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Faslodex / Xeloda / Ribociclib with Letrozole
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shus
Member Posts: 10 ✭
Hi All
Tomorrow my oncologist wants to talk about a new drug as others not working, she has pretty much given me 2 options
Faslodex (non PBS)
Or
Xeloda (which I believe is a chemo drug)
There is also talk of drugs called ribociclib with Letrozole
I just like to hear your stories/ experiences with these drugs.
Many thanks 
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Comments
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Hi @shus,
there is quite a lot of information on here about all three of the drugs you have mentioned, your oncologist is the best person to sit down and have the discussion with, all three drugs are different all with different side effects, myself, I am on xeloda, I have mets to my spine and liver, I have been taking xeloda for the last two years, this is really a decision that you and your oncologist will make together, try and get as much information as you can about all three and see what happens tomorrow,
please let us know how you are going .
wendy552 -
Hi @shus - I think @wendy55 is absolutely right about getting a full discussion with your oncologist - we all react somewhat differently to each drug. I am on Xeloda since January this year. I have found it much easier to tolerate that previous IV chemo I had. The main concern is getting the dose right and the break - it is a flexible drug regime so I like others started on 500mg 14 days on 3 tablets morning and night and 7 days off. Doctors adjust depending on your need. However after 3 cycles hand and foot syndrome kicked in - very painful red hands and feet - there is a whole thread on this on this forum - just type in Xeloda side effects. I am now about to start 7 days on and 14 days without pills to see if the feet and hands will be better. Like all chemo drugs there are good and bad days and after about 5-7 days I get very fatigued and have some gut problems - again everyone is different. However since I have been on this drug I can do much more and have been travelling and able to be out in the world a lot more. I am retired but I couldn't have done any of these things on previous drugs and my scan results have shown good response on my liver and bone mets. All the best with your discussions2
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Thank you so much Moira
I just wish they'd invent a drug with no side effects0 -
Me too! Don't we all ?2
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Hello Shus
Sorry to hear that your current treatment is not working.
I wonder whether the impact of hormone (endocrine) therapy is somewhat dependent on where the patient is in her hormonal life, pre or post-menopause.
Im in the later groip. Ive been on both Letrozole and Ribociclib for the past 12 months and have had very side effects. And, in the past month I have started to experience pattern alopecia which I understand can be a side effect for a minority of users.
In the end, it feels like a small price to pay.
Good luck!
JmK1 -
Hi @FYONA1
I am definitely finding A lot more hair comes out when I wash it and blow dry but it doesn't seem noticeable at all. My hair dresser says it's okay and not thinner. I am using a really good shampoo and do a treatment each week. I try not to comb it too much when it's wet as this seems to make it worse. Overall I don't think it looks different. I don't seem to need to shave under my arms any more and leg hair is not grow back as much after I shave. Overall I'm pretty pleased.0 -
Hi@tilly45
thankyou for letting me know
I've just been diagnosed with stage 4 mets to my spine and I'm just starting this combo treatment and I've read really frightening stories on other forums
thankyou for letting me know about hair thinning as ths is one side effect that I don't like I'm very conscious of my hair0 -
So sorry to hear about your diagnosis @FYONA1 The ribociclib seems to working really well for me and I have only heard positive things about it, although I am only just starting to find people on it as it has been so inaccessible for most. I would really like to hear how it goes for you. I was diagnosed with stage 4 last July and started on ribociclib around December, just after that I had my ovaries out. I'm 45 and all of this has been really challenging. I am so glad to be on this treatment now. Thinking of you. xx0
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Hi @Tilly45
this is only my second week on the ribociclib/ letrozole
feeling ok other than being tired and a few aches and pains
also my hair is starting to already change
my thoughts are all over the place at the moment it's really hard to get my head around this whole diagnosis I'm struggling but very negative thoughts and I'm not sure how to stay positive right now1
