Six long weeks, and more on hair

Hair re-growth post-chemotherapy:

Now about 10 weeks (2.5 months) after my last infusion, or almost two months after the end of my last cycle (still getting herceptin for several more months). I hit a big milestone-- I can now put a bow in my hair!

Radiation Side Effects

Yesterday, after six and a half groundhog day-esque weeks, I put radiation behind me. All in all, radiation was a good deal easier than chemotherapy.  I can tell that my body is recovering because my exercise tolerance is way up while my need for sleep is way down.

Locally, my skin held up pretty well. I had a burn for about one week in my axilla (this has now resolved-- the axilla only got 23 doses whereas the breast got 25, plus a 5-treatment boost to the lumpectomy site, for a total of 30). I have some skin breakdown around the surgical incision line, primarily because I have a skin fold there, and radiation gets amplified in folds. My cording (also known as axillary web syndrome) flared during the nodal radiation, but has improved significantly with physical therapy. All in all, not too bad.

Radiation Creams

Throughout the treatment I moisturized the area at least twice every day with one of four creams: aquaphor, California Baby calendula cream, Jean's cream, and MyGirls cream. Early on (and overall), I found that MyGirls cream was by far the best (I used it almost exclusively for the first five weeks or so). The aquaphor and the California baby were useful once I started to get some skin breakdown and a burn to mix with lidocaine gel for local relief (MyGirls cream was really too light for this purpose). I did not find the Jean's cream to be particularly good for anything, and so abandoned its use pretty early on.

Hair, six weeks (or so) post-TCH

It is growing in... Due to the color, it is sort of hard to tell, but I now have full coverage, and I almost look like I might just have decided to join the military (think GI Jane).

December 25, 2013

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.