Radiation: Half way home

As I mentioned in my previous post, I opted for the aggressive radiation regimen, based on the results of the MA-20 trial, and two others, which demonstrated a disease-free survival benefit in patients with early-stage breast cancer and clinically-positive nodes. Whether or not nodal radiation is needed in patients with micro-metastatic disease only is unclear, however, given my age and grade of my disease, as well as the low-risk of additional toxicity from treatments, I felt that the potential benefits outweighed the harms.

The worst part of radiation thus far has been the first day, when I was on the very hard and very cold plastic table for nearly two hours. I am unfortunately positioned on my left shoulder blade, so my left shoulder was quite irritated after two hours of pressure and not moving. Since then, it has been relatively smooth sailing (although I am getting really tired of getting weighed so often. Is it really necessary to weigh me more than once weekly? It's enough to drive someone crazy!)

I am now 15 treatments in (out of a total of 30, including the 5 for the post-lumpectomy boost) and overall feeling very well. My shoulder is getting tight again due to the resurgence of some cording (also called axillary web syndrome) so I am back seeing physical therapy, and that is helping a lot. I am not experiencing too much fatigue (and none compared to chemotherapy) and my skin is still doing pretty well- I have a little bit of a tan, but no burn or anything like that at this point.

My hair has grown back considerably (I actually feel like I woke up one morning with full coverage). My best guess at this point is that it is a good deal darker than my hair pre-chemo, but we will see how it fills out. I am working on my husband for a six-weeks post chemo picture.

The Next Frontier: Radiation. How much? How long?

For the most part, all patients who opt for lumpectomy undergo at least whole breast radiation in addition to surgery for local disease management (not all mastectomy patients end up having radiation).

The big question, in my case, was what radiation regimen I would pick. Basically, in terms of tissues to irradiate, I was given two options at one institution (whole breast only, or whole breast plus axillary, infraclavicular, and supraclavicular nodes) and one option at another (in radiation oncology lingo, "high tan"- meaning that they would get whole breast plus some, but not all, of the lymph nodes). In both cases, a post-treatment radiation "boost" to the lumpectomy site was recommended for improved local control.

How much?

Patients enrolled in the Z-11 trial (which looked at radiation versus axillary dissection in patients with 1-2 positive nodes, including clinically-negative nodes with micromets) underwent whole breast radiation, and whole breast radiation was found to be non-inferior to axillary dissection in terms of long-term breast cancer recurrence.

But-- the study did not address the question of whether nodal radiation improved outcomes when compared to whole breast radiation. Very recently, early results of the MA-20 trial demonstrated improved disease-free survival in patients who received expanded nodal radiation; the major downsides were a slightly higher risk of lymphedema and a significant risk of hypothyroidism. Results of the MA-20 trial were consistent with other recent studies evaluating expanded radiation.

How long?

In addition to the question of breast versus nodal radiation, there was also a question of how to break the radiation up over time.

Overall, I had three options:  hypo fractionated (i.e., short-course, 4 weeks)  standard (i.e., long-course, 6 weeks) or two weeks of radiation as part of a phase III clinical trial.

Since the results of the NEJM trial, hypofractionated therapy has become more and more standard. However, in interpreting clinical trial results, it is important to keep in mind the patient population involved. In the case of the short-course radiation, overall the patients were low-risk (only 25% under 50, 19% with high-grade disease, 11% with adjuvant chemotherapy) so my clinicians were concerned that the trial was not "generalizeable" to a patient like me. Another important note is that hypofractionated therapy was only offered for whole breast radiation-- not for expanded nodal radiation.

Drum roll please…

Overall, given the grade of my tumor (3) and the presence of certain pathologic features, prior work suggested that the radiation part of my therapy is very very important for me. So, I opted for the most conservative course: six weeks, including a lumpectomy boost, with radiation to local nodes. The major downside to adding in the nodal radiation is a risk of hypothyroidism (on the order of one in five patients), and clinical medicine is vey good at managing hypothyroidism. So, unlike with the ACTH versus the TCH, I felt that the benefits of the more aggressive radiation outweighed the harms, and went for it.

TCH 6 of 6

Done!

Just a very quick update because the movers are here today, but the last chemotherapy infusion yesterday went as smoothly as we could have hoped. I am definitely feeling more fatigued when I was in the beginning but overall the last one was the easiest, and I am very happy to be looking at the other side!

Overall, the first infusion was by far the worst, followed by the second one. I think the fourth and the sixth were the easiest, with the fifth being a little bit tougher because I caught a cold from my son, and the additive effects of chemotherapy and a respiratory virus were not fun. We did, however, all get to enjoy an unseasonably warm Halloween in Boston, which was a hoot ;)

Pregnancy-Associated What?!?

During medical training, I learned a lot about post-partum breast cancer. In particular, I learned postpartum breast cancer is generally diagnosed early, is generally treated as an outpatient, and patients generally do well. On my notes from my scientific basis of medicine lecture during second year, I wrote the following regarding pre-menopausal breast cancer: "high grade, generally advanced stage, extremely poor prognosis." The good news is that new treatments, particularly for Her-2 positive disease, have markedly changed the landscape for some pre-menopausal women. When I was in medical school, the major trial on herceptin as an adjunctive chemotherapy agent was ongoing; this drug has proven to be extremely effective for patients with the Her-2/neu receptor. Since then, two more monoclonal antibodies have been developed (kadcyla and pertuzumab) and both show great promise. In addition, data from more recent years shows that, after adjusting for stage of disease at diagnosis, age is not an independent risk factor for poor outcomes, at least for Her2-positive disease.

However, despite all of my medical training, I had never even heard of pregnancy-associated, or post-partum breast cancer.

Conventional wisdom is that pregnancy, particularly prior to age 30, reduces the life-time risk of breast cancer. The dirty little secret: While pregnancies clearly reduce life-time risk, there is actually a slight increase in breast cancer during the intra- and post-partum periods. In fact, approximately 1 out of every 3000 pregnancies will cause breast cancer. Further, there is epidemiologic evidence that pregnancy-associated breast cancer may actually be increasing. This increase has largely been attributed to increasing maternal age, but the underlying cause remains unclear.

One in 3000 is a very small number-- but it is not zero -- and it is a risk that every pregnant and breastfeeding woman should know about. Finding lumps during the intra- and post-partum periods is difficult, because breasts are dense, and clogged ducts are common. However, if a lump is found, it is very, very important to get it checked out-- up to 20% of lumps during pregnancy and lactation turn out to be malignant, and, in general, pregnancy-associated breast cancer is aggressive and nasty-- so early diagnosis is particularly important to ensure the best possible outcome (Note that, after adjusting for stage at diagnosis, the 95% confidence interval crosses one, which means there is no statistically significant difference).

TCH #5 of 6: The Home Stretch!

Infusion #5 in— which means I am getting very close to the end! At this point, I have figured out ways to keep most of my chemo-related symptoms in check and I am obsessively rubbing my head to monitor for new hair growth (it is there!). I am also still going to the gym 3-4 times per week, including one strength-training workout with my trainer per week (I wear an arm sleeve during the exercise, but am not sure this is actually necessary).

At this point, the allergists have worked out a regimen that works well, including a slow infusion and pre-treatment with singulair and the tried-and-true aspirin. I have not had any problems since, but do get quite bored with the 10-hours of infusion time.

Side effects of TCH & Management

In general, the steroids part of the regimen remains the worst part for me (and my husband) because they make me batty. However, this only lasts for three days, and, because of the desensitization unit, I am no longer getting high-dose IV steroids, which helps a lot.

Other than the steroids, the other nagging symptom is the metallic taste on my tongue—it is fairly predictable, and very difficult to manage. The two strategies I have come up with are masking the taste (mint gum works well) and acupuncture. Acupuncture does not cure the symptom entirely, but I think it helps and is better than doing nothing.

Here are the rest of the symptoms I have experienced, and what has helped:

Bone pain (from neulasta): The major intervention that has helped with the bone pain is going to the gym. I do not do a hard work out, just relatively light and short cardio, but this keeps my joints from getting stiff and significantly reduces the bone pain. Plus, it was recently shown that regular exercise during chemotherapy and radiation is beneficial to cancer patients-- even during therapy. So there are many reasons to do it! Although in the past, the medical establishment has been reluctant to recommend exercise during acute illness, in nearly every setting in which it has been studied (post-MI, intensive care patients, others), exercise improves outcomes.

In addition to going to the gym, I have maintained pre-treatment with Claritin and naproxen, then Claritin x 4 days after injection and naproxen twice day for four days after injection.  I am not sure that all of this is actually necessary, but now that I have a system that works, I am reluctant to change it.

Dry eyes: Use of preservative-free eye drops on rare occasion, and acupuncture, which was recently written up in a major ophthalmology journal as one of the optimal treatments for this condition. Acupuncture has been demonstrated in many clinical trials to be a very useful adjunct treatment in chemotherapy symptom control; click on the links for a list of WHO-recommended uses and clinical trial summaries.

Peripheral Neuropathy: I definitely experienced some peripheral neuropathy in my infusion arm after the first infusion. This has been very well controlled (I have almost none at this point) with both B-complex vitamins and acupuncture.

Nausea: Overall, I have had very little nausea, but I am given aloxi prior to every infusion. What little nausea I do get is very well controlled by acupuncture.

Reflux: Pepcid once per day on the day of chemotherapy, and once per day for four days following each infusion.

Hair, Redux: A Few Days Prior to TCH Cycle #5

2.5 weeks after TCH cycle #4

We had a great time at a wedding this weekend- I was even able to find a deco-style headband with some flare to wear with my dress! My mother very kindly took me shopping for more headbands, and we were even able to find some fabulous ones in leopard print (which normally I would never wear unless it is Halloween!). I think that the added flare helps to add a distractor to my very thin hair, and sends the message that I am not sick. 

Last week, in clinic, I was wearing a scarf, and my patient told me at the end of the visit that she would pray for me. While it was a nice sentiment, I hate being treated as if I am sickly—that is not the sort of attention that I want! I am still grateful to my friend who took one look at me in the scarf and said, “Take that off- it looks terrible!” That was exactly what I needed to hear to gain the courage to just walk around as I am! Perhaps I will wear the leopard print to see patients next week instead.

Hair Today... Gone Tomorrow?

As with nearly every cancer patient, the idea of losing my hair was really, really hard for me. Partially because hair is such an outward expression of beauty in our culture, but mostly because hair loss screams “I have cancer!” I do not feel sick (and nor do I consider myself to be a sick person!) and I do not want to be treated that way.

How my hair loss after TCH went:

Cycle #1 (Weeks 1-2): Lost all of the hair on my bikini line, and all of my nose hair (which, by the way, I miss WAY more than the hair on my head!). I cut my long hair down to chin length, so that I could make the change gradually.

Hair, exactly 7 days after infusion #1

Cycle #2 (Weeks 1-2): My hair started to fall out quickly, but the thinning was not particularly noticeable in terms of how I looked. I could not stand the constant thinning, though, so I consulted an amateur hairdresser (my husband... did not want to pay for a haircut that would last three days). Unfortunately, given that all of his experience in hair cutting has been been with my 3.5-year-old son, the  intermediate hairdo made me look a little like Brienne of Tarth (this is not recommended). About 10 days after cycle #2, the thinning got to the point that I just shaved my head down to ¾ of an inch.

The intermediate look (not recommended)

Cycle #3 (Week 1): The nadir. On TCH, I have not lost my hair entirely, just had a ton of thinning. This is the thinnest it got.

5 days after cycle #3

Cycle #3 (Weeks 2-3): My hair started growing back... noticeably! Lots of short, platinum blond sprouts, which is something of a return to my pre-adolescent hair. My daughter and I are now in a race to see who can get hair to her chin first!

Cycle #4: We will see how it goes. My eyelashes and eyebrows are still in place, and the hair on my head growing pretty quickly. No signs of life for my nose hairs, though…

If you are interested in another photo journey of hair loss and return, a good set of pictures can be found here.

How I handle my mostly bald head:

Given my fear of hair loss, I tried the normal “hiding” strategies—bought a wig (but have never picked it up, let alone worn it outside), bought a hat with hair, and now have quite a scarf collection. I think I wore the hat with hair for one weekend, and I wear the scarves occasionally when I see patients, but I never ever wear the wig.

To some extent, I feel like I am lying when I wear the hat (or probably the wig)—part of the reason cancer and hair loss has such a stigma is because people are embarrassed about it. And, as I have observed in many social arenas, if you think it is embarrassing and a stigma, then it is. If you do not think it is embarrassing, then it is not. Think about the popular girls in high school. The vast majority of them were mean, and not particularly accomplished. Why were they popular? One reason. They thought that they were. Same thing holds true for hair loss in cancer. If you think there is a problem, and try to hide it, then people will think you are sick and trying to hide it. If you walk around proudly like you feel good and you are not sick, then everyone else will think the same thing.

So, I have settled on not hiding my relative lack of hair, for the most part. I do wear a scarf when seeing patients, and I have mixed feelings about this. I am not sure it is entirely appropriate to have patients see me with no hair, but wearing the scarf definitely invites comments and concerns from patients that I never get when I am bare-headed. For example, I was seeing a delusional patient (who was literally slapping away bugs that were not there) and s/he told me that I clearly had worse problems than s/he did. Another (very kind patient) told me at the end of a visit that s/he really hoped the cancer is okay, and yet another brought me a bar of chocolate.

What works for me?

Most of the time, I wear a "bang buster" headband from lululemon, which frames my face, and gathers the small amount of hair that I have, to make it look like I have more than I do. I also wear dangly earrings, which also help with the illusion of hair.

I go around with a headband and earrings about 95% of the time. Wearing my headband, I have gotten precisely one strange look (far less than with the other strategies) and have never had anyone ask me if I have cancer, or if I am doing okay.

My advice? If you act like your bald head is totally normal, everyone else will, too. 

Infusion #4: Past the Halfway Point!

Infusion #4 going in as I type.

This is very exciting, as our goal all along was to get in 4-6 cycles of traditional chemo. The major clinical trial was conducted with TCH x 6, followed by Herceptin for a year, however, more recently presented data suggests that 4 cycles is non-inferior to 6 cycles, and so, in my mind, I consider 4 a must and 6 ideal. But the great news is that I reached the minimum goal!

Back on the allergy unit again, which, while painfully slow, is honestly not that bad. For the second time in a row, I was able to avoid the high-dose steroids that are the worst part of the regimen for me. I would say the second worst part is the neulasta, followed by poor wound healing and a funny taste. The other symptoms are manageable. At this point, I have most of them under control with over-the-counter and complimentary- and-alternative medicine strategies.

As for how things have gone, each infusion has gotten easier. The first was definitely the hardest, mostly due to dread (as my very wise Godmother reminded me, the dread of something is often worse than the reality! And this has definitely been the case for chemo and me).  It was also hard because I did not know how to manage the symptoms that come with chemotherapy, and so my pre-and post-infusion protocol has gotten better with each round. Second was better than first, third better than second, and I am hoping fourth better than third.

And the really exciting thing?....

My hair is growing back!!

(And, in one of the greatest comebacks in sports, the Americans won 8 in a row to keep the cup home!)