Hi.
I’m struggling with an unexpected decision I have to make. 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 have just started Letrozole. I’ve been offered 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 but only a partial response to chemo (3cm to 0.9cm in my case). 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 didn’t fare too well with chemo, with low hb throughout and lowered plateletsand neutrophils too, which caused me to be admitted to a&e with pancytopenia. I also suffer with mild ME so my fatigue levels were bad and I didn’t leave the house except for medical appts throughout. I’m now 8 weeks since chemo finished and doing better bus still v fatigued and haven’t returned to work. I’m v concerned about Kadcyla knocking me back down again and it being for a long time (14 cycles, 3 weeks apart).
Just wondering if you have any info on the disease free stats for women with early stage bc with no lymph node involvement compared to Phesgo? Does a complete pathological response only refer to neoadjuvant chemo result, not after surgery too?
Thanks for any support or advice on ths. Feel I’m trying to make a big decision with no info or stats to guide me.
Hi Nellby73
I am in a very similar position. I have triple positive EBC with 45mm tumour and DCIS. I had 4 x EC (3 weekly) and 12 x Paxciltaxel (weekly) neoadjuvant for six months and a mastectomy with temporary expander implant two weeks ago. I have had 7 phesgo injections (3 weekly) which I started alongside Paxciltaxel. I have 11 more scheduled and would have finished targeted therapy in June. I had a 90% response to chemo and targeted therapy, which I was very happy with. Apparently that is good for Her2+ cancers and at least I know that it I did have a recurrence that chemo works. It was horrible and I would have been gutted if I (and my friends and family) had gone through all that chemo with limited results. They did find some micromestastasis in one lymph node. It was very small but obviously still left over following chemo. We couldn’t see any lymph node involvement in the scans but it worries me what else is there. The surgeon decided not to so a full clearance I had raised concerns about lymphoedema before and there is a new thought that full clearances are not necessarily the right action and could be excessive treatment.
They are also suggesting I now move to Kadcyla. I agree the list of side effects looks daunting. I must admit I shed a tear at the realisation that I would be having chemo again by IV. Does seem so much more invasive than the injections. I felt awful throughout but especially with EC. I also had suffered from chronic fatigue prior to cancer and it knocked me for six again. I did do some research and Kadcyla did have lower risk of recurrence than chemo and trasmaztub alone but I couldn’t find a direct comparison to Phesgo vs Kadcyla, so I’d be very interested if you find anything. I am going to ask my oncologist on Friday.
In the meantime, I have had an issue with my mastectomy incision and have some necrosis. I am on antibiotics and will be going back into theatre. Probably next week. I had 200ml of fluid drained off yesterday. Just feels like my body just isn’t playing ball. It’s one thing after another and difficult not to blame myself (even though I know it’s nonsensical). I hate the thought of having to tell my family and friends that there is even more to come. More lifts and childcare. I’m self employed and we were already on our knees financially.
Sorry that was a lot!! But it sounds like you’d understand and I can certainly understand where you are. I would ask your oncologist for their full thought process and rationale for use of Kadcyla in your particular case and the views of others in the MDT so you are confident in your treatment choice. That is what I will be doing.
Sending healing wishes,
Laura x
Hi Laura,
Wow, what an inspiration you are. Well done for being so brave and getting this far along your treatment plan. Thank you for sharing your journey with me. It is so gruelling isn’t it and when you feel you’re starting to get somehwere, suddenly the goalposts shift and there is another hurdle to get over, pushing tretment end date back once again. I know it is a good thing there are so many different options and treatment is tailored to you as an individual but having to keep digging deep as new obstacles occur is so draining.
After speaking to my Oncologist for half an hour on the phone on Tuesday, I have decided to give Kadcyla a try and I start on Monday with the first of 14 cycles. It is because I didn’t have a complete pathological response. He feels I could gain maybe up to 5% in my 15 year survivability chances, compared to just Herceptin and with being relatively young (50,) I felt I should go for it. 5% is 5% at the end of the day. The reason we couldn’t find much of a direct comparison between Phesgo and Kadcyla is apparently it isn’t a direct choice between those two drugs in our position. It was a choice between Herceptin and Kadcyla which made the percentage gain a bit higher. The research done on this is the Katherine trial conducted by CRUK and shows a clear percentage gain in favour of Kadcyla, even in our subgroup of HR+, HER2+, localised early stage bc. On balance, I decided if I didn’t at least give the Kadcyla a try, I’d always regret it, and if it turns out to be dreadful like DC over the Summer, I can always switch back to Herceptin. I am concerned about the side effects, particularly the fatigue and anaemia which I still have after chemo, but hopefully it will be manageable and I can at least get out of the house a bit over the next 10 months and do some things I enjoy, unlike when I was on full blown chemo.
Hope the appointment with your Oncologist goes well today and you gain some clarity about your next steps surgery and treatment wise. You’re doing amazingly, being a great role model for your children, showing such strength to do what you can to get to a much better place again.
Please keep in touch, let me know how you’re doing.
Best wishes,
Helen.xx
I hope you don’t mind me joining your conversation.
My daughter aged 39 was diagnosed with Her2+ two years ago.She had neo adjuvant chemo 8 sessions with an almost clear pathological response,lumpectomy and radiotherapy.
She was then offered Kadcyla for 14 sessions every three weeks.
Initially she too thought all her treatment was over and was concerned about the side effects especially after having a tough time with her chemo.
However,she then decided that belts and braces and her gratitude for being offered this expensive drug was going to be in her best interest.Obviously everyone is different to how they react to their treatment but the side effects were nowhere near as bad as her chemo.Yes she was tired for the first few days and did still take caution with mixing but she managed to go to Centre Parcs with her young son and all our family and even returned to work gradually towards the end of the treatment.
Thank you so much @blondegirl for sharing your daughter’s experience of Kadcyla, it has really helped to hear a positive story. It has been a very hard decision to make, but ultimately I seem to have come to the same conclusion as your daughter -I’ve come this far, ;let’s contunue to throw everything I can at this to give me the best chance of reducing a recurrence in the future. Have my first round of Kadcyla on Monday and I’m just praying it doesn’t knock me down too much and I can have some semblance of a life during the 14 cycles, as I’m just starting to live a bit again after chemo and I was hoping to return to work part time in the New Year (I’m a self employed Psychotherapist).
All the best to your daughter and your family.xx
Hello everyone,
I’m another hoping nobody minds me chipping in. My story in a nutshell, is:
I was diagnosed with primary invasive breast cancer in May 23 (2.2cm lump & 3 lymph nodes affected). HER2+ve and estriogen +ve. I was 59 at the time.
My first big choice was surgery first or chemo. I chose chemo & am in the midst of my 7th and last cycle. I’ve had 3 x EC followed by 4 x docetaxel with Phesgo. It feels to have been a long journey already! Surgery, a lumpectomy plus full node clearance is planned for 15th December and I know there will be some amount of radiotherapy in the new year.
From 2 x MRIs along the way, I’ve had as good a response to chemo as anyone could have hoped. So, I like others here was a little surprised at my last oncologist visit when the Consultant talked about, depending on the pathology results after surgery, switching to Kadcyla.
I, again like others, at first thought this would be extremely disappointing, but overall in preparation for perhaps having to make that decision (by then I will be at least 5 doses into Phesgo…), these are my thoughts:
-
I am fortunate because of having chemo first that it’s been possible to much more closely track my response to chemo rather than chemo being a bit of a mopping up exercise post surgery.
-
Once in the system and in treatment, eeking things out longer feels from here better than the whole emotional concept of treatment a second time because something has come back and being treated for a recurrence. I would always wonder ‘what if’ about having Kadcyla if I decide against it now.
-
Similarly when it comes to fatigue and other side-effects, my thinking right now is that recovering from treatment and getting such things behind me, then to have to restart and go backwards again is the most daunting of all, so I’ll keep going as long as I have to to have the best chance of being clear.
-
Kadcyla is relatively new and it takes many years to really understand the different impacts on survival rates. Maybe we are fortunate to be getting it at this stage and in 10 years time it will be standard for everyone HER2+ve to switch to Kad. after neoadjuvant & surgery.
-
I guess a downside of the neo-adjuvant/chemo first approach is that the doctors don’t know the full story until after surgery and so there’s far more likely to be a change of plan or goalposts part way through treatment. I guess I’d just not taken that in enough in the early days.
-
I am older and have managed to work from home, albeit shorter hours and less productively throughout my treatment. Work have been very supportive. Had I a young family and felt the need to get back to normal life asap, I might feel differently.
I hope this is helpful. It’s certainly helped me to set out my thoughts here in writing. Thanks for reading.
Hi @suedot.
Thank you for your thoughts on the Kadcyla dilemma. It is a difficult one in some ways, as we’ve all been through so much before we even get to this stage -chemo, surgery and Phesgo, and hoping to start to rebuild our lives and take more control back again, but then on the other hand, to get this far and not carry on throwing everything at it, is potentially unwise as well. As you said, better now when it’s still a primary diagnosis and we’re in the midst of it all than later if a recurrence occurs. My Oncologist believing it could add up to 4-5% to survivability over 15 years compared to Herceptin alone, is a percentage high enough for me to give it a really good go. It was nice to start to gain a bit of strength back after such a tough Summer (I barely left the house except for medical appointments, the chemo was so gruelling) but if I gain extra time the other end of all this, to be with my children and who knows meet a nice person down the track (I’m currently separated which happened before this diagnosis), I’d be crazy to not at least give it a try and see if I can cope with it.
Good luck with your last cycle -well done for getting this far and I hope the surgery goes well on December 15th.
Keep in touch, best wishes.
Helen.xx
Thank you for replying so soon. Indeed I will keep in touch. These decisions are hard, but having forums to share with others experiencing similar issues really helps. Take care. X
Hello all - I’m another person butting in here. Hope that’s OK.
Thank you so much for all your considered comments about this as it’s something that I’ve been mulling over. Suedot, you described it perfectly, I could almost be your twin except I was diagnosed 4 months after you so still in the relatively early stages of chemo. My second T + Phesgo last week, have 2 more and then move onto 3 x EC in January, continuing the Phego before surgery.
My tumour is rather more extensive within the breast and nodes and whilst we all hope for PCR at surgery, I’ll be surprised if I get there. At the risk of getting ahead of myself too much (I’m working hard to let go my love of forward plans!), I too have been reading up about Kadcyla and improved outcomes like Helen. I realise this option will end up making the process much longer, potentially into 2025 which is a bit depressing. I can understand that’s really tough for blondegirl’s daughter and family.
Laura, I’m with you on the nodes issue and my surgeon has already said that he tries to avoid full clearance, but I will park that issue at the moment. Well done on partially getting the other side of surgery and hope the next one sorts the problems for you.
Please can we all stay in touch about this? I would be grateful to hear about your thoughts and progress as we go forward. I sometimes post on October 2023 chemo starters for practical advice etc, but this topic is probably more pertinent for me personally going forward. With good wishes to you all.
Sam
Hi
I have been on 3 weekly Phesgo for nearly two years but it is no longer effective so I am having to change to Kadcyla and I am terrified of the side effects being cumulative to those I already have.
Hi. I’ve found Kadcyla mostly okay. I started it 2 months after 6 cycles of chemo so was v worried about how it was going to effect me, but it has been more than manageable. I was on Phesgo before, during the chemo and for 2 rounds afterwards and Kadcyla was harder in comparison but still okay, and I’ve actually found I’ve coped better with it as I’ve gone along, as I moved further away from chemo and radiotherapy. Good luck with starting Kadcyla.x
@Nellby73 thanks for the update. Im in a similar position now and trying to research Kadcyla a bit as it seems likely I’ll end up going down this route too so finding this post was helpful. Can I ask as well, I’ve been on filgrastrim white blood cell and injections during EC/Docetacel - do you get these with Kadcyla too?
@Thetawave @suedot @sopranosam how are you all getting on? Did you start Kadcyla?
Hiya. Hope your treatment is going well. If you end up on the Kadcyla route, it has proved to be manageable for me, although I haven’t returned to work as yet and have been careful with how much mixing I have done, particularly in the middle of the cycle when the levels are at their lowest. I haven’t had the Filgrastrim injection, the levels I assume don’t drop to that degree like during full chemo. I’m having number 13 of 14 cycles next week. Nearly there. Felt insurmountable when I started but I’ve steadily chipped away at it.
Hope the EC/Docetaxol wasn’t too hellish and the rest of your treatment plan goes well.
Best wishes,
Helen.
Hi @sopranosam
How’s it going? Did you go down the Kadcyla route? Hope you’re coping okay on it and the side effects are manageable. Would love to know how you’re doing.
Take care,
Helen.xx
Thanks for getting back to me - useful information to know and glad it’s went ok for you and you’ve almost completed them now 
Hi Belle
Everyone’s treatment is different but I haven’t needed to take the white blood cell injections during kadcyla but I did with EC & Paxitaxel. I think generally you don’t need them but of course depends on your own reaction to chemo.
Hope that helps x
Thanks How have you found Kadcyla in comparison to previous chemo?
Kadcyla has been different. I am leading a much more ‘normal’ life and handling the side effects. People say how well I look but I don’t feel that way. With EC and taxal, I felt very ill for first 7-10 days and then had two relatively easier weeks. Kadcyla the nausea, upset stomach, burping, tiredness, reflux and aching is all the time but it is on a far lower scale and has become manageable with life.
Everyone reacts differently and I know from the BCN that I seem to be particularly prone to side effects but on the plus have always had good bloods and no hospital stays. We’re all so different. 
Thanks for the further info - much appreciated! Its good to get a balanced view of how people are getting on with it (good and bad) rather than just reading the information booklets
Thanks for asking after me!
Amazingly, given the large extent of my tumour and lymph node involvement at initial diagnosis, I managed to get to complete pathological response after chemo/surgery which I really wasn’t expecting and was obviously delighted to discover. As a result I’ve continued with the Phesgo injections which went alongside my chemo. However, I have a friend who has just commenced Kadcyla as she didn’t quite make PCR at surgery. She’s had a few heart and liver issues (which she also struggled with during chemo) and finds that she feels distinctly sub-par for 5 or 6 days after each one at the moment, but also says she is feeling stronger the further away she gets from chemo. She’s hopeful that future rounds will be smoother.
Just goes to prove we all have different responses. I do hope things get easier for you, especially when the body-battering effects of chemo, rads and surgery start to fade. Wishing you all the best. Sam