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Still reeling from widespread liver and bone mets diagnoses

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Re: Still reeling from widespread liver and bone mets diagnoses

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.
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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

Thanks Deborah and Belinda.
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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

Cautious great news. Take care.
Deborah. x
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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

thanks.xxxx

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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

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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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Julesie
Yes this is common side effect of Capectabine and can affect the hands as well, as has been said. I When this does happen it is common to be given a week off from the chemo to help the skin heal. As Belinda has already said, and you have been using the Udderly cream, you do need to moisturise the help the feet and hands although I know it affects some people more than others. There is a main thread somewhere on here (which may have been mentioned already), probably in the secondaries section, called 'Capecitabine - your top tips please' which gives a lot of info about the side effects of this chemo and what has helped others to deal with them.
Nicky

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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Wasn't really sure whether to post here or in another section but I just wanted to know if anyone on Capecitabine had experienced anything similar. I completed one course and was due to start the second yesterday but I developed several blisters on my feet so my oncologist has recommended a week's break to let them heal and will then probably also reduce the dose. Has anyone else had a similar situation so soon? I was on 1650 twice a day and am around 8 stone 12 so not sure if this is a high or normal dose.
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Belinda
Thanks for your response. It's great to hear that you got over 4 and a half years from Capecitabine and I hope whatever you are on now will work equally as well or better. I was given some of the Udderley cream so will use that together with the Vitamin B6 in the hope that it keeps the hand and foot syndrome at bay. I must admit i've been really touched by how supportive everyone is on the forum and it's good to know that we don't have to suffer this dreadful disease alone.
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Julesie, reading your story and how much you went through with your belts and braces approach I'm so sorry you find yourself here. I am meeting the lady who had 8 years of success with capecitabine next month, we have met several times. I had just over 4 and a half years with Capecitabine and luckily I found it quite doable. I was kept on the tablets until they finally stopped working.
I didn't have any hand side effects but my feet could, at times, be a problem but Udderly cream and Eurecin cream from Boots really helped. I have been living with bone mets for ten years and have a couple of soft tissue mets in random places. I wish you well on this chemo. Belinda.
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Pam
Thanks for sharing your story. Capecitabine does seem to work well for a lot of ladies and it's really encouraging that you've been on it for 17 months with very little side effects for a long time. How strange that your markers went down when you had a cycle off I wonder if that is normal? My oncologist has also prescribed vitamin b6 to take alongside Cap which, hopefully, will help with the hands and feet.
Horsie - apologies for the strange angry face. It was supposed to be brackets round an 's'
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Horsie - Thanks for the sound advice and it is encouraging to hear that you are still doing well years after diagnoses. Was your liver met(s) picked up by blood tests or do you have regular scans? The NGPDT that Finty talks about is really interesting but i'm not sure whether it would be appropriate in my case with more widespread disease. I'm certainly going to try to carry on enjoying life and definitely think it's time for another sounding board even if it's just to give my poor husband a break! Thanks again. I really appreciate your response. Xx
ps as I'm new to all of this, I'm not sure whether it appropriate to ask you questions in my response or whether I should PM you


Hi Sue - great to hear that you've had success with capecitabine and that there is a Xeloda Queen who has been stable for 8 years - that's so encouraging to hear. I'm not sure how quickly side effects kick in but at least I haven't had any nausea today but then again it is only day one! Thanks so much for responding. Xx
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Julsie...so sorry to hear your news.....I thught i would tell you my story! Initial diagnosis grade and stage 2 2005...no nodes. treated with WLE, chemo and radiotherapy. In Dec 2010 sudden onset back pain whilst exercising which improved but never disappeared. Feb 2011 MRI showed collapsed T4, CT clear. emergency radiotherapy , zometa and exsemestane. Gradual progression and in Feb 2012 started capecitabine. Since then have been stable on capecitabine and am now on cycle 23. For a long time I had virtually nothing in the way of side effects but since nov I have had gradually oincreasing probs with sore hands and feet. .........At the end of the last cycle I had a cycle off....during which markers went down! Anyway feet recovered completely and hands were a lot better so restarted 2 weeks ago.....hands are dry butstill a lot better than before the break..although I suppose will deteriorate as I have future cycles....im thinking i may need a cycle off occassionally but for now am hoping it will continue to work......other have been on it longer but 17 months feels good!....hope you have similar sucess. Pamx

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Re: Still reeling from widespread liver and bone mets diagnoses

Hi
Im on Capecitabine for the second time and it's working really well (scan results god)
Sometimes the dose needs to be adjusted so don't get disheartened if you get bad side effects on your first dose.
I think the record for time of Cape is 8 years for our friend the Xeloda Queen and it kept her liver mets at bay, I know 8 years is unusual but 3/4 years happens quite often.
Remember the people who it works forwe're off enjoying their lifes and don't post on the Internet and everyone responds differently so it's a case of giving it a try.
Side effects are very doable on Cape
Good luck
Sue xx

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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Hunny, another liver and bone mets girl here. There are quite a few of us, but we are alive today to tell the tale because we are taking treatment to stabilise the tumours. Sadly they won't shrink or stabilise in the box! I am glad to hear that you have started to take the Cap.
I was on it for 3 cycles, it's easy to take and side effects so few. I religiously smothered my hands and feet in cream. I didn't get any dryness but whether that was because I used the cream, who knows! My hair grew back on Cap and felt very well. No sickness... I have 3 small children so life just has to carry on for me anyway..
The number of tumours in your liver, or the size of them, will not give anyone a guide to life expectancy. It's all to do with how well your liver functions. Most livers will work very well when cut in half ( for a transplant for example) and regenerates itself well. Your Liver Function tests and Bilarubin levels are the only way to see how your liver is coping. There are a few of us who are doing well and carrying on with our lives years down the line for diagnosis. Our livers are coping well with active treatment ( whether it be chemo or hormone therapy) Finty had mentioned a new regime which has everyone talking about at the mo, but..it's in China and expensive, but if it works-by golly it'll be worth the try!
Our lives are for living, carry on playing golf and do what ever takes your fancy! What treatment you take is up to you, and I hope Cap works well for you, but perhaps telling a close friend may help you. The strain is a lot for just you and hubby to bear..a close pal whom you could trust for you to just chat to would really help.

Good Luck, ang big hugs to you...xxx

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Re: Still reeling from widespread liver and bone mets diagnoses

Thanks Tammy. All good so far but guess it's a bit too early for side effects to appear. Must be feeling ok as even thinking of taking the dog for a walk!!
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Re: Still reeling from widespread liver and bone mets diagnoses

Thanks Tammy. All good so far but guess it's a bit too early for side effects to appear. Must be feeling ok as even thinking of taking the dog for a walk!!
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Re: Still reeling from widespread liver and bone mets diagnoses

Julesie, good luck, I know you've just 'popped the pills', and that must be very scary. My thoughts really are with you. xxxxxx
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Re: Still reeling from widespread liver and bone mets diagnoses

Thanks for your response Mrs Blue. Think that would be a good name for me at the moment because I'm certainly feeling very blue! I've read my PET/CT report and the liver disease showed up as widespread on the PET scan though it was described as occult on the CT scan. Were your doctors able to tell you how extensive your liver mets were? Somehow 'multiple' seems so much more positive than 'widespread'! I was holding on to the hope that people can live for many years with just bone mets and, as I'd been generally so well and active, really thought the letrozole and Zometa were working. Until a couple of months ago all my blood tests results had been completely normal so I can't quite believe how quickly things have progressed. I asked the inevitable question 'how long have I got?' and my onc reckoned on about 6 months if I did nothing (or I suppose if the treatment doesn't work!) It's great to hear from people like you who have had success with Capecitabine and you did really well to go for 3 years before you progressed to liver mets. Anyway I've taken the plunge and popped the pills and am hoping the side effects are kind and that the treatment works.
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Julesie, so sorry to hear of your diagnosis. We try and support each other on this site.
I was devastated when I had dx of multiple bone mets (in 2006, 3 weeks after primary dx). I'll always remember my bcn (trained in primary support only) saying that the bone is not a vital organ in the way that the liver is, and that people can live with bone mets, sometimes for many years. Now I have multiple liver mets too, dx in 2009. I had a very good 2 years with stability on capecitabine, and much reduced tumour markers, though some other treatments didn't work for me, and I'm now on a newer chemo. So there is life even after a diagnosis such as ours.
Regarding photodynamic therapy and other treatments now being discussed, I myself do not have the option to seek this out.
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Finty. Coincidentally I've just been reading your thread on it and went through to the website itself. It sounds amazing if you fit the criteria. My only concern is that I also have bone mets and there was something concern about the treatment causing spinal compression. Could you PM me so that perhaps we could have an offline chat? Thanks.
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Re: Still reeling from widespread liver and bone mets diagnoses

Julesie - I took the decision not to start capacetibine after my liver met dx, and instead had an innovative treatment called whole body photodynamic therapy. I made a long post about it a couple days ago explaining what it is and how it works- " The future of cancer treatment - no more chemo and rads?"

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Re: Still reeling from widespread liver and bone mets diagnoses

Thanks Gail. It's great to hear that you've had some stability with Capecitabine. the trouble with me is that I'm an avid googler and I've read lots of less than positive articles on liver mets and how chemo doesn't really work that well on them, hence the tablets are still in the box at the moment!
Hugs received Emma thanks!
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Re: Still reeling from widespread liver and bone mets diagnoses

Hi Julesie. Sorry I can't answer your specific concerns but didn't just want to read and run. You have been through so much since your initial dx and I don't blame you for wanting some 'normality' with your friends and family. I'm sending you big hugs and hope that whatever you decide you can carry on doing the things you love. Take care and God bless. Emma xx
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Re: Still reeling from widespread liver and bone mets diagnoses

Julesie, I'm sorry you've had such a horrendous experience and I'm not surprised you're having your doubts about chemo. I've been on Capecitabine and had 6 months stability with breast tumours and skin mets. The hand foot syndrome is manageable in most cases and is usually built up gradually. Get good creams in and keep hands and feet well moisturised. There is a good thread in the secondaries treatment section with more advice. It is great having a tablet chemo too and you should keep your hair with it. Some ladies have been on this one for years so hope it gives you great results.

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Still reeling from widespread liver and bone mets diagnoses

Had the results of a PET/CT scan last week and was given the shattering news that I've got widespread liver and bone mets.
My story so far is that in March 2008 I was diagnosed with a 3.2cm ER+, PR- HER2- tumour. I had a mastectomy and immediate DIEP flap reconstruction. The breast surgeon did not get clear margins and I was told by the plastic surgeon that I would need radiotherapy. As there was no lymph node involvement, I struggled to decide whether to do chemotherapy but decided to take the belt and braces approach and did four cycles of Taxotere and Cyclophosphamide which was followed by tamoxifen.
I was then ready to commence radiotherapy but the breast surgeon said she would re-excise the margins of the skin and, if clear, I would not need radiotherapy. At the time I remember being a little uncomfortable but took her advice and, as the margins were clear, didn't have radiotherapy. Apparently the risk of getting a recurrence in a reconstruction is less than 5% so initially I was not too worried when I felt a lump in the reconstruction thinking it was just fibrous tissue. I was also lulled into a false sense of security by the fact when going for my 6 monthly check ups, the surgeon never checked the reconstruction.
In December 2010, I went back to the surgeon as I thought the lump had got bigger and sure enough the cancer was back. Having lost complete confidence in the surgeon, I had the operation done by an excellent surgeon recommended by my oncologist. At the time I had PET/CT scans done which were clear, although a small lytic lesion was picked up on the CT scan in the L4 vertebrae.
After the operation again I decided to adopt the belt and braces approach and did 6 FEC. When that finished in September 2011, I was due to have my portacath removed but wanted to have a scan first just to know that everything was ok. We then got the unexpected (and devastating!) news that the previous benign lytic lesion was now malignant.
This was successfully treated with cyber knife and since November 2011 I've been on Letrozole and monthly Zometa infusions. I chose not to have follow up scans as I wanted to try to get some normality back into our lives and was perhaps lulled into another false sense of security because I generally felt very well (still worked part-time, skied, played golf etc). I've also been seeing an integrative doctor and have been taking various vitamins and supplements including IP6 and reishi.
Over the last couple of months my tumour markers started to rise a little so I arranged a scan (and then bottled out at the last minute) Last month my liver function tests were abnormal so there was no alternative but to have a scan which is when we got the news about the widespread liver mets and bone progression. Since the diagnoses, I've generally been feeling not that wonderful. I'm still playing golf and eating normally but am definitely more tired and seem to get temperature fluctuations.
The oncologist has changed my Zometa to Denosumab and I had the first injection on Thursday and she has also prescribed Capecitabine which I've been looking (but not taking!) since Friday. I really don't want to do more chemo as, to date, it hasn't worked for me and the side effects just seem to be pretty horrendous with the hand foot syndrome.
I really like to know if anyone else has a similar story and has been diagnosed with such widespread disease and if Capecitabine has worked.
Sorry to ramble on all about me but I've been lurking on the site for a few years and have seen the massive support that everyone gives to one another here. My husband is wonderfully supportive but it's such a strain for him. I haven't wanted to tell anyone of my secondary diagnoses because I've been well and I just wanted to have a bit of that wonderful pre-cancer normality back with friends and family who were unaware of the extent of my disease.