Hi, I’ve only just registered and was wondering whether anyone has been in the dilemma of whether to go on Xeloda or Letrozole. Also does anyone work full time whilst on Xeloda.
Thankyou for any information
Hi and welcome to the forum. Sorry you have to join us on the secondaries part but you will find us a friendly and informative, and of course, supportive bunch. A bit mad at times as well!
I know everyone may have a different view but in my opinion I would go for the letrozole first as hormone treatments are generally kinder in terms of side effects and, as long as your secondary is very highly hormone positive, you should respond well. I had nearly 5 years of stability on anastrozole, a similar treatment, and it was only when my BC changed receptor status that I had to change to Xeloda. Also, each chemo treatment you have tends to have a reduced response (I’m quoting this from an oncologist) so it would be better to hang onto the big guns until you need them! You should get regular scans on any treatment so within 3-4 months of being on letrozole you should know if and how well it is working. Having said all this I can’t really say how you will respond to either treatment and also you may want the security of hitting the secondary a bit harder by having Xeloda. As to working whilst on either I found it a bit tough to get settled on Xeloda when I started it and had to give up the job I had recently started but that was more down to the nature of the job and if I had been in my previous job it would have been fine. The new job meant I couldn’t just call in sick if I felt unwell, I had to be in on the days I said I would be as other people depended on me being in when I said.
Hopefully you will get some other opinions as well but ultimately it will be down to you, or your onc team and it’s always tough when they ask you, the patient, to decide what treatment to have!
You don’t say where your mets are but most, if not all, of us mets ladies tend to hang out or post on the Bone Mets thread in the Living with SBC part so feel free to join in there. Also there is a very active thread about Xeloda with quite a few ladies having just started on this chemo, so you can find out a lot from reading that.
Good luck and please come back with any other questions or just for support, it’s what we’re here for.
Nicky x
Hiya Deedeepuss
I have been on Letrozole for 3 months now and yes there are side effects but its mind over matter as it obviously does work acording to the ladies on this board - some of which have been taking it for ages. Dont know anything about the Xeloda as havent tried that.
I think it all depends on the type of cancer - if you have the Her + type you get the newer treatments like Herceptin but mine isnt that sort and so its a bit more limiting.
I take my tiny little Letrozole every day and hope that it does what is says on the tin !!
I hope you get a lot more replies from other ladies that have more knowledge than me and maybe some more guldance as to the best option but to be honest you have to trust your Oncologist who would have the experience to put the very best plan in action.
Carolyn xxxxxxxx
Yes, I have worked full time whilst on Xeloda (Capecitabine). It is quite doable for most people. The worst side effects I had were the peeling feet - you do need to look after your hands and feet whilst on it or you will be hobbling!
Letrozole didn’t work for me and the side effects made me feel ancient. Wish it had, because it just involved one tablet per day and it does work for many!
Hi thankyou all for your responses. I was diagnosed with BC in 2005, had lumpectomy and lymph node removal. Followed by chemo ECMF, then radiotherapy. In 2012 it returned in my spine, T8, so had radiotherapy again. Then 2013 liver and lung, which was treated with Docetaxol. I got through 8 cycles and wad worse for wear, ending up with a pleural effusion. I wasn’t too good! Then 2014 the spine deteriorated and L4/5 affected. I had Tamoxifen for 5 yrs, then stopped. When it started in my spine I went onto Bonefos, calcichew and back on Tamoxifen. This was then followed by arimidex/anastrazole. Since last Feb I’ve been on Denosumab injections and exemestane.
My CT showed in Dec that it has returned to my liver, still less than 1cm. I’ve had my grumpy head on because my oncologist has suggested Letrozole or Xeloda, but wants more bloods and another CT. He said the number 1 choice is Xeloda but up to me. I’ve asked if I can start the Letrozole because between December and my apt early March I would be at least half way to knowing if its working, they said I would know by about 3 mths. My 15.3 CA marker has been going up by 10 a month. So I’m pretty stressed now waiting for my CT which I have on Weds, and then bloods, only to be told in March both have got worse, so best option is still gonna be Xeloda! Has anyone had a CT or CA blood marker go down without changing medication? So I feel like they are dangling a carrot with the Letrozole. Why give me a choice and stress me out for 3 mths, when they will tell me Xeloda is still preferred option but my choice?
I work in an educational environment with accommodation, so have a lot of students on site, so my concern is the low immune system primarily. Oncologist and nurse have said people on Xeloda can work but probably not full time, which is another concern.
So that’s me in a nutshell!
Thankyou all x
Hi .deedeepuss. Xeloda worked really well on my bone Mets and peritoneal Mets .disappeared…had a few tired days and few mouth infections etc.but used to go out loads.even went abroad with hosp agreements.no hair loss…so it will be your decision when you know your side effects…after xeloda had letrozole and now got liver Mets too…halfway through tacotere.hating it waiting on results.take care.xx…
Hi Scratch, thanks, hope you get the results you’re hoping for.
Take care
Hi Nicky, thankyou for your reply. Unfortunately it takes 2 wks to get the CT, so cant bring the appointment forward. My bloods aren’t being done until 29th as that’s when I get them done for my denosumab injection on 1st March. I’ve phoned hospital to check that they will have my 15.3 BC marker for my oncologist apt on 3rd, but could only leave a message. They left a message on my home phone today to say it takes 2 wks to get marker result! So tomorrow I’m going to keep trying until I get someone to speak to to see if I can get a blood form and get my bloods done now, so I can keep my apt on 3rd and get both bloods and CT result at the same time, otherwise they will move my apt to mid March which is ridiculous. Saw a counsellor tonight at the hospice to help talk things through. I really need to get ct and bloods done at the same time, because last time they were about 3 wks apart and didn’t really reflect each other. How are you? X
Hiya deedeepuss…phew what a nightmare at a time everything needs to be in place and organised.
Hugs xx carolyn
Hi Elily
It was so reassuring to read your post thankyou. I’ve always worked very hard, and want to keep going for as long as I can, which I’m sure you understand. It gives me great hope to know it is possible to have some normality amongst this crazy world in which we have been placed. I know we are all individuals and each treatment behaves differently to each of us, but it does give me strength to know how you are coping.
I haven’t been offered the portacath, but is something I will investigate.
Keep well
Denise x