Hello Daisy1257 and a big welcome to Cancer Chat! 

I am so sorry to hear you have been diagnosed with secondary breast cancer in your liver, lungs and bones. It must have been a real shock to you. I am glad you have found reading posts on this forum helpful and informative. I thought I would share with you our page on secondary breast cancer which I hope you will find useful. I hope that your chemotherapy treatment is going well and that Zoladex and Letrozole work well for you too. 

I hope that you will hear from some of our other members on this forum who have had a similar diagnosis and treatment combination. If you use our search forum function which is located on the blue banner at the top and type in keywords such as 'Zoladex' or 'secondary breast cancer', 'letrozole', you will be able to see other forum threads mentioning these words so don't hesitate to reply to any you feel would be relevant to you. 

Our nurses are also available on this free number 0808 800 4040 so feel free to get in touch with them Monday to Friday from 9am to 5pm if there is any question you would like to ask them or you feel like talking things through with them. 

I will now let some of our other members of the forum who have had the very same diagnosis and treatment combination come and say hello and share their story with you. It does help to talk to others who have been in a similar situation before and I hope that you will be able to connect to others who find themselves in a similar place or who have been through this too in the past.

Wishing you the very best of luck for your treatment. I hope everything goes well for you. Keep us updated if you get a chance! 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi [@Daisy1257]‍,

I was chatting to you on another Chat, but found you here now. I'm just wondering how you are doing since?
Ive started my 3rd cycle of Ribosiclib, my white blood cells were a bit low here and there, but since reducing Ribo to 400mg, it seems better. 
I have had no side effects from Letrozole, started end of March, except for one morning last month, when I had aches ALL OVER!. My Cancer nurse told me take some paracetamol or ibuprofen which worked and I've been fine since, it was just one day.

I had check up 2 weeks ago and oncologist told me my tumour markers had come down. She said it is very positive and a good sign when meds work early in treatment.so she would feel that I have 'many many years'

i know you were diagnosed around same time as me and that you are on same meds... so felt need to connect....

I hope you too are doing well and thriving in this surreal world we find ourselves in?

Best Wishes

Not Quitting

Hello NotQuitting

I am so sorry for the slow reply, I didn't see this message from you the last time I logged in. 

I am doing well thank you, I am still on Ribociclib, letrozole and zxoladex. How are you? Are you still on these meds?

I've had 2 scans so far and both have showed shrinkage in bones and liver. Due another scan end Oct so the nerves are starting to kick in!! How have your scans been?

I'm in a panic at the mo as this month my blood marker ca15-3 has increased by about 30. Its the first increase I've had so it's knocked me a bit. The nurse said not to worry but I am!! I hope the cancer is not spreading.

I'm slowly getting my head around things, I have some sad days but mostly good. I feel well on my treatment so hoping I can stay on it. 

Anyway hope you are doing well and I'm sorry for the delayed reply. I am hoping we can stay in touch. 

X

Daisy

Hi Daisy,

Glad to hear you are doing well. I am still on letrozole and doing well on it. About six weeks ago I got my month's supply from pharmacy  I noticed they were not same brand as I had been using. Shortly after, I had aches all over, especially in the morning. When I asked in pharmacy for my old brand they did not have them/ could not get them. So I have asked now for Famara, which is original, not generic brand. They are much more expensive, but will try them see if they make a difference.i have heard that brands can vary! Watch this space!!!!

I was reduced to 200mg of ribosiclib as my white cells were low. Then oncologist put me off it for a month, and bloods/ hemoglobin returned to normal. So now I'm back on 200mg again. It's trial and error to see what works.

Despite these glitches, I'm doing very well. I had CT and bone scans 3 weeks ago. Both looked very good, lymph nodes were back to normal. My tumour markers are quarter of what they had been. So I'm very happy about that and feel very positive for the future. In a way, i still can't believe that I have stage 4 breast cancer!! Such a bummer! But there is no point in giving it too much head space. Better to keep busy living and focusing on the positives and appreciate the blessings of each day. 

If your nurse said not to worry, she is probably right  as they are very familiar with these things. I'm sure you will have good results. Anyway, as my oncologist said, if/when  these meds stop working, there are many more to switch to. 

Wishing you all the best.

Keep in touch. (It is encouraging to hear of others in same boat doing well.

Regards 

Not Quitting.

Hi NotQuitting

Yes I am on the brand Femara and it seems OK. I am suffering with thinning hair, I think this is the letrozole but it's hard to know. When I brush or wash my hair I lose quite alot. I don't have bald patches or anything but it's definitely thinner!!

I'm glad you are back on the Ribociclib, my white blood cells took a dip in August, I asked the bc nurse if there was anything I could do to help and she said no. I spoke to a nutritionist via Penny Brohn charity and she said to stock up on foods with vit c, vit b12 and also flaxseed oil. I ate these all weekend and by Monday my bloods were alot better. It's hard to know if these did help but I've stayed on them since and bloods are always well above 1.0.

Congratulations on your scan results.  I know what you mean, I feel very close to normal (dare I say it) so can't quite believe I have stage 4 cancer!! Surely that's a good thing for us both!!  I've started exercising and can do most things with the kids which is great. 

I do get the odd wobble but they are less frequent now. 

Are you back at work? 

Yes nurse said that markers do fluctuate but it has worried me to be honest as everything I read says if they increase it generally means treatment has stopped working. That's why I'm dreading my scan.  Oh well the joys of SBC eh. 

Anyway il stop waffling! My little girl is 6 tomorrow so I have some balloons to blow up! 

Hope you have a good week

X

Hi NotQuitting

How are you doing?? Are you still on 200mg ribociclib?

I had my 3td ct scan result yesterday. It was good news everything stable. My markers have increased again but doc said its not enough to worry them. It does worry me though.

Do you have any scans coming up?

Daisy

X

Hi Daisy,

Great news on scans.... I'm quite sure your doctor would tell you if there was issue with markers... so take him/her at his/her word... and don't worry about it. ( easier said than done, of course!)

I am due a scan in a few weeks, but I'm doing ok. I'm still on letrozole (famara). 
my bloods were good last month on Ribo BUT my liver function was not. So I'm off Ribo again for 2 weeks, I have just repeated bloods to check if liver has recovered. Then if liver is ok, oncologist is putting me on palosiclib. ( I think that's the spelling). I am a bit disappointed as Ribo is most recent drug but oncologist says that palosiclib also is a good drug with equally good results. 
My hair has also thinned a bit.... but not an issue yet!  The joys! 
Will keep in touch. It's good to know that I'm not alone and that meds are working for you too.

NotQuitting. X

Hi NotQuitting 

Nice to hear from you. 

Yes your right about the markers, they have caused me alot of stress recently!!

Sorry to hear your liver function was off, hopefully it gets back on track.  Yes Palbociclib is a very good drug and just as effective as ribociclib.

Loads of women on the breast cancer now forum are on it and are getting great results. Some women been stable on it for 2-3years.

Yep my hair has thinned alot too, looks like rats tails if I put a ponytail in!!. I just stick it in a bun now!

Are you working? Do you manage to lead a normal ish life?

Yes I agree great to have someone to chat to.

X