Why not join the Living with metastatic private group? Access group via the link here.

Starting Letrozole & palbociclib tomorrow

Options
This discussion was created from comments split from: Metastatic Breast Cancer & avoiding weight gain while on Letrozole ?.
«1

Comments

  • Not_good_63_57
    Not_good_63_57 Member Posts: 71
    Options
    Hello 
    I start Letrozole and Palbociclib (Ibrance) tomorrow as need to take same time everyday 
    reading comments here are they that bad with pain etc 
    does anyone get nausea on these think I’m stressing bout nothing but that’s me 
  • jackie 4
    jackie 4 Member Posts: 45
    Options
    Not_good_63_57
    I am switching from Letrozole to Anastrozole and commencing Palbociclib this week.  Am also anxious about the nausea side affect.  How are you going?  Hope all is well and you are coping. 
  • Not_good_63_57
    Not_good_63_57 Member Posts: 71
    Options
    Hi 
    sorry haven’t been on here much 
    did u start ur tablets 
    I did but off tab at moment as it lowered my white cells so have to wait til next week 
    had no problem taking them didn’t make me sick which is good 
  • Ktre
    Ktre Member Posts: 96
    Options
    Have not been on here for a while, last post was when I was first diagnosed and about to see surgeon after mastectomy. Cancer found in lymph nodes, another surgery auxiliary clearance and full scans to check everywhere. Just before chemo started confirmed spots in liver, unsure if cancer as to small but chemo started and if spots affected was confirmation of stage IV. Unfortunately and fortunately the chemo reduced the spots so since December 21 have been on the palbociclib letrozole combination. Anyone else on here for stage IV to the liver? Current stage the spots have been reduced to a very minor scar and not progressing, my neutrophils are low at 1.2 and have dropped below that once, Took a extra week off the palbo, bone ache, tiredness and slightly thinning hair main issues, have had some bouts of depression but currently in a good head space and living life as best I can. Am welcome to chatting with anyone, how everyone is doing ok
  • Ashanty88
    Ashanty88 Member Posts: 38
    Options
    Hi lovelies 
    lm back , haven’t been here for a while . 
    I was travelling ok until last year . Had pleural effusion . Cancer in lung lining. Sternum hip and spine . I have bad right hip pain now and have been put on 10 radiation treatments. 
    The pain is so bad . 
    I am sad l cry all the time . Nothing has been kind to me . I just need someone to say breathe . 
  • Ashanty88
    Ashanty88 Member Posts: 38
    Options
    I’m on Ibrance,letrozole and zoladex . 
    Btw how do you all cope with side effects. Weight gain especially and joint pain. 

  • Cath62
    Cath62 Member Posts: 1,366
    edited July 2023
    Options
    Hi @Ashanty88, I am so sorry to hear of your struggle. I am just at the beginning of bone mets and so I don't know what meds I will be on yet. I suspect from initial discussions I will have radium and a little break and then the meds.

     I am concerned about side effects but so far with my initial diagnosis my oncologist has been willing to adjust meds and treatment plan when it wasn't working for me. Can you talk to your oncologist about your pain and other side effects to see what they can suggest? Also what about your breast care nurse if you have one or even your gp? Then too can offer suggestions and support.

    Do you do anything like exercise to help or mediation? Deep breathing settles me down and do too does some mindfulness practice, like focusing on the 5 senses eg breathing deeply and focusing on what you can see, hear, taste, smell and touch. I do this on my walks. 

    Take care and reach out to your medical team about your side effects. I don't think you should stay silent and suffer like that. Best wishes and sending love to you ❤️ 
  • Ashanty88
    Ashanty88 Member Posts: 38
    Options
    Thank you Cath
    l will talk to my team . I do mindfulness at times , it seems to help . I will give meditation a go too
  • arpie
    arpie Member Posts: 7,804
    edited July 2023
    Options
    Absolutely, @Ashanty88 - as @Cath62 says, talk to your Onc about the pain, as there is no excuse for that. Or ask them or your GP to refer you to a pain specialist.  Even using Medicinal Cannabis Oil (which has NUMEROUS strengths to deal with strong pain) would probably benefit you more than man made opioids.  Take care 

    I am so sorry to read of your diagnosis, Cath xx  I hope that the treatment chosen for you will be minimal with minimal side effects but still able to control the mets xx.  Yes, being in the 'moment' with those 5 senses is what has been suggested for me too .... tho I need more practise xx.  Take care, you are in my thoughts xxx

    I found this the other day with just those sentiments xx



  • Ashanty88
    Ashanty88 Member Posts: 38
    Options
    Thank you so much endone is so bad with the constipation . I eat a bag of prunes and coloxyl but still so much pain . I did hear about medicinal cannabis  and it’s benefits as well . I will do my research, 
    btw l feel heard ladies 😊thank you 🙏🏿
  • arpie
    arpie Member Posts: 7,804
    edited July 2023
    Options
    @Ashanty88 - as well as doing your own research, you can do a search on the forum for Medicinal Cannabis Oil (see link below) as we've been discussing it for the last 5 years, on & off. ....

    Clicking on the link below will show you some Webinars you can watch from 2022 from the search .... and other info threads as well .... 
    https://onlinenetwork.bcna.org.au/search?query=medicinal cannabis oil&scope=site&source=community

    It should only be a matter of time before the other states 'come in line' with the current ACT law, where Canberrans can grow 2 plants each (or 4 per household) and can make their own Medicinal Cannabis Oil! 

    I can't wait for that to happen as it also takes the criminal element out of it as well! It is a HERB, for God's sake!!  Plenty of other herbs are used for medicinal benefit!!
  • Ashanty88
    Ashanty88 Member Posts: 38
    Options
    The cancer l have is estrogen positive. so lm scared that cannabis May increase estrogen. It has such good reviews for other breast cancer not estrogen positive. 
  • itsjustablip
    itsjustablip Member Posts: 2
    edited July 2023
    Options
    Hi @Ashanty88 - I had awful bone pain and joint stiffness with Zoladex and Anastrozole and my oncologist suggested Curcumin which I take morning and night as a tablet. It has made a big difference for me. Perhaps check with your oncologist.
    Hopefully it provides some relief for you xx

  • Fufan
    Fufan Member Posts: 123
    Options
    @arpie this might be a good place to remind people that, in NSW and probably elsewhere, it is illegal to drive if using cannabis containing THC.  From what I’ve read, this law might need some review and fine-tuning…