Hi all just wondering if there is anyone else out there that has been having Herceptin as a mono-therapy as long as I have? It will be 5years in April (along with Ibandronic Acid for my bones). Oncologist is talking about NICE stopping long term Herceptin as although no trials done they feel that it is not necessary to give Herceptin over a long period of time. Onc feels that probably has done all it is going to do. I have had regular recurrences, usually every 12months or so, before the use of Herceptin. Since Herceptin I have remained very well and coped really well with the drug. Is there anyone who has been on Herceptin as long as me? Can understand that Onc wants to stop treatment but am a little scared at prospect of nothing and just waiting for things to go wrong again. Onc has agreed to a bone scan to check to see where we are at with progression as I am having a lot of rib pain etc. Already had a hip replaced as a result of progression. My biggest worry has been my liver as I had big problems with that before Herceptin but since it has shown stable disease. I know Herceptin does not cross the bone, brain barrier but feel a little shaky about just stopping treatment. I am ER- so no hormone treatment. Just wondering if anyone else out there in a similar situation. Thanks for your help
Hi
My onc told me he has had someone on for 7 years and that I will be on it forever or until it stops working.
Best wishes
Sue
Hi, I’ve only been on Herceptin for about 18 months as I have secondary’s to the spine. My understanding is that I shall be on this for the rest of my life or until disease break through.
My onc has never indicated to me that I would come off it. if it was working well, which in your case it seems to be. I think I would be inclined to shout and scream like hell at this suggestion, particularly as I like you are also ER-, so it’s not as if we have a full tool box. Once disease has broken through again, I don’t think anyone is sure whether an immunity might be built up against herceptin so as to make it useless again.
Take care
Hi wizzyden,
Like Celeste and yourself I am er/pr neg and have been on herceptin for just over 5 years and bisphosphonates for 6 years. I am treated at the Royal Marsden and like celestes onc have been told I will be on it for as long as it is working for me.
I don’t know where you are treated but I would be tempted to ask him why patients at the Royal Marsden are not being told this. I think NICE will come in for a huge backlash if they are having a say in this. I do wonder though if your hospital is under pressure to cut back spending.
Hope you get some satisfactory answers.
dawnhc
xxx
Hi this is my first attempt at chatting on the forum. I have a query like dawnhc and wizzydenin in March 09 about long term treatment of herceptin. I have been on herceptin for just over 5 years June 04 for liver secondaries and so thankful I have been well and no recurrence. My liver scans have been stable. But now my oncologist is mentioning coming off herceptin and monitoring closely to see what happens. Does anyone know of any evidence re long term use of herceptin and most important what are the chances of recurrence of disease on discontinuation of herceptin in this situation? As you can imagine I am anxious about stopping it and would like to know all facts when I next meet my consultant in October. Many thanks if anyone knows anything at all or can point me in the right direction to find out more.
Thanks fi x
Hi
Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
I have also attached a link to our publication on Herceptin
breastcancercare.org.uk/server/show/nav.30/changeTemplate/PublicationDisplay/publicationId/123
Best wishes
June, moderator
Hi,
I have been on Herceptin for 2 and a half years, and despite some progression, will be staying on it for the forseable future. The NICE secondary breast cancer guidelines say that Herceptin should be stopped if there is progression, but there is no research into this area, and my oncologist feels that were I not having hercepin, progression may have been worse. So she is ignoring the NICE guidelines, and most of the oncologists she works with are too.
Nicky
Hi all
I’ve been on herceptin for a year now for bone mets. There has been progression within the bone, but thankfully so far not to organs. But I too wonder at what point onc might think that herceptin has run its course, so interested to learn that there ARE NICE guidelines about stopping herceptin, and also that many oncs do ignore them! I guess like with most things it’s about cost vs benefit, as herceptin is not cheap.
Best wishes.
Alison x
Hi i have been on herceptain for 9 months and have been told that i will not be able to have it after progression - now one in my liver has grown ( others are stable)they have decided not to start another chemo so they can carry on herceptain for another couple of months - but then will move me to another chemo - and herceptain will be withdrawn… so it seems my onc is following nice, which is a shame! jayne
Hi fi,
I think wizzy you and me have been on herceptin roughly the same amount of time - I started in January 04. I have often wondered what the benefit is of being on the drug permanently but what be very anxious if I was told I was being taken off it - even for a low MUGA scan. I know my cancer was very aggressive for the 14 years before I started herceptin and even though I have the extensive bone mets it has been so good these past few years not to have more and more episodes of this disease encroaching on yet more of my body. I think if I was told it was being stopped I would feel quite helpless to know how to fight such a decision. In your place fi I would want to know what the evidence was for stopping the treatment if you have no signs of progression. If it looked as if you were going to get no say in it, what monitoring would take place given that it was known your ca. was aggressive. I really hope this is not something we are going to see more and more of - I know the drug is very expensive, but surely it has reached the time when the price should be falling. Does anyone know more about that - ?ChristineMH.
And BCC (June) please, reference to BCCs publication on herceptin isn’t relevant to those of us with secondaries who have been taking this drug for years. Maybe if new info is ‘out there’ about taking patients off the drug it would be more helpful to refer to that.
Dawn
xx
Hi…I’m not her2 but have seen these trials (from the CRUK website) are taking place…I’ll post them over a couple of postings…all sorts of conditions but might be worth a read? And huge apologies if you already know all about them! I also wondered if Lapatinib is now routinely offered after Herceptin? …x
A trial looking at a new type of vaccine to treat advanced breast cancer
This trial is looking at a new vaccine called polyHER2neu to treat breast cancer that has spread.
Doctors usually treat advanced breast cancer with chemotherapy, hormone therapy or possibly Herceptin. But these treatments don’t always work as well as we’d like. This trial is looking at a new vaccine called polyHER2neu for breast cancer that has spread.
The polyHER2neu vaccine is a type of immunotherapy. Because it is a DNA vaccine you may also hear it called gene therapy. Immune system cells search for and kill abnormal cells. But they don’t always recognise cancer cells as being abnormal. The polyHER2neu vaccine works by teaching immune cells to recognise certain proteins (antigens) made by breast cancer cells. The immune cells can then find the breast cancer cells and kill them. But researchers are not yet sure how well this will work.
This is a phase 1 trial of an experimental treatment. The aims of this trial are to find out
The best dose of polyHER2neu vaccine to give
What the side effects are
What happens to polyHER2neu inside the body
What effect polyHER2neu has on the immune system
How well polyHER2neu works for breast cancer that has spread
Recruitment
Starts 26/10/2006
Ends 26/10/2009
Phase
Phase 1
Who can enter this trial
You can enter this trial if you
Have breast cancer that has spread, apart from to your brain or a large area of your lungs (if your cancer has spread only to a small area of your lungs you may still be able to take part)
Have already had all the standard treatments available
Have breast cancer cells that have a lot of a protein called HER 2 (are ‘HER-2 positive’)
Have immune system cells that make a certain type of protein called HLA A2
Have cancer that can be measured on a CT scan or X-ray
Are well enough to take part (performance status 0, 1)
Have satisfactory heart test results
Are willing to use effective contraception if there is any chance that you or your partner could become pregnant
Are over 18 years old
You cannot enter this trial if you
Have had systemic treatment such as chemotherapy or Herceptin in the last 2 months
Have cancer that has spread to your brain
Have cancer that has spread to your lungs
Have had any other cancer in the last 5 years except carcinoma in situ of the cervix or basal cell carcinoma that have been removed by surgery (resected)
Are on steroids, or have had other treatment that lowers your resistance to infection, within 6 weeks of starting the trial (please note, you must never stop steroid treatment before talking to your doctor)
Are pregnant or breastfeeding
Trial design
This is a phase 1 trial of an experimental treatment. It will recruit 12 people in total. Everyone taking part in the trial will have the polyHER2neu vaccine.
You will have the polyHER2neu vaccine as an injection into a muscle either in your upper arm or thigh. You will have 1 injection every 2 weeks. You will have 3 injections altogether.
The first 3 people taking part will have the lowest dose of polyHER2neu. If they don’t have any serious side effects, the next 3 people will have a higher dose. If no one has serious side effects, this will continue until all 12 people have had the vaccine. Researchers call this a ‘dose escalation study’.
Hospital visits
You will see the doctors and have some tests before you start the trial. The tests include
Physical examination
Blood tests
Heart tests (ECG)
Heart ultrasound (echocardiogram)
Chest X-ray
CT scan of your chest, abdomen and pelvis
Before each injection, you will have a
Physical examination
Blood test
Heart test (ECG)
Heart ultrasound (echocardiogram) (before your last injection)
Two weeks after your last injection you will have
Physical examination
Blood test
Heart test (ECG)
Four weeks after your last injection you will have
Physical examination
Blood test
Heart test (ECG)
Heart ultrasound (echocardiogram)
CT scan of your chest, abdomen and pelvis
After you finish treatment, you will continue to see your own doctor.
Side effects
You may have flu like symptoms the day after you have each injection.
Also, after having this type of immunotherapy a small number of patients have started to show signs of a heart problem called ‘heart failure’. This is when the heart cannot pump blood around the body so easily. This is why you will have regular heart tests during the trial.
This is a new and experimental treatment that has not been given to patients before. So there may be other side effects that we don’t know about yet.
Location of trial
Leeds
Contact details
The Information Nurses
Cancer Research UK
P.O.Box 123
61, Lincoln’s Inn Fields
London
WC2A 3PX
Tel: 020 7061 8355
Email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%61%6e%63%65%72%2e%69%6e%66%6f%40%63%61%6e%63%65%72%2e%6f%72%67%2e%75%6b%22%3e%63%61%6e%63%65%72%2e%69%6e%66%6f%40%63%61%6e%63%65%72%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
Chief Investigator
Professor Peter Selby
Supported by
Cancer Research UK
Experimental Cancer Medicine Centre (ECMC)
Another trial from the CRUK site…x
A trial of panobinostat (LBH589) for breast cancer that has spread and is not responding to Herceptin
This trial is looking at a new drug called panobinostat for metastatic breast cancer that is HER2 positive and is not responding to trastuzumab (Herceptin).
If breast cancer produces a lot of a protein called HER2, doctors may treat it with trastuzumab. Trastuzumab is a monoclonal antibody. It targets the HER2 protein and can stop breast cancer cells growing. But sometimes HER2 positive breast cancer doesn’t respond to trastuzumab, or the treatment stops working.
Panobinostat (also known as LBH589) is a drug that blocks enzymes called deacetylases (pronounced dee-as-et-isle-azes). Cells need these enzymes to grow and divide. Blocking them may stop cancer growing.
In this trial, researchers are trying to find out if having panobinostat with trastuzumab helps women with HER2 positive breast cancer that has spread to other parts of the body. The aims of the trial are to
Find a safe dose of panobinostat that you can have alongside trastuzumab
See if having panobinostat with trastuzumab helps to slow down or stop breast cancer growing
Learn more about the side effects
Recruitment
Starts 10/04/2008
Ends 22/05/2010
Phase
Phase 1/2
Who can enter this trial
You can enter this trial if you
Have breast cancer that has spread to other parts of your body (is metastatic), is HER2 positive and scans show has got bigger in the last 3 months
Have already had trastuzumab (Herceptin) as part of your treatment and your cancer grew, either while you were having it, or within 6 months of having the last dose
Are well enough to take part (performance status 0, 1 or 2)
Have satisfactory blood test results
Are female and at least 18 years old
Are willing to use reliable contraception during the trial and for 3 months afterwards if there is any chance you could become pregnant
You cannot enter this trial if you
Have cancer that has spread to your brain and is causing symptoms
Have had more than 2 types of chemotherapy for metastatic breast cancer
Have had chemotherapy with lomustine, carmustine, streptozocin or mitomycin in the last 6 weeks; capecitabine in the last 2 weeks or any other type of chemotherapy in the last 4 weeks
Have had radiotherapy in the last 4 weeks or have previously had radiotherapy that involved more than a third of your bone marrow (you can check this with your doctor)
Have had an experimental drug as part of another clinical trial in the last 4 weeks
Have started taking drugs called bisphosphonates in the last 4 weeks
Have already had drugs that are similar to panobinostat
Take an epilepsy drug called valproic acid (unless you are able to stop taking it with the agreement of your doctor)
Take drugs that block enzymes called CYP3A4 and CYP3A5 (you can check this with your doctor)
Have bleeding problems or take blood thinning drugs such as warfarin, unless it is a very low dose
Have any problems that would make it difficult for you to absorb tablets
Have diarrhoea unless it is very mild
Have a build up of fluid in the body, for example around your lungs (pleural effusion), and it is causing symptoms
Have heart problems or take medication that could affect your heart (your doctor can advise you about this)
Have kidney disease or any other serious medical condition that would make is unsafe for you to take part in this trial
Trial design
This is an international trial. It will recruit over 100 women in different countries. The trial is in 2 parts. In the first part, the researchers are trying to find a safe dose of panobinostat to have with trastuzumab.
The first few women taking part will have the lowest dose of panobinostat. If they don’t have any serious side effects, the next few women will have a higher dose. And so on, until they find the best dose to give. This is called a ‘dose escalation study’. Once the researchers have worked out the best dose to give, all the women joining the second part of the trial will have this dose of panobinostat.
Everybody taking part will have trastuzumab through a drip into a vein (an infusion) once a week for 3 weeks. Each 3 week period is called a cycle of treatment.
You may have panobinostat through a drip on the same days as you have the first and second infusions of trastuzumab. Or you may have it as tablets that you take at home 3 times a week. The trial team will tell you how you are going to have treatment. You cannot choose. This is called randomisation.
After the first 3 week cycle of treatment, you start the next cycle straight away. As long as you don’t have bad side effects, you can carry on having treatment for as long as it helps you.
The trial team will ask your permission to take a sample of tissue (a biopsy) from your cancer. And they will ask you to give extra blood samples. They will study these samples to learn more about how panobinostat and trastuzumab work together and how genes affect the way people respond to treatment. If you don’t want to give these samples for research, you don’t have to. You can still take part in the trial.
Hospital visits
You will see the doctors and have some tests before you start treatment. The tests include
Physical examination
Blood tests
Chest X-ray
Tests to see how well your heart is working such as an ECG, echocardiogram and MUGA scan
CT scan or PET scan
You go to hospital 5 times in the first cycle of treatment and 4 times in the second cycle. After that, you go to hospital once a week.
During the trial, you have
Regular blood tests and ECGs
A CT scan after 2 cycles of treatment and then every 6 to 9 weeks
An echocardiogram every 12 weeks
After you finish treatment you will see the doctors and have more scans. You then have one more appointment with the trial team about a month later.
Side effects
As panobinostat is a new drug, there may be some side effects we don’t know about yet. Possible side effects include
Tiredness (fatigue)
Loss of appetite or changed sense of taste
Diarrhoea
Sickness
A drop in the number of blood cells leading to an increased risk of infection, tiredness, bruising and bleeding problems
The side effects of trastuzumab include
Chills, fever or flu like symptoms
Diarrhoea
Tummy (abdominal) pain
Joint and muscle pain
A drop in the number of blood cells
Even though you have had trastuzumab before, it is possible that the side effects may be different when you have it at the same time at panobinostat. Trastuzumab can cause heart problems, which can be serious. The trial team will monitor how well your heart is working throughout the trial.
There is more information about the side effects of trastuzumab on CancerHelp UK.
Location of trial
Birmingham
London
Manchester
Contact details
The Information Nurses
Cancer Research UK
P.O. Box 123
61, Lincoln’s Inn Fields
London
WC2A 3PX
Tel: 020 7061 8355
Email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%61%6e%63%65%72%2e%69%6e%66%6f%40%63%61%6e%63%65%72%2e%6f%72%67%2e%75%6b%22%3e%63%61%6e%63%65%72%2e%69%6e%66%6f%40%63%61%6e%63%65%72%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
Chief Investigator
Dr Dan Rea
Supported by
Experimental Cancer Medicine Centre (ECMC)
Novartis
Thanks Belinda really useful information.
Goldensun, yup I would need a really good reason in your shoes, if my onc were to ‘muck about’ with a stable condition, whatever NICE do or do not say. After all we try so hard to achieve cancer ‘stability, quiessence, remission’ whatever you like to call it, it’s cetainly a decision that deserves a challenge.
Hi all Many thanks for all comments. It’s good to know other people are in the same situation on long term herceptin and keeping well plus interested in this dilemma. I m aware of the NICE guidelines and hope this may be a support in the case to continue Herceptin as my interpretation is that Herceptin should only be discontinued on progression of the disease or experiencing side effects.
My oncologist suggested there may be a chance that I’m cured and do not need Herceptin but reassured me that they will monitor me carefully. But it feels a bit like playing a game of Russian Roulette with the ‘crash’ team standing by. But I presume no assurances that chemo or Herceptin again would hold cancer if disease was to return.
For almost 5 years I have had 3 monthly scans and living life to the full in 3 monthly bursts trying to adapt to the anxiety of every 3 months the doubt/working hard to think positively about scan results. Only in 2009 have I been changed to 6 monthly scans and relaxing slightly then bombshell of question about Herceptin continuation.
I can understand the concern of medical profession to have long term treatment unnecessarily and concerns of long term treatment side effects etc. But I wonder if there are any evidence from US and the early trials of long term side effects. Does anybody know the longest time anyone on Herceptin? I also wonder about evidence of women who have had to discontinue Herceptin due to side effects?
Psychologically if I do have to come off Herceptin then I suspect I’ll need great deal of support.
Really interested to find out more for October meeting so informed for the discussion.
Many thanks for all your support and suggestions. I’ll call the Helpline to note if they can find out anymore on the evidence.
Meanwhile enjoying life and my 3 weekly Herceptin. fi x
Hi Goldensun
Good to hear Herceptin has been so successful for you, I totally sympathise with your reluctance to come off it.
With regards to what is the longest anyone has been on Herceptin, I recall the conversation I had with my Oncologist in October last year, when it was found that my cancer had become Her2+ and that I would be starting Herceptin. He told me he had a patient who went onto Herceptin as soon as it came out in the yr 2000 and was still on it then, so that was 8 years. Next time I see him I will ask if she is still on it now.
Good luck
Linda
I was diagnosed in May of 2000 with metastatic breast cancer. Had a lumpectomy done. Had 16 lymph nodes removed and 8 nodes were positive. Further testing revealed 5 masses in my liver and one in one of my lungs. I began on Taxotere with Herceptin (the latest wonder drug of the times). after 7 months of weekly treatments, I was suddenly unable to walk due to nerve damage. However, I learned to walk again (took me several months)but my hard head would not let me give up. My Taxotere treatment was stopped but I continued to get Herceptin weekly for the next 5 years. Then I trusted my doctor enough to go to the treatment every two weeks for the next two years. Then I started to go every three weeks. I have been at this for 9 years and still going…I have had no signs of recurrence and no other side effects from the Herceptin. IT IS MY MIRACLE DRUG.
My treatment will continue until recurrence…keep up your spirits. It can and does work!
Hi Everyone,
Funny I was searching about this situation with Herceptin and NICE. I have just met with my Oncologist who advised me that I will be continuing with Herceptin just as long as he can pass it under the eyes of NICE.
I have been on it for over 2 years now and he said it was ‘possible’ that i may be in remission! I feel scared as if he takes me off it then i totally expect to have my cancer back.
I have secondary breast cancer in my liver and this is my life line.
Would be interesting to hear other comments about what happens if you come off Herceptin.
Lou x
Hi Lou - firstly I didn’t think ‘remission’ was a word that was used in the field of secondary breast cancer, but own onc talks of ‘no evidence of disease’ or ‘quiessence’.
I think if i was in your shoes, I would prefer not to go down the road of the’possible’ because as you seem all too aware it seems equally to be ‘possibly not’ too!
I certainly would challenge this mightily, - although how i am not entirely sure - initally you need to express your unwillingness to go down this route,. perhaops he could go and experiment on a close relative or something, perhaps he could show you the trials that support this view, and ultimately (and i do hope there are more options than this) you could contact the media. I am hoping that someone else comes along with better options in between.
very best of luck - it frightens me to hell to think of what might happen to the rest of us, if he succeeds with this.
Hi
My name is Julie, i was diagnosed at 34 in Feb 2004 had chemo and radiotherapy, and in Oct 2005 the cancer came back for good…i’ve since had a double mastectomy and now on long term herceptin. I’ve been on it for 6 years this October and all seems to be going ok.
The cancer had moved to my sternum but very tiny, so I’m now on zoladex as well as Herceptin and arimidex, side affects awful but if it does the job then i can’t complain. Since being on herception and zoladex it hasn’t moved anywhere else, in fact the scans show signs of improvement in the sternum.
I have yearly scans or more frequent if I request, and next Friday i will be having my 100th Herceptin treatment.
Who knows how long my treatment will work but for now, all good so I’m happy with that.
xxxxxx
Hi - just to say I found all your comments about the success of Herceptin so encouraging. I had primary BC in early 2000 and no recurrence till March 2009. That was just one tiny tumour on my pelvis, but more appeared in October 2010 - liver and more bones. I was given weekly Taxol and Herceptin and back on the old trusty Tamoxifen. I am still getting the Herceptin every 3 weeks and scans are still showing “continuing improvement” (whatever that means!). But as ever for those of us with SBC,there is that wee niggle of how long it will all keep working. So to hear from some of you still getting Herceptin after many years, is so encouraging. I know that doesn’t mean it will work long term for me, but it has worked for you, so that’s a great start!
Thanks ladies - this is what Breast Cancer Care forum is all about
Rosie xxxx