Be Positive

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I just have to let this out.  I am so tired of people sending me cures for cancer, have you tried this or that.  Some are eating leaves of the moringa tree.  One of them is Ivermectin which is a horse and sheep de worming tablet.  I know that there is research on this but it is only research.  Also I have had You have beaten this once, you will beat it again.  And the worst is Be Positive you have to Be Positive.  I know this I live with it every day.  If I hear this once more time, I might scream.

  • I am no expert in breast cancer treatment but am fairly well researched. Of the drugs you mention, ribociblib is a kinase inhibitor, exemestane is an oestrogen blocker, and denosumab helps prevent bone issues arising from the oestrogen blocker. All 3 would be classed as targeted therapies. I understand from this combo that your cancer is oestrogen positive and HER negative.

    As far as I know, the only immunotherapy drugs used in metastatic bc are for the proportion of people with TNBC that either have high expression of PD/L1, where the PD/1 blocker Pembrolizumab can be used, or have high expression of PD/1 allowing the PD/L1 blocker Atezolizumab to be used. I realise this sounds like I have this crossed round - I haven’t, it’s because PD/1 binds to PD/L1 so they target it accordingly. There’s currently a clinical trial going on testing pembro on oestrogen positive cancers that also exhibit PD/L1. It’s been a lower priority to test this as there are lots of treatments for oestrogen driven cancers but very little for TNBC.

    As for being ‘cured’, they will never describe a treatment for metastatic cancer as curative, but many drugs do hold people stable for a long time. Pembro can lead to a durable remission in some people - it looks like I may be one of them, fingers crossed.  

  • Hi Lee2, I've not had genomic testing, as not only very rare to find an immunotherapy for  my cancer type, my co-morbidities would almost certainly rule them out anyway. But absolutely you ask about it for yourself, and if I can help in any way, just ask, PS genetic testing can take a few months to get results.

    Eddie xx 

  • Hi Moi, it has been  a while my friend, but always lovely to hear from you, I hope all's as well as can be for you and your family, don't be a stranger Moi, you have a lot to offer many of the guys on here, be well 

    love Eddie xx 

  • Hi Eddie, as I said on my last post my immune system is low, I've had covid, flu, a stinking cold, sinusitis ( can't breath through my nose.) At the moment I feel on the mend. I hope your coping well and still having your breaks. Are you and Sheila married yet ? I want an invite. How is Mandÿ doing with her cancer. How are the twins doing,they must be almost 1 now. Take care my friend. XX 

    MOI 2

  • Hi Moi, sorry to hear how your buggered immune system is letting in all those nasty little buggers, but i hope as you say, things have turned the corner, maybe a trip to Spain is on the cards,

    I'm plodding along my friend, and yes, we've had a few breaks, with a few more lined up, we have had a wedding in the family, my aunties, I asked Sheila if we could make it a double wedding, she refused, though she regrets it now, so sadly I'm still not married, Mandy's recent PSMA scan showed no sign of cancer, mines in my spine, but stable and Lesley has just finished cycle 3 of 5 of her chemo following surgery, and we're hopeful. The twins are almost 3 months old, baby Mandy will be 1yo in a couple of weeks, and all are doing well, as I hope you will be soon.

    love Eddie and Sheila xx

    • Hi Eddie, well I got baby Mandy right any way. Yes off to Spain again in May, if my family was on Mars I'd go there lol. I'm  wearing a mask again, not that it's helped. My masks are purple pretty cool aye. Glad you've got more trips planed and enjoyed your aunts wedding. Oh hang in there, if your happy together who needs a wedding. Has uour spinal cancer effected your mobility and your driving. I hope not. I hate not driving it drives me mad. Take care XX
    • MOI
    1. Hi Coddfish your really clue up on all the treatment,  me well not that good with them. Yes I know this cancer will one day come back, but at least I know they will try another treatment on me, I'll try anything, once I think enuf is enuf I'll stop. I don't  want alot of pain in my last days but we don't always get what we want. It's good to hear your doing well and I hope this continues for a long time. Take care  lovely. XX
    2. MOi
  • Hi Moi, I can't keep up with the forum either, and what a surprise your off to Spain, if you want an invite to the wedding, it's only right you invite me to SpainGrin, well done Moi, picking a mask because it's a pretty colour lol, and my mets to the spine aren't really an issue for now, I'm still slow and limited with my walking, driving is fine, longer distances can be difficult, and I will change my car soon to something with slightly higher seats, and I'm having the bath replaced with a shower, now being anaemic doesn't help, but hopefully it's treatable, and with the warm summer months to come, I should be fine, I didn't know you couldn't drive Moi, is there any hope this could change, now your treatment and circumstances have changed.

    love Eddie xx 

  • Eddie I don't drive anymore cos I almost had an accident cos my sugar levels dropped suddenly (diabetes) I went dizzy. So I won't chance it again. My Ray is my driver now ha ha. Well, I'm  in bed and ready for sleep now so chat soon. Xx

    Moi

  • Lucky you, to have a Ray, is he cheap as I could do with a driver at times, my bedtime too, sleep well 

    Eddie xx