Wednesday, July 6, 2011

Spontaneity

Although I am the daughter of "Go With the Flow Fred", I haven't always embraced spontaneity. Yes, I've had a great number of unplanned moments, especially relating to my writing or my art, but most of my life has been played out via at least a loosely laid plan. That all changed yesterday. But I'm getting ahead of myself.

Last Tuesday (June 28), I met with my oncologist as per the schedule laid out in the drug study. I knew something was amiss when the study nurse told me she and the oncologist wanted to look over the images from my last CT scan (done several days prior - I had to wait to see the oncologist to get the results) before meeting with me. I had a niggling feeling in the back of my head that something had changed, but I couldn't say what. I was about to find out.

Apparently at least one of the lesions they had been tracking for the purposes of the study had enlarged beyond the parameters of the protocol. I don't remember the exact amount of the difference, but it was something very small, like half a millimeter or something like that. Understand this doesn't mean that the cancer has suddenly spread beyond control. As stated in an earlier post, several of the lesions have shrunk or "disappeared", but others have appeared as well. And at least one of the benchmark sites has grown more than the study criteria allows. It makes sense that I should be asked to leave the study. If I stayed, the data collected from my role would likely skew the results and thus render them invalid. Further, by allowing me to stay in the study, the team would be setting a precedent whereby others could also be allowed to continue even if they no longer met the study criteria, which would make things even worse in terms of drawing any kind of conclusion from the study findings.

There are other reasons why I'm not too upset about stopping the Capecitabine/Lapatinib combo. It will be very nice having blistered hands and feet. Same re constant canker sores, dry eyes and mucous membranes.

The good news is that I will be taking part in a new study starting in August. Actually, it's an old study, the very one I was to have been on first in December, and later when I opted to do the Capecitabine/Lapatinib study so I might be on the Lapatinib longer.

This new round of drugs is a Fritanib/Lapatinib combo. The worst known side effect re the Fritanib is high blood pressure, but that is easily monitored and treated. Yes, there were some blood clots in the lungs of some who were on Fritanib (the reason the December study was put on hold), but those patients were on very high doses of the drug for a very long period of time. The study I'll be on has a low dose of the drug. Also, the study is only for six months. However, should I respond favourably to the F/L combo, there is a good chance the drug company will continue to fund future doses for me (this is what happened to another BC Cancer Agency patient who has been in the study since last December).

I was offered the chance to take part in two other drug trials, but chose this one because the other two were newer medications with less known about the effectiveness of them. Also, since those are early staged trials, there is no chance of being allowed to continue receiving the drugs after the study as funding isn't currently available. That said, the BC Cancer Agency is applying for funding so that might be an option for the future. So there are still options should my body not take to the F/L combo.

So, I start the new trial in August. That gives me the month of July without any treatment. I'm not worried as I went four months without treatment prior to embarking on the last trial, and the cancer hardly changed/advanced in that length of time so doubt there will be much change over a mere four weeks.

Even so, I intend to make the most of my "drug freedom days".

Yesterday I booked a spot on a bus tour of the UK. In 10 short days, I'll travel along roads leading throughout England, Scotland, Northern Ireland, Ireland, and Wales. I've never traveled like this before, so am hoping for a pleasant experience. If nothing else, I'll see a lot of country. And I won't have to stress about finding accommodation or booking the next leg of the journey. Heck, I might even meet some nice people.

For those who might be interested in such things, I'll be on a Trafalgar Tour. The name of the tour is Britain and Ireland Highlights. The reason I chose that particular tour versus others that were quite similar is that it is the only one that overnights in Glasgow. Most tours, including those offered by Globus and Insight, only go to Edinburgh and, if they do pass Glasgow way, only make a brief stop if they stop at all. My interest in Glasgow? The architecture/design work of Charles Rennie Mackintosh - sipping tea in the original Willow Tea Room is high on my bucket list. Wonder if I can catch also Donovan or Lulu in concert while I'm in town. Hmmmm.

The tour doesn't begin until July 15 and I'm landing in Old Blighty on July 8. What will I do prior to the tour? Well might you ask! I have no idea. Actually, I have a zillion ideas. One thought is to take the Eurostar train through the Chunnel to Paris for a day - would like to see the Musee d'Orsay and the Musee des Arts Decoratifs, and maybe sip a pastis or two (or absinthe - yum!). Did most of the tourist stuff years ago so don't feel the need to repeat it. Would prefer to do something different this go 'round. On that note, am also thinking of taking the train to Brussels as well. Again, only a few hours away from London. That might require an overnight stay, but that's okay. The attraction to Brussels: I have never been to Belgium and thought it would be fun to munch Belgian waffles in their homeland. Brussels is also home to many design works by Victor Horta (think Art Deco and you'll likely remember some of his work). There are also a number of textile-related galleries and museums, to say nothing of sources for Belgian lace. And the chocolate, oh the chocolate! Then again, there is so much of London that I haven't seen: Tate Museum, Victoria & Albert Museum, Kew Gardens, and areas further afield such as Devon, Cornwall, the Lake District. The main attraction to spending some time in London is the chance to meet up with a former boss who lives in Greenwich. She is on her way to Italy (husband is in a choir that is going on tour) so our time together will be quite limited. But it will be great to see her again.

I won't have a laptop with me on the trip, so will rely on internet cafes for communications. Since I don't know where or when or how long I'll have access, I'm not sure if I'll have a chance to update this blog before I get back on July 25. But I will try.

Of course, I would leave town just as the warm weather decides to make a long overdue appearance. 


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