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Herceptin 11 years on

SueRiSueRi Member Posts: 39
edited July 2020 in Metastatic breast cancer
hi everyone long time since I have been on here as things were going as well as can be expected but now I have this cough which I have now had for approx 10 months that just won't go. My GP says my lungs (which is where my mets are) sound fine but the cough is heavy and loud with a high pitch - it even scares my dog lol. It is so tiring to cough like this it sounds like its loose but its not. I already have fatigue problems and this makes it worse. I am coming up to infusion number 200 so wondering if it the cough is due to being on Herceptin for so long. Has anyone else had any issues like this?
I hope everyone has survived covid-19 lockdown and is doing well


  • ddonddon Member Posts: 348
    I can’t help but hoping someone can soon. It’s such a worry when you can’t get the answers you need to calm your mind. Take care xx
  • PV123PV123 Member Posts: 202
    Congratulations, continuing on Herceptin for eleven years is wonderful! 
    I am currently on Herceptin, I did have a cough the first few months.  I did the chest X-ray that showed nothing.  Since the last few months the cough has cleared, however if you have had the cough for 10 months, I would definitely check with the oncologist.
  • Beryl C.Beryl C. Member Posts: 270
    I had infusion no.125 last week given x3weekly. Had a few 'odd' things over the years but never a cough. I agree with the others, needs to be included with your notes and investigated. Not sure if they'd use an x-ray or CT scan or bronchoscopy but agree with PV123, wise to get it checked.
  • Beryl C.Beryl C. Member Posts: 270
    hello @SueRi - it is reassuring when you are 'heard' by your oncologist and you have an 'action plan'. You have done all you can - now you move into the 'test and wait for diagnosis' zone - stay connected with us. xxxxxxxxxxx

  • arpiearpie Mid North Coast, NSWMember Posts: 6,364
    Terrific that your cough & fatigue is going to be thoroughly investigated @SueRi - I hope there is a simple explanation & even simpler 'fix' for you.  Take care xx. All the best for the Scan, MUGA & respiratory specialist xx

  • SueRiSueRi Member Posts: 39
    Saw the oncologist and cough doesn’t appear to be Herceptin related so restarting my 3 weekly Herceptin.
    I have a lung function test booked and see a Specialist after that. Apparently scan showed my primary has grown a few mm’s and since I have complained about pain in the area I am now being sent to see a breast surgeon so don’t know what the outcome of that will be.
    Basically I still don’t know why I am coughing so much and have really bad fatigue, and then to top it all off I have to have a colonoscopy next week as my free bowel test came back positive. I am over August already.
    take care everyone
  • AfraserAfraser MelbourneMember Posts: 4,021
    Take comfort from the fact that most positive home tests finally indicate nothing of concern. I got one not long after bc diagnosis (checking all the other bits!) and yes, it can be disconcerting. In my case all it has done is require check ups (now five yearly) which is no bad thing (prepping aside!). Best wishes and good luck. 
  • SueRiSueRi Member Posts: 39
    Another update 
    colonoscopy all good. Had MRI, mammagram and ultrasound biopsy and tumour has increased in size 6mm and it looks like may have bone mets in sternum but will learn more on Wednesday when I see Breast surgeon and hopefully find out if anything will change treatment wise.
    apparently bad cough is bronchitis which I have had for 10months + been given a puffer which has helped.
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,204
    Best wishes @SueRi for your upcoming appointment with Breast Surgeon.  
    Take care and stay safe
  • arpiearpie Mid North Coast, NSWMember Posts: 6,364
    Sounds like you’ve really been checked out well, @SueRi ...  great that the colonoscopy was clear and the puffer helping with the cough.   All the best with your BS appt tomorrow. Xx
  • SueRiSueRi Member Posts: 39
    Latest update. I am going to have a mastectomy as tumour has grown and mutated from er+ to er- but still pr+ and her2+ so seems I will continue with Herceptin and femara but will also have sentinel node tested to find out if any lymph nodes need to removed. I am happy to have answers and I always wondered why I never had surgery now I know. I have a Telemed with oncologist tomorrow so will find out for sure that treatment remains the same.
    thanks ladies for all your kind words ❤️
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,204
    Pleased to read you've got a plan.
    Take care and stay safe 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,364
    All the best with the Onc, @SueRi ... bugger that the tumour has grown and mutated  ... yep, if in doubt, whip it out.

    take care xx

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