HER2 Support Group Forums - View Single Post

Lyn · 10-19-2005, 06:57 AM

I have to agree with Donna. I was shocked to hear on our news here in Australia last week that only patients who are basically on their last ditch effort can receive it free here. I have been on it for 3 years now, and getting it for free. I was supposed to die in about the year 2000. My onc said I should have been dead long ago. I have survived many complications along the way and not related to the cancer treatment, in 2003 heart failure in 3 valves and my left ventricle which they worry about being damaged with Herceptin was functioning brilliantly, about the only part of my heart that was. The answer to the question, my BC was a very agressive type and when I had my first HER2 test in 2002 I was strongly positive 3+, since further reoccurences and testing, I was again 3+ in 2004 and since another reoccurences in remaining breast I was HER2 and recent biopsy I was HER1-2 so as far as I am concerned the Herceptin has either slowed down the big C or mutated the cells so they are not agressive, I know they are not agressive because one lump in my neck took almost 12 months to confirm and then followed with another 6 months treatment, so as to the argument you may need it later, why wait when you can prevent it, a bit like a stitch in time saves 9. Unless you are truly comfortable with your onc and have faith in the decisions made for you, move onto another. Two years ago my onc was off sick and I had another one of his staff, I told her I wanted an MRI on the lump that wasn't confirmed and she said "Why" there is nothing we can do for you anyway, (wrong answer) she didn't know me very well and I told her I had a 13 year old daughter that is why I wanted to know, so she hummed and conisdered it then said she would have to ring my onc Boris, she only got out the words Lyn Wants, amd then hung up, he told her to give me what I want, and a lesson was learnt from this, they hadn't even considered MRI's and this proved they needed to do more in diagnosing, of course it picked it up and I had Herceptin/Carboplatin which stalled the growth, you could see it and feel it but did not show up in the CT or Ultrasound. I told him that the ladies on this site added Taxol, he was for it until his nurse told him it was too toxic, I just said OK, and then went and did my research on this site and faxed the info to him and guess what I got the Taxol added and it shifted it. I turned up for the chemo and told the nurse they were adding Taxol, and of course she said no it was too toxic, I said well you better check with Boris, you would have thought someone let a gun off in her ear, she had to organise all the pre meds, the Taxol was ordered but they hadn't done this before and now they add Carboplatin to just about everything, especially the Taxanes. So you see, they know some of the things some of the time but we seem to know all of the things all of the time. We can be here for you and hold your hand, you will have to decide to give your onc the flick or be more assertive, we have all learnt this the hard way and want to try and prevent any unnecessary worry. Bottom line if you can get it, have it, it is no different to any other treatment, if it works it works if it doesn't then we will just find something else. Just because you may have a reoccurence that doesn't mean that other drugs can't be added to the Herceptin, some drugs work better with it than without it and it isn't a cytoxic drug. Hope this helps. I have been doing this since 1998 continually and I mean continually, my biggest break was about 3 months, not sure if I was truly NED, but it was nice for a while and lets face it, every day longer is a day closer to the cure, wouldn't be surprised if we don't come up with it on this site, many heads stick together here and we are better than any research team they have going, we have a lot more at stake, we all want to survive.

Love & Hugs Lyn

Love & Hugs Lyn.

10-19-2005, 06:57 AM	#3
Lyn A Living Legend Join Date: Oct 2005 Posts: 235	I have to agree with Donna. I was shocked to hear on our news here in Australia last week that only patients who are basically on their last ditch effort can receive it free here. I have been on it for 3 years now, and getting it for free. I was supposed to die in about the year 2000. My onc said I should have been dead long ago. I have survived many complications along the way and not related to the cancer treatment, in 2003 heart failure in 3 valves and my left ventricle which they worry about being damaged with Herceptin was functioning brilliantly, about the only part of my heart that was. The answer to the question, my BC was a very agressive type and when I had my first HER2 test in 2002 I was strongly positive 3+, since further reoccurences and testing, I was again 3+ in 2004 and since another reoccurences in remaining breast I was HER2 and recent biopsy I was HER1-2 so as far as I am concerned the Herceptin has either slowed down the big C or mutated the cells so they are not agressive, I know they are not agressive because one lump in my neck took almost 12 months to confirm and then followed with another 6 months treatment, so as to the argument you may need it later, why wait when you can prevent it, a bit like a stitch in time saves 9. Unless you are truly comfortable with your onc and have faith in the decisions made for you, move onto another. Two years ago my onc was off sick and I had another one of his staff, I told her I wanted an MRI on the lump that wasn't confirmed and she said "Why" there is nothing we can do for you anyway, (wrong answer) she didn't know me very well and I told her I had a 13 year old daughter that is why I wanted to know, so she hummed and conisdered it then said she would have to ring my onc Boris, she only got out the words Lyn Wants, amd then hung up, he told her to give me what I want, and a lesson was learnt from this, they hadn't even considered MRI's and this proved they needed to do more in diagnosing, of course it picked it up and I had Herceptin/Carboplatin which stalled the growth, you could see it and feel it but did not show up in the CT or Ultrasound. I told him that the ladies on this site added Taxol, he was for it until his nurse told him it was too toxic, I just said OK, and then went and did my research on this site and faxed the info to him and guess what I got the Taxol added and it shifted it. I turned up for the chemo and told the nurse they were adding Taxol, and of course she said no it was too toxic, I said well you better check with Boris, you would have thought someone let a gun off in her ear, she had to organise all the pre meds, the Taxol was ordered but they hadn't done this before and now they add Carboplatin to just about everything, especially the Taxanes. So you see, they know some of the things some of the time but we seem to know all of the things all of the time. We can be here for you and hold your hand, you will have to decide to give your onc the flick or be more assertive, we have all learnt this the hard way and want to try and prevent any unnecessary worry. Bottom line if you can get it, have it, it is no different to any other treatment, if it works it works if it doesn't then we will just find something else. Just because you may have a reoccurence that doesn't mean that other drugs can't be added to the Herceptin, some drugs work better with it than without it and it isn't a cytoxic drug. Hope this helps. I have been doing this since 1998 continually and I mean continually, my biggest break was about 3 months, not sure if I was truly NED, but it was nice for a while and lets face it, every day longer is a day closer to the cure, wouldn't be surprised if we don't come up with it on this site, many heads stick together here and we are better than any research team they have going, we have a lot more at stake, we all want to survive. Love & Hugs Lyn Love & Hugs Lyn.