It looks like herceptin is starting to fail after 2 and a half years, and I will probably be starting on anthracyclin chemo over the next few weeks. I had discussion with my onc re lapatanib, who said that at the moment it is only licenced to be given with cabecytobin, which didn’t work for me last year. Have any of you been able to get Lapatonib prescribed on it’s own, and what are your expereinces of it? I am not panicking at the moment, as have only had cabcytobin up to now, but am allergic to taxotere, so would like to know all my options.
thanks.
Nicky
Hi Nicky,
Sorry not much help but I had lapatinib with capcetebine on trial at Marsden. Sadly when the capcetebine stopped working I wasn’t allowed the lapatinib alone due to combo trial.
Hi,
I was dx with BC 07, brain tumor apr 08 & now I have lung mets…
My Onc was trying to get a grant for me through Staffs hospital to get Lapatanib but I was turned down… I now have a new Onc who is from Stoke Hospital (North Staffs) who is doing trails with Lapatanib next year. The treatment I am on is Taxotere x 6 & herceptin & Xeloda chemo tabs, which fingers crossed is working for me at the moment. Could you not ask your Onc if there is any Laptanib trials in your area as it is a fairly new drug??
Have just read your post and seen that you are being treated at the UHNS. I also live in Stoke and am under Dr Brunt who is a brilliant Oncologist.I can’t pronounce the name of the other leading Oncologist but I understant he is also very good. I finished chemo in April so I haven’t visited the new cancer ward yet but I wanted to wish you good luck with your treatment
Barbara x
So sorry to hear this.No information to add, just wanted to say hello…and thank goodness for the two years we’ve both had since meeting at the BCC event. (I think it;s two not one…)
Thank you for all your replies. My latest scans do show progression, but not as much as we expected, so my onc is beginning to think i should stay on herceptin for the time being, but also have some chemo. I am being discussedc at next weeks MDT meeting and will hopefully have a plan soon. There may be a trial of a new chemo related to the taxanes that I could go on (sorry don’t know any details.)
As Jane said, it is 2 1/2 years since i was diagnosed, and our family has packed such a lot into them whilst I avoided chemo, which I am very grateful for.
Hi - I have just been diagnosed with secondaries. Know it is in bones - will know tomorrow where else. I noticed that a couple of you are treated at UHNS under Dr B. Would love to hear from you.
I am sure you will understand how devasted and how hopeless everything feels at the moment. I only finished chemo earlier this year, radiotherapy and then had a hysterectomy. Went back to work 9th September and then this! Can’t believe it. Could do with any help/support. Di
hi thanks for responding. Lymph nodes were completely matted. Late diagnosis - my GP had told me I was ok for two years. Had TAC and then extensive radiotherapy. Been on Arimidex - Herceptin neg
Di
Sorry to hear your news about the spread to your bones and I hope that your results today do not show any further progression.
I was first treated by Dr Brunt in 1993 when my primary tumour was dx and when three years ago I discovered that it had come back I was given an appointment with Dr Al Niamhi (Not sure of spelling) but you will know who he is but I asked to see Dr B again. He is one of the UK’s top oncologists and I think that we should all be grateful that he chooses to stay in Staffordshire rather than defect to London. I have every faith in him and his team and I know that he is very sensitive to the needs of his patients.
If you feel that you need more support have you thought of asking for a referral to the Dougie Mac Hospice day care.They are very supportive and I actually receive my intravenous bisphosphonate Zometa there which saves having to go to the hospital.
Have you spoken to your GP about claiming DLA (don’t ask Dr B because he is reluctant to sign the form for anyone who is not “terminal”. I know that we tend to think of ourselves in this way as secondaries cannot be cured but Dr B does not think like that.
I hope that you will continue to live with this disease for many years yet and I am sure that there are many treatments still available to you
Good luck Barbara x
Thanks for responding. Results could have been much worse. Secondaries in bones, left hip mainly, evidece in other areas, spine etc. Also two very, very tiny spots on liver. I didn’t ask for too much detail this time. Still in shock. Treatment in Tamoxifin - I was previously on Arimidex. Understand Tamoxifin works differently so may be successful. Rescanned in 6 weeks. If further progression on to chemo. In the meantime having hip surgery early November. Like you I think we are extremely lucky to have Dr Brunt at UHNS and have absolute confidence in him and his team. I am just so disappointed still not to have had the time between finishing treatment and diagnosis of secondaries. I always expected this but just not so soon. Di x
Glad that your results weren’t too bad, as you say they could have been a lot worse. Hope the Tamoxifen works well for you for a long time. I can understand your disappointment at the quickness of your secondary diagnosis, it’s scary but it doesn’t mean that your cancer won’t be held in check for many years to come. I am sure Dr Brunt will have plenty of effective treatments for you. Can I ask, are you having a hip replacement? I have bone secondaries in my pelvis and spine and last week had radiotherapy to these areas, but I am interested in what other treatments people have to their bone secondaries.
Sorry your results were not as good as you had hoped but as you say, Tamoxifen works in a different way to Arimidex and it could help you to remain stable for a long time. You did not mention which bisphosphonates he has prescribed for you. I had Bonefos tablets for two years but after reading about Zometa I asked if he would change and he agreed. The NHS always wants Dr’s to prescribe the cheapest but there is now evidence to show that the IV Bisphos actually kill cancer cells and help with pain management.
Hi not sure yet what type of surgery. Couple of options mentioned but decision depends on surgery, one being replacement, one pinning. Need to have surgery before hip fractures. I am on Ibandronic Acid, Bondronat one tablet a day. Not sure if they are the same as you or not. Is it just the IV ones that are reported to cure? Di x
I think they all perform a similar role but there has been a trial comparing tabs and IV bisphos (BISMARK trial) and I think that the evidence is that IV is more effective. It often comes down to cost when deciding what to give you. Some people have a bad reaction to the IV type and others cannot swallow the tabs. It is just another thing to bear in mind if you feel that you need to change in a couple of years time.
Hope that it is not too long before you can have your operation to strengthen your bones