I found this if you haven’t already seen it.
Hi,
Im in a facebook group called kadcyla Support!
There’s lots of chat about herceptin on that, it seems patients in America get less herceptin than us. They also have a conversation (in messenger) about a simialr trial. Might help to join & hear from people in a similar situation.
Good luck
Hi, it’s been 13yrs now since I was diagnosed, I got asked at the beginning if would like to try the herceptin for 6 months instead of a year, I chose to take the full year of it, which at that time was getting every 3 weeks intravenous. To be quite honest I would rather have been over treated, that is my opinion. The doctors & nurses were all fantastic. I was 38 at the time of when 1st got diagnosed.
I had the 18 doses of Herceptin ( 1st 3 in with last 3 chemo cycles) followed by 15 injections. This was 3 years ago but I remember my oncologist saying they were looking at greatly reducing the dosage as it was felt that fewer doses were as effective as the 18.
Thank you that has really helped me .
I agreed to have six treatments only if Herceptin and was placed on a clinical trial. Not sure which one. My oncologist recommends this because be says ‘the risks of heart damage is very real’ and so in the future it is likely less will be given. I read a few papers online and they seemed
To support this. Who knows?? I’m not a medic and I hope I not making a mistake but I’ve decided to go with his advice and think six is enough. Now just the anasteozole to cope with!
You are lucky with HER2 as that’s the one that Herceptin can deal with. I was diagnosed in 2012 and had a lumpectomy, followed by chemo and radiotherapy. I insisted for a long time in only having Herceptin every 4 weeks, not 3 weeks as is normally given. They’ve just put me back onto 3 weeks (not sure why)_. I am still here in 2024, but I do have Peripheral Neuropathy (funny feet) - which is a side effect of either Docytaxol or Leterosole or Pertuzamab. They ought to warn people about that side effect.
I was diagnosed Nov 23 with grade 1, 19mm and am on Herceptin for a year.
I have read contradictory studies over whether 6 or 12 months is best but all seem to say definitely no more than 12 months due to it increasing the risk of other female cancers.
I’ve requested to see the gynaecologist ref elective surgery to remove ovaries / Fallopian tubes due to increased risk. Appt 3rd July. My sister opted for this elective surgery after her diagnosis of grade 2 approx 8 years ago & her having 2 friends who did get secondary cancers 
I feel this is all a black cloud over me for the rest of my life / struggling to stay positive
I was diagnosed with Her2 and have had chemo, lumpectomy, and radiotherapy.
I was advised of the trial but told I might be too late after looking into it and getting advice from nurses, clinicians and a personal friend who works at Maggies plus his wife who has had a mastectomy the general concensus was that I could go agead and yes, research now shows they have been overtreating for years.
I was suffering so many side effects I chose to opt into the trial when offered.
Later they advised me I had 10 injections so whilst not formally on the trial I am being monitored.
If I can be part of research that may help shorten peoples treatments successfully then thats good enough for me.
I think its so personal and like someone said, maybe wish I hadnt been given the choice but progress has to start somewhere
Hi @hiker50
Sorry to hear your diagnosis. May I ask if you’ve been tested for genetics? This reason I ask is I was, it was negative, but there was talk about preventative surgery due to BRCA genes including ovary/fallopian tubes that you mentioned.
I was diagnosed just over a year ago and continue with Herceptin, Zoledronic acid infusions and Letrozole. I have days that are good and bad, I can cry at the drop of a hat, especially if it’s anything to do with my diagnosis. I have booked a Moving Forward course in July hoping that will help. Is the course something you could consider?
- Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.
You may want to talk to someone and the BCN nurses are available here
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
- Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
The forum is so supportive, it’s been a lifeline for me. I don’t have a local group or MacMillan or Maggie’s locally.
Take care
Hi @jarretty
Welcome to the forum, I’m sorry you didn’t find us sooner as there are so many support groups for monthly chemo and radiotherapy starters.
I notice you mention you are HER2+ and there is a group for HER2 buddies if you would like to join see my post on 26 May 2024 for the link. We’d love to see you there.
I think it’s great you opted for the trial. I’ve just had my 13th injection and have a MUGA (nuclear medicine) heart scan and my ejection fraction from the left ventricle has reduced by 8%. Well within normal ranges but proves the cardio toxicity of the drug. I was bi lateral, two primary tumours at the same time so the full 18 was recommended for me, even with a family history of heart issues.
Take care
Hi, I was really interested in your post , thank you for starting it.
I also am fortunate to have been told I have had a complete pathological response, but I haven’t been offered the trial you mentioned. It’s spurred me on to ask about it as I’m of the belief that over treatment is wide spread. I would opt in if I am a good candidate for it . I get your dilemma, as a non specialist I want decisions to be made for me as they have more expertise.
Wishing you well with your decision and please let us know what you decide on.
Thank you
Hi. I am on the HER2 Radical trial. Like you I agonised over whether to participate or not. I wish I hadn’t been asked to decide, as this was a mental burden I felt I could do without. In the end I decided to say yes to the trial and see what the side effects were like when I was having the Herceptin without other chemo. I seemed to be getting peripheral neuropathy back on Herceptin alone, so on the basis they might stop my treatment anyway because of that I decided to go ahead with the trial. I can’t feel my fingertips and have terrible pins and needles in my arms at night. I read the journal articles (as well as the handout) and there seemed to be a very slight difference in positive outcomes (<1% difference) on half the treatments. Note that is my interpretation of the journal articles and others may disagree. Anyway I think the main thing is to be comfortable with whatever decision you make. Good luck and I hope you have a positive outcome.
Thank you I have decided to go on the trail ! I’ve not noticed any major side effects of Herceptin other than feeling fatigue . I’m based in North Wales I’m unsure if it is national trial ?
I hope you keep well thank you for your response x
Hi I’m based in North Wales so wonder if the trial is local to me . I decided to do the trail mainly because of the cardiotoxic side effects of Herceptin and feeling constantly tired ! I’m feeling like my old self now and want to build on that .
I’ll keep you updated I meet with the oncologist 13/7 to consent . Just glad I’ve decided x
Waiting in the cancer centre in Bangor Hospital for my last Herceptin Injection . I consented to the trial and feel ok about it . My Oncologist was very positive about my prognosis I feel I have been very lucky , the treatment although brutal at times was worth it .
Thank you all for answering my concerns. Onward and upward for me thank goodness x
Great news @ali67 . I’ve just had my 16/18, 2 more to go. I’m feeling a bit rough today but it only lasts a few days compared to chemo.
I’ve recently attended a Moving forward course and can highly recommended it if you haven’t attended on yet.
- Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.
Take care🥰
Thank you I’ve finished my treatment thank goodness . I will look into that x