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Faslodex / Xeloda / Ribociclib with Letrozole
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Hi@tilly45
i was diagnosed about one month ago
I had breast cancer in 2011
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Hi gjf
i just wanted to ask you how you are going with the ribociclib and letrozole
what side effects are you experiencing and have you experienced hair thinning
I was diagnosed one month ago and into my second week of taking the ribociclib and letrozole
I am experiencing fatigue and a few aches and already my hair has changed
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Hi @FYONA1,
its really very early days yet in terms of your diagnosis,and I am sure you have been bombarded with lots of information!,
myself I am coming up to my 5 year anniversary, and am currently on about my 4th line of treatment, so I do not fit the criteria for ribociclib/letrozole,however I have done a lot of research into it and its certainly is the way to go, in terms of advice, just take one day at a time and breathe! easy to say hard to do, if you are concerned about your hair please go to your hairdresser and have a chat with her, I go to my hairdresser every fortnight to have my hair washed and dried, mainly because I cannot do it myself due to side effects of the chemotherapy I am on at present, your hairdresser should be able to advise you and encourage you with how to look after your hair, my hair too has thinned on chemo and changes quite frequently depending on how I am feeling at the time , I still have foils every 8 weeks, however she uses a special colour with no ammonia and it only goes on my hair not my scalp, most hairdressers these days are familiar with the side effects of chemo and if she/he is an experienced hairdresser they will be able to understand and be better prepared to help you.
In terms of aches and pains, I was on femara/letrozole for about 15 months and can empathize with you about the aches and pains, first thing in the morning was the worst!! I walked like a penguin until I got moving, have you access to a hydrotherapy pool, it really is a lovely way to do very gentle exercise, panadol osteo is very good for aches and pains as well, fatigue is probably the worst symptom especially if you have been used to a busy lifestyle, however you really must listen to your body and do not! feel guilty about resting, I have days when I simply find that all I can do is lay on my bed,but those days pass,please accept any help offered by family and friends,there has to be some perks to this shitty disease, you have looked after your family and now its time for them to look after you, when you vist with your oncologist, if possible always take someone with you, you wont remember everything, YOU can do this, we are all here to help with any queries or questions if you want to have a rant then go for it, we have all done it, the cancer nurses here at bcna are always here to chat and offer any advice,we are all on this wagon train together regardless of where we are in our treatment and we all do our best to help one another in what ever way wee can!!
wendy553 -
ps, forgot to mention I have mets to my spine and liver and am currently on xeloda,blame it on chemo brain,{weell thats my excuse and I am sticking to it!}
wendy0 -
Hi wendy55
thankyou so very much for taking the time to explain everything to me I really appreciate your time and effort
yes I will go and talk to my hairdresser as I really don't want to lose too much of my hair I realize that our health at this time is more important but I also don't feel confident having no hair I don't like the thought of wearing a wig at all and I also don't like hats
is your hair obvious to others or just to yourself and your hairdresser
i feel very negative as I said and I often think of when my journey will end I can't get these thoughts out of my head0 -
Hi @Tilly45 -so sorry to hear this. How about calling the network support line and having a chat to one of the nurses who have a wealth of knowledge. So much to take in -try and take it a step at a time and keep connected here -we have all been through this and I can say there are rough days but each day can and is different. All the best0
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Hi Fyona1
Re hair thinning, my manager who used to be a nurse commented that she’d noticed my hair thinning over the past 6 months. I hadn’t. I’ve still got most of my hair with a few barely ‘haired’ patches. My hairdresser cut it with scissors, she didn’t buzz cut it, very short all over. Many people, who don’t know my diagnosis think I’ve deliberately had it cut like that, and say how much they like it.
I don’t know whether this will be helpful to you Fyona but I have found seeing a psychologist very helpful, if you’re not doing that already. You will be eligible for up to 10 Medicare subsidised sessions per annum with a GP referral. I felt quite distressed for about a month about my losing hair and now feel quite OK about it. Much, much less self-conscious.
Encouragement and care from my family, friends, metastatic support group and my psychologist have all made a huge contribution towards that change.
I wish the same for you.1 -
Hi JuMuKu
im understanding from your comment that you've lost most of your hair? How long have you been taking ribociclib?
ive decided that once I reach the stage of hair thinning that I'm not happy with I'm stopping
I've already discussed this with my oncologist
i have been introduced to another lady that has been taking ribociclib/ letrozole for nearly 12 months now and her hair still looks great
have you lost most of your hair and is that why you have had a short haircut
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Hi Kattykit
thankyou for letting me know about your hair
i know that my health is more important and my hair isn't but unfortunately I don't want to lose any of it this time round
how long have you been on this combo and r u using any special shampoo or treatment
also have you changed your diet since your diagnosis0 -
Hi@FYONA1, I have been on it for 5 months now, no special diet just good food and the odd treat and I just use a good shampoo and conditioner. Everyone is different though, it's all a lottery, I have my hair but am neutropenic and get QT prolongation every 2 weeks so I usually have 2 weeks on and 2 off instead of 3 on and 1 off. Good luck with everything, give it a good go, you can't be as unlucky as me, I am in the 7 percent that get the shit side effects, although having said that I don't feel as crappy as you would expect.0
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Hi Kattykit
where have you got your mets
my have spread to my spine t11
i am really really worried about all the side effects I was diagnosed oboist one month ago after almost seven years
itsdevasting I was told that I was in remission then two weeks later I had back pain and was told that's my cancer had recurred
im not sure that the side effects won't hit me as most women that I've spoken to have lost alt of their hair if not all of it and the side effects change each cycle have you found that with yourself0 -
I have mets in my right femur, I have had a pin inserted the whole length of my thigh, I also have them in both hips lungs uterus, scapula, skull and pancreas. This returned after 4 yrs on tamoxifen. It seems to be working, my last scan said some had reduced and others were stable., but as I said we are all different. I am just glad that I can still have my grandson over and feel able to cope with an active 3yr old on my own.1
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Hi Kattykit
sorry for asking u this but do you ever have negative thoughts about your life and how long we have to live I can't seem to get this thought out of my head I have read so many stories about three years five years and I'm very scared0
