I am in treatment for Her2 positive breast cancer. No lymph node involvement and 8mm in size. I have my final Paclitaxel chemo this Friday, number 12 - yay! I will continue with Herceptin to complete 9 cycles (6 months) but have read that most other countries still recommend 12 months as standard. Offering only 6 months of Herceptin will save the NHS £100 million! Am I just being cynical… feeling a bit short changed! What are others’ experiences/duration/diagnosis please?
Thank you!
Weird isn’t it that everyone is given similar, but different treatment. Mine was a small area of grade 3 mixed into an area of DCIS, no node involvement.
I had four sessions of Abraxane (nab-Paclitaxel) which was given every three weeks. I started Herceptin at the same time and will be having it for 18 sessions (I think), basically for a year anyway. I am also having radiotherapy, which starts next month.
Hi,
I’m HER2+ and been told I’ll have 18 sessions of Phesgo (type of Herceptin). The 18 is inclusive of the 3 I already had with my latest chemo, Docetaxel. So I’ll have a further 15 on its own now I’ve finished chemo.
Did you get any Herceptin with your chemo which would explain the lower amount you’ll now be getting?
Xx
Thanks for your response. I’m having 9 Herceptin in total and I’ve been having it every 3 weeks since starting chemo in January. My chemo was weekly for 12 weeks so I have 5 Herceptin only to go. The study called ‘Persephone’ is advocating 6 months for ‘some’ breast cancer patients but although 8mm Her2 + tumour is small, it’s not that small and most people seem to still be getting a full year of it.
Yes absolutely! Mine was Grade 2… maybe that’s the difference?? How large was your tumour if you don’t mind me asking? Ah, so you had chemo every 3 weeks whereas mine was weekly. I just wish I could understand what the criteria is for different treatments. I know it’s individualised but wish I had more knowledge of the science!
Dear @sarahc_123 my tumour was 24mm grade 3 her2 pos at biopsy and her2 neg post op. I have been prescribed 18 injections of herceptin but have chosen to discontinue after 9. Tulip xxx
I had triple positive grade 3 invasive carcinoma measuring 2.5cm plus high grade DCIS and received 18 lots of Phesgo (Herceptin and Perjeta). I had one affected node.
I should have had 12 weeks of Paclitaxel after my surgery. Unfortunately I had two allergic reactions, so I was switched to Abraxane which was given every three weeks. My diagnosis was invasive ductal carcinoma of 12mm, with 3mm of grade 3 ER-, HER2+
Thanks Tulip,
Your her2 status changed after surgery??
I’m coming round to being happier with 9. I can’t wait to be done! xx
Thank you… I hope you are all done with your treatment now, recovering and getting on with your life. xxx
Thank you! Goodness, that sounds tough. It’s all so scary… I hope you are doing better now. xxx
Hi I’m bilateral (both) with a grade 2. 2cm ER+ HER+ and grade 1 9mm ER+. Had. 12 weekly Paclitaxel with Herceptin for 18 cycles. I due my 11th this week.
I think I read on the forum someone else who was on the trial for 9 cycles. I don’t remember if they commented on the criteria. I can only assume they have done trials with some people, only receiving 9 cycles with good outcomes. If you are on a trial I would assume you would have been fully informed of the benefits and risks and if you weren’t happy you would have been offered the 18 cycles. If not I would ask for some reassurance. (That’s what I would do)
This cancer thing is so hard to compare with others as it’s so individualised. Having Herceptin for 18 cycles does mean the treatment time is much longer and makes it harder to move on. Every 3 weeks I have 3/4 bad days flu like symptoms sometimes diarrhoea, although I’m grateful it’s better than chemotherapy.
I wish you well and hope that your treatment is successful and in future maybe more people will benefit from the shorter cycles.
Take care 
Hi
I had triple positive - no lymph node - 50mm - 6 rounds of chemo - after 3 rounds the tumour was not visible - they could only find the marker seed from biopsy. 6 rounds chemo / red devil - 5 rounds radio + 3 extra boosters.
I did 6 months Herceptin injections - there is a trial/report called Persephone that was carried out during covid I think that showed very little added benefit to 12 months injections as apposed to 6 months given the heart damage risks etc.
I have just had my 2 year mammogram and all clear so glad I chose the 6 months option - 6 months less potential heart damage.
Now devil pill for 10 years.
It is a choice that we can make - I made mine and happy with the advice and options I received at the time.
Mine is the same as you except I’m half way through having 18 Herceptin injections…ouchy!
I finished chemo in October, and finished 10 sessions of radiotherapy last Monday and started the little 10year pills a couple of months ago.
Everyone seems to have different treatment for different length of time.
I have put my trust in the oncologist and team so I just do and go when I’m told.
Hi Sarah_123…I have almost the same diagnosis as you. Her2+, DCIS, pre cancerous calcification. 2×7mm tumours. Mastectomy and sentinal lymph node biopsy. Lymph nodes were clear, thankfully. My treatment is exactly the same as you. Weekly paclitaxel, 3 weekly herceptin injections × 9. I can only assume folk on it for a year might have larger tumours or were higher grade/stage? I asked if there was a scan at end of treatment to check if ant cancer left. Oncologist said no. I asked how can i be sure its all gone…she said you can’t, you basically just have to cross your fingers…her exact words. Good luck with the rest of your treatment. I have 4 jabs to go.
Thank you. All well, thanks - just dealing with some fatigue from the Tamoxifen I am on but I have adjusted my expectations of how much I can do and just have to fit in some rest time each day!
I have 4 jabs left too. Thank you, that’s reassuring as I was feeling like I was part of the plan to save the NHS money! Apparently, giving women herceptin x 9, rather than 18 will save 100 million a year!
I asked too and also “how do you know that DCIS isn’t everywhere??” and they said “We don’t!” Honest, I suppose! I’m concentrating on diet, lifestyle and exercise… which was great before but I’m sure I can tweak. I’m not going back to alcohol for example… only a very moderate drinker before but if it helps.
Good luck to you! We should finish herceptin at the same time! I hate them!
I’m not on a trial… due to small size of 8mm her2 positive and no lymph nodes, this is what my trust recommends now. There was a study called ‘Persephone’ which concluded that for some, 6 months is as effective as 12 months and with less heart problems. I just fitted the criteria I guess.
Chemo is ticked off and waiting for radiotherapy now… herceptin continues. A long old road but planning some nice goals and trips this summer!
Good luck to you and getting to the end. xxx
I mentioned your post to the nurse that did my latest Herceptin and they said they thought the trial had finished. They also confirmed that some people are offered only 9 doses. They said the trial was partly about saving money for the NHS but also to reduce the number of treatments for the patients which reduces side effects such as heart damage. The Herceptin injection is over £1000 per dose and you then have to add in staff time etc, so I’m sure it will save the NHS a lot of money.
The trial must have confirmed that 9 doses are good for some and that’s great as your treatment plan is much shorter and you can get on with your life more quickly. It must be great to have only 4 left. I still have 7 to go, I’ve had 11 so far. I feel so much better 3 months after radiotheraphy but the Herceptin causes flu like symptoms for 3/4 days. The positive is it’s only a few days every 3 weeks which allows me to do more the rest of the time.
Here’s to the end of our treatment
Oh that’s really interesting, thanks for asking them. Wow though, £1,000 per injection!! I will try to be more appreciative when they do my injection on Friday! Yes, I read that £100 million pounds a year will be saved if offered this way to eligible patients. I am glad I’m only having 9, rather than 18, but at the same time want to reduce my risk as much as I possibly can. I asked my onco today and she just said that I fitted all the criteria for having 9 doses.
All the best to you!