Starting treatment anyone in the same boat?

Hi Cumbrianlass.  I don't have zoladex as I am now 60.  I am on Exemastane, Ribociclib and denosumab have been on them since December 24.  I am getting on very well on these.  I was on 600mg Ribociclib but now been reduced to 400mg as I got such a terrible rash.  Been fine since they have been reduced.   First time I had breast cancer was in 2012 and had surgery, chemo and then radiotherapy.  Diagnosed last year with secondary breast cancer with mets in most bones, including pelvis, spine, ribs skull.  I am feeling good though and the drugs have made the cancer stable which is good.  I find that walking my dogs every day helps me with the pain.  I hope you get on as well as me with these drugs.  Good luck.

Lee x

Hi Cumbrianlass, I think I replied to you on the other forum, but I also have Stage 4 IDC HER2- ER/PR+ with mets to spine.  Diagnosed stage 3 in May, Stage 4 in August. I am on Letrozole and Ribociclib, and find them manageable. I  am post menopause, so the letrozole is a repeat of menopause Hot Flushes.   Occasional bowel problems with Ribociclib, but manageable.  Can't comment on the other meds.  I'm told I might get Surgery (but seems unlikely, it seems it's considered pointless now I'm stage 4), and saving Radiotherapy for if the spine mets get troublesome.

Don't panic, try the meds and see what happens.  There are alternatives if you get difficult side effects.

Good to hear that you’re managing and tolerating the meds well. This is the kind of positivity I need to read! 
I’m also hoping I can continue to be “active” with walking and swimming but one day at a time.
I swear I’m just in a constant state of panic and overthinking! 

Thanks Jilly. Again glad to hear this, it’s so reassuring after scaring myself with the side effects! 
What time of day do you take your Ribociclib? I’m guessing this one is likely to give me most trouble - thought about taking my first dose before bed tonight and then at least if I’m nauseous I’ll be in bed! 

 Leelaloo & Jilly I’ve dropped you both a friend request - hope you don’t mind, not sure what the etiquette is but finding people in the same boat is very comforting x 

I take mine in the morning, first thing. When I started I was also prescribed an anti-nausea tablet to take with it, but I have never needed it.  I know some people find the 600 dose too much, and the dose can be reduced if it causes a problem.  I guess bedtime might work better for some people,  so find what works for you.

I take my ribociclib at 4 dont really know why.  I take my exemastane which is like letrazole in the morning.  I take anti nausea tablets twice a day because I am taking tramadol, sometime morphine and they make me feel a bit sick.  I have mets in all of my bones but the spine is the most painful.  I have a back brace to wear and had a single dose of radiotherapy to my spine which helped with the pain.  Saying all that I am enjoying life and love walking except yesterday.  Our garden does look a mess this morning.  I accepted your friend request CumbrianLass.  

Lee x

Hi Cumbrianlass, I was diagnosed de novo June 2024, it started with a really painful backache, I was diagnosed with secondary to my spine and was sent for radiotherapy on one of the lesions still had pain after but as the year went on it slowly got less painful and I have no pain at all now except if I overdo it

im on Abemaciclib, Letrozole and denosumab, I was on Ribociclib but it didn’t agree with me, I went back to work last December and I can honestly say I feel good, I do get tired easily but I just rest when I feel that way

i had my last scan results in November and I am still stable 

please don’t worry about the side effects I tried to not look them up, if you do get any just speak to your team they were brilliant with me.  The only thing I would say is be conscious of your blood pressure on Letrozole, I have never suffered with this before but I am on a BP medication now 

take care and hope your treatment goes well xx

Thank you - I’ve been taking all meds at bedtime and so far so good. I have had a bit of nausea and tiredness but it’s been manageable so far. 

Thanks Lee, that’s interesting to know about the radiotherapy. I’ve been given the impression that any surgery and or radiotherapy isn’t an option for me at the moment but I’ll look into this.