I’ve picked up on the post about Cap not being that helpful for bone mets, because I’m pretty sure it’s not helping mine. I’m on day six of cycle two now, and the pain ifrom a met in my L5 vertebrae is getting worse (hurts quite a bit to get up, or when I turn over in bed, or swing a leg round to get out of bed). But in all honesty I don’t think my Onc is that bothered about my bone mets, I think the reason he has given me Cap is because I have a met in the mediastinum (the area surrounding the lung). Funnily enough I do think it’s working on the mediastinum met, because I was beginning to experience a tickly sensation on inhaling, which has now gone (fingers crossed). I suspect they give Cap to people when the person has experienced progression while taking endoccrine therapy. Maybe they think that if C is on the move, they need to prevent/delay progression to more vital areas (could be wrong, but that seems likely).
Anyway, it’s day six of my second cycle, and I think I’ve cracked the terrible heartburn problem. I now take an Omeprazole one hour before I take Cap (morning and evening), rather than after, and that helps a lot. Other than that, the only SE’s so far are tiredness, a feeling of having gritty eyes, and constant runny nose.
Anyway, hope all are well. Would be nice to know if Marilf has got her kidney problem sorted out, and is back on Cap yet. also where has Belinda got to?
Hi everybody , how are you all ? i just have finished cycle 4 of cap appt on Monday with oncologist. I have joined curves and working out everyday , I seem to have developed a bit of an aching hip since exercising which I haven’t done for a while but if I ease off the exercise the ache eases off , I had a scan in July dis I am hoping if I had any back problems it would of showup up. I am going on holiday to Australia in 2 weeks as my dad lives there and thinking about back to work in dec / jan, I would love to know how you are all doing xxx
I have just done some research and it appears that chemo can, and does, work for bone mets, depending on how well you respond to the drug, obviously. It doesn’t repair the bone but presumably the bisphonates help with that, although it can take a few years for this to happen.
Thank you Ann - thats cheered me a little. I’d been thinking along the lines of LG that it might delay spread elsewhere, it’s just I get so black sometimes - I suffer badly with clinical depression and have done for years, and while most of the time the pills and my mental ‘training’ hold me together, sometimes the ‘old’ me gets out and I struggle.
Can I ask - where did you find this? and please don’t say 'google search!!
Nina
Onc has said no to B6 as she thinks there is no evidence of benefits and could interact with the chemo so will avoid it just now.
Hope it does work for bone mets. I don’t (so far as I know) have any but seems to affect most of you.
Pinkylou - I expect the ache is just due to exercise if you’ve not done any for a while. I get a niggle in my hip now and then but it responds to stretches so I don’t think it’s significant and in any case I had it long before BC diagnosis.
I’m on cycle 12 of capcitabine ie 36 weeks. Only bone mets at present. MRI scans after cycle 3 and 7 showed no further progression after progressing on exsemestane. Next scan on thursday next. It has done very little to my markers but did stop the rising markers I was geting on hormones. Holding things is the next best thing to improvement. I’ll let you know next scan results! Pamx
Hi pam , hope you are well , do you have bone mets only ? Just wondered as I have lung mets and I hope xeloda works for me as well as for you , take care x
Nina - I found various articles and forum posts but can’t find all the specific ones. Here are a few that I have since found, which are from US sites, I think:-
http://community.breastcancer.org/forum/8/topic/705371
http://www.ehow.com/about\_5194950\_breast-cancer-bone-metastasis-treatment.html
Gail - There seem to have been several trials for Pyridoxine with Xeloda, which show both that it does/doesn’t help. However, it appears that the NHS recommend it, as I have found several NHS Trusts that publish this information:-
http://www.swshcn.nhs.uk/pdf/pdf05/folder05/PDF410.tmp.pdf
I also found this on the MacMillan website:-
Perhaps you may want to show your oncologist. My heels are definitely better since taking it, although I have just started getting a tingling in my left hand. Watch this space!
Ann x
Pam - will keep my fingers crossed for your scan.
Ann - will mention your evidence to onc at next appt. It makes sense to me if it means you don’t need a dose reduction. Could be different protocols apply here in Scotland. If she thought it was harmless I would just take the chance even if I couldn’t get it on prescription but she’s not keen on any supplements.
Gail - It doesn’t help us to make decisions when even the oncologists cannot agree, does it?
hi pinkylou,
i am not triple negative, bit i am on capecitabine, and tykerb, has i am her2 with ibc and i have lung mets dx in feb, and i am on my 2nd cycle now, so far no side affects. apart from fatigue.
Hi all - jus checking in again! Counting down til Thurs am when I can see back of cycle 2 and have a rest week!! In truth, touch wood, the reduction in dose seems to be helping fatigue wise - I’m back to my old standard 10 - 12 hours, which while it’s not great, it’s copeable. I’m having to accept I can’t do things I want to - I’m trying to rejig th ekitchen storage a bit, and it seems like its going to be a 20 stage exercise done in several small stages - I’ve done stages 1 - 6 this pm, but my back is crying enough and I’m actually listening!!
I wish oncs could be consistent! You’d think with something comparitively ‘minor’ like a food supplement, there’d be no arguments but sorry you’re getting different advice Ann - you have enuf to worry about without being pulled 2 ways. I remember similar arguments about the cold cap and whether it negated some of the effects of chemo. Must admit I went with it and am glad I did and would do so again if I ahvea chemo which it might work with.
I did some googling re bone mets and Cap too, trying to avoid US sites but not always suceeding - I relied on google to filter them and it did some but not all. One of the sites I found proabably gives the source of eth ‘cap doesn’t work for bones’ brigade - I think it said 15 -20% of women it works for - I just hope the boney ladies among us are in that group.
Nina
Nina
It is not me who is having the problem over Vit B6, but Gail. My onc prescribed it as soon as I told her I had sore heels - and they are ok now.
Incidenatally, you gave the impression from your earlier post that your onc said that any chemo wasn’t effective for bone mets, not just Xeloda, which was what I found particularly depressing. I do hope she is wrong!
I hope your rest week goes well. Strangely, I find that my gastric symptoms are worse during that week.
Ann x
Morning everyone. Am feeling quite distressed reading comments about chemo not working for bone mets. I was diagnosed with extensive bone mets thru all of spine, ribs and pelvis in June 2011. Arimidex then Exemestane failed to halt rising tumour markers so my Oncologist at the time prescribed Ibandronic acid and said basically that was all she could do as chemo was ineffective for bone mets. I had a second opinion at the Marsden then changed Oncologist at my local hospital, and have now had 14 cycles of Capecitabine. My tumour markers have come down to normal levels but CT and bone scans both show further bone progression. Onc is not sure what is going on. Have appt tomorrow for results of latest CT scan 3 weeks ago, Onc said he might change me to my last option - Epirubilin. But what’s the point of putting up with the side effects of chemo ( even if Capecitabine is a more doable one, still doesn’t make me feel great). Should I say no more chemo thanks and see what happens, only that would feel like I’m giving up. I hate this disease. No pills available for fear, uncertainty, and general p…ed - off! Best wishes to everyone - still keep visiting this site, hoping it will improve …
Hi happy feet , I know lots of people that have been on chemo for bone mets and it has worked. I understand there are alot of treatments available. They will find one for you. Let me know how you get on.
Louise
Thanks Louise x
Happyfeet - I wish you good luck with your scan results. I can’t imagine they waste resources on chemo for bone mets if it never works.
Incidentally, how did you obtain the Marsden appt? Do you live near? I was wondering whether to ask for a second opinion if it gets to the stage that they say there are no more options.
Happy feet - I think you should ‘challenge’ your onc - when the hormones failed me the onc said she had a choice of next step between Cap (which she chose cos she used it more often) or ven / nav … not sure of name but it’s oral and I know Dawnhc and Scottishlass on the bone mets thread will both know what I mean - they’ve had it. I think from my digging that the problem with chemo and bone mets is they are not AS effective as they can be for tissue tumours, which is why some oncs like mine and yours are disparaging about them, not realising the effect they have on the patient.
I fear I’m going to be in your shoes next month, with Cap failing me and no hormones available. But I think I’ll be offered the other oral chemo - wish I could remember its name - and assuming it’s going to be as bearable as Cap - not great but doable - I’ll try that. If / when it comes to being told that’s it, nothing we can do, I’ll push for a biopsy to see if I’m one of the 10 - 15% who change to HER+ like LemonGrove before I concede they are right.
Sorry Ann - I get easy confused!
Nina
Nina, I think the chemo you are thinking about is vinorelbine, also known as navelbine - I was on it for 18 mths and I didn’t know I was on chemo. Hope it works for you.
Louisex
Thanks for your comments guys. Nina, I challenge my oncologist frequently! He treats me as if I’m a bit of a nuisance for asking, but as a nurse I want to know the ins and outs of everything. My feeling is that my present hospital in the East Midlands does not do much for us Secondaries ladies, I feel written off and uncared for. Ann, I just asked my GP to refer me for a second opinion at the Marsden, they suggested some treatments but it is too far for me to transfer there. However, I do I intend transferring to another hospital about an hour from where I live. The set up seems very different and they have a secondaries specialist nurse. My present Onc never asks me about pain, or side effects from the Capecitabine, and when I tell him he just says stop the chemo then. He has even told me in the past that there are people worse off than me ( as if I don’t know that) and said to my husband that if “she’s going to be like this” (i.e. upset and challenging) there’s no point in treating her". Hmm, very caring. I have just come back from our local hospice/treatment centre, having had a head massage and they are so caring there, but it makes me so emotional. I HATE being a patient, am so used to being the nurse! Oh well, will see what my latest CT scan shows up tomorrow and take it from there. Have already had Vinorelbine in combo with Capecitabine (don’t understand why my Onc gave me both) but was unwell with it, dropped my neuts, ended up in hospital. Feeling so vulnerable. Love to all you lovely people. Thanks for taking time to reply and support when I know you all have troubles of your own. Xxx