Triple negative revised to HER2+

Hi Embe

Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer.  While I only had capacetabine I thought I'd reply to you as I noticed that you haven't had any replies yet so I thought I'd reply and welcome you to the community.  Hopefully someone will be along shortly with answer to your query.

Wishing you the best of luck with your treatment.

Best wishes

Daisy53

Thanks for replaying Daisy63 and for the lovely welcom

Hi I was HER2 positive. Can’t comment on capecitabene but did a full year of Herceptin most of it post chemo. It didn’t cause many problems for me. I had flu like symptoms for 24 hrs after the first one but that disappeared with subsequent ones. I experienced a slight  lowering effect on my immune system particularly lymphocyte count, mine was already low due to another condition. You will have an echocardiogram every 3 months to monitor heart as Herceptin can affect the heart in rare cases. I was fine and didn’t find the echocardiograms difficult. 
My diagnosis changed post surgery too. I found it upsetting but it shows how high the standard of care is that they can respond to new information about our cancers as they get it so we get the best possible care and outcome. Your treatment is tailored to you. Hope it goes well. Love from the coffee fiend xx

Thank you coffeefriend. I’ve had one herceptin injection so far. Like you will have them for a year. Done 4 days of capecitebine tablets (10 a day ) So far feeling fine. Initially I was upset about the change in diagnosis but now OK. As you say our cancers are all different and we can’t assume a different treatment would have meant anything different. Thanks so much for replying. I hope you are doing well

I too had a change in diagnosis.  Was originally diagnosed triple negative but pathology after op shows low levels but not negative.  Prosigna testing being done and now await treatment plan.

Thanks Ochno. I hope you get your plan soon. Stay positive.

Hi there, my story similar.  I was diagnosed with TNBC last year. Had chemo, then op last month and starting radio. Op highlighted a portion of her2+ in the residual in breast. So I will now be going on Cape and Herceptin in March. Looking on it as good, throwing everything at it and as on herceptin for a year, more monitoring for 12 months.

Finally got my treatment plan.  Prosigna score came back as intermediate, but on the low side.  Oncologist wanted me to do 4 months of chemo, followed by radiotherapy and letrozole.   Percentage benefit from chemo marginal so I have decided to go straight to radiotherapy.  Now await radiology appointment to get the ball rolling.  Now 7 weeks post op.  

That sounds like a good compromise. Similar to me. Just had 5 days of radiotherapy.  Skin a bit red, the odd stab but nothing too major. Using Aveeno and a bit of Aloe Vero since finishing. Glad to be on the other side of it. Xxx

Is that you done after 5 days??  Initially it was said I’d get 20 sessions over 4 weeks but he said it would be up to radiology oncologist to decide?  It’s good nothing major by way of side effects.  I have my lotions and potions all stocked up.