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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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    No Princess Alone button

Weekly… really?

I had a really interesting appointment with the Medical Oncologist this morning. Dr H is away so I saw Dr RB again..Wow what a difference from the last time I saw him.  When I saw him back in August he had been pretty certain that I didn’t have a recurrence.  As I discussed with OH afterwards, I think it was because I had such a good response when I had my surgery nobody expected me to have a recurrence quite so soon.  It was one of the things that my radiation oncologist had said as well. 

The best chemo options for me are ones that will both shrink the cancerous node but also stop the cancer progressing elsewhere.  There is a drug called lapatinib that is  a similar drug to herceptin but in works on a wider range of things than just Her2 – at the moment it is not funded by Pharmac ( the NZ drug funding government organisation) and our health insurance will also not cover it.    There is a trial that is starting round about February which is  going through ethics committee processes at the moment that is testing the combination of Lapatanib (also known as Tykerb) plus Capecitabine (xeloda) versus a new experimental drug called neratinib.  I am possibly a very good candidate for this trial but it is not starting straight away, and ideally this is my best shot for long term control of the “spawn of Gertrude”.  Its also oral tablets so that is also great news.

I could start on Capecitabine now but then that would preclude me from the trial.  So I am going on weekly chemo of Vinorelbine (Navelbine)  /Herceptin with view of possibly going on the trial when it gets the go ahead in NZ -probably about February.  If between now and then they decide I am not suitable for the trial I will probably start having capecitabine (xeloda) anyway.  With this node developing so fast after the original treatment -and while I was still on herceptin, we may be looking at me doing some sort of maintenance drugs to stop any more progression as a long term situation.

I will get into the chemo as soon as the schedule has an opening, sometime in the next couple of weeks. It means going up to Auckland hospital once a week for approximately an hour of  IV chemo.  They couldn’t tell me for certain  when I will start but they are also sending me for another CT scan- I am going privately to get it done faster but also they want my breast surgeon – the lovely BS who works in the private sector to look at the situation and check that there is no chance of a surgical option.  She can’t access the last scan becuse it is in the public hospital digital system.  We are pretty sure surgery isn’t an option but as the med Onc said it doesnt hurt to ask the question.  Even if surgery was an option for the node, I would still need chemo as a mopping up measure.  They also want to check there has been no more progression since September – so that they know exactly what they are dealing with going into chemo.  It just shows what an aggressive bitch of a thing Inflammatory Breast Cancer is that they are checking so soon after my last one.

One bit of good news I got today is that I will possibly not lose my hair this time round.  Mind you I wont be able to colour it again so I’ll just have to go for the graying but trendy style look.

I am having my CT scan tomorrow.

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1 Comment

  1. Ruth Coates

     /  November 18, 2009

    WEll I am sorry to hear this. I have a friend across the street who did well on tykerb/xeloda combo for many years. She is now in a trial for a new drug, which has only a number as yet. She is doing well on that as well. IBC is a bi–ch to kill but I know you will beat it! Glad you were able to have a little vacation before all this hit! Hugs!


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