or could this be something more sinister like his cancer getting worse while his own chemotherapy ? My dad does have a colostomy and urostomy as well as a kidney drain and has had two surgeries . So I know pain is going to happen that's a ton but it's the gettign worse on chemotherapy that I find scary.

     The doctor's don't seem to be taking it to seriously as if pain is just something that can't be avoided . My dad's palliative doctor who has him on oxycontin even kind of shrugs it off like it's normal . So I am just looking for experience advice on what everyone thinks . I am afriad my dad's pain will continue to get worse unless we do something if there is something we can do . 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1188
Joined: Apr 2017

I had severe and otherwise inexplicable pain--especially in the back, joints and muscles.  The only explanaiton I had was the chemo.  If you read the drug research carefully, you will find these to be frequent side effects.  I have no idea why the doctors and pharmacists say they have never heard of this, when these are reported issues.  There are also numerous old posts on these issues.  

A hidden secret is that alcohol can be an effective pain reliever (see related posts recently).  Also, as hard as it may seem, exercise seemed to help me.

Pain is a horrible and debilatative problem.  From my perspective you should take it seriously and you should seek explanations and solutions.

 

Real Tar Heel
Posts: 253
Joined: Nov 2019

I didn't have pain on FOLFOX, but that was adjuvant and I might not have received as much of the drugs as your Dad is getting. I would focus on getting him some pain relief. Only the regular scans can tell if there is any tumor activity, so wait for that before worrying. Pain is your body telling you something is not quite right, but it might not be the thing you are worried about that is the cause.

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

What is his CEA and MCV?  That will give you a hint if chemo is working.  If CEA is higher now and MCV is low it might be time to ask for a scan.

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

Oncologist is resisting ordering CEA says it won't tell us nothing but I plan to get on him about that weds when we see him again and his MCV has been mid to high 70s for a while I noticed last blood test it was 80.1 best I seen in a while . 

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

beta glucan beta glucan beta glucan 1,3 1,6 will bring MCV up.

AnneO1965's picture
AnneO1965
Posts: 181
Joined: May 2019

The whole time I was on chemo it felt like I was sitting on a rock.

 

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

Hmmm this is what my dad says it feels like he said you nailed exactly what he feels so I guess chemo can cause pain . 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

I have some more questions. Does your dad sit a lot? Is he sleeping a lot? Is he moving less? Does he use an extra pillow between his buttocks and a seat? If yes your dad is experiencing similar symptoms like my dad and all are related to the fatigue. You are tired, not moving so much and then muscles are getting less. If you have less muscle mass in the buttocks, you are sitting on the bones. My dads neck is also another issue. Just today I did massage him for 20 minutes just to get the knots out of his muscles, helps better than a pain killer. 

So ask your dad directly what kind of pain it is in his buttocks and if it gets better if he has an extra fluffy cushion to sit on. You can get cushions for people who sit a lot due to a disease like people in a wheelchair. Heard really good things about them. 

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

This makes perfect sense cause when my dad is like in the car he brings a pillow to sit on and he says it helps alot take the pain away . He really isn't sitting much more then he ever has since he was diagnosed but he still sits a good amount . He usually goes out to the store or something once a day gets some walking in and the rest of the day he is sitting pretty much but he does get up around the house to cook and stuff and just walk around to . I am going to call the medical supplies store in the morning to see about these special cushions I didn't know there was such a thing . 

darcher's picture
darcher
Posts: 304
Joined: Jun 2017

Although I escaped without any attachments I do remember the pain of just trying to walk across the floor. My feet hurt bad and to this day they're still kinda numb like when you've got super thick callouses. My hands started to get that way but it never took hold. I was lucky to not have had things get too out of hand to where I'd need any real help with things. It may be due to weight loss and the bones not having the cushion they once had. My oncologist recommended walking exercise which I did as best I could and it seemed to help. He shouldn't feel embarrassed to use as many pillows as it takes to make things soft enough to sit.

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

It seems I got it wrong the pain is actually not it buttocks it's where the hole was but pillows and cushions help so it's confusing got a call into his CR surgeon wondering if it could be scar tissue .?

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