TDM1

Sorry to hear that. 

Is that for HER2 +ve that has spread? 

I was told I will go on Kadcyla if there is cancer in what they remove in surgery following my neo-adjuvant chemo. I've got HER2 +++ also in multiple nodes. 

I can't advise you, unfortunately, but I really hope it works well for you and without too many side effects. 

I’m a strange one lol my lymph nodes were packed with it at start but I suppose they thought herceptin would do the job but it progressed to neck and it’s like she’s trying to get me in small doses my lungs gave them pause for thought as I had spots crop up but too small to biopsy but I’m really greatful for the attention to detail and help .. I always said an experienced nurse the best advic.. be lost without them

Yes, I like the nurses best too. So warm hearted and experienced. 

I think mine is in my neck too. I can feel it. I knew it was up in level 3 too and that was confirmed later on the CT. 

They can't remove level 3 nodes though, or at least my nurse said it's levels 1 and 2 they remove, not 3. 

Have they given you a stage?

I was originally Stage3c so now it’s considered stage 4 hence the change to continuous treatment … wasn’t too happy with news but at least I’ve got a fair shot at it lol. Hope u get good news about your neck … triple positive is a little cow very determined but then so am I lol take it easy and try not to worry x

That's interesting you were told 3c. They said all they can guess for me right now is stage 3.

My breast mass is huge, although it doesn't show from the outside, both breasts look the same. The surgeon said to me she could totally see why I hadn't noticed when she saw and felt both breasts - both looking and feeling the same. On the mammogram nearly 11cm CENTIMETRES (not mm) are cancer mixed with other stuff. MRI said 8 x 8cm. Loads and loads of lymph nodes. I suppose I'm the highest stage 3, being grade 3 HER2. Don't know. They said they won't know till the post surgery histology.

Yours is a bit different to mine with your triple positive type. Mine isn't hormone sensitive, just strongly HER2 +++

Are you on Herceptin only as the MAB or Phesgo? I am on Phesgo, 2nd jab coming up this Friday. 

Whereabouts are you? I am in London. 

It’s horrible being in limbo as I’m used to knowing what next step is lol but I’m on tdm1 till  toxic effects etc become to much so hopefully get a long while out of it … I too had big mass but felt like other boob only noticed my nipple turned in and ugly look to it the tchp reduced tumour size for surgury but it didn’t do anything for my lymph nodes except one neck one the tdm1 though putting a great lid on it … phesgo is herceptin I hated those injections hope u not finding them too hard … relax the thigh muscle before hand and I don’t know if they put u on hormone blocker as u hormone negative but herceptin works really well with her2 so hopefully I’ll get a remission r cure fingers crossed … one week at a time

Lol fog in brain meant to say I hope you get the remission stage 3c means cancer above r  in supraclavicular nodes they above collarbone and tumour size and number of lymph nodes involved etc . If allary only and less than 10 have cancer think 3a u can check this out … anyhoo have a good day and hope you have a relatively easy journey

Good the tdm1 is doing that. I hope you do well on it.

What did you hate about Phesgo, was it the feeling of the injections or more the side effects after each treatment? 

I think Phesgo also contains a second monoclonal antibody - pertuzumab (perjeta), so not just the Herceptin. I've only had one dose so far. I didn't enjoy the long needle in my leg for 8 minutes, but the nurse was clever with it and made it bearable at least. A lot depends on the nurse I've found, with needles.

Thanks for the tip about relaxing my thigh muscle, I will certainly try to do that. 

No, they aren't using hormone blockers for me. It's extremely HER2, they said +++ so therefore the Phesgo. I started with 4 cycles of EC chemo and now the paclitaxel with Phesgo (12 paclitaxels and 3-weekly Phesgo for a year). 

Thanks for crossing your fingers for me. Crossing mine for you on Kadcyla too. 

They said it wasn't possible to stage mine more accurately than just 3 till they get the post-op histology report. This chemo now is neo-adjuvant. 

The breast mass isn't on the muscle or bone, but is nevertheless enormous. They can't biopsy all the lymph nodes, but they could see that loads looked abnormal and could have the HER2 in them. The one they biopsied had HER2, in fact, they found that before they found cancer in my breast. 

Thanks for your good wishes. Same to you!!! x