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Hans

Capecetabine and leg pain

Hullo, My wife Anne has been taking oral capecetabine since January and must be on cycle six or so. During that time the dose has been reduced now at 50% due to mucocitis, etc. She is normal weight and in fit health and exercises for an hour a day on her trampoline or walking. She claims early 50's = but is 60ish I think. She has had rectal the op was 4 years ago and had a successful liver resection 9 months ago.
Over the last week she has had new onset increasing pain in the right part of her bottom that makes it hard for her to lift her leg and laso get out of bed. The pain is now severe. Walking seems to help. She denies leg weakness or restriction. She phoned the onc yesterday who advised seeing the GP. I have told her not to take the tabs this morning 'just incase'.
Any ideas welcome - she is very frightened that its like poor Olivia Newton John who has a met in her sacrum. As fas as is known - Anne is cancer free and CEA was 0.9 a month ago.
I am worried = any ideas gladly welcome please. Have you heard of this before.
Hans (the other pain in her bottom)

Lizalou

Hi @Hans
Anne should obviously check with her GP. But my back 'went ' 2 weeks ago, (have tablets from GP and physio booked ).Yes the pain is horrid, sitting and lying down is awful, but walking is great....as long as I don't mind walking ALL day.
I put it down to the fact that my tummy muscles are non existent so my back is having to do all the work.
But I also saw my surgeon this morning (getting my money's worth from NHS) and he simply agreed that it was a no-win situation!
Hope Anne feels better soon...she has my greatest sympathy!

DianeS

Sorry to hear that Anne is in pain @Hans. I have been to yoga this morning and we are concentrating on the hip area, and I'm now aware of just how many aches and pains I have in my body. Chemo weakens muscles and therefore other areas are under stress. Has she managed to get an appointment to see her GP? :x::x:

Hans

@DianeS @Lizalou thank you for kind help. Been to gp also phoned onc hotline - but little joy. If it's muscles - and it seems to be -- then we plan to massage and give her exercises -- she is a very impatient patient!! So best for me to try my beat. I think she will be fine - but it is jolly painful for her. Thank you again.
Hans :x::x::x:

Lady GT

Dear @Hans , I am so sorry to hear that Anne is in so much pain.
Any pain, or deviation from the 'norm' is frightening when you are on chemo and it is natural that we automatically jump to the worst case scenario.
But, you have seen your GP and talked to the onc hotline. @Lizalou and @DianeS have given you their experiences.
So it seems that this probably IS muscular and not a sacrum met, a la Olivia Newton John.
It's so easy to fear the worst, isn't it?
If Anne's team thought it was anything worse, they would have called her in for more scans, surely?

I think your plan of massage and exercise sounds just the ticket! How lucky she is to have you watching out for her!
It's not easy for you or her, I understand that. But you certainly are NOT a pain in her bottom, even though it feels like it to you, at times. She appreciates you more than she probably tells you.
You are her rock. Carry on, carrying on!
What did the docs say about continuing her tablets? (I think you said she was going to stop taking them?)

And I hope you are finding time to spend in your garden, and that your German homework marks are as good as you want.

:x:

Hans

@Lady GT well we are back on the meds again. She missed one tablet = I think panic over and common sense rules again. THank you for your comments - a bit of friendship is s o important. Today in the rain we will walk and make sense of it. The various doctors were not very concerned and all thought she had pulled a muscle. Poor Anne!
Thank you again
Hans
I am happy with my homework at present actually = the process of learning a language has always eluded me = but now I can see the way.

Daffodil

Dear @Hans - only just catching up with this thread. So glad you have got over the worst and have had advice from people on here and your medical team. I have great trust in osteopaths, and GPs can make referrals to them now. If the pain persists perhaps you could ask to see an osteopath? Also, as @Lizalou said, core strength exercises might help in the long term. David was given these by the hospice physio because he was having leg and back pain. He does a few minutes exercise a day and we think it has helped. On a good day he can now walk a mile.

Love to Anne, hope things improve. Remember to take an umbrella today!

Warmest hugs, :x::x::x:

Hans

Hi @Daffodil @Lady GT @DianeS @Lizalou
Ah. Anne and I have just returned from 1 1/2 hour walk - she is still very sore but the walking has helped and its less intense. She also find that a massage is helping. So panic over... thank you ladies - I was worried. I suppose hearing about Olivia Newton John - poor lady = didn't help. So its a sprained muscle in the you-know-where or in German in der Po ! Hans :x::x::x::x:

Lady GT

Well, this is good to read @Hans . I should imagine that a sprain in der Po is very painful!
Hopefully this will now gradually subside with your regimen of walking and massage. Being out in the fresh air is good for sorting your head out as well, isn't it?

Keep up the excellent work. :x:

MaggieMae

Good news Hans - hope the progress continues. :x::x:

Charlotte Nurse Advisor

Dear @Hans,

Apologies for the delay in responding to your post but you have had excellent advice from the other forum members - thank you all.
I have nothing specifically to add to what others have said and I am pleased to here that Anne is doing better now.

With kind regards,

Charlotte

Hans

@Charlotte Nurse Advisor @MaggieMae @Lizalou @DianeS @Lady GT @Daffodil Well, we had a jolly busy day in the Supermarket yesterday!! The patient 's Po is now about 40% better. We really didn't know that Capecetabine softens the muscles - and by jumping of the trampoline - one muscle got damaged. The massages have helped and the experience has highlighted a need for her to tone her upper body - so she is also doing stretches and other exercises. So, panic over!! She plans to see the remaining cycles of Cap. out!!
She was definite she had the same as Olivia Newton John. It made me panic and become a bag of nerves = but my ladies at work sorted me out.! I bought them a bag of sweets (if you value yr figure - never work in a supermarket!!)
Thank you all again Hans :x::x::x::x::x::x:

Alwyn

Pleased to hear that things are getting better @Hans. I can certainly understand your wife's fear every ache or pain i get i think it's another met. Onwards and Upwards :x::x::x: