3/18/21: Lupron + Medical Oncology NP Appointment

I wore a KF94 mask again today, and they didn't bother giving me a new surgical mask.

I was originally scheduled to see my oncologist, but at some point the online patient portal showed that the appointment was switched to the NP. I don't know why, and I don't really mind. I like my NP a lot now.

I had expected to get my blood drawn today, and I'm curious to know what my estradiol number is. But my NP said my oncologist decided to put it off for another month, so that my body will have had 3 months to adjust to Tamoxifen before we look at my hormone numbers again.

First we went over all my side effects. 

I seem to have a runny nose all the time now. Sometimes I wonder if I might be developing seasonal allergies, but it's also listed as a side effect of Tamoxifen, so who knows. I keep meaning to try some seasonal allergy medication, just to see if it helps, but then I never quite feel like the runny nose is that bad, I feel like I can put up with it. Interestingly, my NP asked if my nose hairs have all grown back! It's true that I lost all my nose hairs during chemo, and whatever hair that is growing back now, including on my legs and underarms, has grown back much thinner. So, maybe part of the problem is that I just don't have enough nose hairs anymore. 

My hair is growing in thin, presumably because of the Tamoxifen. If I don't shower for a couple days, and my hair gets a little matted, my part becomes pronounced in the back. Not quite as bad as in this photo, but similar, and definitely evident. The friendly medical assistant I saw today was very positive and encouraging about my hair growing back, but I told her I still just don't feel like myself, and I'm impatient for my hair to grow longer. 

The first three fingers of both hands continue to be very mildly numb and tingly. This persistent neuropathy doesn't interfere with my activities of daily living at all, but I can feel the numbness and tingliness when I tap my thumb and fingers together. 

I still feel some stiffness in my fingers, particularly in the morning when waking up, but it's not nearly as severe as it was before. My legs are much improved, too, and they no longer feel stiff like they did when I was on exemestane. I first noticed the difference in the kitchen; in the time it took to cook dinner, my legs used to stiffen up so that sitting down to eat felt like a huge relief. Thankfully, that's no longer the case. Going up and down the stairs feels easier now, too.

After talking through all that, the NP did a physical examination, which went fine. I'll see my oncologist again in another 3 months.

Upstairs in the infusion room, the nurse who gave me my Lupron shot was new. She said she's a traveling nurse from Florida! I don't know how hospital staffing works, but she said she's filling in for one of the regular nurses for the next 3 months.

Incidentally, today my left arm only feels sore at the vaccine injection site if I touch it. I suspect all soreness will be gone tomorrow.

3/17/21: Day 3 of Moderna Vaccine Side Effects

Much better. Today I no longer felt especially cold or tired. My left arm is still sore, but only around the injection site, and I can lift my arm above my head; the soreness isn't limiting my activities anymore. 

3/16/21: Day 2 of Moderna Vaccine Side Effects

Last night I was so cold. I piled on the blankets and my hands would not get warm. Maybe that counts as "chills", a common side effect, though I wasn't shivering or anything. Today I still felt cold, but not as much as yesterday.

I've also been kind of tired, but again, not as much as yesterday. Last night I went to bed before 9:00 pm, which is super early for me. 

My arm is still very sore, and I still can't lift it above my head. 

3/15/21: I Got My 1st Dose of a COVID-19 Vaccine

My hospital network has been sending me regular emails about the availability of COVID-19 vaccines. They've been exceptional at communication, letting me know what groups are eligible when, and what to expect from the hospital. 

On February 23, I got an email saying that, based on my medical records, I am now eligible for the vaccine because I have two medical conditions that put me at increased risk for serious illness. I was a little surprised because I thought breast cancer was my only qualifiying medical condition. Looking at the CDC list of certain medical conditions, I think the hospital must be counting the loss of heart function that I experienced while on Herceptin as a "heart condition". The email said that once the hospital could confirm their vaccine supply, they would send another email with an invitation to make an appointment. 

Two days later, I got an email with a link to schedule an appointment. The link was specific to me, and I never had to enter my name or any personal information at all. Literally all I had to do was select a location (out of 11 possible sites), a date, and a time. Once my appointment was scheduled, I immediately got a confirmation email with a link for further information. The hospital's vaccination information site is clear and straightforward and includes maps, driving directions, parking information, basically everything I needed so I knew what to expect. The process was so smooth, it's really reprehensible that the state web site for public vaccination centers has been such a disaster. 

I took the earliest available date, which was 3 weeks away at the time.

So today I had my appointment! I went to my chosen site, which was actually the hospital's records building. The entire process from check-in to the 15-minute observation period was seamless. I got the Moderna vaccine, and made my appointment to get the 2nd dose in 4 weeks. 

The nurse who gave me my shot was super kind and helpful. I told her I had heard that a potential side effect - swollen lymph nodes in the underarm area - can be confused as a symptom of breast cancer, and I had seen an article recommending that patients who have had lymph nodes removed on both sides (as I have) should request to get the shot in a leg instead, which would help prevent lymphedema and also avert the potentially alarming side effect problem. The vaccines were being administered in curtained off areas, so there was enough privacy for me to pull down my pants if I needed to, but since I've had injections in my arm before (like the flu shot), how important is the leg recommendation really? She was very attentive and said she didn't know, so she went to ask the pharmacist. When she came back, she said she spoke with both the pharmacist and the physician assistant, and they said getting the shot in the leg wasn't necessary because I didn't have a lot or all of the underarm lymph nodes removed, and also because I don't have a history of injections in the arm being a problem. 

I got the shot in my left arm, since I had fewer lymph nodes removed on that side. The nurse told me not to worry if I get a rash at the injection site, a common side effect of the Moderna vaccine. She recommended drinking extra water to stay hydrated, and said I can use ice or a cold compress if the injection site hurts, or I can gently massage the area, if that helps.

So far my left arm is feeling very sore. I actually can't even raise my arm over my head because the injection site hurts so much. My arm is achy all the way down to my left hand, and I have this odd sensation like there is something cold running through my veins. 

2/19/21: Lupron + Other Updates

I think today was the first time I felt like my monthly Lupron appointment was a burden. I guess I had gotten so used to weekly appointments for chemo, and then Herceptin infusions every 3 weeks, that when I got down to only Lupron appointments every 4 weeks, it felt luxuriously infrequent by comparison. Normally I don't mind going in, but it's school vacation week, and a snowy day; I would have preferred to sleep in, and not drive in the snow.

There's been a lot of chatter about upgrading your masks for COVID-19 protection. I recently bought some KF94 masks, and I wore one for today's appointment. In the past, I would wear a surgical mask. The Cancer Center provides surgical masks for people to use instead of cloth masks, but if you already have a surgical mask, they just like to confirm that it's a new one. I was a little confused today when the person checking me in handed me a surgical mask along with my screening sticker and identification tags, without asking if my mask was new or not. Maybe she thought it was made of cloth? Or maybe they have a new procedure to hand out new masks to everyone. I decided not to swap out my mask since a KF94 is supposed to be better than a surgical mask, but I think if it happens again, I will wear their surgical mask on top of my KF94. That way they can be assured that I am wearing a new mask, no matter what other mask I may be wearing. 

(As an aside, I wonder if they want to be sure that everyone is wearing an actual medical grade surgical mask. All the surgical masks we have been able to purchase since the pandemic started look like surgical masks, but none are labeled with ASTM standards. By contrast, the surgical masks I bought from CVS for myself during chemo, before the pandemic, were clearly labeled as meeting ASTM Level 3 standards.) 

Anyway, the shot went smoothly, and I was glad to have the nurse who I think gives the best shots. 

Here are some other updates:

I have been diligently applying the scar cream to my port scar every night. It's part of my routine now, I put it on after brushing my teeth. It doesn't seem like it's doing anything, though; I think the scar looks the same, but it's hard to tell on a day-to-day basis. 

I think I'm doing fine on Tamoxifen. I have side effects, but they don't disrupt my activities of daily living, so I figure they are manageable. I expected the joint stiffness in my fingers to go away once I stopped exemestane, but this page lists joint stiffness as a "less common" side effect of Tamoxifen. I wonder if already having joint stiffness made it more likely for it to stick around when I switched to Tamoxifen... Very sadly for me, my hair is growing back thinner than it was before chemo; hair thinning is listed as one of the "more common" side effects. Also, my vision is poorer, but it's been a little blurry ever since chemo, so it's hard to know what to blame. Getting my eyes checked is on my list of things to do after the pandemic.

Meanwhile, the first three fingers on both my hands continue to feel very mildly numb and tingly. Most of the time I don't even notice it anymore, but if I tap my fingers together, I can feel it. 

1/22/21: Lupron + I Picked Up a Prescription

The medical assistant who took my vitals today introduced herself because she's new. She's the second new medical assistant I've had in recent months, and it does make me wonder what happened to my old familiar medical assistant. 

It's interesting... For the 12 weeks I had chemo, I saw the same medical professionals week after week. They all knew me, and their friendly faces were so comfortingly routine. Now that I'm a year out from chemo, I'm seeing new faces all the time. I'm not sure I can describe the feeling. It's kind of like staying an extra year in school; all the people you associated with the place have moved on, but you're still there.  

My nurse today was one I hadn't seen in a while; she used to be the "new" nurse, but now she's just in the regular rotation. I like it when she's my Lupron nurse because her shots are always painless! She says it's because she does the injection veeeeeery slowly. Any time I mention how much I appreciate her painless shots, she says I made her day by saying so!

After the shot, I picked up my Tamoxifen prescription. I'll start it tonight. Wish me luck.

1/21/21: Medical Oncologist Phone Appointment

One of the nurses I talked to last week warned me that my medical oncologist might run behind schedule. She called 30 minutes late today, but I didn't mind. I appreciate it when I am not rushed through an appointment, so I just imagined that she was talking with other patients with lots of questions and issues, like me. 

She said that FSH and LH aren't really reliable measures of menopause while on Lupron, so she mainly looks only at the estradiol. She confirmed that she does look for a very low number, like the "<5" value I had last July, before the spotting started. My two recent blood tests, however, had my estradiol at 31 and 10, which suggests that my ovaries are still functioning.   

So why would the Lupron just suddenly stop working? She thinks it's not that the Lupron stopped working, but that my ovaries starting working again. Typically, chemotherapy puts the ovaries into a chemically-induced menopause - sometimes called "chemopause" - which is sometimes permanent, sometimes temporary. I finished chemo over a year ago, and my doctor figures my ovaries are only now "waking up". The Lupron is probably as effective as it's always been, but previously it was doing a good job suppressing chemo-suppressed ovaries, and now it's doing an okay job suppressing functioning ovaries. I asked if having partially suppressed ovaries is normal? She said it's "a little weird." 

I am already on the highest monthly dose of Lupron. Apparently it's not unheard of to increase the dose even more by giving the shot every 3 weeks instead of every 4 weeks, but she said her colleagues didn't recommend it, since some patients get by on just half the dose I'm getting. There is a 3-month dose, which is 3 times the monthly dose, but it could produce inconsistent results, with the higher concentration of medication at the beginning of the 3 months leading to more side effects, and the wearing off of the medication towards the end of the 3 months leading to estrogen production.  

So, she suggested I stay on the same dose of Lupron, and switch from exemestane to Tamoxifen. This is the #2 scenario of Ovarian Suppression + Tamoxifen that I described in this post. I have to say, I am so glad I have that post to refer back to! I was feeling uneasy about switching to Tamoxifen, because it feels like I'm "settling" for a less aggressive treatment, and I want to feel like I am doing everything in my power to reduce the chances of a recurrence. That post reminded me that I've always been in an intermediate "grey area," not clearly high risk, but not clearly low risk either. The original decision to take exemestane instead of Tamoxifen was an effort to err on the side of caution. I was prepared at the time to switch to Tamoxifen if necessary, only it turns out the precipitating factor isn't the exemestane being unbearable, but rather the Lupron being ineffective. 

I was surprised that my doctor did not even bring up oophorectomy as an option. Since that was the path I was expecting, I asked her why not. Basically, she appears to have a philosophy of being conservative when it comes to surgery. Like, removing body parts is pretty drastic, so don't do it unless you really have to. This is definitely Ken's perspective, and I lean in that direction, too.

I told her my concern about "settling" for a less aggressive treatment, since my current treatment of Ovarian Suppression (via Lupron) + Aromatase Inhibitor (via exemestane) is supposed to be more effective. Shouldn't I consider switching from Lupron to ovary removal for the ovarian suppression, and sticking with exemestane? My oncologist basically answered the question by assuring me that Lupron + Tamoxifen is still an aggressive course of treatment. She didn't say it explicitly, but I got the feeling she thinks, at least for me, the risks of ovary removal are not worth the benefits of exemestane. 

I'm a bit conflicted. On the one hand, I know I am "settling" for a less aggressive treatment, but on the other hand, I'm relieved I don't have to get an oophorectomy. I was already wary of the procedure because of articles like this that lay out the risks. It helps to remind myself that I can always opt for an oophorectomy later, if I change my mind. Also, it helps to remember that I am following the recommendation of my oncologist; I would have to go against my oncologist to get the oophorectomy, and that would feel weird, too, because I do think she's a good doctor. (I think if I really felt strongly about it, I'd be motivated to get a second opinion, but I'm not.) 

So just when I thought I could get used to a stable set of side effects, I'll be starting all over again with a new medication. I think I can handle stuff like hot flashes and fatigue, but I really, really, really don't want to have any hair thinning! I'm just starting to feel optimistic about my hair growing back, but already it feels thinner than it was before chemo, and I'll be super sad if it gets even thinner. I'll also need to keep an eye out for more serious side effects, like symptoms of a blood clot or endometrial cancer. 

On the plus side, Tamoxifen is supposed to have a positive effect in bones after menopause, so it may counteract the bone loss from Lupron. Also, it can lower cholesterol levels, which is convenient since I now have high cholesterol.