Hi Emmylou77 (and others!) - great to find this thread.  I was diagnosed Her2 positive on 31 July, surgery 6th August (12mm tumour) and meeting this coming Friday 13th with oncologist to start treatment - like you emmylou77 - 12 x weekly tasol, then a year of herceptin and radiotherapy.  I'd love any insights from those who have been there before me on how this all transpires.  I know that different people react differently, but any accounts of what is to be expected, to help prepare myself, would be great - obviously hair loss (how quickly does this happen?) and I've also heard of possible finger and toenail loss (eeep!).  Sleepless nights, puffyness, nausea - I'm doing the old 'prepare for the worst and hope for the best!'.  I'm a pretty positive kind of person, though it's all still quite surreal really that this is happening - it's all happened so quickly. It's a funny kind of comfort knowing that there are others going through very similar feelings, treatments, etc.  I'll look forward to any insights at all.  Thanks :) Sally

Hi Sally,

If you are having paclitaxel ask about a lower dose weekly instead of the higher dose every third week, test have found that although over a six month period you end up with the same dosage having it spread  weekly and lower doses the side effects are less, I just finished my fourth one Thursday and feel ok, bit of a scabby nose and sore throat, still have hair but have been told that might start to thin now I have started my 2nd cycle (3 lots of chemo = 1 cycle) nails ok so far, I will keel you informed. I should have had 2nd herceptin Thursday but my echocardiogram came back to low and as herceptin effects the heart walls they stopped it,  had to have a 2nd echocardiogram and see oncologist Friday, I know it's now a little higher so hope I can go back on herceptin as this is the one we all need for HER2 positive,  but they will keep a close eye on your heart throughout treatment. I have scarves at the ready and have chosen a wig but have not bought it yet. Feeling positive which ever way it turns out and like you said, it's nice talking to people going through the same thing. Keep in touch and we'll laugh together maybe a few tears on the way but we will get through it.. I  am looking at holidays for when treatment is over and immune system gets back to scratch so I can fly somewhere exotic and chill, nice to have something to look forward to.

Krissy x x

Im on my 5th of 12 Taxol this Friday, i cold capped i still have my hair, im always hungry i dunno whether it's because im trying ti stop myself from falling asleep, ir because of the steroids. I feel ok just really tired my sleep patern is well all over the show  i hadn't gone thru menopause i believe i am now so hormones are a bit messed up, but last week i was 3/4 of the way through and next week will be halfway through. If i could give you any advice it gets slightly more tiring each time you have treatment. Rest up, don't fight your tiredness! Be kind to yourself! take one day at a time! don't put any pressure on yourself 

Hi Emmylou77, thanks for your feedback and advice, all taken on board. I have just 4 hours to go now till my first treatment (I’m in Australia). Unfortunately I’m unable to cold cap as I’ve had a couple of rounds of brain surgery previously, so it’s not a possibility. Sounds like a few months ahead of sleeping then!!! Thank you again and best of luck with your ongoing treatment, cheers Sally

Hiya Sally, God bless you, wishing you all the best today and with your future treatment x

Hi Wendy

my situation is very similar  to yours with DCIS and 4mm invasive component which is her2 positive. Did you go for chemotherapy and herceptin in the end? 

Hi no I decided not to have the chemo and

herceptin, I just went with my Oncologist's recommendation at the time. He felt

that the benefit/risk wasn't worth it as the tumour was only    3mm. I've been taking letrozole since, I had a

mammogram in October and was all clear. I don't know if recommendations have changed now, if there's been any new research or anything with regard to small tumours.

Good luck, Wendy 

Hi Wendy thank you so much for taking the time to reply. I will speak to the oncologist on Monday and see what she says but the surgeon has told me that further treatment apart from the mastectomy which I have already had is not recommended. Thank you again 

hello i have her2 pos and just wondered exactly what treatment you opted for and what you were offered. Has anyone with her2 pos not been offered chemo and just had the Herceptin injectionsThanks Cheryl