Tips for Weaning Quickly

As I discovered a lump while breastfeeding, and was still breastfeeding exclusively at the time of my diagnosis, one of the relatively uncommon problems that I faced was how I was going to wean from making over 35 ounces of milk per day (over 20 ounces of which were from my affected side- of course it was her preferred breast) down to zero by the time of surgery.

I needed to wean off the affected side for a several reasons. First, I would not be able to feed or pump post-operatively, for fear of opening up the incision. Second, if I continued to have high milk production on that side, I would develop engorgement, which predisposes to mastitis and post-operative infection. Third, post-operatively, lactating breasts are at risk for developing a condition called a milk fistula, which is not dangerous per se, but very annoying to deal with. Finally, even if I did not wean prior to surgery, I was going to have to wean prior to initiating chemotherapy.

Another, more subtle problem was that weaning predisposes to engorgement, which predisposes to mastitis. If I developed mastitis, my surgery would be delayed, and I really, really did not want that. So, I was walking a fine line between weaning quickly enough to be able to stop feeding on the affected side by the time of surgery, and weaning slowly so that I would not develop engorgement or mastitis.

At first, I used the tried-and-true method of dropping a feed per week. This worked for the first two weeks, and I was able to reduce my production from about 20 ounces per day to about 12- but still well above where I needed to be at the time of surgery.

I had a very difficult time finding resources for mothers needing to wean quickly, but finally got in touch with a lactation consultant, who offered some helpful tips. She suggested the following:

- Rather than trying to drop one feed at a time and then draining the breast, only take off one ounce at a time. Repeat as many times as necessary throughout the day (even up to once per hour if that is what is needed to prevent engorgement). 

- Never completely drain the breast. The major driving force in milk production is mechanical emptying of the breast. As long as the breast senses that there is some milk present, it will stop making more.

- Sage tea. I could not find any hard data supporting this suggestion, but a fairly standard approach for hyperlactation is a couple cups a day for 3 days. Sage is thought to be a powerful suppressor of milk production, and at least anecdotally, it seems to help some people. (I did not find it particularly helpful myself). [If you cannot find fresh sage, most Whole Foods carry sage tea bags in their medicinal herbs section].

- Jasmine oil.  Apply to breast several times per day. Again, I could not find any clinical trials or hard data supporting this suggestion. [I found some at Whole Foods in their "cosmetics aisle."] Personally, I found that pure jasmine oil worked remarkably well, and quickly. Plus, there is the added bonus of smelling like a flower shop!

- Ice packs. Ice is, in general, more useful in the setting of stopping a milk supply from becoming established, but may be worth a try.

- Tight fitting bras. Another intervention generally more useful at preventing the establishment of a milk supply rather than stopping milk production, but also may be something to consider.

- Bromocriptine. A prescription drug that can be used to treat inappropriate lactation. 

In my case, using a combination of mechanical suppressants (ie, not fully draining the breast), jasmine oil, and sage tea, I was able to get down from 12 ounces per day of milk production to minimal production in less than a week. I avoided the bromocriptine, and was thus able to feed my daughter using my unaffected side until chemotherapy started several weeks later. I did not quite make my goal of breastfeeding her for a whole year, but came very close, and I feel good about that.

One Week Later

Officially one week after the first TCH infusion, and, all things considered, I am not feeling too badly.

For the first few days post, I had a lot of tingling in my fingers, a bit of a tremor, and even some difficulty... texting (we live in an age of digital communication!). Fortunately, this wore off over the weekend and I am back to my usual response times. I took the B complex vitamin as was recommended- no idea if this helped or not- but I do not really care, as I am feeling better overall.

I did also have some fatigue, bone pain, and muscle aches over the weekend, all much improved by Monday (5 days post-infusion and 4 days post-neulasta). The fatigue and bone pain are now almost entirely gone, and the myalgias are improved to the point that I am going to take myself to the gym this afternoon.

The major lingering symptom at this point is a really awful metallic taste in my mouth, which also causes most foods to taste like they are drowning in a sea black pepper. Normally I like black pepper, but this is a little much. I did try a sip of wine, which tasted a lot like Robitussin, so I think it will be a while before I turn to that again. Coffee on its own is tough, but chocolate tastes pretty normal, so I turned my usual non-fat latte into a mocha. The coffee mochas taste delicious!

When I was a resident, one of my co-residents had a baby, and, amazingly, through all of the overnight calls in the ICU and the other ugly things about residency, managed to exclusively breastfeed her baby for over a year. When I was a fellow, and facing all sorts of obstacles when it came to breastfeeding, I often thought of her, and repeated the mantra, "If she can do it, I can do it." I am trying to look at chemo the same way.

The weekend when I was first diagnosed, I paged my OB about my IUD, because I was so freaked out about "feeding the tumor." The OB who answered my call started the conversation by saying, "I had it, too. It is going to be a rough year, but you are going to get through this." She was the first of many to come out of the wood work (breast cancer is horrifyingly common) and tell me that I will make it through. And so, just as with breastfeeding, I think to myself: if she can do it, then I can, too.

The Waiting Is the Hardest Part

One of the hardest parts of the whole process for me was the waiting game that came in the beginning... First, waiting for the biopsy results. Then, waiting for surgery. Then, waiting for chemo.

Even though I kept things moving relatively quickly, there was about a month gap time between diagnosis and surgery, and almost another month between surgery and chemo (July 4th is notoriously a bad time in the hospital).

As I said at the time, as soon as I got the biopsy results, if I could have gone straight to the ED and had surgery, I would have. Granted, I might have done other rash things that I did not want to do (like immediately opting for a bilateral mastectomy, for example) but that is a story for another post.

Since there was nothing I could do about the wait, I decided to come up with a list of things that I could do in the mean time to improve the situation as much as possible. Below is a bulleted list of those things, by no means exhaustive, but jumping off points of sorts.

1. Changing my birth control.

When this whole mess started, I had a Mirena IUD in place for birth control. IUDs are a very safe, effective, and easy form of birth control. The Mirena, unfortunately, also has embedded hormones, and secretes low-levels of progesterone, thought to mostly act locally. While the jury may still be out on whether or not the Mirena is safe in patients with breast cancer (particularly in progesterone-receptor negative disease), there is theoretically some systemic absorption of progesterone and I certainly did not want to be doing anything that might feed the tumor in any way.

Non-hormonal methods of birth control include classic barrier methods (such as condoms, the sponge, or the diaphragm) as well as the para-guard IUD (also known as the copper IUD). Any of these birth control methods are safe in any kind of breast cancer, however, the copper IUD is the most effective method of birth control (as an infectious diseases specialist, I have to comment that it is not the most effective at preventing the spread of sexually transmitted infections!). Unfortunately, unlike with the Mirena, periods tend to be heavier, but other side effects tend to be less.

So I switched my IUD out very quickly to a paraguard, and immediately took a deep breath that at least I had taken away a food source for the tumor- and this was all in my hands! (And, as an aside, I have had no problems with the paraguard whatsoever. If anything, I might even like it better than the Mirena).

2. Exercise.

Physicians often sound like broken records when it comes to diet and exercise, but it is true:  The better shape you are in going to surgery (or to chemo), then the easier time you will have getting through. After having my first child, I made getting to the gym a priority, and do weight training once a week and dedicated cardio work outs three to four times a week. (Plus, exercising has been shown to reduce your risk of breast cancer recurrence by up to 45%!)

Even if you do not have access to a gym (or simply have no time to make it there), here are some other simple things you can do:

- Get a pedometer and set a goal. A general recommendation is 10,000 steps per day. Even if you cannot start at 10,000 steps, pick a place you can start and then work your way up. Rome wasn't built in a day! Even in studies where activity is not increased at all, just knowing how much you are actually moving around can lead to weight loss and improved physical fitness.

- Stop taking the elevator, and walk up and down the stairs instead. A little bit goes a long way.

- Take public transportation instead of driving. This forces you to walk a little bit on each end, so you move around a lot more.

- Offer to take your friend's dog for a walk.

3. Diet.

Unfortunately, multiple studies have demonstrated a clear epidemiologic link between alcohol consumption and breast cancer; this association has even been shown even with light drinking. Does this mean that you have to give up every glass of wine for the rest of your life? No. But consideration of reducing intake is probably wise.

Coffee, on the other hand, may significantly reduce the risk of breast cancer recurrence! Two cups a day was associated with significantly reduced risk among tamoxifen users. My husband likes to make fun of me for being an addict, but now I have a great excuse!

4. Educate yourself.

The delay between diagnosis and treatment gave me some time to take a step back and figure out how I wanted to tackle the situation, and to do some of my own research, so, by the time I did go into the OR, I felt really good about my decision. The power of the positive attitude is real.

Started Chemo Today

TCH Infused Today!

Today, I started my chemotherapy regimen. I am working on another post laying out how I ultimately came to the decision of which regimen to pick (ACTH, TCH, or a clinical trial comparing TH to  TDM1 (aka kadcyla)), but I want to make sure I go through the trial data thoroughly, and so it is not ready just yet.

Follow up

At my follow up visit with my oncologist, Ann Partridge, I learned that the lighter trial chemotherapy regimen might be an option, after all. I was thrilled to learn this, mostly because it mentally put me back into that "lower risk" category where I desperately wanted to be. However, given the initial gut reaction of the tumor board, and all of the soul searching I did in the interim, I decided to stick with the plan for TCH and just move forward with treatment. The option, however, made me feel even better about the decision to chose the TCH over the ACTH regimen. I did enroll in the prospective cohort study of young women with breast cancer, "Helping ourselves, helping others."

The Infusion

After consenting to all of the risks of chemotherapy, I started the infusions: first, a loading dose of herceptin, followed by taxotere, and finally carboplatin. The herceptin loading went very, very smoothly. My husband and I worked on a Sunday crossword, started a game of scrabble, and were able to quietly entertain ourselves the whole time. I got sort of a funny metallic taste in my mouth, but otherwise no problems.

The taxotere, on the other hand, was another story. After about two minutes of the taxotere infusion, I began to have severe nausea, followed by chest wall tightness, difficulty breathing, and finally facial flushing and swelling (allergic reactions to taxotere/taxol are quite common). The symptoms occurred so quickly that my husband noticed something was wrong when I could not put a word together on the scrabble board- he looked up and my face and ears were bright pink! We called our excellent nurse, the infusion was stopped, I was loaded with massive doses of drugs (methylprednisone, pepcid, and benadryl).  All of my symptoms resolved within a few short minutes. After a touch of observation, the infusion was restarted (slowly) and I was able to make it through with no more problems (other than a bit of loopiness with all of the steroids and benadryl-- no more scrabble after that!). By the time I got to the carboplatin, I was so sleepy from the benadryl, I barely even noticed the infusion.

Home and Next Steps

Now back at home and doing well- the benadryl is wearing off so I can think properly again. Going to take a slew of meds and vitamins tonight to prevent side effects from the chemotherapy agents (loratidine and/or naproxen for bone pain associated with neulasta (an area of active investigation) and B6 for prevention of neuropathy) and we'll see how it goes! I admit the data behind both of these prevention strategies is not great, but the risk is low, and B6, at least, has an excellent track record in other areas.

The way I look at it, I am now down to one hand! One down, five to go.

And the day after chemo...