Bowel cancer treatment and side effects

Jomo9

Joint Agony

Can anyone help a 41 year old now with the body of an 82 year old?!

I am suffering from severe joint pain predominantly in my hands, knees and shoulders. It is making changing a stoma bag and opening food packets very challenging. Standing up from the sofa/toilet or walking up/down stairs is an horrendously painful experience. And getting out of bed or even turning over in the night has become a bit of a mission.

As this doesn’t appear to be a recognised FOLFOX side affect but seems reasonably common... please can someone clarify how long this condition is likely to last? Is anyone able to advise on any pills and potions that will reduce the pain and make me a little more mobile please? Thankyou! :x::x:

bettebette

Hello @Jomo9 I was just thinking the same as @Baxter2, I wonder if the joint pains are something entirely different. I hope your oncologist is able to offer you some help. I use a wheat bag at night for my aches and pains (you heat it in the microwave) It does help.
:x::x::x:

Jomo9

@bettebette funnily enough I’ve just had a wheat bag on my knees and it seems to have eased them slightly! From what I’ve read (sorry Googled...) the pains do seem like arthritis. My mum has rheumatoid arthritis and it can be genetic... but am currently being investigated for Lynch Syndrome from my dad. A double whammy of both cancer and arthritis will not be a pleasant experience!! Will be an interesting Oncologist appointment today (Wednesday) :x::x:

bettebette

😐 @Jomo9
Good luck for your appointment :x::x::x:

greyhound gal

Hope you have a successful meeting today, either getting some answers or advice @Jomo9
Best wishes, Wendy :x::x:

Karen17

Hi @Jomo9. I had joint pain while on Oxaliplatin and Capecitabine but my team weren't concerned about it. My GP did rheumatology bloods but they came back normal. My CT report indicated early arthritic changes consistent with age. A wheat bag helped me too. Since finishing chemo the pains have almost gone. Fingers crossed you'll be the same but it's always best to check with your team. Good luck with your appointment today. :x::x:

Marnypots

I’m not sure if this helps as I’m older than you but before I had my Bowel cancer and chemo I could climb mountains run up and down stairs cycle ( I sound very fit but I’m probably not but always determined)
After the chemo I got osteoarthritis and fibromyalgia everyobe said it’s not connected to the chemo but I disagree the chemo also effected my eyes and again told not a side effect but it was,my eyes are fine now. I don’t think all the side effects are noted between us all we should write a list

Jomo9

Evening @Baxter2 @bettebette @greyhound gal @Karen17 @Marnypots alas no Oncologist today so just a ward nurse review. I’ve been told to go to the GP about my aches and pains. Rang up this afternoon and got offered an appointment at the end of April so need to ring up tomorrow morning as if an emergency... seems ridiculous! I’ve booked an Optician appointment as my reading eyesight has got poorer. And worse of all I now have a bit of incontinence which is frustrating when you already have a stoma. Am seriously aging prematurely. @Marnypots is right about creating a side affect list! :x::x:

bettebette

That’s a very poor show @Jomo9, fingers crossed you are able to get an appointment today; the system for getting GP appointments seems very flawed, with the ‘pre bookable’ ones being weeks ahead.
I hope you are able to get some answers today. :x::x:

Marnypots

Dear @Jomo9 all your symptoms I had when on chemo try and get your specialist nurse to get you a quicker appointment
Much love

Baxter2

Gish how frustrating for you @Jomo9!

Hopefully you'll get one for today. It's not an I deal situation at all. Good luck and keep us posted!

Sending lots of love

Karen💜💛❤️💙💚

Jomo9

Hi all, the GP has referred me for x-rays (one hand and one knee) plus bloods to see what is up. His NHS computer is on a different system to the Christie Hospital so he is unable to see my usual blood test results!

greyhound gal

That’s really good @Jomo9 , about the x-rays! Will hopefully get some answers but how typical of NHS that different systems are used!!
Isn’t that the case with police forces too?
Hope the waits not too long,
Best wishes, Wendy :x::x:

determinedjoan

Really hope he can do something to help u; how frustrating all these do computer systems are !

Baxter2

Hopefully you'll get some answers about the pain you're experiencing @Jomo9

Sending love

Karen💜💛❤️💙💚

bettebette

Hi @Jomo9 regarding the different NHS IT systems, I have the same problem and I get a copy of the info from one NHS trust and send or take it to the other! Sounds ridiculous but it saves me having to have blood tests etc twice. Good luck with the tests and x-rays :x::x:

Jomo9

Rang up for my bloods appointment and it’s in a fortnight! Can’t believe that I have so long to wait. Seems a little crazy when you can get a blood test in A&E. Until then I may check out coloured walking sticks as my knees are in bits!! :x::x:

determinedjoan

Oh no, that is a v long time to wait for a blood test ... our poor NHS is collapsing under the strain, isn’t it?

Clancy

Hi @Jomo9, I had very achy joints about two years prior to the cancer. I attended the rheumatology clinic at Wythenshawe and he confirmed, after wrist scans and bloods that I had reactive arthritis. He said it could be brought on after a chest infection or stomach bug.
It has vastly improved since taking steroids with the cancer treatment, I have no achy joints now.
Hope you get sorted soon.:x::x:

Jomo9

@Clancy that sounds positive as I had my surgery at Wythenshawe. Out of interest what scans did you have? I’ve only been offered an x-ray on one hand and one knee as both sides are equally painful. Really hope that I get sorted soon as getting out of bed for my regular 2.5 hour Stacey Stoma empty has become a real mission!! :x::x:

Clancy

Hi @JoMo, I went up to vascular studies at Wythenshawe because my knee ballooned, that turned out to be a bakers cyst. Then I had scans on my wrists because that is where arthritis starts, apparently. My diagnosis was OA which is wear and tear. And the reactive arthritis, which is a transient condition,it lasted six months and disappeared as quickly as it arrived.
I am not medical, I often wonder if the steroids do mask our aches and pains, and when we come off them, it hits us like a ton of bricks, after all we know how it affects our moods. Hope everything is alright.:x::x: