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Phesgo/herceptin and letrozole

Wendy58
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Had an ongoing on and off cold for nearly four months since having these drugs ! Thinking of stopping all drugs as BCN has said it's my choice and some patients have died but some still living after drugs being stopped , but I don't want to keep thinking of CANCER every single day which is all I do at the moment I just want to live my life and my heart function has already dropped to 60% after 9/18 phesgo/herceptin leg jab s and my own GP not too happy at me trying RAMIPRIL to help with heart stability as my BP is normal plus it can cause kidney problems amd im only on tablet day 5 of letrozole and on my second day I have again developed the cold from hell ( it's not Covid ) so my my

question is : HAS ANYONE ON HERE STOPOED THESE TREATMEMTS AND ARE ARE STILL ALIVE ?

I have had my chemo / lumpectomy / SNB lymph removal and radiotherapy 

 

Thank you

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    Hi Wendy58, I am where you are - had my 9th Phesgo injection 2 weeks ago and the side-effects are not nice.  I tried Tamoxifen but it did not agree with me, refused anthing else as I have fibromyalgia too and thus in pain "all over" and didn't want this worsened.

    In April I hade heart palpitaions and flips (felt like that in my chest) but all my ECHO's have showed "no significant change".  The A&E doc started me on Bisoprolol and that has stopped the palpitations but I have now developed a really bad tickly cough and shortness of breath. Phesgo can cause heart problems and they monitor that closely with the ECHO but none of the nurses or oncologist have mentioned lung problems. It can cause serious lung problems too. I've had a chest xray and 24hr ECG and will get the reports on these from a gp this weekend (phoning me).  I am seriously thinking of stopping the Phesgo - this cough is tiresome, plus all the other side effects are slowly worsening.  I read a study somewhere that half the course of Phesgo is better than none and that the cadio toxicity increases with each dose so I am seriously thinking of saying - enough!  I had EC x 3 July/August last year, mastectomy in Oct.  

    We have to bear in mind that Phesgo is a new drug and only been licenced in the UK since the start of 2021.

    Kaisa

     

     

  • Offline in reply to Kaisa

    Hi, 

    I was diagnosed last November 2021 with BC, HER2 positive. I have 6 rounds chemo then mastectomy in May this year. I started phesgo injections in August. Feel fatigue, tired, lightheaded. Some tummy upset too and generally run down. Getting worse with each one. Just wondering if you continued with all rounds of phesgo or did you stop half way through? 

    thanks 

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