Pinkylou - I don't have mouth problems but use a mouthwash (usually Dentyl) twice a day. If you need something stronger try Corsodyl, I used that on FEC-T to be on the safe side. Your unit might be able to supply you with it or give you a prescription.
Mildred , your post is inspirational , makes me feel I can cope with going back to work you abuds very busy person and some of your comments made me really think .
jon I hope that Kim had a nice birthday.
Gail , I think I am going to go back to work too,
ann and lemon grove I hope you are getting on better.
Does anyone get a sore mouth , not every day but some days I wake up and just after taste. Blood and my mouth is so sore .
Ingrid - Great to hear from you again. I feel exhausted just reading your post. You've certainly been busy. I'm thinking about whether to go back to work on a phased return, but will wait a bit longer as my full sick pay has run out and I should qualify for Income Protection in a few weeks, assuming claim is approved. I think if I go back before this comes into payment I'd have to go through the whole claim process again if I go off work again, but if it comes into payment it should kick back in automatically if I'm off again for BC related illness within a year.
Ann - I'm not NED unfortunately, but currently just have primary BC and skin mets, so CT scan just shows no progression anywhere else so far.
Pinkylou - That's great news on your chest x-ray. As Lemongrove says it makes sense not to take you off Cap for that long just now and hopefully it'll continue to shrink the arm recurrence.
Lemongrove - hoe Cap works for you and shrinks any progression you've had (if that's what is causing the hip pain)
Val - I've replied to your PM
Pinkylou, that's wonderful news, and encouraging for the rest of us. I understand how you feel about the lump in your armpit, but think I agree with your doc, that it doesn't make sense to come off Cap while it's working so well for you. When I had an Op to try and sort out my seroma (yet again), they couldn't start Cap for 6 weeks, and I don't think that has done me any favours. I now have quite a bit of pain in my hip, and suspect I've had progression over that period.
Anyway again congratulations - and long may it continue.
Hi lovelies , I had a chest x ray last night with onc , he said it wbe fantastic , things have shrunk so just very tiny, also arm reoccurence has s shrunk , I start number 4 xeloda today , I must say haand and foot syndrome hor better on well off. I go on holiday to Australia in 4 weeks , I was a bit disappointed about the reoccurence in my arm pit not being removed, but he said at this stage he would have to take me off chemo for 2 months , a month before and a month after fir healing do he would rather not do that at this stage , so down the line we will review , what do you think ladies ? Xxxx
Dear all & especially newbies
I've just completed 4 cycles of capecitabine & was told in clinic today that latest CT & bone scans showed no further progression. So organs all clear & mets in spine, hips, ribs & femur heads are all stable. So I continue as-is on 2000mg/day for 14 days followed by drug free week plus 3-weekly infusion of Zometa until it stops working for me.
It's 9 months since I was diagnosed with secondary bone mets at the age of 48 & 4 years since primary dx
I am now pain free with only the odd twinge when I over do it in garden.
I'm working 6 hrs a day with an hour commute each way on London underground.
I've done a 3 week trip to New York & Canada with a trip to Venice booked for OH's 50th birthday at beginning of November.
My main side effects are tiredness towards end of 14 days plus some acid reflux both of which are manageable.
I'm learning to live with the dx mentally. 9 months ago it felt like I had no future but now I have hope that me & the OH can really start tackling our "bucket list"
I know for many ladies living with secondary breast cancer life is a real challenge every day & they have been a real inspiration for me as I lurk on this forum. So this post is aimed at ladies who are newly diagnosed with bone mets. I've gone from excruciating pain due to a fractured vertebra & a deep depression to feeling that I can live with this bl**dy disease for many years to come. So have hope.
Scottishlass, I wouldn't dream of telling you or anyone else what to do. All I do is say what happened to me, repeat the information given to me by the two Profs at my Hospital, and point others to research about this issue (and hope that it might help someone in a similar situation). The only reason I reminded you that receptors can and do change, is because you said that your tumour markers were rising dramatically. I agree that the most likely explanation for that is that you have been without chemo for two months, but, you have been living with secondary BC for many years, and so it is quite possible (even probable) that your receptors would have changed since you were oiginally diagnosed ( because the receptors can change many times). Also, if it was me, I would be curious about why I had experienced progression in my hip while taking chemo (I'm assuming from the fact that you required surgery on your hip that you had progression while on chemo - but forgive me if that is not the case).
I agree that a bone biopsy would be very unpleasant, but is it possible they sent the tissue from your Op to histology for analysis? Alternatively, do you have any chest nodes that can be biopsied (that's what they did with me, and it didn't hurt at all).
I was Her neg. My original tumour was hormone neg but they tested when I had bone mets and it was now slightly hormone pos. I have been on Femara ( other hormone before that) until started chemo again. Tumour markers rising because stopped chemo for 2 months. They were dropping drastically before I had my hip replacement op. Have I misunderstood or should I be asking my Oncologist more Lemongove? I did have a bone biopsy done around 2000....a very unpleasant experience for me at the time....Wouldn't go through that again unless I was knocked out completely. Val
Gail that's excellent news and very encouraging for the rest of us.
Val, with regard to your tumour markers rising. Just a thought but have your Docs done a biopsy of your mets recently to see if your receptors have changed? The two Profs at Charing X hospital say it's very common, and it happened to me. I have gone from being strongly ER+ and Her 2 -, to weakly ER+ and strongly Her2 + now. It's just that if you have become Her2+ you would need Herceptin, in addition to any other treatment.
Yes my girls were just 6 and 13 when i was first diagnosed with BC and I got bone mets 10 yeras later....that was in 1999. Emma is 30 today and Joanna is 37 now. I never thought I would be around still. I am so grateful and delighted that I saw them grow into the beautiful women they are. Yes I am an OAP now aged 62 and not planning on going anytime soon! This is me back home now. Chemo tablets and nighttime pills to take and the party is now in full swing. I am heading off to bed though and letting the young ones have some space. Have a good weekend girls. Hugs. Val
That is great news Gail. So pleased the CT scans are clear. Good about the skin mets as well. Have a great weekend. I am just nipping ver to join my daughter at her house as it is her 30th birthday today and she is having a few friends over. Hope I can last the pace! and that they can give this old lady a seat! Val
I had a muscle strain in my neck a few weeks ago that made it hard to swallow and the registrar onc gave me instructions to dissolve them in orange juice. Thankfully I ignored his advice as I only needed to get pain meds sorted out for me to be able to take the pills.
With regard to handling Cap. Have just read the green booklet provided by Charing X Hospital (the one that comes with a DVD and is produced by Roche, who manufacture Xeloda). and it say's that unlike other oral chemotherapy drugs, Xeloda is safe to handle. The only thing that peeps should perhaps be aware of is that it should not be taken with orange juice (only water), as orange juice can effect it's absorbtion. I did read the Macmillan blurb which say's cap can be dissolved in orange juice, so Macmillan may have got that wrong.
Hi Chipper - welcome to the Cap club. I think it's OK to have your hair dyed on this chemo. I'm still growing mine from previous FEC-T so haven't tried it yet but hoping to soon if onc is keeping me on this drug longer.
hello - can I join in ? I'm on day 4 of my first cycle (lung mets diagnosed earlier this month) So far so good, but am hopeless at knowing how I feel - but no discernible side effects. My chest aches at the back but that's all. I was wondering whether it'd be ok to have my hair coloured (foils) or not - it'd really cheer me up...my salon uses Aveda which is pretty much plant based/natural, though there are chemicals in it of course.
Nina - yes, tiredness is fairly common. I sometimes feel sleepy during the day but it passes if I rest for a bit and I also have trouble getting out of bed in the morning. I've not been as bad the last couple of weeks so hoping maybe my body is getting more used to taking the pills.
This handling thing is weird!! I'm on day 6 of Cycle 1, so not very far in. I just took the tabs from eth sachet on thursday but then spotted the earlier comments about people being given pill pots and gloves so thought I'd avoid contact and have been 'sucking' the pills from the sachet. I now have the makings of a cold sore in the sucking corner of my mouth (!) so last night and today used a spoon. But I was sure I'd read somewhere it was OK to touch, and sure enuf in the Xeloda info package the onc nurse gave me it says its OK to touch even if wet!!
So maybe my mouth is a coincidence - or maybe not!! Certainly I'm going to continue spoon feeding myself now.
So far so good as regards feet and hands (using Udderley Smooth). some digestive 'looseness' but nothing outrageous - but I'm shattered! Had to resort to afternoon nap yesterday and fighting hard not to do so now! Is this common - not many people mention fatigue and it's not one of the listed side effects.
Gosh i always just pick them up with my fingers too! I wasn't told any different and last night after my first FULL week my finger tips are quite bright red and shiney!
In future i will wear 'spacesuit'... i certainly won't pick them up with my fingers...
I hope you are well today? as much as you can be..
I have tiny medicine cups to pop the pills into from the foil strips and then i just swallow the pills from the cup. Do not leave the pills in your mouth while you fill up a glass of water. Have it all ready because you want to get them out of your mouth ASSP. I was also supplied with, but have not used much, some disposable gloves and this was for any person who was giving me my medicine so that they did not come into contact with the toxic drugs. Dangerous for them too.
I am looking forward....weird to type this....to starting my chemo on Wednesday. We do not WANT to take Xelods but without them I wonder what the cancer is doing. Fancy WANTING to hae chemo! You will all know what I mean by that though. Val
I was also given a little plastic cup to avoid handling directly. I soon lost that! but i took care to take them straight from the foil without handling them and have had no probs with my hands after 10 cyles at 2000mg bd
pinklylou - I hope the pills are working for you. Good luck with your appt.
Nina - Hope you get on well with Xeloda.
Val - Good luck with your CT scan. Such a worrying time. Hopefully, the pills will work well for you again.
Gail - Glad things are better this time. Which cycle are you on?
My right index finger and thumb tips are peeling but that is all so far. I have started picking the pills up with a spoon to see if this makes a difference. I don't feel as sick this time and wonder if that is because I have settled my mind a bit. Too early for another scan, so don't know if it is working.
It is very interesting to know how others are coping, so thanks for your replies.
Ann, this has probably been the easiest cycle for me as acid reflux more under control. Finding it a bit more difficult to do fiddly things with sensitive fingertips and hands look like I'm an old lady, but not too bad otherwise. Think I'm still relatively stable on it. I have CT scans and onc next week.
Pinkylou - hope your appt goes OK.
Nina - hope you do OK on Cap and it works for you.
Val - hope the return to chemo settles the tumour markers. I have no idea what mine are and not sure if I want to ask as would probably scare the crap out of me.
I have been off Capecitabine/Xeloda for 2 months to alow my operated hip replacement to recover. I had been on this regime for 6 months before my op and this was the third time over many years that I have been on these peachy pills. Before my op my Tumpur markers were very high, one was 3000 but after 6 cycles it went down to 179. Had my bloods done last Wednesday and my Oncologist told me that the markers are soaring up again over 2000. So decided to bight the bullet so to speak and am re-starting Capecitabine as well as my bone strengthening infusion of Zolidronate next Tuesday.....and odd as it may seem I cannot wait as I want to stall those buggers! I think Xeloda is a wonderful drug and although I had sore hands and feet at first the reduction in the pills now works better for me. I am on steroids at the moment which have helped my low mood, helped a little with my appitite and take them for this week and next week. Will see how I feel when I reduce them next week. I am also wawiting a CT scan so lots on the go at the moment. Trying to rest today as I overdid it yesterday but it was fun and had a loing chat with my daughter on the phone. She lives in France and it was so good t catch up. Love to all Xeloda ladies. val
Hi Ann et al - I see the chemo nurse tomorrow for cycle 1 to start - and I'm scared!! Well, not scared, very nervous. My nature is such I prepare for the worst, then if it is bad I'm ready, but it deosn't always help me to do so - I've said elsewhere the mind is your worst enemy sometimes!
So watch this space!
Hi Ann , I am on cycle three , 2nd week , I have had 2 chest x rays and things are stable slightly better , I have another appt on oct 1st oct , I have a reoccurrence in my arm it and I can feel that that seems to be getting bigger , but I will find put soon about that , how are you ?
I am on my week off and found it a little easier to eat. I shall see if the problem comes back with the next cycle. I am not sure whether a lot of it is psychological due to the stress of the situation.
Is Omeprazole for nausea and sickness? I have several different ones but not that.
I struggled with appetite initially but am finding it a bit better now. Breakfast is usually the hardest meal to get through for me. I am on Omeprazole which helped a bit, but my chemo ward got me to change the time I take it to last thing at night and first thing in the morning and for some reason this seems to work for me.
Thanks, ladies. I have no appetite but thought it may just be the worry. Nothing seems to have any taste and my stomach seems to close up at mealtimes. Every mouthful is a real effort. Does this continue/get worse? I have just finished the first cycle.
I also asked on the other thread whether you would avoid uncooked foods such as salads, prepared fruit, etc when eating away from home.
Hi Ann the only problem I had on Xeloda is lack of appitite so I found eating out had to like a Chinese meal where i could have as little or as much as I liked ( leaving my other half to scoff the lot!). I also got very tired but I stil got out and about and went on holiday but preferred to stay in the UK when on my chemo. But I do find Xeloda an easier to cope with chemo with less side effects than most. Just listen to your body and rest when it is telling you to! If you want any hlp tips or have further questions just ask. There are other threads ongoing that are to do with capecitabine/Xeloda. Val
Pinkylou, I think you're right, as chemo works on rapidly dividing cells. Having said that I believe the Xeloda Queen has been taking both for many years, and it seems to have worked for her - but then the only reliable thing you can say about cancer is that it's predictably unpredictable.
Val - Hope you're recovering well from your op. Were you on anything else when you had your breaks?
Nina - My onc took me off Tamoxifen before I started on Cap as she didn't think it was working for me but also they don't usually like you to take both at the same time. I thought it made sense to hit it with as much as you could, but apparently they can work against each other so maybe that's where Pinkylou's explanation comes into it. I think they also like to keep the hormonal treatments in reserve to give you a break from chemo.