Sorry this is a late reply but not been on this site for years. I was diagnosed with a multicentric large stage 3a tumour, grade three. Her2+ & estrogen+ I had the full works including 6 months of Herceptin. I had chemo first FEC-T 6 rouunds with Herceptin injections started after starting Taxotere) and my very large tumour totally disappeared -pathology could find no sign of it after my masectomy. However the treatment caused heart problms namely left ventricle damage and a racing hesrt. I chose to stop Herceptin after six months. My left ventricle damage repaired but have since developed intermittant atrial fibulation, which is largely managed with drugs. I am still in remission seven years later and glad I didnt continue the herceptin jabs. Ive also completed seven years of examastane but am on a break now as its really affecting my quality of life. I also had reconstruction surgery DIEP, breast uplift and nipple reconstruction five years ago which looks fab.
My oncologist told me just this week that for me six moths of herceptin is just as effective as twelve. I am glad I stopped as I think my heart would have been seriously damaged if I had done twelve months.
Tale care you lovely ladies.......the process is truly gruelling but I wish you all a sucessful out come like mine. None of us know how long we are destined to be on this planet but we bc ladies have been given the heads up that nothing is for ever so am determined to enjoy whatever time is allocated to me. Big big hugs. Xxx
Thank you very much ladies for your response to my subject. You've helped me so much by giving me a little more confidence. I now have postponed my next Herceptin injection on Thursday (as I have been feeling so awful) and have a meeting with my consultant on Friday. I'll let you know what happens.
Thank you again for sharing with me your experiences...
All the very best to you all. PBxxxxx
If I could turn back time I wish I’d have had only 6 months of H&P. I ended up having 15 out of the scheduled 18 doses and had to stop due to damage to my heart. That was just over 2 years ago and my heart never recovered or improved at all. 5 months ago I was diagnosed with Heart Failure, attributed to my breast cancer treatment.
I had a complete response to the chemotherapy but my oncologist never gave me the option of 6 months of H&P. He didn’t suggest any break during the treatment either.
My experience is that my oncologist concentrated on ‘throwing everything at the cancer’ but didn’t necessarily consider the longer term repercussions. As I said, at the end of my chemotherapy there was no evidence of disease but I still went on to have radiotherapy, a mastectomy (through choice) and an ANC. My opinion is that because only a small minority of patients go on to develop heart failure it isn’t really given the consideration it deserves.
When you consider how many toxic treatments we are given it’s no wonder some of us suffer the consequences for the rest of our lives. On the other hand, we should be grateful we have the rest of our lives!
If you are experiencing cardiac symptoms and have already managed 14 doses I would give serious consideration to stopping or at least pausing the treatment. It’s all very well your consultant saying it ‘probably isn’t Herceptin’ but it’s your body and your choice.
In July 2020 before starting chemo my oncologist said I was in the group for whom 6 months of Herceptin could be considered enough based on that study. He followed that discussion up in a phone consultation after the 6 months asking me if I wanted to stop. I tolerated Herceptin well, it only required the effort to go to a lot of appointments for bloods, heart checks and for the treatment itself and I decided to complete 12 months.
I read up on that study but found two different trials analysing the same data came to opposite conclusions ie the other one said non inferiority of 6 months treatment had not been proved. The non-recurrence percentage was, if I recall correctly, 0.4% higher if treatment was for the full 12 months. The different conclusions were because the studies used different margins for error in their calculations so in one 0.4% was within that margin and in the other it was not. Basically, any increased benefit is very small and if I had been suffering bad side effects I would have stopped early.
Herceptin is an expensive drug plus all the costs of tests and of administering it so if it can be concluded that 6 months is non inferior I guess that will become standard, but I was not quite convinced that conclusion had been reached yet.
Hi, sorry I would have posted this against your original ask around 6 vs 12 months Herceptin injections but I appear to be technologically challenged currently and can't work it out!
I am on 12 months Herceptin. I had a private second opinion on my diagnosis (long story, mainly for information and to re-assure me). The Professor I consulted is an internationally renown Oncologist - he mentioned that things are moving now towards 6 months Herceptin rather than 12 and indicated a number of trials. He did say it depends on specific patient circumstances which did fit me. I had chemotherapy prior to surgery and as a result following surgery under the microscope they could not find my tumour or that in the lymph nodes - they were able to say I had a Complete Pathological Response (they term it a PCR). The PCR was in response to the chemotherapy and in those circumstances he said I would qualify for less herceptin and interestingly no radiotherapy (which I did end up opting for). I have carried on with the year's herceptin and the radiotherapy anyway.
So it may depend on the patient's specific cancer and their response to treatment but it is worrying that others are not aware of the 6 vs 12 months. I guess those more connected to the cutting edge are more informed and it eventually cascades to others in due course.
Ha, after having a great outcome, its all gone the wrong way since and I found a second lump in my remaining breast which is Her2- and ER positive so you could say the entire opposite cancer! Second mastectomy due week on Monday so I will then have the joys of tamoxifen alongside herceptin.
You have my sympathy re the side effects, I have stomach cramps, spontaneous liquid poo, nausea and some magnificent indigestion/heartburn which lasts a week. Its horrid and sounds like yours are horrendous. Big hug.
I wonder if anyone has heard about/mentioned to their Oncologist about the 2018 (I think?) PERSEPHONE trial, where:
"(it was) shown that 6-month trastuzumab treatment is non-inferior to 12-month treatment in patients with HER2-positive early breast cancer, with less cardiotoxicity and fewer severe adverse events. These results support consideration of reduced duration trastuzumab for women at similar risk of recurrence as to those included in the trial."
I am suffering from side effects of Herceptin (tight throat and heavy chest, generally feeling sometimes very unwell) although my oncologist says it probably isn't Herceptin giving me the symptoms!? I am also taking Anastrazole and Mirtazapine and am on my 14th (out of 17) Herceptin injection. I would be very grateful to hear from others about their experiences and what their oncologists have said about having a break from Herceptin or stopping it?
Thank you. Hope that all makes sense...my brain is not working like it used to!!!