Still reeling from widespread liver and bone mets diagnoses

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Hi Nicky
Thanks for responding. I had been using the Udderley cream and also taking vitamin B6 which had been prescribed but perhaps naively stopped the B6 during the week off. Anyway reassured that it’s normal but just a bit surprised that it’s happened so quickly. Still trying to work my way round the various threads and where to post etc.

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Hi Julesie, I often had heel cracks rather than blisters but just posting to say if you ever do have heel cracks I found the plasters with silver in them really helpful. The cracks repair quite quickly. I would think you’re on a normal to perhaps a slightly high ish dose of Cap for your weight but I’m no expert. The dose can be tweeked by your Onc if he thinks it helpful and the chemo is still just as effective. Hope those blisters heal soon.

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Hi Julesie,

Not sure my experience helps you much but wanted to post to say you’ve got responses from some very experienced hands here. I wish you well with treatment.

I was diagnosed with secondaries from the start, end Nov 12. Chemo (taxotere) + Herceptin have achieved clear CT scans on secondaries - inc multiple liver mets, largest size of tangerine - and 70% reduction in breast tumour.

So, I have one random (possibly naive) idea… what if you were treated aggressively with chemo again, targeting the liver mets? I know it’s counter to the usual approach, but I’m hearing that you’re basically well. If nothing else, it might be an interesting challenge to give your onc to hear the response.

Sarah.x

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Julsie…I have been on capecitabine for approx 18months…I have had probs with both hands and feet…at the moment hands have been most bothersome and 2 cycles ago I had a cycle off to let my hands settle…they are better but not perfect. I use flexitol at tnight on both hands and feet and use occlusive covers…clingfilm on feet nad plastic gloves on hands. Each day i wake with normal feeling hands and feet although they do get dry quite quickly after…only thing I would say is if you have open blisters you would ned to be careful cos my feet get boggy under the clingfilm which may increase risk of infection if you have broken skin. best wishes Pamx

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Hi Belinda. Thanks for the advice re heel cracks. Will definitely try the plasters if I get those. I think the plan is to reduce the dose after my week off but I’m just a bit concerned that the blisters happened so quickly.

Thanks Sarah - I asked my oncologist about chemo saturation to try to treat the liver aggressively. She said that with the bone mets it would just reseed into the liver so her recommendation was to try Capecitabine first and then if that works to look at SIRT or some other specific liver treatment. I had Taxotere with cyclophosphamide when I was first diagnosed with my primary so that wouldn’t be an option again, although I know there are other taxanes which I’ve not had. Great to hear that you’ve had such success so far with your liver mets. Long may it continue!

Hi Pam. Good to hear that Capecitabine is working for you, although not so good that you are getting problems with your hands and feet. I’ve managed to keep my blisters in tact and have been using cotton socks to try to keep cool. I haven’t had any dryness as yet but I guess that will come!

One other question, does anyone know how long it takes for tumour markers to reduce? Should they start to reduce immediately after the first cycle or does it take a while to have any impact?

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Hi. Please may I ask a question? What is SIRT? I too have ( stable) bone mets so was told surgery was not an option…My tumour markers have never really moved much, from 25 at my initial diagnosis. And because it’s so low and doesn’t change much my Onc doesn’t hold too much by them.xxxxxx

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Hi Horsie
SIRT stands for Selective Internal Radiation Therapy and is a treatment that is used for liver tumours which is a radiation treatment used when there are too many tumours to remove by surgery or radio frequency ablation. I’ve posted a link below:- http://www.sirtex.com/us/clinicians/about-sirt/ Sorry no good for bone mets! Xx

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Thanks, I will print it all out and take it to my next Onc visit. I have tumours in my liver, so this would be fab , if it works, and my insurance would pay for it. Although it does look like Germany is the nearest centre. Hugs to you all.xxxx

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Hi Horsie
i know it’s done at The Hammersmith and Kings Hospitals in London and I think there are a few places regionally like Guildford and Leicester so perhaps worth googling to see if there are others too. Xx

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thanks.xxxx

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Hi just thought I’d give a quick update on what is (fingers crossed!) a bit of good news. I had the results of my blood tests today after completing two courses of Capecitabine and my liver function tests were all back in the normal range and my tumour markers had halved from last month. In terms of side effects, the feet are still suffering with peeling but since the dose reduction, I haven’t suffered any gastric problems. Obviously it’s very early days and I don’t want to get too excited but I’m hopeful that I can join some of the ladies here for whom Capecitabine works really well.

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Cautious great news. Take care.
Deborah. x

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Hi Julesie, that’s very good to hear and after just 2 cycles. I hope you get a long time with the peach pills. x

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Thanks Deborah and Belinda.

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Hi Julesie, My tumour markers halved too after first few counrses of CAP. They continued to reduce and reduce after that but not quite so much after that but still a good decrease. I hope your feet improve. I had that as well and it was so bad it was like walking on broken glass. Remember to keep your feet cool and NOT to rub in the cream too much as this bursts the cappilleries in the veins and causes the pain I was tod. I used to slather on the cream at night and wear soft cotton socks overnight to allow the cream to soak in. I am not on CAP now but have been on and off it for years. I hope it continues to work for you too. Val

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Hi Val
Thank you so much for the tips. I’ve been following your posts on the bone mets thread and I know how experienced you are having gone through so much yourself. I was really hoping that I was going to emulate you and be a long term bone mets only person but sadly that was not to be. Still at least I can be thankful that the Cap is having some positive effects at the moment and hope that it will continue to do it’s job. Good luck with your latest treatment and take care.

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Hi Julesie, Yes I have had bone mets for over 14 years now and am not planning on leaving the planet just yet…not if I can help it that is! Life is so precious and every day is a bonus so I do not feel at all depressed just lucky that I am still here and have a decent quality of life…I know this could change at any minute so try to take one day at a time. Hugs, Val

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Didn’t want to post in inspiring news as it’s too early to get too excited but just had blood results from third cycle of Capecitabine and my tumour markers have reduced again. :-)) They are still outside the normal level but CA15-3 is now down to 60 and all the liver function tests are still normal. Obviously will know more post scan which oncologist is suggesting once markers have stabilised. I guess like everyone I find the tests soooo stressful and am like a bear with a sore head for a couple of days before appointments so if anyone has any coping techniques they would be very gratefully received! In terms of side effects, the only problem I’m getting at the moment is with my feet but I’m religiously following everyone’s tips (thank you!) and at the moment the problems are manageable.