Good to know that others don’t know “everything” about their bodies and treatment - I go into the appt with list of issues to raise and usually run out of steam before getting through it all and asking about how disease is progressing is often something I “chicken out of” - not in denial but just thinking I need to cope and hoping treatments are helping with bone, liver and other mets and giving time to managing the side effects and having some quality time with family. Think if I keep hopeful the will too. Hoping now that the Docetaxol is helping liver mets in particular and am encouraged by comments on this site about all the different liver met treatments - so long as they offer me another treatment then I can feel “ok” about living with SBC. So do please share what treatments you are having - it helps me to feel that I can ask questions at the hospital if I need to. Ok - back to “doing” to avoid brain constantly wondering if liver discomfort is getting less and therefore that the Tax is helping - I seem to be constantly mentally monitoring the discomfort when I’m in a seated position (thankfully not discomfort when standing or sleeping so brain does switch of then…)
Take care all
Fran
Sorry if this seems like a really shallow question, but I can’t find any definate answer anywhere.
I started xeloda last week and was told I could not drink any alcohol whilst on it (at all! ever!), but speaking to someone else at clinic on Friday she said she does have the odd glass of wine (in moderation obviously!) and just wondered what your personal experiences/advice are?
(Also still taking tamoxifen/clodronate/zoladex but alcohol is ok with those!)
To drink or not to drink – there are as many answers to this as there are people taking Xeloda – people I know who have been on it have not stopped drinking the odd glass of wine, and some didn’t stop drinking the very frequent glass of wine. Who knows how that impacted on their lives? BC is such an unpredictable disease . . .
There’s nothing in the patient information about alcohol affecting Xeloda’s effectiveness, or causing increased side effects, etc. BUT there are other considerations – I decided not to drink any alcohol when I was dx with liver & bone mets, as:
* I didn’t want to put any further pressure on my already tumour-ridden and therefore poorly-functioning liver;
* alcohol can be dehydrating – difficult, when Xeloda already gives us side effects resulting from dehydration;
* I wanted to be able to take pain-killers when I need them for bone pain;
* alcohol wasn’t a big part of my life, anyway, so I haven’t missed it much.
I have had the very odd glass of something alcoholic (once or twice a year) over the last seven years since my mets dx, and I’m sure an occasional glass won’t, in the longer term, cause much of a problem, but maybe have a chat with someone (chemo hotline at your hospital, Mac nurse, etc) if you’re worried. Also, you may get the answer after you’ve had your glass of wine, i.e. it may not be so nice, depending on your Xeloda dose.
So many variables, but quality of life is our key focus – see how you go on!
Weird time to post at nearly 4 am but Im often awake at this time.
I haven’t much to tell since my last post…5th Taxol coming up on Friday out of a possible 12. Onc suddenly said we might do more depending on the CT scan. There is very little mention of my bone mets which i have discovered are all around my sacrum (sp) and would account for pain I ignored for quite some time thinking it was just getting old with a large arsesitting on a chair for too long.
What still confuses me are that there are so many different treatments to what appear similar dx. I have liver mets…not happy with how vague they are amount numbers etc but too scared to ask…and the bone mets that they give a dose of alendronic acid every 3 weeks just to top the Taxol up. I seem to be only on Taxol every week…others are on extras…why? Is mine too far gone, typical negative poit of view of mine…will they maybe add more after the 12 week scan…I konw I should ask but Im scared.
Hi sheanay
When I was diagnosed in 2009 I was told that taxol was currently considered the ‘gold standard’ for treating liver mets( and similar are just variations of taxol)
If you haven’t had FEC before then they would probably hold that treatment back so they can use it later.
My onc tells me that they used to throw everything they had at it to try to make it go away. That didn’t work so now they try to treat us with a lighter touch in order to keep the mets under control for as long as possible. With some women it works for many years - let’s hope that all of us on this list are in that group!
They may carry on with the taxol or stop it after 12, it us possible that if they time it right (before the mets become resistant) they might use it again later. I think that the idea is to keep as many options for treatments waiting in the wings as possible.
Re number and size of mets I have lots and lots spread throughout my liver but they seem to respond well to chemo, another lady I know had 3 small mets that didn’t respond so well to taxol but she was able to have cyberknife, I am not sure that number of mets is always relevant, so maybe it doesn’t matter if you don’t ask at the moment - what is more important is which treatment works
Re bone mets, when they were found later I was terribly upset but the lovely nurse explained that anything that controlled the liver mets would also control the bone ones. The liver ones are the ones they really meed to focus on. The alendronic acid should help with bone pain and keep your bones strong to discourage spread as well. My understanding is that they can offer radiotherapy to help with pain if the aondrenic acid doesn’t stop it over the next few weeks.
I am afraid that the whole secondaries thing is more of a long haul on the treatment front. But you do get to know all of your care team at the hospital really well, and I have found them to be lovely (I am sure there are more up sides than that, it’s a bit early in the morning, when I think of more I will let you know!!)
Big hug
Melissax
I had my bone scan today so I am radioactive at the moment I am having treatment next week so will ask then if results have come in. The only slight problem is that I will be having a telephone consultation next week so they may not want to provide results over the phone so may have to wait another 3 weeks.
Having read other posts I think they ought to check my liver again. Its been over a year since the last MRI on it.
Thanks for our comments Mellissa, you have helped me a lot.
I just wish I could keep my worrying under control…also gain an acceptance of what is going on. I know I can’t change things and have to grit my teeth and get on with it but find that so hard.
I hope in time…if I have it, I will come to terms with things.
I am now nearly 4 years from my primary diagnosis and a good 18 months since my secondary diagnosis and I still don’t think I have come to terms with things. Every time I turn up for scan results I think I am prepared for whatever they are going to say, a sort of acceptance of my situation but however positive the results it’s always still been there in my case. I have spread to my liver, lungs, spine and left eye…just awful really.
So, I guess what I am trying to say is that I still can’t quite believe this is happening to me despite being on my third lot of chemo…I must be slightly bonkers! What you are feeling is perfectly normal however I hope there will soon be days when it isn’t your first waking thought.
Just bumping up! How is everyone? Hope it’s all going as well as poss…
I’m just wondering whether any of you lovely ladies who have been on Xeloda could give me some insight? How quickly did it start ‘working’ for you?
I go for a check up/next lot of tablets every 3 weeks, and at each check they do my bloods (inc tumour markers) my tumour markers are still going up at every appointment, and at the minute, are going up more than they did before I started the Xeloda!!! My calcium levels are still really high - so now i have to have some zolendronic acid (not sure if that’s the right word!?!) through a drip every week.
I swear before I started taking all these drugs I never felt so ill or rubbish…
Hope the springlike weather is helping everyone - I so relate to the ups and downs and my mood changes throughout the day - am waiting to start on Xeloda as part of a trial after another bone and CT scan on Friday - so will be interested it you comments on its SEs etc MMG. Xeloda will be my third chemo in a year - had FEC last year June-Aug and it was quite successful but Taxotere was not effective Jan-March this year, in fact I think the Taxotere aggrevated my liver mets as my liver felt like a warzone, glands under my arms were sensitive and head overheated and ached so am glad to come off it after 3 doses when CT scan showed more liver tumour growth but bones etc were no worse (the good news…) - but overall a real let down as I’d hoped the warzone feeling meant it was tackling the problem… Fingers crossed for the Xeloda which I should start soon.
I’ve always been a worrier so it’s no wonder I am now!! Have learnt to do EFT (Emotional Freedom Technique) with finger pressure on acupuncture points on my face/upper body/hands and it really does seem to relax me and take away tension and negative feelings for a while so I’d recommend it - I think you can find details on the web and I bought a book about it after my counselor told me about it. Just tapping on certain pressure points seems to help me to cope some of the time. Does anyone else use EFT?
take care all
Fran
x
Just wanted to say I’m sorry the last chemo didn’t hve the impact you wanted… Keeping everything crossed for you the next one does!!! And I’m wishing you LOTS of good wishes and luck.
I know it’s hard trying to remain calm at certain times… When I’m stressed I have a bath I’m taking about 5 a day, I’m exaggerating, but not a lot!!!
I will look at the technique you suggested sounds good. This may sound ridiculous but in the scale of things probably not but I’m hooked on green tea (tea pigs brand) it’s lovely and seems to have a calming effect on me.
Great to see a new liver AND bone mets group. Well, not great but you all know what I mean. I just thought I’d introduce myself. I was diagnosed with the above secondaries in January 2010. It came as a complete shock (doesn’t it to everyone?) and I wandered around in a kind of fog for months. I’ve had six cycles of Zeloda and am currently on bondronat (I’m doing a ZICE trial), letrazole and zolodex. The good news is that at every scan my liver mets have reduced. They never say much about the bones, although I do think that I get another bone scan when I finish the drug trial. It took me a long time to get my head round my new situation but I’ve certainly come on in leaps and bounds. I’m unrecognisable from the person who sat, in total shock, waiting for her drugs at the hospital pharmacy. As much as possible I try to live a ‘normal’ life and am lucky in the sense that I don’t feel ill. For those of you that have been newly diagnosed, I send you my very best wishes. It’s a bit of a cliche, but things do improve once you have adjusted to the new situation. These forums are great if you have any worries as there are always people who have had similar experiences and are happy to help. I suppose the difference in me now versus diagnosis time is that I now allow myself to look forward; to that end I’m studying with the Open University and have just taken possession of 3 moggies!
Welcome Tawny, (you know what I mean), sorry you have had this recent diagnosis. I am on Bondronate too and have been on this for a year now. I am not keen of the sitting upright bit and not eating for a while but it is better than having to go to the hospital every month for an infusion of another like drug. I have had bone mets for 12 years now. Tomorrow we fly off to France to see my daughter. I haven’t seen her for 6 months so a lot of catching up to do ( spending money!). It is a shock when you first hear the news but you do get your head round it eventually and having a treatment plan in place helps. Hope you continue to do well, love Val
I got the results from bone scan and MRI on torso. The bone mets are much better than they were 2.5 years ago, this was the last time I had a bone scan. The MRI showed one small met on the edge of my liver which the onc said was stable. Not had an MRI scan for 2 years.
He agreed to referal to get an assessment re zapping the liver met. He was intially reluctant but agreed when I said that it moves faster in the liver than in the bones.
I also managed to embarrass myself. I was looking at the MRI pictures on the oncs computer and thought I saw something that looked like a brain so I asked if they had scanned it. The onc replied no we have not scanned your brain if we did we would probably find that you are a bit bonkers. I had mistaken inerds for brain.
