I’ve been on Xeloda for 4 cycles but unfortunately, has some small progression so my Oncologist is now changing my meds to Zoladex/Arimidex from Monday.
I had no problems at all with Xeloda, even at the highest does so I’m hoping I cope well with this too.
Is anyone else on this treatment? I’d like to know what I can expect, other that the hot flushes - thank you all.
Wendy
Yep, I am. I have bone mets. Originally had EC chemo x 4 then paclitaxel and gemcitabine chemo x 4 prior to surgery. That was almost 4 yrs ago. I then went on to tamoxifen after surgery and rads but came off that after about 8 months and was put on arimidex but have to have the zoladex to make my body think it is post-menopausal. I also have zometa for the bones. Not had any more chemo since first lot as my mets are reasonably stable. Think this is quite a ‘popular’ drug combo.
Side effect-wise, the hot flushes are still awful and the zoladex has changed my character completely - I can be such an irritable cow and really quick tempered. Not me at all. Have resorted in the end to prozac to ease the hot flushes a little bit and make me a much calmer person!
Liz
Hi Wendy, I’m sorry to hear you are changing treatment…I had Arimidex with Prostap (it works like Zoladex but has a finer needle…long story…but I was diagnosed with bc and had clot to the lung…was put onto Warfarin for 6 months and as Prostap has the finer needle there was less bruising)…I had many years of this combo and at first had the usual Arimidex aches and stiffness but it was ok and stiffness could be walked off.
Also just to let you know I had small progression on Xeloda last Autumn (I was still pre-meno and had my periods return, think this caused the progression) but all is stable for now. I’m still on Xeloda and my tumour markers have come back to their usual low numbers so maybe Xeloda can still be useful to you in the future? Good Luck with the new combo.xx
Thank you for posting and for the good wishes.
Belinda, it’s interesting what you say about periods, because mine came back with a vengeance!
I’ve never had any tumour markers done, I really don’t know why. It’s never even been mentioned - is it done for most people?
Liz, argh! that sounds like me now! Perhaps I’ll go the other way and become nice and calm? lol. My husband reckons he’s moving out once the menopause kicks in!
Thank you for the advice on Prozac. I’m wondering if I might need to go down that route anyway. I’m feeling pretty low right now, to be expected I suppose, but I’m not sure if I’m heading into a depression.
I want to get to see my GP soon, it usually takes a couple of weeks to see this particular GP, she’s very much in demand, so I’ll discuss this with her then.
Thank you again for replying. It’s such a lonely journey sometimes, not sure how I’d go cope without this forum.
Wendy
xxx
No problem Wendy! I call prozac my chill pill…so does my OH when I go a bit bad tempered. Why not come on the secondary live chat on a Tues evening - there are a few of us on there around a similar age and who have been living with various mets through various treatments. The other girls have been very supportive and we have a laugh too.
Liz x
Thanks Liz, that sounds like a good idea.
I’ve made some great friends through the website locally, although I’m the only one who has gone on to develop secondaries. It would be great to talk to others with the same/similar issues going on.
What time is it and what do I have to do? I’m a live chat virgin!
Wendy
xxx
Hi wubby,
Secondary live chat takes place each Tuesday evening between 9.30 p.m. and 10.30 p.m. Just follow the link below to log on and join in. I hope you find it helpful.
breastcancercare.org.uk/community/live-chat/
Jo, Facilitator
Hi again Wendy, I have the CEA and the CA15-3 markers taken every 3 weeks. This link might be helpful? labtestsonline.org.uk/
Not all mets patients have markers taken and they can be unreliable in some but mine have always been pretty accurate. My CA15-3 markers went up by 6 points one cycle and my small progression was discovered after I was then offered a CT. I find having markers taken reassuring as, for me, they show how well a treatment is working and so far I’ve had everything contained pretty quickly…well as much as that’s possible.
I found my progression as hard to take on board as my initial stage 4 diagnosis. It’s no wonder, to me, that you feel in a dark place right now. It took me a few weeks to get back on track. I don’t take anti-d’s but can see a time when perhaps I might find them very helpful.
Good Luck…I hope you’ll feel things are brighter once your new combo is up and running…and I hope it works really well for you. xx
PS…I was a bit wobbly, moody, weepy when my periods returned but, thank goodness, they’ve stopped again and I feel a lot more peaceful, calmer. x
Hi,
I’m on exactly the same medication with Liz. And could have easily written exactly the same post as her first (apart from the surgery bit)!!
My tumour marker has gone up a bit as well after nearly 9 months without chemo:-( Having my scan results on Wed. So having the “usual” low between scan and scan results.
xx
Thank you for the positive comments, I’ve had a few tears this morning for some reason.
Just about ready to head off to get the Zoladex (doesn’t sound like a card filing system?) I’ll let you know how I’m getting on.
Wendy
xxx
Well today has been very odd.
In hindsight, I realise I had no idea what to expect today, it really wasn’t explained to me at all on Friday.
I turned up expecting to get a jab then off home. They wanted bloods, so I had to wait around for the results.
Then I learn that the Onc I saw on Friday (my 3rd in a year!) has left - shame he didn’t bother to tell me that. He also went off without properly filling out my treatment paperwork, so no-one actually knew exactly what I was there for.
So my file is sent up to another Onc, who I’ve never met, to try to make sense of what I’m having, so they can order the drugs from Pharmacy.
Eventually, this monster needle turns up and, as were chatting, the nurse mentions it’s just once a month. I remind her that the Onc said the first treatment was 3 needles over 2 weeks, then once a month thereafter. More confusion, more checking, but no, it’s definitely one needle, once a month. I gave in and just had it, I’d been there 5 hours by this point.
I’ve left without a single scrap of paper on side effects or anything and an appointment to go back and see a new Onc in a months time!
Got back and I’d forgotten my darn keys to top it all off. What a day!
Wendy
xxx
What a nightmare day Wendy - it really doesn’t inspire you with confidence at all and I’m not surprised you are looking for a second opinion. I was referred from oncology to my GP practice for the zoladex which I have monthly (there is a 3 monthly version with an even bigger needle - aarrgggh!!). They also prescribed Emla anaesthetic cream to apply an hour before so you don’t feel a thing!! I have my next one tomorrow. I have never heard of anyone on here having 3 needles over 2 weeks…You can get info sheets on here and other ‘cancer’ sites that give the details about all the different drugs so have a play around.
I have the zoladex to shut my ovaries down as although the chemo stopped them and periods have never returned, I was 100% ER & PR+ so very, very hormonal cancer-wise. They did a blood test to check I wasn’t post menopausal before I had the zoladex/arimidex combo.
Fingers crossed things go smoothly for you now and the next onc is more with it.
Liz