Hi,
I was diagnosed back in April, triple positive ER8, PR8 and HER+. I have had neo adjuvant chemotherapy (Docetaxol and Carboplatin) and have been having Phesgo injections in my leg since chemo started (have had 8 in total) I had a lumpectomy 3 weeks ago and my histology results were really good -lymph nodes were clear as were the margins. Radiotherapy is planned in the next few weeks, probably 5 sessions. Also start Letrozole tomorrow.
Saw my Oncologist today and he threw me a bit of a curveball. He offered me a choice of Kadcyla to replace the Phesgo injections. It is usually given to women who either aren’t disease free after surgery and chemo or have more advanced breast cancer, but over the last year or so, they’ve started offering it to women who have early stage breast cancer with no signs of disease. It would be 14 cycles three weeks apart starting from next week. It has Trastuzumab like in the Phesgo injection but also a chemo drug Emtansine in it too. It would reset my targeted treatment from now, whereas I am nearly halfway through the Phesgo injections. The side effects look worse than for Phesgo too.
I’m wondering if anybody else has been offered this drug for early stage bc with no sign of disease and how did people find the side effects from it? After a gruelling time with chemo, suffering already with mild ME, the thought of something that will really make me fee prettyl rough again fills me with dread, but then again if it will make a big difference I know I should go for it. The studies on it are so young that it is hard to know at this stage what the benefits are though.
Also, are there any women who have a similar diagnosis and treatment plan to mine and had the 18 cycles of Phesgo and remained disease free for a significant length of time?
Such a difficult decision to make. Any advice or thoughts would be greatly appreciated.
Best wishes to all of you.xx
Hi @Nellby73,
I am sorry you haven’t had a response to your question. I am sorry to hear what you’re going through, it is not a surprise that you feel afraid of the unknown.
I am sure someone will be able to share their experience with you. In the meantime please know that our nurses are here for you any time, here on the forum on Ask our Nurses your questions or over the phone 0808 800 6000.
Sending love,
Alice 
Hi,
I was diagnosed last year in June and I’m ER+, HER2+. After a rigorous cycle of chemo 6 sessions Docetaxel followed by mastectomy the results from the surgery weren’t clear. Although the chemo in my case shrunk the tumor from 8.5cm to 3 cm yet there were still traces of active cancer cell so I had to undergo another heavy session of chemo EC total 4 cycles which completely wiped me out. After this I had radiation 15 sessions. By the end I was completely drained n struggled with the tiniest daily task. I used to get daily injections (Fragmin) with Docetaxel to avoid thrombosis. And also Zarzio quite frequently. for Docetaxel before the chemo started the nurse used to give me a huge injection which took 5-8mins just to inject. So in a nutshell post all the horrible toxic intake and torture I was supposed to get Kadcyla 14cycles every 3 weeks and injection Zoladex every 4 weeks to bring the Estrogen levels down. I’m now 11 cycles down with Kadcyla n thankfully Zoladex is now once every quarter. I’m also supposed to take a pill Anastrazol daily for the next 5 years. The side affects of Kadcyla initially for me were minimal If compared with chemo especially EC as that’s the worst. But after the 8/9dose it usually has stronger side affects I suppose cos of the amount still remaining in the body clubbed with Zoladex. But just hang in there I know you have been through hell but you are a survivor and you can definitely beat the **it out of Cancer. 
So stay strong!
Sending warm hugs n wishes 
Dear Nellby73, I was told that Kadcycla would have been the standard treatment pathway for me as ER+/HER2+ partial response (mastectomy node negative with clear margins) so it is obviously part of a new protocol if that is of any help. However, as I was a naughty dissenting patient who refused paclitaxol and was therefore denied Phesgo, I am now on a pathway for Trastuzumab alone (until my pathology results came back HER2 negative that is so its all up in the air again.) As with all treatments its your decision to make so you could perhaps explore the option of Trastuzumab alone? Alternatively you could try it and see and come off it if it is intolerable. From my research the treatments to stop cancer coming back do seem to lower the risk in a large cohort but we can never know If they are going to be effective for any particular individual. Weighing up an individuals desire for quantity against quality of life may be one possible input to these almost impossible treatment dilemmas that keep being presented to us. I wish you all the very best and hope you get some more replies. Love from Tulip x
Thank you so much for taking the time to reply @Dimpled and @Tulip29, I really appreciate your input. Wow what a journey you’ve been on @Dimpled, you’re so brave and strong and hearing your story has helped me dig even deeper and carry on moving forward with the treatment offered -Kadcyla. Having spoken to my Oncologist for half an hour on the phone last Tuesday, I have decided to give Kadcyla a try as it turned out to be a choice between Herceptin or that, not Phesgo and Kadcyla. The difference between the two drugs could be around 5% in reducing a recurrence, so I felt having come this far, I’d be unwise not to at least try it and see if I can tolerate it. If I can’t, I can always go back to Herceptin injections. Well done for getting to 11 cycles so far, that is an amazing feat. Good luck with the final 3 cycles. After all the treatment you have been through, to keep digging deep is a testament to you and your inner strength. I’m going to try and do the same. At the end of the day, we’re doing it for our loved ones as well as ourselves.
Yes, difficult to make the decisions @Tulip29, to balance potential gain against bad side effects and quality of life being affected. It’s so often a roll of a dice as statistics are just that and any one of us may be on the wrong side of them. Hope you can get some answers in regards to your histology coming back HER2 negative after being positive originally and you have a treatment plan in place that you are comfortable with. Good luck with it all whichever way you decide to take it, you sound empowered and strong which is an inspiration.
Best wishes.xx
Hello all,
I was diagnosed in February HER2+ and all the same as yours. After my mastectomy in August the results showed that I had a 0.5cm lump left out of 7cm, clear lymph nodes. I was taking Phesgo non stop since March and started Kadcyla and was told is nothing comparing to all chemo I had before and all I went through. It is just going to be easy I can go back to work and continue to feel good.
First cycle I had horrible joint pain and was laying like a log for 4 day, painful even to lift a glass of water up.
Second cycle same joint pain but my gums started to bleed 15 hours non stop and after all that finished I started to have fever so went to A&E and got admitted to the hospital. I was in the hospital 8 days getting antibiotics as my liver went crazy and it looks like there was too much toxins for my liver and gallbladder and my body couldn’t get rid of it as quick as it was cleaning. So thank God no neutropenic sepsis just my body doesn’t want any more of this toxic treatments. Had a liver MRI and no scars all clear.
My specialist nurse came to check on me even she was surprised it knocked me down so much. Now all my treatments are suspended I will have a check up blood test next week and seeing Oncologist 12 December.
I am going to meditate over this and try to heal myself as much with my positive thinking as possibly can. I am 40 years old and this sickness is treatable so not giving up !!! Plenty of great adventure still waiting for us!!
Dear Nellby73, I’m so pleased to hear that you have been able to make a decision that you are comfortable with and I wish you well with it. Sadly I am still being punished for refusing Paclitaxol so its Herceptin or nothing for me. Ironically when I was refused Phesgo and asked for Herceptin instead (when biopsy showed HER2 positive) this was also refused. A decision that I considered to be immoral. Now that my tumour pathology has come back HER2 negative I am being recommended to have Herceptin monotherapy. You couldn’t make this up! I have agreed to just one for now and am urgently seeking a second opinion. Love Tulip x
Hi Tulip,
I’m sorry to hear it’s been so difficult for you and I hope a second opinion brings you some clarity. Phesgo was off the table for me after the histology results showed no spread to the lymph nodes I think and the choice became between Kadcyla and Herceptin.
Had the first cycle on Monday and so far, the side effects have been okay. Mostly fatigue and joint pain. I’ll see how I go over the next week or so and then after the second cycle. Taking it cycle by cycle and see how far I get. Always have Herceptin as back up if it gets too much.
During my research, I came across this article about HER2+ becoming HER2- after neoadjuvant chemo. Not sure if you’ve read it or it’s of any help, but thought I’d attach the link anyway.
HER2 changes to positive after neoadjuvant chemotherapy in breast cancer: A case report and literature review - PMC (nih.gov)
Best wishes with everything.xx
Hi @swagness,
How are you doing now? What a journey you’ve been on, so brave and strong. Great response to the neo-adjuvant chemo. Well done on giving Kadcyla a go, so sorry it was so terrible for you. Whereabouts are you at now? Hope you’re doing better now. Sending you a big hug, we’re strong and can all get through this.xx
@Nellby73 @Tulip29 @Dimpled @swagness
Hi ladies, I found this chat really helpful. I have triple positive BC and had ECT and Phesgo neoadjuvant which was really tough. I’ve recently had a lumpectomy but there was residual cancer found and so they’ve recommended I do a year of Kadcyla. I’m so nervous about all the side effects.
I’d be really interested to know how you all got on longer term?
Dear @isthisreal, Making treatment decisions is so scary! As I wasn’t offered Kadcyla because, although I had EC I refused the taxol so, although I had a ‘partial response’ (in reality a nil response) I was not ‘allowed’ Kadcyla so there is nothing I can contribute on this one. I had 9 injections of Herceptin. The first one put me in A&E. After 5 my heart was affected, and it was doing my head in having the drug when my tumour pathology was HER2 negative. Until one tries these drugs one has no idea how one will react/respond so always worth giving it a go, especially if risk of recurrence is deemed to be high. I wish you well. Love Tulip x
Hi @isthisreal,
So sorry, only just picked up your message. How are you doing? The treatment when you’re HER2+ is so gruelling and relentless. Kadcyla wasn’t as bad as I expected, manageable. I wasn’t able to return to work but it wasn’t anything like full blown chemo ( I told my children if it was, I’d stop and stick with Phesgo!) It has delayed any return to normality and the process of rebuilding strength after all the different treatments, and ultimately rebuilding my life. I’m v glad I did it though as I know in my heart I’ve thrown everything at preventing a recurrence. If I hadn’t, I would have always wondered and that would have affected my anxiety levels and mental health as I moved forward, Physically Kadcyla was manageable. Nothing like chemo. I found it was achiness in the first few days, fatigue and breathlessness as my blood levels dropped, dry mouth, fogginess of mind, but in the 3rd week I felt much better and was able to get out a bit, albeit playing it safe in regards to mixing with others. It was more than doable. I’m hoping my strength starts to return after a cold bug I picked up a week after my last cycle and the hysterectomy I’m having next week.
Hope you’re doing okay and are finding Kadcyla manageable. Any more advice or support you need, please just reach out.
Best wishes,
Helen.