No treatment re secondary breast cancer in the lungs.

Thanks, Bobtail for your message.

I suppose that for each one of us on this journey, we will make different choices re medications, depending on our situations and what we want for the remaining part of our lives. From what I’ve seen here, many many people want to live for longer, for whatever reasons, and I guess whether you do end up taking Ribociclib will depend on your own desires for your future. I’m assuming that you have done your own research. Has the Letrezole made any difference to the size of your cancer (either in the lungs or other areas), or is it too soon to tell?  From what I understand, the two drugs work in slightly different ways.

For me, it's about quality of life over quantity, but I think that is easier to day as an older lady. Have a devoted husband (who is devastated and 8 years older) no children.

Letrozole did shrink my tumour when I was first diagnosed, allowing me to have a lumpectomy, so I'm hoping it will do the same again to the mets. Only just started it again, so too early to tell.

Hi bobtail…so what do the medics say will be the benefits of Ribociclib to you, if Letrazole decreased your tumour last time? Are they saying that it may nt be as effective this time?  Or is the extra drug a sort of failsafe? Do you have just the one nodule you mentioned, or, like me, do you have others of varying sizes? I have visualised that the doubling time will be most important, as when one nodule doubles, then the others will as well (to a greater or lesser extent, I guess. As I have decided to refuse further treatment, then I will not be able to get an nhs ct scan. My plan (such as it is) to try to work out how long I may have, is to pay for a private ct scan in the early spring, in order to have a better idea of the doubling time, and thus give me a (maybe) better idea of when the end will be near.  Of course, by then it could be that I have more symptoms than now, and that might really be irrelevant.But it’s a plan, in the absence of early nhs support and interaction.  

Like you, I think of quality, not quantity. So I guess for you the difficulty is your husband, who is ‘devastated’, whereas for me it is more my daughter I am thinking of. I have another daughter and also one son, who I don’t have such a close relationship with.  It’s close, but nothing like my relationship with my other daughter. I have a partner (since 2012) who is an occupational therapist in a hospice. She sees the end result of many medical issues, not just cancer. For the last few years she has known my views, and has understood them. She is that way inclined herself, but I’m not sure she would be ready to say “enough is enough” as I am. We have both made “living wills”, but hers is slightly different to my own. I am very lucky to have my partner, as she is an amazing support in relation to my decisions, and has given, and continues to give, what I need from her. However, I suspect that she thinks that if she doesn’t give this support I might not tell her stuff, and share stuff honestly. She is probably right in that. There is ten years age difference between us, and on some level I guess she has always known the possibility that re age and past cancer issues combined, I was likely to go before her.  We have always discussed breast cancer within the framework that we always knew it as going to return, in some form. Having said that, we were both a bit surprised.to some extent, as we had put it to the back of our minds during the last few years. 
Lulu. 

Hi All,

I also have lung mets, diagnosed de novo in May and  a complete shock as I only had a persistent cough which had lasted more than 2 months and felt a bit run down which I had put down to work. I’ve been on ribociclib and letrozole since June and the tiredness knocked me for six in the first fortnight but now I can  honestly say the side effects for me are minimal other than a bit of nausea when I start a new cycle. I don’t know the size of my mets or how many but I saw my original x ray and scan from May for the first time in November and all I can is my lungs looked like a blizzard had hit them. My oncologist said the case stayed with him but fortunately I’ve had good shrinkage at my last two scans and just hope desperately it will continue to work for as long as possible. I was also quite breathless before treatment and still am now but not as bad. I also still have my cancer cough which annoys me immensely but again it’s not as bad. Wishing everyone the best for the future with this horrible cancer regardless of treatment options x 

Hi Lovedby archiedog…I’m sure other people love you too ….lol  

thanks for involving yourself in this discussion. Actually your message has been very helpful, as my ct scan was also “like a blizzard”. Yours is the first info that I have seen which has talked about the side effects in a relatively positive way. It has really made me think a bit more, and about what other side effects I will be able to put up with. if you have seen previous messages in this thread you will know my main concern is my daughter (adult, of course) and the impact my death will have on her.  Definately pause for thought. Thanks so much. I hope things continue to go well for you. 
Lulu. 

Thanks Lulu

I’m sure people react differently to medication but what I would say is when I first started taking ribo and letrozole I was fearful I’d be extremely tired for the rest of my life. I remember friends coming round and we went for a short walk to a nearby book shop and I needed to come home I felt so tired, I could hardly stand. Hand on heart, I’m nothing like that now and even when I start a new cycle as I say I can feel a little nauseous for the first couple of days but otherwise I get on with life as before (albeit with the worry of cancer in my mind). X

I can’t thank you enough for your post. Hope things continue to be good for you. Xx

Adding Ribo to Letrozole supposed to lengthen the time it's effective for, typically another year, but of course these are statistics and we are all individuals!

I took Letrozole for 8 years finishing around 2021 and had absolutely no side effects, and could feel my breast lump shrinking after a few months. Took it for about 15 months before the lumpectomy. They were pushing for me to have chemo, but I refused. 

I couldn't wait to get back on it when SBC was diagnosed, and just hope it has the same effect this time round.

I do have other mets in the lung, one 6mm and another 3 mm + multiple tiny nodules. 

Perhaps you could think about Letrozole Lulu, perhaps try taking it alternate days and see how you go.

Yes I am now thinking about taking the meds, principally after being with my daughter. There was just something “off” and unusual about her, and she is certainly very reticent about talking much about the cancer in any great depth. It really gave me pause for thought, as she has not been like that before, and my guess is that, if I don’t try, she may feel that I am abandoning her, psychologically speaking. There are past family issues that might feed into her feeling that way.

Lovedbyarchiedog made some good comments, and I have taken on board what both you and her (she?) have said about side effects. I had not considered taking just Letrezole on its own, nor that you could take it every other day. Sounds like you know a lot about it, and I appreciate you sharing your knowledge and experience..especially that you had no side effects. Having gone through a rough 24 hours, I definately feel much calmer at present, due to comments made by both of you. 
Lulu. 

Hi, after the first few cycles I've been OK, the only side effects now is I'm tired all the time, my scans have always shown no progression right from the start I was hoping for some reduction.