Today was our marathon meeting with the oncologist. I'll attempt to explain everything we talked about.


The first part of the appointment was actually Rory talking with the PA about her (the PA) upcoming sleep study appointment. One of those moments where she was able to share her experiences in a very personal and helpful way to alleviate some uncertainties and unknowns for someone else.

After that, Dr. McGregor came in and talked us through everything. Since she had called last night, there wasn't a ton of brand-new groundbreaking information, but it was a really good appointment. I got to ask some questions, Rory had her concerns heard, and we started making some plans. Here's the very brief version; anyone interested in more is certainly welcome to email me and ask any questions you would like.

Rory's breast cancer is what they call "estrogen receptor positive." This means that the cancer growth is supported by the presence of estrogen in the body. One of the main drugs she has been taking since all the excitement a few years ago is supposed to block the ability of specific hormones to bind into the estrogen, also blocking the growth effects on the cancer. However, cancer cells can be real buggers sometimes, and they can continue to float around in the body, nearly starved but still barely alive. They can eventually get really clever and find ways around the medications, set up shop in a new location, and start growing again. This is what happened to Rory, and some of those colonist cells started terra forming inside her sacrum (part of the pelvis bone). Fortunately a somewhat unrelated scan detected their presence. We also found out during today's meeting that a recent blood test had shown a slight increase in a marker protein, so there were "little red flags" also being raised within the treatment group.

So, now that the biopsy has confirmed that it's the same breast cancer cells, and that her liver is "clean," we can proceed with the next treatment. This will eventually be comprised of four new medications. (Remember this is just a summary ... if anyone has more detailed questions you are welcome to shoot me an email and I'll be happy to respond. If enough people ask the same question I'll probably share more on this blog.)

Even though it has apparently lost some of it's effectiveness, Rory will continue to take the receptor blocking medication that she's been on for awhile now. It's still effective at blocking many of those receptor sites, so that is going to continue for awhile. Eventually the Dr will move her over to another drug that will stop all estrogen PRODUCTION in her entire body. I learned today that in addition to the ovaries, other parts of the human body also create estrogen (or compounds that are converted into estrogen). So even when the ovaries are done doing their thing (post menopause), in cases like Rory's it will still be important to stop the muscles, thyroid, and other areas from continuing to make estrogen which will keep that blasted cancer from growing. The good thing is that medication will be a once-per-day pill which replace one of the meds she is currently taking.

For now, Rory will also be getting a monthly injection of a medication designed to tell the ovaries to stop generating estrogen. Some women opt to just have their ovaries removed rather than go through the injections, but for now at least we're going with the medication option. Interesting that for cancer patients, they don't consider women to be fully menopausal until age 60! Dr. McGregor said she doesn't usually wait that long, meaning she's not expecting 16 years of monthly injections, but they can monitor her blood for estrogen using blood tests, and they want that hormone to be NON DETECTABLE. This is one of the tools to help make that happen.

Besides simply trying to "starve" the cells of estrogen, they are going to proceed with chemotherapy to actually attack the cancer cells in the middle of their growth cycle. Now that she's in what is called "Stage IV" cancer, meaning it has spread to organs beyond where it started, they can use a newer form which is an oral pill. That's right, kids ... no intravenous transfusions! Last time they would super-dose her body with the chemical cocktail about once a week, followed up by an injection to try to encourage the bone marrow to regenerate. This process will involve a daily oral dose of the chemicals for 3 weeks, followed by 1 week of "rest" for regeneration. Before starting the next cycle Rory will have blood tests done to check the normal things like red and white cell counts, neutropenia (looking for a minimum number of immature white cells), platelets, any detectable estrogen, special protein markers that can suggest cancer is growing, cholesterol, etc. Assuming all the levels are acceptable she'll do another 4-week cycle. This might go on for as much as two years or even more.

So the concept seems to be similar to the more traditional chemo, where they want to drop an atomic bomb on the cancer knowing there will be collateral damage that needs to be repaired, but this time they are going to use micro bombs for 21 straight days instead of one mega blast per week. Think "cluster bombs" instead of "hydrogen bomb." There will still be some of the same symptoms (nausea, fatigue, stiffness, and more) but hopefully at lower and more tolerable levels. Also, once the dosage is figured out there shouldn't be blackout periods where she can't be around people. This is the $10k per month medication I posted about yesterday, but it sounds like although these oral chemotherapies are relatively new, they have been around long enough that insurance companies will cover the costs. They are distributed by specialty mail-order pharmacies with pretty tight shipping controls. I wonder if they will be delivered by armored vehicle? Plan is for that medication to start by the middle of next week.

One of the unfortunate side-effects of the oral chemo is that it causes a degradation of bone density (similar to osteoporosis), so there will be a monthly injection of another new medication to help improve the bone density, or at least to slow down the degradation. The hope is this will also help prevent bone fractures. Some people experience hair thinning or even hair loss, a la traditional chemotherapy, but most do not. (I guess I won't be taking the BIC to my head in solidarity just yet.) Some of the other traditional nasty chemo side-effects are likely to come up, but hopefully not nearly as severely as last time around. However, this is going to be a rather long-term ordeal.

Well that's about all I have for now. The medical assistants and nurses and financial people are going to be making their calls and getting everything set up to start the next treatments on Wednesday, 29 June. We're not really good at waiting around for stuff like this, but there isn't really much choice. We are especially thankful to have doctors and nurses who are so willing to take a personal interest in Rory's care, and for the facilities and new therapies that are becoming available.

What are your questions? Shoot me an email ...