Hi, I’m due to meet with my oncologist soon to discuss changing to this treatment as Herceptin has stopped working for me. Is there anyone else out there on this treatment? If so, can you give me any tips on coping it? Also, any suggestions for things I need to ask my oncologist when I see him?
I had been taking quite a few supplements. Is anyone else taking supplements with their treatment, and if so which ones? Has your oncologist given the go ahead for you to do this?
Also, have you continued working? I took the time off during my previous Taxol chemo, but as Xeloda seems to be something you take indefinitely I don’t know what to do about work. Think maybe I should try and claim DLA. Sorry for all the questions - racked with uncertainty at the moment!
Hi Chris
Have sent you a pm
Hello Chris23, I am not on both your drugs but I am taking Capecitabine right now. It is not always taken indefinately. I have taken it for six months with a break after for 18months, then again for about six months and a break for 2 and an half years, and am now on round five of this regime but I have been told that I may remain on this indefinately now. This is to be reviewed after after number 6 and a scan. I am on a reduced dose of Capecitabine this time. The first time I took it I suffered badly from sore hands and feet and so they reduced the dose that I was taking. This does not happen to everyone but it is wise to take care of your feet and hands. Many of us use Udderly Smooth cream which we bought on- line but the hosptal also supply creams for free. If you want to ask any other questions as you go along feel free to send me a private message or on here.
I have claimed and receive DLA. I took early retirement and wasn’t sure if I would be entitled to it. Your McMillan nurse or BCN should be able to help you with the large claim form. If you have a Maggie Centre near you they may be able to help too. This benefit, which is not means tested, has made a huge difference to my life and took the worry of paying the mortgage and paying bills. Have you applied for a Disabled Blue Badge. Invaluable especially if you are going through treatment. It gets you straight to the door in supermarkets and makes shopping less exhausting. Wishing you all the best in your new treatment plan.If I can help in any way feel free to ask. Val
Hi Chris23
I was on this combination from Sept11 to Feb12 and I’m on just on the lapatinib. Most of the side effects I got were from the Xeloda (these side effects seem to be different for everyone and there is loads of info on this site about them).
I retired from work and receive DLA, I got help from the McMillan benefits advisor and I was awarded it under DS1500 special rules.
I didn’t take any supplements when I was on the chemo so I would check with your onc.
These drugs were very successful for me and I hope they are for you.
I didn’t ask but maybe I would now ask how many people my onc has on lapatinib and how successful it.
Love Sue
Love
Sue
Hello everyone who replied to my post. Just wanted to update you on my situation. I am cycle 2 of Cap/Lapatinib. Not too bad so far. Had mild nausea lasting through to lunchtime first cycle and just the one urgent loo trip! Slept quite well, though seemed to have insomnia when just on the Lapatinib. This cycle I have been feeling nauseous all day long. Get tired after any exertion, not much energy. And yesterday got three purple blotches on the bottom of my feet! Oh dear! Other than that, finding it all quite manageable so far and definitely tons better than IV chemo. My cancer symptoms have been fading away so I am hoping that it is working - will find out when I have my scan in August.
My GP very kindly filled in the DS1500 form and I am now receiving DLA and am seriously considering retiring early on grounds of ill health.
So thanks to you all for your advice. It was much appreciated, and I hope you will keep in touch.
Love Sarah
x
Hi, I have just been reading through some posts regarding Capecitabine and Lapatinib. I was put on Capecitabine 12 weeks agoand Herceptin and felt ok with very little side effects, thankfully. However the treatment did not work and only stabilised the old tumours but did not stop any new ones growing. I now have to take Lapatinib on top of Capecitabine and starting on Thursday and am a little apprehensive.
I am just praying that the lapatanib does not make me sick as I have a fear of being sick.
Apart from the Udderley smooth cream for the feet can anyone else tell me hiw they cope with the side effects.
Thanks
Karen
Hi Karen
I have put for you below links to two of BCC’s fact sheets and information about lapatinib and hope you find these helpful. Could I also suggest that you give the helpline here a ring, the staff will be only too happy to talk through your concerns with you.
www2.breastcancercare.org.uk/publications/treatment-side-effects/capecitabine-xeloda-bcc121
www2.breastcancercare.org.uk/publications/treatment-side-effects/chemotherapy-breast-cancer-bcc17
breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/targeted-therapy/lapatinib
Take care
Jo, Facilitator
Hi Karen
Just thought I’d let you know that I was taking Flucloxacillian for a couple of infected toes at the same time as my last cycle. Unfortunately, my feet all blistered up from the Capecitabine (unusual but not unheard of, according to my oncologist). He told me not to take the Cap/Lap at all for the next week and a half to let my feet recover, but I carried on feeling sick, so I think this was predominantly caused by the antibiotics (which I was still taking). So hope you are ok. Looking forward to getting back to normal again.
Sarah