Thanks, Nina.
Ozzie - that’s the first I heard about going grey in the sun, although my skin went really pale on Cap so maybe there is something in it.
Ann - sorry it’s no longer working for you too. I haven’t been on Taxol but did do Docetaxol one so might be similar. There is another thread on Taxol called Piclataxol Pixies which can probably give you more insight.
Hi Cap ladies
I’m about to join you as have had progression in bones and now a couple of spots in my liver 
Not what I wanted to hear as you will all understand. However I do have great faith in the peachy pills having read over the years how well they can work.
One question though: is anyone having Avastin with Xeloda? My onc wants me to have it and that’s all well and good for the cancer side of me (yes, please, throw everything at it) but not so good for the heart/blood side of me that was casued after FEC chemo 5 years ago. If anyone is on this drug combo can you let me know what extra SE’s you get. As far as I can see on this forum no-one is on it as it is generally added to Taxol and the Pac one (can’t remember or spell all these other chemo names!)
Many thanks
Nicky x
ps - To Nina - I did see your post on my other question, and yes, I wonder if they read up everything about your other health problems or just focus on their cancer bit - which I think is/can be the case
Hi everyone am now on 2nd dose of cap after 3 day break and 10% reduction. still having same probs but now feel completely depressed. Is it the tabs causing it/ I also found out that everything is moving and progressed to my liver which isn’t helping my frame of mind. Now wondering if onc only reduced dose by 10% because of results which she didn’t actually give me. know lots of you have had great results on this but I am not feeling it take care xx
Hi lanii sorry to hear you are feeling low, is there anyone you can talk to? Or get more info from your oncologist about what is happening? Sorry I can’t help any more but I’ve only just started today on this chemo so will be asking more questions than providing answers for.
a quick question for all Xeloda ladies, have you been told by your onc/BCN to avoid certain foods in the same way as IV chemo? I’ve been given the same fact sheet as I was given when on FEC 5 years ago but know that Xeloda isn’t as hard hitting on your wbc as FEC and therefore you are less likely to become neutropenic. . Obviously if my wbc was very low I would be extremely careful but if it remains in the normal range I’m assuming, as long as I don’t eat any raw meat etc I’d be OK? Any advice on this would be helpful.
Nicky x
Quick reply - en route to loo! How’s that for too much info! I was given no food avoids when I started Cap and have eaten as I always did with no mal effects.
Nina
Bump
Lanii with regard to the whether the side effects of the Lapatanib Capecitabine combo is worse than Cap alone. I have been on the Lap/Cap combo for four weeks now and find the SE’s exactly the same as they were when I was on Cap and Herceptin. Over Christmas I had to have an emergency operation and so was temporarily taken off Cap to facillitate healing. All the SE’s I had been experiencing disappeared, so as I was still on Herceptin, I concluded that they were caused by Cap.
Since starting the Lap/Cap combo, the Prof in charge of my treatment has reduced the dosage of Cap, and the SE’s have reduced considerably.
Scotishlass and Bellasmum, you’re both right. Bellasmum is right that the CA 125 tumour marker test is usually given to those with Ovarian Cancer, but Scottishlass is right that it is also sometimes used for breast cancer. The CA125 test detects the Muc 16 protein, which can be expressed by BC.
Having said that I wouldn’t be happy to rely on any tumour marker test on it’s own, as they are notoriously unreliable. False positives are common (as so many other factors can effect results), and progression can be missed as some cancers do not express the proteins being looked for. My Prof only uses these tests in conjunction with scans.
Lemongrove, Welcome back.Great to see you posting but sorry to hear you had to have an emergency operation.
I finished Capecitabone before Xmas and have been on WEEKLY Taxol for 10 weeks now. I have one more before I have my tumour markers done, another chuemo, then on Friday my Consultant will be checking to see if the Taxol has been workiong and if not where we go from here. Had a one dose off radiotherapy session on Tuesday to try to help with the ongoing pain I have been suffering from for months and months in my left arm and hand. On Sunday I had to be admitted to have 2 more units of blood as HB low. I only had 2 units 3 or 4 weeks before this. I have been attending the dental hospital too to keep an eye on a piece of expoded bone in my mouth. They are not giving me any treatment but I am greatful that they are keeping an eye on things.
The worst bit with the side effects is great tiredness and I do not come ont he site very ofren because I am so exhaused. My nose often bleeds because I have no internal noew follicles so have started to use vaseline up my nostrils which helps with the problem.Also have a problem with bleeding re piles!
Yesterday I found some renewed energy and really enjoyed the fact that I could do things I really enjoyed and I even cooked a new recipe for a chicken curry for my husband as he was out walking with his pals and made a change for him NOT to have to make a meal for us. There was enough for us to have a bit for lunch today which tasted even better the next day.
I do nto feel down or depresed which amazes me. I just get frustrated when I have to keep going off to bed to sleep and rest. Never a day goes by without an early bedtime or a long afternoon siesta. But I have just had to come to terms that this it the way it is for the moment and will get there in the end. Planning a holiday when this is all over as I really need a break. Too much has happened in the last 18 months for anyone to cope with as I had 2 operations to my femur including a complete hip replacement. Please give me a break fro all this for the summer…Love to you all. Hope this answers your question Ann. Love Val
Nicky - I didn’t pick up on this one until I’d been on Cap for a few months but was eventually told to avoid grapefruit juice at the same time as I took the pills as it could interfere with it being absorbed, although my onc reckoned from looking at my hands that it probably hadn’t caused a problem. I’m not aware of any other food/drink issues.
Lemongrove - sorry you had to have the emergency op. Hope you’ve recovered and good you’re experiencing less SEs.
Val - hope the Taxol is working for you, the rads give you some pain relief and the blood transfusions is kicking in. If Dr B is still thinking of Vinorelbine next I’ve been feeling good on it so far, although too early to tell if it’s working.
Thanks lemongrove I had no side effects when just on herceptin, this combo Is not good am going to ask for another reduction. This is the first time I have felt so down. I have cried at gps and changed mamillan nurse, Icry a lot but maybe pick up[ soon. sorry you had to have op hope you’re ok now.
Scottish Lass How are you so upbeat, the tireness alone is enough to make you cry. Well done I hope you feel a bit better soon. xx
Thank you Gail and Scottishlass for your knid words. Things have not been too good over the past few months, and I’m just pleased to still be around to be able to post.
Just before Christmas, the seroma that I have had for the last three years since my MX, became infected after yet another aspiration at the Princess Royal. Anyway, amazingly they sent an ambulance from Sevenoaks in Kent, all the way out to Sussex, which then took me up to Charing Cross Hospital. Unfortunately once in hospital the infected seroma ruptured, leaving an enormous puss filled hole in my chest. Because all the tissue had dissolved they told me it would never heal on it’s own, and that plastic surgery was the only option.
In addition to this, because I had passed out at home, they did an MRI of my head, and discovered that I have 5 brain mets - so repair of the seroma became an emergency, because it’s not possible to have chemo if you have an open wound. Consequently, having gone in with an infected seroma, I suddenly found I had serious progression and required emergency surgery (so off I went to theatre, where they performed a trans flap op (muscle from the back was posted into the hole).
Unfortunately, when I went to theatre, the anaesthetist couldn’t find a vein, so put the anaesthetic through my portacath. That was fine, accept that it seemed to then block my port, and so they had to then take me to theatre for a second operation to replace the port. The problem then was that as they couldn’t find a vein to put a general anaesthetic in, and my port was faulty, I had to have the replacement done by local. Thankfully I was so drugged up and delirious from the infection, I wasn’t really too aware of things.
Anyway, after 3 weeks in hospital with continuous IV antibiotics, 2 operations, and 5 blood transfusions, I’m home and feeling fine (thank you Charing Cross you’re fantastic). My wonderful Prof, has now got funding approval for Lapatanib for the brain mets (as it’s one of the few drugs that can cross the blood brain barrier), and I’ve been on this with Capecitabine for four weeks now. They are also doing MRI’s every few weeks to check what’s happening with the brain mets, and if the Lap/Cap combo hasn’t stabilised things, or shrunk them, they are going to do stereotactic rads. Initially they were going to do whole brain RT, because they thought it was in the dura as well (membrane), biut it isn’t, so stereotactic is the way to go, because it spares healthy tissue and so can be given at a potentially curative dose.
So like Scottishlass, I hope I can now have a break from all this. Better still, I hope God see’s fit to heal me and all of those who are suffering from this cruel disease.
Lemon grove , I am so pleased that you are ok. I hope you get better soon, you are in my thoughts , Louise xxx
Lemongrove - that sounds like you had a really horrendous time of it. Just as well you were so out of it at the time. Hope the stereotactic rads does the trick, sounds like a good idea to spare the healthy tissue from treatment.
Really sorry you’ve had such an awful time Lemongrove but I’m gladf to hear you’re feeling better. Long may it last! take care everyone x
Hi
Have any of you long term (or short term) Capecitabine ladies suffered much with nausea? I had a really bad reaction to the anti nausea tablets I was given with my first cycle so had to stop taking them. Due to a pre existing heart problem (thank you FEC!) a lot of them aren’t suitable for me so I’m wondering how any of you cope if nausea is a problem. My onc did say that nausea should not generally be a problem with this type of chemo so I’m also aware it could be all in my mind (again, thank you FEC!)
Grateful for any help
Nicky x
Dear Lemonogrove,
What a difficult time you had. But also what a fighter you are!!! well done girl. And aslso well done to all your doctors/ nurses etc who look after you.
Dear Nicky,
I am on Capecitebine since August 2012. No problem with nausea. Sorry I can’t give you any advice. Explore all the options with anti sicness medications. Speak with your Oncologist again.Best of luck
Valia
x
Hi Nicky
Have not suffered with nausea on the cape although had a few stomach cramps to contend with! Sorry not much help - do you have a bcn that could give you some advice?
My problem is the hands and feet. Am smothering on the udderley, flexitol and aqueous cream and wearing cotton socks but it’s the itching that’s driving me nuts- could scratch the soles of my feet and palms constantly. They are very red and quite ‘lined’ but the skin has not split. Already taking pyridoxine tablets as presc by onc. My query is - does anybody know if I can take antihistamine tablets to help with itching? If not, any advice to combat this problem would be much appreciated. Thanks.
Liz x
I have similar probs with hands and feet and am having an extra week off this cycle. I use clingfilm with flexitol underneath and socks on on my feet at night…and flexitol with vinyl/plastic disposable gloves on at night…I used cotton gloves the other night and woke with sore, stiff fingers so I know plastic gloves make my hands feel much better by the morning. Pamx
Dear Xelloda girls,
Any of you experience numbness/ tickling sensation in the mouth??? A very strange symptom I developed the last 2 weeks…
Valia