Hi, It’s been a while since I posted here. I am writing this post as I sit and cry with fear and anxiety and hope for some positive support. My partner finished her chemotherapy back in December ( 4 EC and 16 Taxol) over a period of 6 months ( Her2+). The lumpectomy surgery happened in January and after all that neoadjuvant chemo there was 0.7 mm residual cancer that the doctors removed during surgery. The lymph nodes removed were all clear which is good news. Radiotherapy sessions for 2 weeks are now being planned as we move into February. Our doctor earlier told us that she would be on phesgo injections for a year, but then post the surgery they said it would probably be a mix of Phesgo and immunotherapy, but then yesterday informed us that it would be another 14 rounds of chemo with Kadcyla every 3 weeks as preventative ( they used the term we would rather overtreat than undertreat to prevent the cancer from coming back) as HER2+ is usually more agressive. It just felt that the rug below our feet was pulled off as the word chemo is so so scary and having to endure that for another one year is very frightening. They say that Kadcyla is less difficult than EC and Taxol chemotherapy,but it just doesn’t seem fair. It’s just too much to process at the moment and one feels so helpless. I wish things were easier. I know it gets easier down the line but just wanted to put this out here as someone who feels so helpless.
Hi, I wanted to reply to this as quite honestly it could have been me or my partner also writing this a few months ago. I asked my oncologist (in the presence of my partner) directly a number of times my plan and was told phesgo 6 months if I got a complete response, or a year if not. Just before the surgery I picked up on my oncologist contradicting herself during a meeting with her. I quizzed her more and it turned out she hadn’t told me about Kadcyla and that this was the other option rather than the phesgo. I felt totally blindsided as I’d specifically asked the plan and used it to figure out my return to work etc. After surgery when I didn’t get a complete response, I was so gutted and upset at the thought of another 14 cycles of chemo. My partner was also very upset and it’s the first time I’d actually cried whilst walking out of the hospital.
I think after what we (and our parents) have been through, it feels like a right kick in the teeth when you’re caught unaware like that and you find out there’s more chemo as you’re both so worn down by then. It took a couple weeks but we got our heads round it and tbh I am doing well on Kadcyla. It’s nothing like my previous chemo and I feel quite well most of the time, to the point where I can’t believe it’s time for my next one and it seems to be coming in quick, I’m 4 down now and 10 to go, but am looking at returning to work in the next few weeks (phased) and have been doing more with friends and family again so that I’m not isolated like during the last chemo. Kadcyla doesn’t hit the immune system quite so hard, so it feels like you have more freedom. My partner is also doing better now too and things feel quite relaxed. I really hope your partner gets on ok with it, and wish you both the best. If you have any questions please just ask.
Kadcyla also greatly reduces the chance of HER2+ coming back (by about 50%) where there is residual cancer left, so it really is a fantastic treatment that wasn’t available to us about 5 years ago too 
if you want to look into it more then you can look up the Katherine trial - they recently published the 7 year results from it too, which still look just as promising!
Thank you so much for this honest and detailed response. We feel supported when we read responses like this and it also helps to know that we are not the only ones that the medical system sort of mildly disappoints on several occasions. We are extremely grateful for the NHS and the doctors but some days it just feels like a let down. It’s reassuring to read and know about the research you mentioned and I think we will eventually wrap our heads around the whole situation. Thank you and hugs 
Sending positive healing vibes your way
I had a similar experience with my pathology results and I think I was more upset by the news that I had 14 more chemo treatments than I was at my original diagnosis appointment. I had no idea that more chemo was even a possibility, so to find out that not only did I not have a pCR, that there was 10 more months of treatment waiting for me was just a punch in the gut.
That said, I’m nearly halfway through my course of Kadcyla (6 down!) and it’s not as bad as I had been fearing. When I was having EC-T, I really had to put my life on hold - no socialising, being careful about exercising because I had a picc line, no going into the office, etc. but with Kadcyla I’ve just been told by my consultant to go out and live my life. I go to restaurants, have been to the theatre, meet up with people, do my normal exercise. The worst bits of it for me have been the tiredness, dry mouth and constipation but they’re all manageable. There are some people who are harder hit by SE than others, but a lot of people are overall fine with it. Plus, the research that @belle1 mentioned show that the results are pretty great when it comes to preventing a recurrence.
Thank you so much for sharing your experience here. We are still trying to manage our feelings around this information and what is to come ahead. We know in our gut it will be okay but I think the mental fatigue and all the feelings and emotions and everything else is just catching up. It hurts my heart and every cell in my body to see my partner going through through all this shit show that is cancer. The NHS system could do with a bit more compassion and not under playing the situation ( not always the situation though) Providing full information is vital and helps prepare better. I am sorry if this feels like a rant but I am sure we will get through this. Sending positive and healing vibes your way.
Hi @sms
I am triple positive and also had 16 EC Taxol, phesgo, DMX then was told I need to be on Kadcyla. That made me very upset as I was not planning to have 9 more months of chemo.
I tolerated EC-T pretty well and was told that kadcyla would have a bit more side effects than Phesgo. I joined the FB group which really scared me.
Unfortunately I had to stop Kadcyla after 2 infusions. I was not expecting the severe side effects I had, especially as I managed to work full time during chemo, and was told Kadcyla would be a walk in the park.
Saying that don’t worry, I have been one of the few unlucky ones and I am now back on Phesgo. It is very likely your partner will be fine.
Hi, I too was extremely upset on learning that I needed months more chemo with Kadcyla because I had only a partial response to my EC-T via cannula. Plus I needed axillary clearance (3/16) not just mastectomy. However I have no side effects at all with Kadcyla, no fatigue, except a few small nosebleeds. The only annoying thing is the Picc line and having to go into hospital every week for line care. I finish next week, hooray ! It is totally worth it if it prevents the cancer coming back, and the months go quite quickly.
Thank you dear @coral1 for sharing your experience. It means so much 
And congratulations you did it! Just one more to go! Must be such a wonderful feeling 
Hi @sms ,
My daughter aged 39 was diagnosed 3 years ago her2+ and had a minute residual after chemo.After a lumpectomy and radiotherapy she too was in shock when told she would need Kadcyla for the next 9 months.
Initially the thought of going through all these months of extra treatment was difficult to comprehend.
However it didn’t take her too long to be reassured that everything was being done to hopefully give her a better chance of non recurrence.Not only that but she felt grateful to be offered this as at the time it was very expensive.
Everybody is different how they react to possible side effects but I can honestly say apart from some tiredness and mild nausea in the first few days which she more than managed to cope with the treatment was nowhere near as relentless as her chemo.She even managed a short break away and towards the end a phased return to work.x
Thank you so much for sharing your daughter’s experience. It means so much to hear such positive and encouraging stories ! We are also very grateful for the NHS for all the healthcare they provide. Sending positive and healthy happy vibes your way !
It’s definitely not a cheap drug, mine’s covered by Bupa and I can see that it costs them almost £6000 for each treatment.
Hi @sms I’m another one who felt like I was kicked in the teeth when I got my post surgery results, and heard that due to not having a PCR I now needed 14 cycles of Kadcyla - the first time I’d heard this. This completely overshadowed the fact all cancer had been removed. I’d been remarkably upbeat during the first chemo but this knocked me for six and took me some time to process. I was very angry that I hadn’t been told this was an option. But I’m now 7 cycles down and am living my best life most of the time. I am getting more side effects from the Letrozole!!! I’m back to socialising and back to exercise -even managed a half marathon at the weekend. So there is hope but that initial shock is awful. 
your partner tolerates it ok
Thank you @gromit12 . It’s been an awful first time for my partner with the Kadcyla infusion so far with her platelet count dropping very low post the infusion. This had not really happened throughout the entire chemo cycles and it feels too much at the moment. The doctors won’t do an platelet infusion unless it falls below a certain number but we don’t have any choice but to wait it out and see what they do about it going forward. God knows who decided to call this “chemo lite” .
Oh @sms so sorry to hear this. I have to say it does seem to be a lethal little blighter. I had a echocardiogram 2 weeks ago and my heart function has dropped significantly 
so I need a repeat echo. So could end up on yet more medication 
hope your partner picks up
Sending you lots of positive health vibes and prayers for excellent news regarding your heart function. And I completely agree about Kadcyla being the lethal blighter that it is! Here’s to all the Kadcyla people getting through this in the best way possible!
That reminds me, I still need to see if I can get a copy of my last echocardiogram because I was told that my heart was still fine to continue but not any specific numbers about heart function or ejection fraction. My heart feels like it’s definitely working harder when I’m doing some activity, like when I went for a run a few weeks ago and kept it in easy, conversational pace and then looked at my HR data afterwards and I was shocked how high my HR had climbed during the run because it didn’t feel that high.
Are you still looking to run your ultra this year @gromit12 ? I think that was you that I was speaking to about that, if not feel free to ignore me. I need to start building up my mileage if I still want to do mine this year. I was contemplating one of the ones to fundraise for BCN since this website has been a lifeline the past year.
@kartoffel yep ultra in July and then one in August!! 
I managed a half on Sunday which was a first since pre surgery. Which ultra are you doing? I’ve got an urgent repeat echo on Wednesday - at the moment they are saying I can keep up with my level of activity x