The following is a copy of an email letter I sent out to my friends and family after the visit to the oncologists a week ago. It’s taken a while for me to get it on here, as I have also had a uni assignment to do as well. That got handed in on Monday. And as of yesterday I now have no classes for two weeks as next week and the week after are mid semester break – so have more time to update with blog posts and let every one know what is going on.
We have a plan, I am starting an oral chemo (chemo in tablet form) called Capecitabine – brandname Xeloda – sometime the week of the 11th April.
We decided that week so I wouldn’t be getting used to side-effects when YD is home for the weekend of her Birthday 8-10th April.
I will initially be having 6 cycles of 3 weeks with 2 weeks on the tablets and 1 week off, seeing the oncologist every 3 weeks to get the next batch. I will keep having this as long as it is having an effect – until treatment effectiveness plateaus (there is no further shrinkage of tumour or drop in tumour markers in my blood tests). I will then have a 6 month break, if it remains stable for those 6 months there is a possibility of trying more rounds of Xeloda to maintain.
If while on the chemo or within the 6 month break when treatment effectiveness has plateaued more metastasis appear or this one continues to grow, we will be looking at switching to a different chemo.
Given the pattern/timeframe of the cancer’s recurrence so far, the doctor is hopeful for any single treatment protocol to be effective for at least 18 months.
The lesion/tumour on my liver has grown markedly since it first became apparent on the December scan and as of my scan of 15th March is approx. 4.2 cm x 3.5cm in size and is located in the area of my liver that is roughly adjacent to my right shoulder-blade – just under my diaphragm.
All of this is not great news as we move to more of a control mode rather than looking at me being completely cured. Prognosis now is very dependent now on how effective each chemo protocol is at controlling progression. As a family we are as OK as we possibly can be. OH, and the older girls and myself have always known from when I first got diagnosed in 2008 that this was a possibility due to the aggressive nature of Inflammatory Breast Cancer, so as much as we are upset we are also fairly pragmatic and realistic. YD has only been told at this point that I need more medicine to make it go away again and that is all we are going to tell her for now.
For the meantime, we have decided life will on as normally as possible, but there are issues we do need to think about now such as quality of life, priorities if and when treatment doesn’t work etc.
There is a drug similar to Herceptin called Lapatinib (brand name Tykerb) that is not funded by Pharmac (for those readers outside New Zealand, that is the agency that decides which drugs are funded under our public health system) that I could take that would slow down the progression but at over $5000 a month (and still not a cure) I, and OH, feel it is not really worth it and not really affordable as I would have to stay on it indefinitely for it to keep having an effect and it would leave us with no money to have any sort of normal fun life.
There are also no clinical trials going in New Zealand at the moment that I am eligible for.
I will be looking into complementary therapies but again it comes down to effectiveness and quality of life per $’s spent.
I do ask that you read my blog to keep up to date with what is happening – I can’t promise regular emails.
If you have any questions feel free to email back – probably easier than phoning at the moment as, as well as dealing with this, I have a 2000 word assignment due for one of my Uni papers next Monday.
I thought it was better to give you all the information so I apologise if it is a bit overwhelming”
I have also sent a similar letter advising my Uni lecturers of what is happening and talked to L, the manager of YDs house, about things and we are having a meeting this afternoon to talk about how they can help YD at this time and in the future.
I have also had to tell a few more people in person and have my ‘Body Shots’ photo shoot and viewing to pick images. I have to say I look rather gorgeous, or at least for me, I am so glad I did it.
I have included here a photo of the size of the ‘?’ on my liver now known to be a liver metastasis. Comparing the size from August, December and March.
If you have popped over here from Facebook I would ask that you comment here on the blog rather than on where the link shows on Facebook. YD has her own Facebook page and can read well enough to be able to worry if she sees something with negative connotations.
That is why I try to write my blog posts with a very ‘light’ intro sentence or two so that what shows up on Facebook in the link isn’t too worrying. At the moment YD isn’t clicking on the blog links but there may come a time where I don’t link my posts to Facebook for that reason. I will also be more flippant and light-hearted on Facebook for that reason also. I am not trying to intentionally lie to YD but with things being in a very abstract timeframe, she only needs to know what is immediately affecting her for the next few months. In other words in blocks of time she can understand, so that with her autistic tendencies she doesn’t fixate on something that may or may not happen at some indeterminate time in the future.