Hi Beli
Sorry to butt in here, to private message just type the username of the person you are posting to in the box marked ‘send a private message to’ then type your message as usual and send. It’s case sensitive so ensure you type the username exactly as it appears on the site.
Best wishes
Lucy
Hi Lucy
thank you
Beli x
Hi Beli
Would love to meet up, I wonder if there is anyone else in Herts? I will PM when I get back and we could fix a meet lunch in welwyn a possibility?
Jane I think I would like the Marsden to have an overview , I don’t expect magic wands but I am concerned to have gone in the space of 2 years from someone with a good prognosis to being on my 3rd chemo and gone through several aromatise inhibitors.
I know that with my present oncologist I have access to drugs such as avastin but I think too that I owe it to myself and those close to me to explore all realistic options. I am seeing my oncologist the day after we get back from holiday so will see then
Thanks everyone for the encouraging messages
Kathryn
Just to update ’ I had a great time cycling in France but am now totally exhausted. Also had good news from last blood tests, as my markers have dropped!! My oncologist was planning another scan to see what was happening but has decided to wait. I am so relieved that things seem to be moving in the right direction.
Hope all of you who are still on holiday have a lovelt time
Best Wishes Kathryn
Hi Kathryn
glad to hear your good news long may it last.
Love Debsxxx
That’s great news Kathryn…I get my latest markers this week…hoping for another ‘stable’ although a drop would be even better!
PS…Beli …do we share the same name? Belinda…x
H,
I’m not in Herts but could easily get to Welwyn from my end of the M11/A10? Any more takers?
Jennyx
Thanks everyone, hoping you have good news Belinda, Jenny have you any particular dates in mind, and Beli?
Kathryn
Hi Belinda
Yes we share the same name I also have another friend with the same name and near birthday.
Hi Kathryn
Hope you enjoyed your hols and are recovering. It would be great to meet I am fairly flexible so give me a date thats convenient with you and Jenny I don’t have any children to entertain. There is another lady in St Albans you may be interested in meeting I will get in touch with her.
Beli x
Hi,
I can be fairly flexible (though I do have two children to entertain). Having said that, school hols are now fully booked, so any time after this month would be fine for me. Please don’t be confined by my dates though, but I would love to meet at some point.
Jenny
x
Ah Beli…I guessed we shared the same name!
So pleased I had my markers today and all is still stable. 
Will definitely have 8 cycles and hopefully more. I’ve had no problems and I’m on the highest dose so I hope this continues.
Would have liked to meet up but as Jenny knows I’m too far away…have met Jenny several times though!
Hi
Just to say that I have triple negative breast cancer and although the dose is not correct and it made me really it it has reduced the lump on my chest wall to the point where I can’t feel it and the one on my neck in my lymph nodes. I also know another lady that is on the same trial as I am who has triple negative breast cancer who has been on Xeloda for 8 months so I think again I’m not sure it’s down to the type of cancer you have but the individual person. Apparantly it does only work on 40% of patients.
Diane
xx
Hi Ladies
Just wanted to offer my experience with Xeloda. I have had Xeloda on two separate occasions. Once two years ago which worked well for me but the Onc didn’t want me to continue after 10 cycles as it is a chemo that can be used again. I have now just restarted it following a spread to the liver. I have been started on a 1650 mg twice daily dose, 2 weeks on, 1 week off and so far so good. The advice I would like to offer though is that you ladies suffering with the hand and foot syndrome try a supplement called Alpha Lipoic Acid. I have mentioned this on a number of threads but I don’t know if anyone takes any notice. It really does help. It was recommened to me by an Oncologist. I had terrible hand and foot sydrome with Taxotere 3 years ago and after 4 cycles had to stop this chemo due to such bad side effects. I didn’t know about ALA at this time. When I started Xeloda, I started getting the hand and foot syndrome and was then recommened the ALA and since taking it, it really has made a difference.
Hope this helps.
Spike
Spike
Where do you get ALA is it available at health shops.
Beli x
Thanks Spike
I read your advise on ALA before and have started taking it. Can I ask you what dose you take? Advice on this is very contradictory. I looked at several websites and they all seem to say different. At the moment I am taking two capsules of 250mg daily. I am not sure if it is having any effect, I still have the syndrome, but don’t know if it would be worse if I wasn’t taking it! My view is that it can’t do any harm as it is an anti-oxidant, which is good for you anyway. PS: I haven’t mentionned to oncologist that I am taking it, as when I asked if there was anything I could take ,he said NO! apart from the Pyridoxine (vitamin B6 which I take 50g three times daily.
I buy mine via internet (Agestop and Express chemist) I haven’t seen any for sale in shops, but I haven’t really been in many health food shops, I think Holland and Barrett do stock it? It is classed as a health food supplement and not as a drug, I think.
JOY
Hi Joy
I’ve been taking 2 x 300 mg every morning of the ALA for at least two years. I also get mine from Agestop. None of the Onc’s I’ve seen have suggested anything else. I hope it will help you, as I’ve said I’m sure it works really well for me.
Best wishes.
Spike
Hi,
I have just started this drug, (in fact today is my second day), I am on 2,000 mg twice a day. I am just wondering how long before I may feel any side effects, so far I’m good. Thanks ladies don’t know what I would do with out this forum.
kiwi
Hi Kiwi…hope Xeloda works well for you. I’ve just finished my 6th cycle…the last 4 cycles have been at 2,300 mgs…the first 2 cycles were at a lower dose. I’d recommend you starting to cream your hands and feet before you get any side effects. Marilf and Jennywren, (both long time Xeloda users!) gave me lots of Xeloda advice and I use the Udderley Smooth creams. So far I’ve had no side effects apart from my hands feeling a little dry at times. I did get some redness on my soles of feet when I had a whole day shopping marathon with my daughter but they calmed down the next day. I was given anti nausea pills and Imodium tablets at the hospital should I need them but (so far) I’m okay. It wasn’t until my 4th cycle I noticed any dryness in my hands and feet. I take the tablets approx 10 hours apart and always with food. Sorry I’ve waffled on a bit! I hope to continue on these tablets, as long as they’re effective, for as long as possible…Good Luck…Love Belinda…x
I’m now into my 3rd cycle of Xeloda (also on herceptin & dexamethasone), with no problem side effects so far. I’m on 1800mg twice a day. I already had very dry skin on my hands and feet, and now they just seem to get a bit hotter and redder than before. The doctor gave me Aquadrate cream for badly cracked heels, and I’m still using that every day and it seems to work. Other than that, I use fragrance free hand cream at every opportunity. Otherwise no nausea, no mouth sores, no diarrhoea, no vomiting, no infections other than slightly septic toe nails (but I was getting that before the Xeloda when just on steroids). And the really good news is that the recurrence of inflammatory breast cancer, which the Xeloda was supposed to treat, is now visibly reducing, so it seems to be working.
My only real problem is remembering to take the right pills at the right time of day! Some are 1 a day, some 2, 3, 4, & 5, some I take on an empty stomach, some with food, and some anytime. I’m on 29 pills a day at the moment!
Lots of love, Lynn
Thanks Belinda and Lynn,
Everything is slightly bewildering at the moment, trying to get myself into a good routine where I remember to do everything I’ve got to do. Touch wood I will be like you ladies and have no problems.
kiwi