Stopping herceptin after 5

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Hi all

After discussions with my oncologist I have made the decision to stop herceptin after five sessions. This is numerous reasons: firstly, they wanted to give me a hickman line as my veins are shot and it was agony trying repeatedly to get a vein and failing. Secondly, my latest two heart scans have been 52 adn 53 - heart was 69 when I started and I’m just not feeling that great on it. I get palpitations, slight breathlessness.

It was my oncologist that gave me the option of quitting. He said it wasn’t yes decided just how long herceptin shoujld be given for to make it most efficient. He said the UK followed a study done by drug companies who recommend women like me have it for 12 months. But… they have a vested interest in pushing for 12 months. He then said there was a recent study done in finland I think where patients had herceptin for only 9 weeks, 1 session per week. He said having had 5 lots I’ve had the equivalent of 15 weeks. These patients did just as well as those who had had herceptin for 12 months. Has anyone else made the decision to quit, anyone else having palpitations?! Just wondering if I’m alone on this journey. I have to say I am relieved to have finished, I don’t want to go on tablets or be left wiht a heart complaint at the end of it all. I have had chemo and rads and ovaries removed and on arimidex. Without herceptin he said my stats were around 90% chance of no recurrence.

Would be interested to hear from anyone else who’s stopped. THanks, Carrie xx

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Good luck Carrie. I think your onc is right-there are so many conflicting opinions about how long we should have herceptin. I’m assuming from your post that you were on it for primary BC? If so, it sounds as if you have other options and a wide enough safety net to stop the treatment. I’m having it for metastatic disease, and will therefore be very reluctant to stop , as I have few options available to me beyond this.

I’m a bit confused about your onc’s theory that by having 5 treatments it converts to 15. On that premise, the Finnish study participants who had had 9 sessions would equate to 27. Surely it’s the number of treatments, rather than whether they’re given over 1 week or 3 that’s important?

I have a Hickman Line-and love it. It makes everything so much easier-no fiddling with veins, very little discomfort, and blood samples can be taken from it too. The procedure to have it inserted is quite straightforward,takes less than an hour, and doesn’t need an anaesthetic. Although if you are a worrier/highly stressed, they can offer you sedation. I’d hate to think that having a line inserted was playing a major part in your decision to stop having the herceptin-I wouldn’t be without my line!

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Hi Carrie

I think it’s a very personal thing having to make a decision like that - and what is right for you wouldn’t necessarily be right for another. I was almost in the complete reverse situation of you.

At my initial discussions re herceptin, I was told that I would have to have a hickman line fitted, as my last chemo leaked into my veins and completely knackered them! I didn’t want it, but it was a case of no herceptin without it. Now, I wouldn’t be without it and wish I’d had it for the chemo as well!!

At the first heart scan prior to treatment, my ejection fraction score was only 51. My Onc said that they usually wouldn’t even start treatment at that level - as their cut off point for terminating treatment is a score of 50. Unfortunately though, I have a recurrence prognosis of somewhere around 89% - so we both agreed that the benefits of the treatment in my case far outweighed the risk of suffering heart problems. They put me on to heart scans after every 2 treatments (instead of the usual 4) and after the first 2 my heart rate had gone up to 52. I have just had number 4, and oncologist told me today that she thinks they will leave heart scan till treatment number 6, as she doubts it is causing any problems.

I also suffer from palpitations and breathlessness, though not to a worrying degree (not to me anyway!)

Not sure that anything I’ve said will have been of any help lol - but I guess I just wanted to say that if you are happy with the decision, and your onc agrees, then I believe it is the right decision for you. Sometimes the stress of worrying about whether you are/are not doing the right thing is worse than actually making the decision!

Saw your other post about life after treatment and have to agree with you. I have recently gone back to work after 10 months of mastectomy, chemo, rads, more chemo etc etc and feel great about it. Was weighed at the clinic today and have lost 24 lbs since treatment started - so that was a huge boost (was overweight before lol) - yes I still worry about recurrence etc (in fact waiting for bone scan results at the moment!) - but there are some days now where it doesn’t cross my mind at all. I wouldn’t say I’m completely back to normal (or that I ever will be !) but I’m doing my best to get there.

Good luck with everything

margaret x

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Hi Elaine

He explained the study in Finland was given on a weekly basis for 9 weeks - they were just given an amount sufficient for the one week - when we get given three lots, that is three doses in the one session, i.e. we get more per three weekly session, than the ones given per week… does that make sense… so he said as i’d had 5 lots of hercept, every three weeks, this equates to 15 lots of herceptin. He printed off the Finland study for me to take home, this had no differentiation in recurrence for those on herceptin for 9 weeks, versus those on it for 12 months. It was enough to convince me it wasn’t worth my while continuing, especially with it affecting my heart and me not wanting a) to be on heart tablets and b) a hickman line putting in. So he said having 5 was OK and not worth further risk.

Margaret, you are right it is a very personal decision and some tolerate it mch better than others. I am just so scared of heart damage but I know we are closely monitored.

Good luck to you both, wishing you good days ahead, carrie xx

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With you now! I blame my confusion on chemo brain…It certainly sounds that you’ve made the right decision for you-good luck for the future,x

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Carrie,
I had to stop Herceptin after 4 and that was way back in 2004. I had grade 3 stage2 ER- and
her 2+++. Herceptin made me very weak and left ventrical was reading 39% after the 3rd injection.
I went on to have one more. My oncologist too at that time said that they did not know
how much herceptin was the optimal, and that eventhough I was given the arm of a trial
that was for 2 years maybe I had had the correct amount, they couldn’t tell. So here Iam 5 years after dx and doing very well with ned. I think if the Herceptin was affecting you badly then you did the right thing for you. I did have regrets initially that I finished it so early, but the reality is that I could not keep going with it.
But it is not all doom and gloom after Herceptin has stopped, I’m doing really well just had my 5 year check up and everything is fine.
Good luck and I hope this has helped you.

Regards,
Kieran

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hi i just thought iwould add i have been asked to do a herceptin trial. one arm is to do it for 6 months the other for a year. the idea is to reduce how long we all have it in england. i decided against doing it as i had given up chemo after 4 instead of having 6 that i wanted to give this my best shot. but at the back of my mind i know that it would prob be ok to stop after 6 months if i couldnt cope. the reason because the trial did 6 months and they do do a lot of reasearch before deciding on these trilas. so hope this helps and good luck.

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Hi everyone and in particular Carrie.
I was supposed to have 18 treatments but my heart just couldn’t handle it. I started with an ejection fraction of 54% and it gradually dropped so they rested me and then suddenly without warning it dropped to 33%. The treatment was stopped after just 11.
My oncologist said that the tests in Finland had shown that even three or four doses were optimal so she abandoned the treatment.

My heart was supposed to recover but 9 months on it was still shonky! I am gradually recuperating although I am on Beta Blockers and Ramipril and am only just beginning to see an improvement a year later!

Good luck everyone.

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went for my three weekly Iv herceptin Wednesday and because i’m coughing and my MUGGA was V low the out reach oncology nurse rang the hospital onc unit to get me a xray and an appointment to see my oncologist the day after . He informed me that my xray i had just had was clear but because of the MUGGA he has to stop the herceptin . he’ll book another MUGGA for three months time and if it improves he’ll restart treatment…

cant say i’m happy about it as i had only recived 4 IV’s of herceptin but i do understand why he cant continue to prescribe herceptin
susan

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No one should be taking Herceptin without arming themselves with 3 heart supplements.  My naturopathic/oncologist has me on Ubiquinol 100 mg 2x/day, L-Carnitine 500 mg- 2 caps 2x/day, and Hawthorn Phytosome  200mg  2 caps 2x/day. Certainly one should run this by your naturopath.   My ejection fraction began as 71%, was 71% after 3 months of Herceptin every 3 weeks, and now is again 71% after 6 months of Herceptin every 3 weeks.  I have mild palpitations and slight shortness of breath with exertion and I am 63 years old.  I would have liked to stop the Herceptin at 6 months after having read the Finnish study, but a good friend (a gastroenterologist) made a good point- he said, "you don’t want to be 1 year out and have a reaccurrance and wish you had stayed on the Herceptin for a year (17 treatments,)  But please, everyone on Herceptin, please get on these supplements to protect your heart!  You only have one!  God bless.  ~Patricia

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Hi all my ejection fraction was 52% at the outset, but I have taken Pycnogenol & Coenzyme Q10 & it has gone up to 65%.  If you google it, they say it can improve EF by 22% in their research.  My onc is mystified as to why it’s improved as she said it never rises. xx

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Hi, I have just been for my mugga scan after 10 sessions of herceptin. My heart started at 58 it dropped to 54 now 53, I am struggling with breathlessness after radiotherapy. Having a lot of joint pain. They have put me on ramiprill and said they will monitor heart again after next herceptin. I was initially given a course of 18, but was told there was reasearch being conducted into wether it was just as effective to give 10/15 

im very reluctant to go on heart meds but also been reassured that heart will return to normal function after I stop taking it about 2/3 months after?? Its a complete  mine field amd I think the only thing you can do is listen to your body and do what feels right to you. I am going to carry on alittle while longer as I don’t want to risk the recurrence of the cancer but if it drops agin I might stop complete. 

Good luck love. It’s not a easy journy for us is it xxx

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Elja70 - sorry to hear that Herceptin has affected your heart and that you are also suffering other side effects from the Herceptin and radiotherapy. Hopefully the Ramipril will help your heart recover, and may also help with your breathing. It sounds as though your oncologist is taking it seriously, and is considering stopping the Herceptin if it doesn’t help, as the Herceptin you have already had may be enough. I don’t think the trial results you refer to have been published yet, but it is worth asking for more information if you are concerned about stopping early.

 

Lou Green - I can understand why you are worried about starting Herceptin only so soon after finishing chemotherapy, but this is normal because it is supposed to follow on. I assume you have already had or are having Herceptin with the last 3 or 4 cycles of chemotherapy, which counts towards the 12 month total course. So if you have already had 3 with the chemotherapy, you will have 15 more injections every 3 weeks to make up the total 18. The possible effects on the heart are the most worrying thing about Herceptin, and unfortunately, a minority of people like Elja70 will get them​. They will monitor your heart regularly throughout to check whether it is being affected, and will give you appropriate medication if this is the case.

 

I had Herceptin 8/18 (injection 5/15) on Monday, and will be having my next echocardiogram in a couple of weeks. As Aine says, you do get some effects at first, but they ease off, so it is difficult to know whether they are effects of Herceptin or lingering effects of the chemotherapy. I was told that the chemotherapy drugs can hang around in your body for a few months afterwards, so it can take a while before some of the SEs go away. The SEs from chemotherapy can also get worse for a short time after it finishes, before they start to get better. I found this was the case with the fatigue, and with my skin and nails.

 

The main effects I have had so far are hot flushes and hypersensitive skin on my face, to the extent that I couldn’t use any cream or moisturiser, some aches and pains though nothing serious, slight numbness/ tingling in my fingers and toes, a runny nose, and mild diarrhoea. Other people won’t necessarily get the same, as it affects everyone differently.

 

I now realise that the skin sensitivity was mostly a continuation of the effects of the last cycle of chemotherapy, as it has now eased a lot, and so have the aches and pains. I still get hot flushes after each injection, which gradually tail off over the three week cycle. I also still have the runny nose and slightly numb fingers, and have to rush to the loo occasionally, though it is nowhere near as bad as the ‘Tax Trots.’