HERCEPTIN FOR LIFE

Hi All,

I am fairly new to this site and this is my first post. I have HER 2+ breast cancer with liver mets. I have had a successful mastectomy and lymph node clearance and now await scans to see how chemotherapy and Herceptin have affected my liver mets. If anything remains I will have Radio Frequency Ablation, subject to tests showing that would be suitable. I have read posts on this site about RFA, and also Herceptin (of which I have had 5 treatments so far). The links are very useful.

My question is whether anyone else on this site is on Herceptin for life? My oncologist says that is necessary for me because of the metastatic nature of my cancer. I am privately insured and insurance is paying for the first 18 treatments of Herceptin but it will not cover anything beyond. Have others had such ongoing treatment funded on NHS please?

Thanks.

Verity

Hi I am on Herceptin for life as are many others on here, I have had 16 so far all on NHS so can’t comment on the protocol of private then NHS.

A couple of cycles ago I was sitting next to a lady who was having Herceptin for life, she’d been on it for eight years. Good luck.

CM
x

I just started Herceptin for primary BC but the onc nurse was saying someone with secondary BC gets Herceptin indefinately as long as heart tolerates it well and it’s working, that’s NHS.

Another nurse in the chemo unit told me recently one of their patients has Herceptin since 10 years, she was one of the first to get it at my hospital 10 years ago.

I understood it as a matter of fact and not funding that someone with HER2 pos secondary BC gets Herceptin as long as it works and is well tolerated.

I had 18 Herceptin after my primary diagnosis. I finished that treatment during the summer 2009. In December 2011 I was diagnosed with secondary and have been put on Herceptin for life, or as long as it is working AND that my heart can take it. If my heart shows any abnormality, I will stop to let it recover and then resume. Luckily from next month I will have it at home on the NHS.
Thank god the tap of my drippy nose has switched itself off. (one of the side effect of Herceptin as CM will confirm)

As 3network3 says, patients who are her2+ with 2ndaries are normally on herceptin permanently as long as it is working for them. I have been on it now for over 8 years and don’t have any problems with it. Mine is through the NHS and it is not unusual to find patients who start off in the private system and then move into the NHS system when the private insurers are no longer willing to fund. I think it is an amazing drug and am sure that without it I would not be here. I have extensive bone mets for 10 years now and have just herceptin and bisphosphonates.

Hope you get good news Verity that your liver mets are responding well.

Dawn
xx

Thank you everyone. Your replies are very helpful and encouraging!!
XX

hi ladies,
myself also will be on herceptin for life with lung mets, also taking heat tablets for heart after having hear issues before when i had it in 2010 dec up to oct with was only 15 of them but missed three because of heart. but so far i am fine now .
lorraine

hi again ladies,
i forgot to mention my onc said that if i do have heart issues again, she will request for me to have the other drug tykerb which is the same as the herceptin but with this one its does not affect the heart, it isnt actually on trial where i am in south wales at the moment but for special reqest they will consider, do know whether any of you have heard of this one lots if ladies have this drug also in the states.
lorraine x

Hi,

Yep I’m a herceptin lifer, seems to be working miracles for me and on the lung mets, I feel sure its herceptin that’s keeping me stable, so far had about 16 and just sorted out herceptin to be administered at home all via the NHS, I am so grateful to live in this country and be able to receive such amazing free health care. So far my MUGA scans have shown that my heart is fine in fact the nurse that gives me the herceptin said the last MUGA showed my heart was in good condition (long may it continue).

LollyPop - I have heard of the drug Tykerb but didn’t realize it has the same effect as herceptin will look into this one further, thanks for jolting my memory.

Sending love and light to all
sarahlousie xx

Hi

I’m another herceptin lifer, I’ve been on it for 3.5 years now. My onc said that if I become resistant to herceptin he will switch me to Tykerb (Lapatinib)

AlexD

Hi ladies

Not sure if posting on right thread but currently on docetaxol, herceptin and pamidronate. Last treatment for docetaxol in 3 weeks but will remain on herceptin and pamidronate for ever.
Had treatment today and it took a hour to get into a vein and eventually they had to use the other arm as veins have become so bad. Now they are advising me to have a portacath inserted and from reading the Macmillan leaflet I’m not sure that it’s a good idea.
Has anybody had this done and can you put my mind at ease? Any advice would be appreciated. Thanks.

Liz x

Liz I wonder what you read that makes you think it is not a good idea. There have been a number of posts recently about portacaths - if you do a search you will be able to read some of them. They are FANTASTIC!!! I have had mine for nearly 6 years now and if you are on on drugs longterm they are the best solution. They are inserted under the skin with nothing coming out and being visible. Some hospitals do it under general anaesthetic, others with just a local. The way mine is placed (about 2" below the collarbone) I find when it is accessed for taking bloods, or for putting herceptin through I don’t even feel the needle. There is no hunting for a vein so it is much easier for the nurses as well.

Dawn
xx

Hi Dawn

Thanks for your encouraging reply. Did as you suggested and put a search in on forum for portacath and they have made me feel a lot easier about having one done. Guess I was worried about infection and blood clot but the advantages seem to outweigh the disadvantages by far.
The hunt for a vein is becoming a nightmare so hopefully this will ease the situation. That’s the real godsend of this forum - that there are always the answers out there to put your mind at ease.
Many thanks.
Liz x

I am so glad it has helped you Liz. Can you imagine what it was like having breast cancer before forums/internet was around? That is how it was when I was diagnosed back in 1990. There really was nowhere to turn to other than maybe knowing someone else who had bc. But we all know how very different each persons dx is now. We didn’t even understand all that when I was dx. Forums like this and access to the internet must have changed patients’ knowledge so very much. I wonder how consultants etc. felt about all this as they began to see and be affected by those changes.

Hope you get a date soon for your portacath.

Dawn
xx

Hi,

I too have a portocath. It is fantastic. Whenever I need a canula fitted (for things other than chemo) I am prodded and poked with nurses huffing and puffing that my veins are hard to find. It has made me appreciate how easy it is when the port is used for chemo/Herceptin.
GO FOR IT! You will save time and feel less like a pin cushion, I expect!
Good luck.

Vxx

I was first diagnosed in April 2007 and after chemo had 18 cycles of Herceptin. I was diagnosed again in July 2009 and have had Herceptin every 3 weeks since then. I too was told I would stay on it as long as it continued to work or if it affected my heart. I had dips in my MUGA results the first time around and have again recently. My latest result was 50% which is on the bordeline really. My oncologist said if it goes down any further I can have tablets to help with that too rather than stop the Herceptin. This all depends too on how the heart looks and she said it looked fine just a low result. I have not had any problems with Herceptin at all and it doesnt affect my life in any way other than going to the Macmillan Unit at my hospital for an hour every 3 weeks. I do wonder what is the longest someone has been stable on Herceptin for? When I get to 100 I am going to celebrate!!

Chrissi x

I sat next to a lady in the unit a little while back and she had been on it for 8 years and was still going strong, looking and feeling very well.