T-Day: Tamara's Twelfth Taxol Treatment

Ferris Bueller once said something about how fast life moves. If I remember correctly (Who am I kidding? Of course I remember.), he was talking about stopping to look around once in a while or you might miss it. Is it weird that I refer to a teen movie character as if he's some sage of wisdom that actually existed? Maybe. But he was right. How often has a 1/2 hour conversation changed the course of your life? A close examination might reveal such things happen more often than you think.

Take yesterday for instance. At 4:15, Tamara and I were preparing ourselves for a few things:

• The 12th and final treatment of Taxol (yay!)
• A potentially contentious discussion with her oncologist
• The next phase of her treatment - a phase that would introduce a drug called Doxorubicin.

Doxorubicin - The Red Devil Dye

Many of the oncology nurses we've talked to affectionately refer to Doxorubicin as "the red devil dye." Patients who describe it online have been known to refer to it as "the red dye of death." If you're picking up what I'm putting down, you have hopefully concluded that it is red and unpleasant.

This phase of Tamara's treatment would have begun next Monday (Jan 20th). The Doxorubicin would be administered every 3 weeks for 3 months (so a total of 4 treatments). We've been told to expect that Tamara will be out of commission for a full week after a doxorubicin infusion. She would then have 2 weeks to not feel like she's dying before the next treatment. So, it's no fun and for 3 months we've been preparing for the eventuality of this red devil dye.

But by 4:45 yesterday, we had decided (with our oncologist) to abandon this 2nd phase of treatment. I can't adequately express to you how huge that decision is. It's not hyperbole to say that it carries with it consequences that could result in life or death. What is hyperbole is my prior assertion that the decision was made in 30 minutes.

Formulating Opinions on Treatment

In truth, the seeds of this decision were planted before Tamara even started chemotherapy. She has been keenly aware since her diagnosis that chemo drugs are poison to be avoided if at all possible. In the beginning we were staring down the barrel of stage 3 cancer and had to move quickly to start fighting back. If our hopes are confirmed, that the cancer didn't spread to any lymph nodes, I will count it as a legitimate miracle. I think we were close to being too late.

But as the effects of the Taxol, carboplatin and Keytruda began to manifest; as she has done more research into what these drugs do, as she has had time to consider her options; Tamara began to see that the regimen we began was probably not her best option.

On the one hand, the Taxol and carboplatin have worked. One of the effects has been the shrinking of the tumor. We're very grateful for that particular effect. Some of the other effects have included hair loss, nausea, bone pain, a general degradation of health, financial strain, etc. Taxol is also known to increase the risk of heart problems, and nerve damage (neuropathy). Keytruda also has played a positive role, but comes with similar risks to the heart, and the rest of the body. So, while the tumor has shrunk, Tamara's system has undoubtedly paid a price; a price which will remain largely unknown for an undetermined period of time.

All of these side effects are well-known and you can find all of this information on cancer.gov - a fairly reputable source. There are also tons of influencers, bloggers, and forum participants who offer inconceivable amounts of information. It all gets pretty confusing. In the weeks leading up to today, Tamara has approached me with various tidbits of information and I've never really known what to say. I'm no doctor. I got a C in BIO 100 at ASU. I'm not qualified to give medical advice.

Over the holiday break, as Tamara was supposed to be enjoying the break from chemo, she approached me with a few facts about doxorubicin that she had somehow encountered. Knowing that she would start receiving that particular drug in just a couple weeks, I started to pry into her intentions. "Are you just venting about something you're worried about? Or are you wanting to do something about this?"

At the end of the day, Tamara is of sound mind, has more medical training than I have, and is in charge of her own healthcare decisions. I'm pretty good with confrontation when I need to be, so I have no problem going lacing up the gloves and getting into it with the doctors. I just need to know what my talking points are. I told her that if we are going to argue with doctors, we had better have some ammunition. Influencers and cancer.gov probably wouldn't cut it.

She took that to heart and secured for herself access to a medical library full of peer-reviewed articles & research. She found a lot of really useful information. Doxorubicin is associated with:

• High risk of heart failure (i.e. congestive heart failure, cardio myopathy, etc.). And the onset of symptoms can manifest anywhere from 14 days to 7  years after the first dose.
• High risk of neuropathy
• Leukemia
• Bone marrow suppression

We already knew that Taxol and Keytruda came with cardio toxicity and neuropathy. In fact, Tamara has already felt some neuropathy. Probably my fault for falling asleep during her last treatment, instead of helping her use the ice mittens and booties. (Okay, probably not my fault, but man I feel bad about that.)

Looking down that list of side effects, and knowing that we've already done damage, we had to ask if all of this would be worth it. 

• If we nuke the cancer, but also nuke Tamara's quality of life and life expectancy, what's the point?
• Are we really planning to stack 5 cardiotoxic treatments (Taxol, carboplatin, doxorubicin, Keytruda, radiation) on top of each other and expecting her heart to last until she has grandchildren?
• If she ends up with more-than-mild neuropathy, do we really want her to be on gabapentin (also cardiotoxic) for the rest of her life?
• The tumor has shrunk significantly. The doctors have told us that they want to achieve complete pathologic remission prior to surgery. But the only way to be sure that the breast tissue is cancer free is to analyze the tissue post-surgery. So, how can we possibly know pre-surgery whether or not we've achieved complete pathologic remission?
• And why are we adding more cardiotoxic drugs into her system, when we don't even know how much cancer is left in her body?
• We've been told that we don't want TNBC (triple negative breast cancer) to come back, because when it does, it comes back more aggressive and may not respond well to chemo. If we expose her body to more varieties of chemo, will the cancer be more resistant to them if it comes back?
• We have no reason to believe that there is any cancer outside the one breast. Is the risk of failing to nuke a hypothetical cancer worse than the risk associated with administering 6 cardiotoxic drugs?
• And if this red dye of death ends up causing leukemia, what the bleepity-bleep are we doing?!

Looking over all of that information together, and armed with a few peer-reviewed articles from medical journals, we felt like we had some very valid points that the oncology team had to take seriously.

Decision Dress Rehearsal

On Monday, the 6th, we met with a PA, who was filling in for the NP, who was filling in for the main oncologist. Tamara told her she had concerns about the next phase of chemo and was considering skipping straight to surgery. Tis poor PA then fielded our barrage of questions and she did her best to not commit to anything, while showing sympathy and answering our questions.

She also made sure that we scheduled an appointment with our main oncologist - whom we hadn't seen in a couple of months. If you ever get tired of seeing PAs and NPs ... just tell them that you don't want to follow the treatment regimen. Turns out, squeaky wheels do tend to get more grease. With that appointment done, we moved on to an uneventful infusion, and then went home.

Not much happened between that appointment and the one yesterday that is worthy of remark. I will say that a couple of the kids started sports again. Evan started flag football and Nathan started soccer. How we're going to make that work is anybody's guess. But we will ... we always do.

So, a busy week full of sports and a few bouts of Catan passed and yesterday finally arrived. We were scheduled to meet with the main oncologist and weren't quite sure what to expect. She had been adamant at the outset that this treatment regimen was the best thing available - using hours of her time to get us on board. We were expecting that same kind of fervor from her in defense of continuing this regimen.

Breaking the News to the Doctor

To our surprise, when she walked into the examination room at 4:15pm, one of the first questions she asked was something like, "Where are you on this regimen? Have you already made up your minds, or do I get a say?" That sounds sarcastic, but it was actually received in good humor - it was pretty funny.

I responded to that question with an equally cheeky response - something to the effect of "Of course you have a say. We have questions, but we're not oncologists." Both sides having established that we're opinionated but open to discussion, Tamara began to outline our concerns, opinions and questions. The doctor listened intently and answered our questions as clearly as she could, writing notes for us to take home as she spoke (a habit of hers for which I've become very grateful).

Adding to our surprise, she seemed to validate our concerns with anecdotes of her own. She described one case in which an anonymous patient of hers in the past actually succumbed to hearth failure - likely attributable to the chemo treatment. She admitted without hesitation that she doesn't have a crystal ball and that it's possible that Tamara could be that one unlucky patient that experiences heart failure with just 1 treatment of Doxorubicin. It's uncommon for something like that happens, but it's possible.

She was very forthcoming about the risks, and at one point even agreed with Tamara's assertion that "it's a gamble either way." She said that they (I don't know who "they" are) like to try and fit all the TNBC patients into this regimen, when the reality is that many aren't able to complete all the treatments. Some people's bodies just can't handle it. Every patient is different, even those with the same diagnosis, and sometimes the statistics don't apply. I, personally, think Tamara could have handled it. But "can" and "should" are two different things. Having established that, we moved into some really meaty territory.

Decision Points

We didn't know this until yesterday, but the oncologist also said that while its true that this regimen is statistically the best available for BRCA  1+ triple negative breast cancer, only 60% of patients who go through it achieve complete pathologic remission prior to surgery. So, we have a pretty high likelihood of needing additional chemo treatment AND radiation post-surgery. This was the point at which Tamara had decided she didn't want the Doxorubicin.

• If we do the double mastectomy and it is determined that we've achieved full pathologic remission (i.e. there is no cancer remaining in the tissue), Tamara would still need 9 more treatments of Keytruda.
• If we do the double mastectomy and active cancer is still found in the removed tissue, Tamara will still need chemo post-surgery. The chemo drug she'd be given in that scenario is called Olaparib. It comes in pills and would need to be taken for a year. She would also need radiation.

That was a pretty startling revelation, because it would mean we'd be introducing yet another cardiotoxic drug into the cocktail that was already planned. Yikes. And after discussing the likelihood that Olaparib might be necessary post-surgery, the oncologist was comfortable with the option of skipping Doxorubicin. Olaparib is actually intended for BRCA 1+ patients with TNBC. If Tamara was BRCA 1 negative, the Olaparib wouldn't be the best option. The oncologist didn't explicitly recommend that we skip Doxorubicin, but because we have a back-up treatment option that is specific to BRCA 1+ patients, the risk calculation for skipping Doxorubicin made sense to all of us.  At this point, we were already feeling pretty good about moving straight to surgery. But the doctor still had one more gem to reveal.

Apparently, the remaining tumor that we so-happily reported to be measuring 1.8 cm two weeks ago could ... COULD ... just be scar tissue. Yep. there is a decent chance that the almost undiscernible mass we saw in the mammogram could be nothing. We may already have achieved pathological remission with two Taxol treatments remaining. WHAT.

You can imagine the questions that flooded our minds when we heard that. "So ... why are we going scorched earth if we're not even sure that Napoleon still has an army?" This was the point at which I jumped off the Doxorubicin train completely.

Tamara's Path Forward

With all of that said, we're happy to report that the surgical wheels are moving. As we were leaving the appointment, we were told to expect a call from the surgical oncologist sometime in the next couple days. We got that call this morning and the consultation is scheduled for Thursday, Jan 23. Our oncologist said that she'd like to see the surgery happen within 3 weeks, so things could move pretty fast. Luckily, Mr. Bueller has prepared us for these kinds of rapid changes.

This will be a major surgery and an intense recovery. We know people who have been through it, and it doesn't look fun. There are still decisions to be made and none of them are easy. But we are over the moon that yesterday just may have been Tamara's last chemotherapy infusion. May the red dye of death forever be nothing more than a memory of potential dread. We're movin' on. 

What we need from you lovely people is prayers. Most of our network of support consists of religious people who believe in prayer. If you don't fall into that camp, we'd love for you to send Tamara your positive thoughts. Visualization is powerful - even if a deity is not the conduit of healing you envision. Whatever your preferred delivery system for good vibes, the result we're trying to manifest is complete pathologic remission. If we do this surgery and don't find anymore cancer, Tamara is done with chemo. So, we invite you to pray that the surgery will be successful and that the cancer is gone prior to it.

Your support and generosity continues to astound us. We can't thank you enough nor adequately express our love for you. Tamara's Tribe really is the best.

Read the next update

Read the previous update