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Hello .just introducing myself .first time on here x
Hello as well sorry for the reasons why you have needed to join this site.
I too have secondary's in by bones - primary is in breast.
Just to say you are not alone.
hope you find the group helpful. What treatment are you having?
I have just been diagnosed really, just finished radiotherapy to my left pelvis.
Mine was also ...so not fare is it ..
I'm having zoladex and dunusanab injections ..pablociclib and letrozole
Hello, I too am quite new to the group.
I have secondary breast cancer. It is in my rib , hip , sacrum (lower back, ). I have possibly a nodule in lung. And 2 weeks ago broke my foot in 3 places. So I think we all are feeling roughly the same and bloody cheesed off . I was clear from breast cancer for 8 years. I am 63 and live in Aylesbury. I am also taking CBD oil. It has diminished a little bit on one side and stable on the other. I am only taking Letrozole as she is waiting to see . The plan was zometa and CDK but she says we will save it for later. I also have had teeth removed in preparation for the zometa 2 stents fitted and have rheumatoid arthritis. So take drugs there also.My husband reckons I was put together like Lego lol!!! It just is good that I can talk on here as it is only people like us understand how we really feel. !!
Thanks for reading. Xx
I am also on Letresole, Palbociclib and have monthly bone juice injections.
I agree whilst family/friend can be supportive it is only through this forum that we know how it truly feels. Our family and friends are also suffering with our diagnosis and I think it is important not to lose sight of that but their suffering in a different way that we don't understand.
Hoping our treatment continues to keep the alien at bay.
Very similar to me but I’m having ribociclib rather than pablociclib. I think they probably do the same thing. I’m going to the planning meeting for the ribociclib on the 30th.
That phrase about being put together like Lego really made me chuckle, it’s a shame we aren’t Lego as we could just keep replacing pieces! I needed Lego hair when all mine fell out with chemo!
I’m really disappointed too that I was 7 post primary treatment and now have mets. I am just thankful that we have such amazing treatment available. Letrozole alone is a great drug, it shrunk a friends primary cancer til there was nothing left to take away. And the targeted therapies that we can have are amazing and weren’t about when we were first treated.
I thought when I was first diagnosed that I might not live beyond a couple of years. Now I feel that I’ve been given another chance in a way, I’ve got to live whatever life I have left.
And we are all in it together here, we don’t have to put brave faces on.
Well said Nicky! Treatments are amazing now! It’s not an imminent death sentence as we all fear after being told! So here’s to a good but sometimes shite life! X
I was initially given Ribo but my liver could not tolerate it so after a 7 week break was started on medium dose of Palbo - thankfully I have tolerated this am on the highest dose 125mg.
I will be having a bone scan in January and have my 3rd CT scan also in January so I am not going to think about it over the festivities. My next ONC appointment in is Feb.
Well what a great site this is. You have just bucked me right up !!!
All you said was that piece about Letrozole and I have renewed faith.
This is why these platforms that us normal people can speak on are vitally important. I am always thinking will they or won't they be working. So when you hear of positivity about a drug that you aractually taking it buzzes you up again.
Brilliant! I was bucking myself up as I wrote that, I think we can lose sight of positives when we are in the middle of things. I absolutely hate being told to be positive when I’m fed up but reading about successes does help me. And there really are plenty of them x
Over in the secondary breast cancer forum Noswda1 started a thread for positive stories - I am a self confessed techno phobe so would not even attempt to paste the thread. Please check it our though
This may well be the link to the Positive Stories thread IamLyn mentions ?
It is in the Secondary Breast Cancer Group - Which may well be worth joining if your bone secondaries are breast cancer related / specific ?
As for Letrozole only, there has been several ladies who for whatever reasons couldn't have chemo and Letrozole was used to shrink their tumours down successfully prior to surgery - As a standalone drug it is often underestimated even when it feels like it has caused your joints have aged 20 years :-/
Sorry to see you back here Nickyd1 recognise your avatar from way back
Take care, G n' J
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