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.

1/15/21: The Cancer Center Called Me

Actually, two people called. 

First, a scheduler called. She said she spoke with my oncology NP, who requested that I be scheduled for a televisit with my medical oncologist. She said they are trying to minimize in-person interactions, so it'll be a phone call, and she made the appointment for next week.

I figured this means there isn't an easy answer, or an automatic next step. As I was wondering what options my doctor might suggest, the phone rang again. 

This time it was a nurse. She, too, said that she had spoken with my oncology NP. But compared to the scheduler, she was much more explanatory. She was like, "I understand you've been having some bleeding, and you're waiting to hear from your doctor..." She said my oncologist wanted to discuss my case with some colleagues in the main hospital in the city before meeting with me. I super appreciated this extra bit of information. It actually builds my confidence knowing that my doctor is seeking out other opinions. (My first oncologist also discussed my case with colleagues, and I appreciated it then, too.) I told her a scheduler had already called, and I already have a phone appointment. Since the scheduler actually set the date, I assume it leaves enough time for the doctor to gather whatever other information she needs. The nurse apologized for calling again when I already had an appointment, but I thanked her for giving me new information. 

1/13/21: My Medical Oncology NP Emailed Me

Actually, she sent me a message via the hospital's online patient portal. It was very short, like two lines, just to tell me that she knows I spoke with my OB/GYN, and that she'll talk with my oncologist about me on Friday morning, so she'll try to call me on Friday afternoon. I super appreciated the communication because it let me know not to expect anything until Friday, saving me two days of anxious wondering!

1/12/21: My OB/GYN Called Me

She got the pelvic ultrasound report. (That was fast!) I've been checking the online patient portal myself, but haven't seen it.

She said everything looks normal. The uterine lining is 3 mm, which is considered "thin" and normal for menopause, when the lining should be less than 6 mm. No polyps or unusual tissue, and the ovaries look normal. There is no "structural" reason to explain my bleeding, so the cause must be hormonal, which implies that my ovaries are not being completely suppressed by the Lupron.

I did see that the online patient portal was already showing my blood work results, so I asked her about those, too. My estradiol number (which should be very low) is still higher than it was last July, but lower than it was in December. This just shows that there is still some notable amount of estrogen in me.

My FSH is still too low for natural menopause, but she explained that FSH should be low because of the Lupron; in natural menopause, FSH should be very high, but Lupron works specifically by suppressing FSH. So today I learned that the markers for chemically-induced menopause are not the same as the markers for natural menopause. Because of Lupron, I should actually have very low levels of FSH (contrary to what I thought in December). My numbers are indeed low, though Monday's blood test showed higher levels than before. Apparently, the FSH may not be low enough, since my body is still producing enough estrogen to stimulate bleeding. 

The bottom line is that I shouldn't be producing estrogen, because estrogen fueled my cancer. The whole point of Lupron hormone therapy is to stop my ovaries from producing estrogen, to reduce my chances of recurrence.

So, now I wait for my medical oncology team to call me. I figure they will want to talk to my OB/GYN before circling back with me. 

1/11/21: Pelvic Ultrasound

This post being about a pelvic ultrasound should presumably serve as a TMI warning in itself...

I was supposed to drink 24 oz. of water 60-90 minutes before this appointment, to make sure I had a full bladder for the procedure. In recent days, I did a few trial runs of drinking various amounts of water and then waiting 90 minutes. I think if I had followed the instructions exactly, I might have peed myself during the ultrasound.

Luckily, the person on the phone with whom I made the appointment did clarify at the time that it's not the exact amount of water that matters, and I should not drink so much that I feel uncomfortable. So, I ended up drinking only about 12 oz. I felt plenty full by the time my appointment rolled around, and the technician didn't comment one way or the other.

I was surprised that the technician didn't ask me to change into a gown right away. Apparently the first part of the procedure is a transabdominal ultrasound, so I just had to lie on my back and lift my shirt just high enough, and push the front of my pants just low enough, for the technician to rub the transducer around on my lower belly. There was a lot of gentle pushing around, and I could not relax at all, my stomach muscles were actually tense from trying not to pee! This part lasted maybe 10 minutes, and she explained that the next part would be transvaginal. I said I was worried about my full bladder, and she said I'd be able to empty my bladder in between. Phew!

After coming back from the bathroom, the technician had me undress from the waist down and lie on the table with my feet in stirrups, with a sheet draped over me. She actually asked if I wanted to put the transducer in myself? I was not expecting that question, but I told her it's okay for her to do it. I thought she might slowly talk me through it, like the OB/GYN usually does, but nope, in just a couple seconds, before I knew it, the transducer was inserted. The next several minutes were about as uncomfortable as you would imagine.  

The whole appointment lasted about 30 minutes. 

Afterwards, I headed over to the Cancer Center part of the hospital for a blood draw, as instructed by my NP. Everyone seemed surprised to see me coming in off-schedule. I think they might have even called my NP to double-check the order.