Treatment plan change

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Hello All...

I was diagnosed with grade 2 tripple positive ductal carcinoma er8 pr7 her2+ my cancer is 28mm at the beginning of July. 

My initial plan was docetaxel carboplatin herceptin and perjetta for 6 cycles then surgery (lumpectomy) then carry on with ther herceptin and perjetta and radiation.

I had my first cycle on the 17th September which apsalutely floored me leaving me hospitalised for 10 day with nutropenic colitis that almost killed me.

I've only just come out of hospital saw my oncologist yesterday he has decided no more chemo as I was ill and too much of risk. So for now I'm to carry on with just the herceptin and perjetta while I get referred to the surgical team in the next mdt meeting.  My oncologist has said after surgery I will be put on paxletaxel once a week instead of the docetaxel and carbo he said its not as brutal. 

So I have a few questions firstly, while taking herceptin and perjetta alone ( without chemo ) what we're the side effects and are you really poorly?

My second question is will my plan for surgery now change from lumpectomy to masectomy or will they just stick with original plan? 

I'm feeling anxious about having the herceptin and perjetta and if its going to make me really ill...

Right now I'm struggling to see the light at then of the tunnel and I feel powerless and pretty scared as I know tripple positive bc can be aggressive. 

Many thanks Blush 

  • Hi RIAcam75, sorry to hear of your diagnosis and your bad reaction to your first chemo. I too am triple positive with invasive ductal carcinoma. I had 7 cycles of chemo and am currently on pesgo injections every three weeks. Apart from a few achy joints, I have found the injections fine. My husband trained to give them to me at home, so I now have less hospital visits, which is good. Treatment plan changes are always difficult, but unfortunately do happen. I was due to have a mastectomy, with diep flap reconstruction next week, but this has been changed due toi illness. It has now been rescheduled to the following week. It was so disappointing as I have been well all through treatment, then get ill just before my operation. It's only a week, but I was so ready to just get this part of my treatment completed. I wish you well on your journey moving forward. If you want to chat anytime I'm always here. Xx

  • Many thanks for your reply Daisy much appreciated. 

    So sorry to hear you won't be having surgery on the planned date it must be disappointing but at least they are looking after you and want to make sure you are well enough. 

    I'm glad to hear you didn't have any adverse reactions to the phesgo injections alone, I'm only just starting to feel better I'm not sure I could go through feeling so ill again. Xx I hope your opp goes well and wish you lots of luck xx

  • Thank you,  good luck to you too. Xx

  • Hi not exactly the same as you but I just wanted to reassure you with regards to Herceptin

    I was treated for Her2+ cancer (and also towards the end ER8/PR8 cancer, long story but they overlooked this initially) 

    My treatment was 

    –Docetaxel (Taxotere) + Trastuzumab (Herceptin)+Pertuzumab (Perjeta).   For 4 sessions of 3-week cycles Followed by Epirubicin  4 sessions 3-week cycles. This was completed on the 4th February 2020

    Various side nasty effects, a couple of short stays in hospital  (2 days max). I believe I also had a reduced dose of chemomeds about 80% and I think this probably made things easier for me. 

    Post chemo target drug/s  Herceptin injections began on the 25th February. 2020 and went to December 2020

    The Herceptin injections post-chemo were not a problem. The worst side effect of the herceptin was a runny nose which was pretty much ignored by the medics. I am sure the runny nose was a side effect because it stopped once all the injections were finished. 

    With regards to your operation, I doubt if not having chemo will change things I had a double mastectomy but this was down to the number of tumours I had and that it was done during covid. My understanding is that a mastectomy is no more a preventive than a lumpectomy so no reason why this would change Have a look at my profile if you want. I am currently on an aromatase inhibitor exemestane for the ER8/PR8 tumour I began this in July 2020 and should stop in July next year. I didn't have radiotherapy, not quite sure why but it might have been because of covid making treatment difficult or it might have been because with a mastectomy there was less need. 

    Cancer wise I am fine and am looking forward to next year when I finish the exemestane. 

    Very soon you will be in my position with the finishing line very close. 

    My best advice is to prepare questions for your medical team before appointments and to always feedback to your breast care nurse. Also if you can take someone along with you to appointments as when we are ill we are not always our own best advocates. 

    Good Luck xxx