On the Homefront ...

For anyone wondering what Phil has been doing since he arrived here on Aug 5, here's a hint:

Told him he was standing other home renos in the area on their ear (hence the sideways video)! I was going to say he made very good constructive use of his time, but I can assure you there was plenty of destruction involved in the project as well. (Too bad I'm not looking for a career on HGTV. This would make a great audition tape, no?)
Phil heads home today. I'm sure he thinks the moment hasn't come soon enough. Me? I'm not so sure.

Another Weight Loss Plan Foiled

There I was, snuggled under a nicely warmed blanket that kept the draft along the opened back of my hospital gown at bay. I had arrived a bit early for my appointment at St Mary's ACU. Dr Goddard arrived within minutes. I fully expected to lose a pound of flesh via the removal of "suspicious" moles on my back. Dr G checked the spots. He noticed some others he liked even less. That's when he asked if I had seen Annette somethingorother, "the dermatologist". I said no, I hadn't been referred to a dermatologist. Dr G suggested that I meet with her before he removes anything. He also suggested taking along my cell phone so that I could have her photograph the spots she was most concerned about so he didn't remove anything unnecessarily. So, I left weighing the same amount as when I arrived. Guess I'll have to resort to a sensible eating plan after all. Dang!

Hibernation

Snow clumps on branches
Like so many
Frozen white blossoms


Okay, so it's not the best of haikus - likely doesn't even have the classic pattern of one. When I wrote that a couple of years back, I must have known how the sedum would look as I peered out the window this morning. Pristine white clumps everywhere in the garden. Mercury is dropping apace, too. Perhaps this explains why I slept most of the weekend. Like Bruno who occasionally lumbers past my yard, I'm in hibernation mode. Either that or I'm trying to recharge after the stresses of the last couple of weeks. No matter, the bed is cozy so I am, too.

Ready, Set ...

STOP!!!

The drug trial I was to take part in has been cancelled. Turns out one of the drugs (Foretinib) is causing blood clots in the lungs of some folks who have been taking it. It should be said, however, that the woman who had already embarked on the drug trail I was take part in has not experienced any such problem, nor has she had any other particularly unsavoury or unexpected side effects of the drug cocktail (Fretinib + Lapatinib). Even so, the makers of Foretinib have pulled it from general use as well as from any ongoing or upcoming drug trials as a precaution until they are able to remedy the situation.

Confess the news threw me for quite the loop. I was so psyched up for the trial, eager to try something that might be the answer to my problems, at least for the foreseeable future. Alas, it was not to be. Although I have never borne children, I suspect the feeling currently experienced would be akin to thinking I was entering my third trimester only to learn that I was never pregnant but was suffering from the lasting effect of a rather satisfying albeit indulgent ingestion of some sort. My brain is having a trouble shifting gears.

Some potential alternatives:

I could take the Lapatinib alone. It is fully licensed (unlike Foretinib) and has a much longer history of use. However, Lapatinib is not covered by either government or private health care programs. I would have to pay the entire cost of the drug myself - to the tune of $3500/month!! Okay, so the drug company is willing to offer a discount to non-extended-health-coverage patients, but that amounts to little more than a $500 reduction in the cost. Even at that, the price far exceeds my budget. Thus, this is not an option.

Another suggestion is to take another drug entirely. Capecitabine is another drug that has shown good results in patients with a similar case history to my own. This is another orally-administered chemotherapeutic agent. One cycle includes two weeks of treatment (one pill twice/day) followed by one week without treatment. Cycles can be repeated every three weeks. The advantage of this option is that it can be undertaken in Sechelt, under the supervision of Dr. Wadge. In addition to the usual nausea, diarrhea and fatigue, Capecitabine can cause mild to severe renal dysfunction as well as myocardio infraction or angina, as well as something called hand-foot syndrome. Given the hand and foot issues I experienced while taking Taxol two years ago (with mild tingling continuing to occur in my left foot and ongoing cramping of finger joints in both hands these many months later), I'm more than a tad leary of this alternative.

Of course, there is nothing that says I have to accept either - or any - of these courses of treatment. I currently feel very well. I have a decent level of energy and mobility. I have no pain, only mild discomfort and then only occasionally. The cancer is not spreading so quickly that I must decide a plan of action immediately.

So I'm opting to do nothing. For now. I'll take the time to make every effort to cross a few more things off my "bucket list".

Should I change my mind in a day, a week, a month, a couple of months, my oncologist will be more than willing to talk to me about the various options (as listed above as well as some other IV-administered drug options) when I feel symptoms worsening or should I feel the need to start on another treatment for whatever reason. Remember, the goal is quality of life. My reality is that the disease will spread to other organs over time no matter what my oncology team throws at me. Nothing will ever be a "cure". My life will not be prolonged. But if what I'm currently experiencing is any indication of how things will go for the foreseeable future, I see no reason to try a new drug that might not sit with me as well as past treatments have. I count myself incredibly luck to have experienced so few side effects. I'm not keen to push my luck any more than necessary.

For now, I'm taking a short course in glass fusion and planning to host Christmas dinner in my beautifully renovated home. Yup, things could be a lot worse.

I'm Number Two!!

This week's visit to the oncologist helped clarify several questions I had re the upcoming clinical trial. First of all, I am not the second person in Canada to be taking this combination of drugs. Rather, I'm the second person in the world to do so. Who'd a thunk it? Me, a medical pioneer? For reasons relating to maintaining the privacy of the first person embarking on the trial, I can only be told that the woman is "around" my age and also has metastasized breast cancer - although I haven't a clue re which organs are involved in her case. Here are a few more things that I learned: I won't start the trial until Dec 7. That will allow the first participant to have a complete month's worth of the drugs - and the trial overseers to monitor/resolve any side effects/unforeseen issues that crop up during that time - prior to my first dose. The next person to join the trial will wait until I've receive a month's worth of the drugs before she starts. Together, the three of us will form the first group of trial participants. Each of us will receive a 50% dosage of each of the two drugs. The second group of trial participants will receive a slightly higher dosage, and the next group a higher dosage still. This method of gradually increasing the dosage for each group will help the researchers determine the optimum dosage of each drug that will produce the side effects. The trial period for each group of three participants will be six months in duration. During that time, I will have a CT scan every six weeks rather than every three months as I have in the past. This will ensure that any shortcomings of the treatment will be detected sooner rather than later. I will also receive heart scans (either MUGA or ECG) on a similarly regular basis, for the same reasons. In addition, for the first month of the study, I will be required to report to the BC Cancer Agency in Vancouver on a weekly basis for blood tests and other monitoring. During the second to sixth months, the tests will only be required on a bi-weekly basis.

During the course of the trial, I can expect to be plagued with diarrhea, nausea, and fatigue. One of the drugs is also likely to cause night-blindness (so no driving after dark for me). I do not need to adjust my diet unless diarrhea or nausea issues need to be addressed. I can continue will any and all activities that I feel capable of undertaking. However, I cannot travel outside of the Greater Vancouver area for "at least" the first month of the trial in case I need emergency attention - since the folks involved with the study are likely the only ones knowing what to do to assist me. After that, I only need to be mindful of the dates when I need to report to the Agency.

So what happens after the six month trial ends? Well, that's a good question and one that nobody is able to answer at this time. If all goes as planned and the drugs and I get along, it is hoped that funding will be available for me to continue on with the drug regime. At present, the drugs are not covered by any medical plan, and they are not covered by the Cancer Agency. However, my oncologist and the trial study team assures me that every effort will be made to secure funding for the drugs should they prove beneficial in my case. Incidentally, nobody would tell me just how much these drugs would cost should I have to pay for them myself - the oncologist said I likely can't count that high anyway! Yikes!

If the drugs used in the trial prove to be ineffective, or if funding is not forthcoming, the oncologist assures me there is another plan waiting on the back burner. However, the drug trial is thought to be a more effective alternative for me at this time, so we're going with that option first.

Some followers of this blog have asked what will determine the effectiveness of this trial. Well, it is not to cure cancer. In my case, that ship sailed long ago. Chemotherapy was prescribed when it was thought that a cure was possible, but once the cancer spread beyond the breast and axial nodes - and even further into some of those newly affected organs - a "cure" was no longer in the cards. Thus, everything that will be given to me from now will (hopefully) slow the spread of the disease and prolong the highest quality of life obtainable. I'm good with that. Always felt quality of life trumped length of life and doubt I'll change that view any time soon.

So, on Dec 7, I'll be keeping my fingers crossed that my body likes these new drugs, that they are easily tolerated with minimal side effects, that funding will be available to cover the cost of the drugs after the six-month trial ends, and I can continue enjoying my happy little life. And I am sure that will be the case. God willing.

Start Test

Off to Vancouver today for some chores prior meeting with the oncology team tomorrow. After that meeting, I'll have a CT scan, the first of a string of tests needed before I can start the clinical trial. I'm sure I'll soon appreciate all this extra radiation exposure as the winter chill is starting to set in.

scary stuff

Somehow between co-ordinating my new medical treatment, taking care of Momzy, and having my house renovated I've found some time for a bit of fun. For Halloween, I thought I'd give in to Momzy's pleas for a new set of eyes by purchasing a set similar to those included in a Mr Potato Head kit. In keeping with the season, we opted for a larger, oranger vegetable than the typical tuber. Here are the results of our efforts - Penny's is hands down the most frightening of the lot!

As if that weren't scary enough for all you blog followers, here's a shot of the lunch I was served at the hospital on my last day of chemo. Not sure why a salt package was included as the soup was surely from that mineral base. The white stuff under the processed turkey and salty gravy is congealed instant rice. The carrots in the salad were wilted and the raisins hard. The over-steeped tea was like mud. The very yellow "lemon" pudding was the most palatable item on the tray (lactose intolerance prevented me from sampling the milk, which I'm sure would have won the taste test hands down). And folks wonder why hospital patients don't get better faster!