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Breast Cancer Haven
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Herceptin

I have finished my chemo but because I was HER2 positive I have Herceptin every three weeks until April next year I have had five injections with another thirteen to go I am also on Letrosol hormone tablets for at least five years I can cope with the aches in the joints but since having my last Herceptin injection have suffered from shortning of breath so cant have anymore until I get the Mugger results on my heart has anyone else experienced this it is quite worrying I know Herceptin can effect your heart.

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Hi,

I had Herception every 3 weeks for 12 months after my chemo and had to have regular heart scans too. Though I had some irregular breathing the change wasn't enough for them to do anything else.

I'm currently on tamoxifen, 2.5 years done, 2.5 years left.

I wish you well

S xx

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Thank you SarahL321 at least I know it has happened to someone else my last heart scan was 56 per cent be interesting to see if it has changed.

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Hi yes I had to stop herceptin twice to give my heart chance to recover. The normal cut off point for treatment in the UK is 51%. I was prescribed bisoprololfumerate to assist my heart. The breaks meant my heart had chance to recover enough to continue but I will be on heart meds for life. I see it as no issue as long as I am here. Keep on keeping on xx

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Hi Sarawill it has been mentioned about meds to protect the heart thank you for your reply

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Yes I have congestive heart failure and was only able to do two herception. I think it was the taxol that hurt my heart though.. I worry more that I couldn't finish the herception than the heart ❤️ but they keep the heart under control with Meds..I wish you the very best on your muga...hang in there🌸🌸🌸

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yes will have to hope the muga comes up with a good results otherwise it will be meds.

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Hi everyone had my muga test last week the reading in April was 56 it is now 20 I was rushed to A&E to be put on a heart monitor because my pulse rate was through the roof and put on better blockers to bring it down luckily it worked but I seem to be one of the rare cases that Herceptin damages the heart so no more Herceptin for me had five rounds of the 18 I was supposed to have now got to see a cardiologist chemo was a walk in the park compared to this but onwards and upwards as they say.

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Hi, I am new to this site. I was diagnosed with stage 3 HER2+ on 22/12/16. I've done 6 months of chemo and had a WLE and full axillary node clearance. I'm now struggling with a burst seroma which is delaying radiotherapy but more worrying is that I should have had 2 herceptin injections but haven't been able to because my heart was down to 45%. I'm worried sick because I know I need the herceptin. I'm on heart meds but feel frantic with worry. All the drugs have put me into menopause so with all of this going on I'm feeling pretty anxious. Are there any alternatives to herceptin? I am so angry at my body, I've never smoked, rarely drank alcohol, thin bordering on skinny and was running marathons this time last year. Sorry for ranting, I'm very frightened. Thankyou so much.

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Yes it doesn't seem right that there are people out there whom abuse there bodies and nothing happens to them then there are people like you who look after there body and xxxx happen. I can understand how frightened you are so please talk to your family friends and consultant about how you feel. My thoughts and prayers are with you.

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Hi,how many Herceptin have you had ? This hasn't happened to me luckily, I've now had 14 and been okay but have seen others on the Macmillan online breast cancer forum who have/are having similar problems to you , may be worth having a look on there and comparing problems ? And it is rubbish , i am HER2+ and ER+ and 52 and for some reason my body is trying to kick-start my ovaries so may need them removing later this year ....

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Thanks for the support, I'm finding it really tough because although on MacMillan and other forums there are people with the same problem, there don't appear to be any alternatives to herceptin or solutions to the heart problems. At the same time, everything I read says herceptin is the lifesaver for women with HER2 type cancer. We seem to be a group that isn't really catered for and left to panic! I had 4 doses in my last chemo rounds but haven't been able to have any leg injections. I have a heart test on 15 September.

Sorry to hear you are having complications Woomot, but you have done well with the herceptin, there is certainly a lot more to cancer than chemo and surgery. I'm also ER+ so have started tamoxifen in the absence of herceptin. The menopausal symptoms are awful.

Best wishes to anyone dealing with the endless challenges of this illness.

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Fingers crossed your heart scan is more normal on the 15th x

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As so many people were kind enough to reply to my panic, I wanted to let you know that the heart medications have done their job, my scan on Friday showed the LVEF had increased from 45-65% so I will be getting my first herceptin injection tomorrow. I'm hoping I cope with it better as it is not going to be administered with a taxane, and won't be through a vein. Apparently these factors can make a difference. Thankyou for all the advice and best wishes, I'm ready for the next stage of the fight, if only the burst seroma would hurry up and heal.....best wishes.

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Hi Raggarty pleased your LVEF has improved so much mine had plummeted from 56% to 20% I wont be having Herceptin again I had my Herceptin in my thigh don't know if that makes a difference but it is two months since I had my last chemo and injection they say it could reverse it takes about three months so come November I am having an MRI to see whats happened fingers crossed with the meds I might be lucky. I wish you good luck with your journey best wishes.

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WoW! Interesting experiences. I had treatment in America, and it was very different. I started Kadcyla (Herceptin + DM1 chemo) and Perjeta with an ejection fraction of 35%. We never even considered stopping. That being said, I did have ECHOs every 3 months, and it stayed stable.

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That is really interesting. My initial 4 herceptin doses were with docetaxol and perjeta and those 4 cycles knocked me for six. The previous 4 were EC and not exactly pleasant but certainly easier. The 50%LVEF figure is EU standard (I live in Spain). Also treatment should be suspended under EU Law if LVEF drops by 10% or more. I feel so lucky my heart recovered but I'm sure there are other important factors and starting point and stability are doubtless amongst them. How many doses of herceptin did you have in total (if you don't mind me asking!)?

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First I had 4 dose dense ‘Red Devil’ chemo. Then I had 18 continuous doses (every 3 weeks) of Kadcyla (Herceptin+DM1 chemo) and Perjeta.

Now I’m on Letrozole (Femara) and Neratinib (Nerlynx) daily.

*All treatment received from the USA.

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I had forgotten about the red peeing! However we get these drugs I guess we just need to be glad for them although in my case it's another 3 am tamoxifen induced hot flush........I hope that you are doing well, it's interesting to hear your story. I think perjeta has been a game changer for a lot of us.

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