Reporting In


First of all, for my dear Violet Hoarder and anyone else interested in matters sartorial and/or artistic: you can find my report on my shoe shopping expedition here, including the all-important Photographic Evidence. Enjoy!

Okay. Now to the other stuff.

I did see Dr. Bouncy. I can't say he was particularly happy with me, but such is life - especially mine. Did I mention that I am Difficult?

Anyway, the upshot is this:

1. My liver enzymes have gone only very slightly up, not enough to be statistically significant. Which I suppose is good news of a sort, since they've been rising a bit more rapidly in previous visits. We'll take good news where we can get it.

2. We won't know whether the current symptoms are caused by the medication or the cancer, unless we do a scan. Which I'd rather avoid. But I may have little choice, if current symptoms continue. So we are sticking with the Arimidex for the rest of this cycle, then will decide whether I will switch back to the Aromasin or not. I have a scan scheduled for August, which I can cancel or move up if I feel it's warranted, and another appt. with Dr. Bouncy at that point to see what I want to do next.

If I have a scan and it turns out that I'm progressing again (in cancer, Progress is bad; it means the cancer is growing and/or spreading), I'll have a few options: I can try going back to the Aromasin, I can switch to Tamoxifen (unlikely to work, but possible), or I can move on to Faslodex, which in treatment terms is sort of like the other hormonals, but a bit stronger - it not only blocks the estrogen receptors, it sort of kills them off. Which means that it might work for a while, but is likely to more quickly make the cells completely immune to hormonal treatments.

If I switch to the Tamoxifen, and even if that works, eventually that will fail and I'll end up on the Faslodex. Which might work for a little bit, if I'm lucky, but eventually that will fail. Then the options will be the various types of kill-cells-generally chemo*, until the point at which I decide to stop treatment. Everything will stop working, sooner or later. Mostly sooner - the usual curve is that each treatment works for a shorter time than the last. And my particular cancer is a relatively rare grade 4, which means it is very, very aggressive. So it's not particularly surprising, I guess, that my positive response has been relatively short.

Sometimes you chance across something that for some reason works particularly well for you as an individual, and that occurance is what you and your doctor hope for. If you stumble over that particularly effective treatment early on, when there are fewer cancer cells to kill, you could even luck out and put yourself into remission for a significant period of time (even permanently, if you are very lucky - not common for those of us with metastatic breast cancer, but there is a lucky 3% or so, and you never know).

Unfortunately they don't yet type individual tumors** so that you can target your unique cancer with the treatments that would specifically be most effective for you, although the technology is there for at least some of the known markers. For instance, they know two particular markers that are very indicative for good reaction to Faslodex, but most centers/clinics don't have access to the tests necessary to check this out. It's easier for them to just give you the drug and let you suffer the side effects and possible progression while waiting to see if you are among the 30-40% of hormonally positive patients for whom the drug works at all (slowed or stalled progression for an average of 3-5 months).***

This is, IMO, criminal****, but although doing that testing would benefit the patient, it would also hugely cut down on the profit Big Pharma makes on the current scattershot process, so this typing somehow has not made it into standard practice and is thus not available to most of us.

So. Anyway. Kind of sucks that the hormonals are possibly losing effectiveness this soon. Dr. Bouncy mentioned that for people who react well to hormonals, the chemo tends to be less effective, and vise versa. But I find that less than comforting - I suspect I am a person whose cancer reacted relatively well to hormonals, which means that chemo is likely to be less effective. Less effective than 5 months is not particularly heartening, especially when the cost in side effects/quality of life and dollars is so much greater.

Plus evidence tends to lead to the conclusion that I am not going to be one of those people who get through chemo with relatively few nasty side effects. I get the unusual and nasty side effects to just about everything, including the hormonals, so why should chemo be any different?

I don't particularly care about the hair - I lost a good amount of it 15 years ago through alopecia, so I've already dealt with that, and it's been a long time since I had any reason to be vain about any part of my body. I expect I'd have a day or two of trauma, less as an aesthetic matter per se, and more of a reaction to the fact that it marks you publicly as a person who is sick and probably dying, and I prefer being invisible. And then I'd get over it. But the whole brain fog thing is scary for me - I suppose what I am vain about is my mind, and more importantly, I've always depended on being reasonably bright to get me along in a world where my (lack of) social skills and survival instincts cause me significant problems. And nausea - well, I'd rather be in a lot of pain, frankly. Not that I like pain, and the thought of even more skin problems is not the least bit appealing. And raising my level of already systemic fungal problems is a big issue - not only does it raise the level of difficult side effects possible, but it also makes me more likely to actually die from the chemo, rather than the cancer. I don't know which type of death is worse, but they aren't either of them a walk in the park, and the cancer might give me a little more functional/quality time, which I would prefer.

So there is a line beyond which I will not go on the chemo end of things. I'm not sure where that is, but I suspect it will be a lot sooner than Dr. Bouncy and my mom will be happy with. Faslodex, I'm sure I will take. Beyond that, I'm not sure. I'll have to keep weighing things out as I go along, which is not going to be the least bit fun. And then after I decide to stop, things will get even more not fun.

But we did get that five months, at least. And Mom, we got that time together. That was a great gift. Totally worth the stupid side effects.

*And yes, I find the whole chemo vs. hormonal thing confusing, too. Some doctors will call the hormonals 'chemo', because they are a chemical interference that is specifically aimed at cancer. Technically, this means that hormonals fall under the official definition of 'chemotherapy'. Others do not consider it chemo, because it doesn't (theoretically) mess with your immune system or cause your hair to fall out (at least not all of it) or kill off cells per se. The hormonals simply starve your hormonally-driven cells of estrogen, which means that they aren't given super-fuel that spurs them on to grow as rapidly... if they die faster than they reproduce, that shrinks your tumors or even kills them off. Which is great (well, not really, since the side effects kind of suck. They just don't suck as much as some of the other chemo treatments do), but eventually the cancer figures this trick out; the cells drop the useless hormone receptors and find other ways to fuel themselves.

**The two things they do type for is hormone sensitivity and HER-2 status, which are both very general markers - useful to some extent, but it's rather like grouping dogs into being either Big or Small and either Long Tailed or Short Tailed. There are a lot of variations within those groups, and the useful applications are seriously limited where application is most needed.

***This is important, because cancer grows exponentially. At first it grows slowly, because 2 cancer cells only double to 4 cancer cells. So if you can kill a few cells off every day at that point, it's pretty effective. But by the time you have multiple tumors, that means you have thousands and then millions of cells doubling rapidly, and redoubling, and redoubling... killing a few cells off every day doesn't make a significant dent. So if you can get to the most effective treatments early on, this would give you a much better chance of putting a serious dent in the disease, even curing it. The reason metastatic breast cancer is considered incurable (for now) is because by the time the cancer has spread that much, you have too many cells reproducing for the current treatments to wipe them all out - and as long as the cells are there, they are mutating and figuring out how to work around the treatments.

****What, does this sound like a Bad Attitude? A little Bitter, perhaps even cynical? Gee, how unlike Me.
~koff, koff~


Nancy K. said...

I love your attitude! And you are most definitely entitled to your cynicism. It amazes me how you can be so factual, so detached. You do realize that you are teaching us ~ don't you?

You are awesome, Eileen!

Delighted Hands said...

You have been educating us and pretty upbeat for a year now....
The info now isn't surprising but your perserverance is! You are amazing.

Jane Carlstrom aka Glorious Hats said...

Oh my, just caught the change in blog background template, It is both beautiful and scary; enchanting and haunting, all at once and once in all.

Sending more hugs and as always wishing for a magical reversal and erasure of the cancer.

Thankful you had a good 5 months, that your persistence and pressure on health care providers to work with you brought some helpful drugs/treatments into play.

So appreciate your sharing your thoughts, feelings, sorrows and joys in this difficult life path.

Hugs, Jane

mrspao said...

Hug x Five months is really precious and you are always in my thoughts and prayers.

Laughingrat said...

It sounds scary and confusing, and it's crummy that you have to deal with that on top of being sick. I'm glad you've got support from family and friends to help you out.