6/15/22: Phone Calls

Before I had a chance to call my GYN surgeon's office this morning, to make sure everything is in order, the surgery coordinator called me!

She said I am all set for tomorrow, and she also shed some light on this whole "medical clearance" situation.

She said medical clearance is only needed if there's something concerning in my medical history, and the fact that I've seen a cardio-oncologist was likely what flagged me as needing it. Normally, the hospital would inform the surgeon's office about the patient needing medical clearance, and they would take care of getting it, but the surgery coordinator said no one told her, and moreover, she thought it was odd that the hospital would tell me directly, like usually it's something that happens behind the scenes, not something patients have to manage themselves.

Yesterday when I spoke with my oncology nurse after the cardiology appointment, she said she would reach out to the GYN surgeon's office to make sure they saw the cardiologist's notes, since she was basically just a middle man in all this. I realize now that my oncology office, and my oncology nurse specifically, were really going above and beyond by doing the job that the GYN surgery coordinator should have been doing. (My PCP office, on the other hand, was the least helpful of all.)

But I absolutely do not hold anything against the surgery coordinator, who sounded rather put out that she had been left out of the loop. She said she asked the hospital why she wasn't notified, and the person at the hospital seemed to say that they figured everything was all set because I already had an oncology appointment scheduled. But of course, the surgery coordinator knew that she would have been left holding the bag if I wasn't cleared. 

Maybe some people might think the surgery coordinator was being unprofessional by telling me all this, but I totally appreciated it!! I value accountability and transparency, and I feel better knowing what happened versus what should have happened. Having the full story made me feel like it's okay that I was overwhelmed by the last few days, because they objectively didn't go as smoothly as they should have, since I did fall through the cracks a bit. Once again, another clear reminder that we, the patient, have to be our own best advocate!!!! 

Anyway. The hospital was scheduled to call me between 2:00 and 4:00 PM, but they called me early at 1:45 PM. I'm a stickler for planning so I can't say I appreciated being called earlier than scheduled. Ha. They just confirmed my arrival time at the hospital, and also no food or drink after midnight tonight.

Oh, incidentally, I did get a notification from one of the online patient portals saying my covid test was negative. 

6/14/22: Covid Test + Cardiology Appointment

Today I found a good web page that explains QT prolongation. It's much better than the links in yesterday's post.

The short of it is, I don't require any more follow-up in cardiology, and I'm cleared for my surgery on Thursday! Phew. 

I started the day by driving to the surgery hospital for my covid test. 

I got there early, so while waiting for my appointment time, I called my oncology nurse and left a message about my cardiology appointment this afternoon. I was sure she could see the appointment in the online system, but she had asked me to call, and I found it reassuring to be in contact with someone who was basically tasked to help me manage this situation. 

The covid test took all of 10 seconds to administer. The nurse said the ordering physician will get the results. They'll call me if I'm positive, and probably won't call me if I'm negative. 

By the time I got home, I had just enough time to eat lunch before turning around and leaving for my cardiology appointment in the city. 

I gave myself what I thought was a ridiculous amount of extra time, but with a little traffic and a lot of time spent circling up and up the parking garage until I found open spaces, and then walking to the hospital, I got to the Cardiac Clinic just in time for my appointment.

When the medical assistant took my vitals, I was still feeling rushed from trying to arrive on time and stressed from driving in the city, not to mention anxious from just being there for a cardiac issue with my surgery on the line. She took both my blood pressure and my heart rate twice, giving me time to calm down in between. Then she did another EKG.

The cardiologist was all business, with a calm demeanor that probably serves him well in this field. He didn't tell me the QTc value, but he said it was "borderline" prolongated. Interestingly, in line with this article, he took the time to manually re-calculate the QTc. It was still borderline.

I find it noteworthy that in 3 EKGs, the leads on my legs were placed in 3 different places. On Friday (the EKG with prolonged QTc), the leads were placed low on my ankles. On Monday (the EKG with normal QTc), the leads were placed in the middle of my calves. Today (the EKG with borderline QTc), the leads were placed low on my calves, but above my ankles.

Anyway, the cardiologist asked me a bunch of questions about my own medical history and my family's. Do I ever pass out? Has anyone under 60 ever died suddenly and unexpectedly? He said he didn't think I have Long QT Syndrome, which is basically the only potential issue with a prolonged QTc. I just happen to have a slightly longer than normal QT interval.

I forgot to ask what would cause the prolonged QTc, since I didn't have it before. I was just 100% focused on whether or not I would be cleared for surgery. He said yes, I was fine to proceed with surgery, and no additional follow-up is needed either before or after the surgery, but I should schedule an appointment if anything changes, like if I start passing out.

I felt so relieved walking out of the clinic! I got back to my car and called the oncology nurse right away. She said she would contact the GYN surgeon's office and let them know to check my electronic medical record for confirmation of medical clearance. I hope that's that. Tomorrow the hospital is supposed to call, and I might call the GYN's office just to make sure everything's in order.

Once I got home, I checked the online patient portal. I'm glad I have access to my medical notes, because I learned a couple things that were not explicitly discussed during the appointment.

First, I hadn't asked the doctor what exactly my QTc was today, but the report says it was 461 ms, right in the borderline zone according to the QT prolongation article.

Second, the note said that the anastrozole and Lupron may be contributing factors. The cardiologist wrote, "Given her concurrent hormone suppression therapy, would be prudent to continue monitoring QT interval moving forward."

This was my first time hearing about any connection between my hormone therapy and the QT interval. I didn't find any connections when looking up Long QT Syndrome yesterday, but I did find some hits by searching for just "QT" and "Lupron" together. Turns out, Lupron can affect the electerical activity of your heart! Not only that, but QT prolongation is a known less common side effect of Lupron! The QT prolongation article also says that hormonal imbalances could be a cause. 

It seems to me that I am somehow prone to getting the less common but serious side effects of medications. First I got non-alcoholic fatty liver disease from Tamoxifen, now I've got QT prolongation presumably from Lupron. I'm reminded of what my original medical oncologist said, about how Asian cancer patients tend to respond differently to cancer treatment, perhaps in part because Asians are not well-represented in all the clinical trials where side effects are investigated. 

I'm wondering if I should be disappointed that my oncology team never warned me about these risks specifically. I guess I can't expect them to list every single side effect, and I don't think knowing about these less common outcomes would have affected my decision-making; since they are not common, I would have figured I'd be unlikely to get them, even if I knew about them. 

It also occurs to me, should I be upset that they didn't readily connect the dots between prolonged QTc and Lupron? Maybe they did, but the focus right now was figuring out if a prolonged QTc would affect my surgery. And since my surgery means discontinuing Lupron anyway, maybe it's moot. Looking ahead, I may try to ask for an EKG at my next oncology appointment, to see if the QTc returns to normal after stopping Lupron. 

6/13/22: I Really Do Need Medical Clearance

This morning I got an unexpected message in the online patient portal from my medical oncology NP saying there is an abnormality in my EKG!

It looks like my QTc is longer than normal.

First, apparently an electrocardiogram is abbreviated with either EKG or ECG. This page explains "QT" as follows:

"Doctors name the different waves on the ECG graph P, Q, R, S and T. Letters Q through T correspond to the heart cells’ “recharging” (repolarizing) after a muscle contraction. Abnormalities in the heart cells can slow the process of electrical recharging, prolonging the QT interval as shown on an ECG."

This page shows a small image of what the "QT" interval looks like on an EKG graph.

"QTc" refers to "corrected QT interval". This page explains "QTc":

"The QT interval is longer when the heart rate is slower and shorter when the heart rate is faster. So it's necessary to calculate the corrected QT interval (QTc) using [a mathematical formula]."

Anyway, mine was 473 ms. This page says normal QTc range for women is 360-460 ms. 

I started going down the rabbit hole of trying to understand what a prolonged QTc could mean. There's a condition called Long QT Syndrome (LQTS), but I don't think I have it because the congenital form is rare and I have no symptoms; there is an acquired form, but I'm not taking / don't have any of the medications or conditions that cause it. Also, I found this random page that says computer error or lead misplacement can cause inaccurate QTc calculations. So that's probably what it is, right?

Okay, all of that was just a long preamble. The point is, my oncologist could not clear me for surgery with this prolonged QTc, so they want me to see my PCP. My oncology office actually coordinated with my PCP office so before I even had a chance to call my PCP, they called me and had already set me up with a same-day appointment. My PCP did another EKG, and lo and behold, it's normal. The QTc today was 426 ms, perfectly within the normal range. Great! 

But no. My PCP said she still could not clear me for surgery because what about Friday's EKG? We don't know for sure that Friday's report was inaccurate, so what does it mean if my QTc is fluctuating wildly? So, my PCP wants me to see a cardiologist. 

In retrospect, I'm annoyed because if my PCP would not have cleared me for surgery no matter what - even with a normal EKG - then why did we waste time going through my PCP at all? Why didn't my PCP tell my oncologist to just send me directly to my cardiologist? Plus, she told me to call the cardiologist myself, adding, "If you have trouble making that appointment, let us know, and we'll help out." Since this is super time-sensitive, it bothered me that she didn't have her office just make the appointment for me, the way my oncology team did for this PCP appointment.  

I went straight home and called my cardio-oncologist. I called the first number I found, and I think it was a scheduling line. At first I asked for an appointment with my own cardio-oncologist, and then I said to check the schedule for any cardiologist, but of course there were no openings before Thursday. The scheduler said she would send a message to my cardio-oncologist's office about my situation, and they would call me back.

In the meantime, I called my Cancer Center. A nurse had called this morning to make sure I had the PCP appointment scheduled, and she had asked me to call her back with an update after the appointment. I told her about trying to get a cardiology appointment, and she was quite surprised - and dare I say annoyed! - that the PCP's office didn't set that up for me. She said quite frankly, "They should be facilitating that for you." 

Surprisingly, in the middle of that phone call, the cardio-oncologist's office called me. That was quick! I took that call, and explained the whole situation again to the nurse. She was very sympathetic, could hear that I was getting emotional and tearing up, and she said she'd talk to the cardiologist and get back to me.

I called the oncology nurse back just to update her on that phone call. She said it sounds like I did a good job advocating for myself. We'll see if the cardiologist's office calls me back tonight, and either way, I should call the oncology nurse again tomorrow morning with another update.

At this point, I left the house to pick up my son from school. When I got back, there was no message from the cardiologist's office, so I decided to call my PCP's office and let them know I do need their help getting an appointment! I explained the entire situation again to the person who answered the phone, and she said she'd talk to the doctor about it. 

Incredibly, the cardiology nurse did call me back! Just before the end of the work day. She said my regular cardiologist doesn't have any openings, but she made an appointment for me at the "cardiology clinic", like an urgent care clinic just for cardiology. Thankfully, the appointment time does not interfere with the pre-surgery covid testing I'm supposed to get tomorrow morning, but I'll have to drive to the main hospital in the city. I'm nervous that there will actually be a problem and I won't get cleared for surgery, but at least I have an appointment. I thanked the nurse profusely! She was so kind and patient, she even said, "Everything will work out, I hope this helps to reduce your stress." So compassionate of her to say!

I am slowly starting to brace myself for the possibility that I will need to postpone my surgery. I really hope that doesn't happen because I've already been laying low for about a week now, to reduce my risk of covid exposure, and I just don't want to have to do all this surgery planning again, coordinating among oncology, GYN, PCP, cardiology, and the hospital!! GAH!!!

What to Expect from Chemotherapy

I first drafted this post when I started chemo, and I meant to finish it just after finishing chemo, but it fell by the wayside. By now, I think I've forgotten some useful things I might have said if I had posted it earlier, but here goes.

These are my thoughts on what to expect if you're getting chemotherapy. Of course, experiences and treatments vary. I got 12 weekly infusions of a "low dose" of Taxol, plus Herceptin because I was HER2-positive. After that, I got a higher dose of maintenance Herceptin every 3 weeks for the remainder of a year. 

I think I was relatively lucky in terms of side effects, and I definitely got off easy in terms of not experiencing any nausea at all.

Understand Your Regimen and Schedule

Chemotherapy was recommended at my first meeting with my medical oncologist, and things moved quickly from there. Within days my husband and I had a "chemo teach" appointment with an oncology nurse who explained the process and answered all our questions. She provided complete information on my treatment schedule, all the drugs I would be getting (including pre-medications), expected side effects, and the prescriptions I would have to help manage side effects. This meeting was critical in setting my expectations for chemotherapy. She emphasized that my regimen was tailored to me, and every person experiences side effects differently, so I shouldn't compare my experience with that of others.

Two days after that meeting, I got my port installed. The aftermath of this procedure was actually more painful than I anticipated, but I felt better in about a week. 

The day after port placement, I got an echocardiogram because Herceptin can weaken the heart's pumping action. This echocardiogram would be my baseline, and my heart would be monitored by an echocardiogram every 3 months while on Herceptin. Getting the echocardiogram just one day after port placement, and 4 weeks after my double mastectomy surgery, I really couldn't lie on my side without pain, but the technician was very kind and accommodating, and was able to get the images without too much discomfort.

Before I knew it, one week later I was getting my first chemotherapy infusion.

Day of Treatment Routine

On the day of treatment, I made sure to wear a top that would allow easy access to my port. I could wear any shirt that was kind of stretchy, or had a V-neck, as long as it could be easily pulled aside to expose the port. Also, I made sure it was short-sleeved, since my blood pressure was taken at every visit, too.

About an hour before my appointment time, I used the prescribed numbing cream (lidocaine-prilocaine) for my port. The cream was thinner than I expected, and I was instructed to cover the bump of the port, located under the incision scar, so that it looked "like toothpaste". Over the weeks I found that it worked best if I didn't try to conserve it; just slather it on.

Then I covered the area with a square of Glad Press 'n Seal, so that the cream would stay in place and not get on my clothes.

At my Cancer Center, I usually first met with a nurse who accessed my port. With the numbing cream, I didn't feel a thing when the needle went in. (Sometimes I felt just a tiny poke if I presumably didn't use enough cream.) She drew blood via the port for blood work, which was checked each treatment to make sure I would be able to receive chemotherapy that day. (My numbers stayed within acceptable range, so I never needed to miss a dose.)

About every 2 or 3 weeks, after my port was accessed, I had an appointment with my medical oncologist. This was my opportunity to discuss any side effects.

Once in the infusion room, a medical assistant took my vitals.

My infusion room was set up with "bays". Instead of one big room where patients sit amongst each other, each patient had their own space that could be curtained off for privacy. Each bay had one recliner for the patient, an extra chair or two for company, and a TV.

Once in my bay, I got settled in my recliner. I liked having a pillow and one of the heated blankets provided by the hospital. Then, I basically just sat for the next few hours. All the medications that were administered through the port were hung on an IV pole, so I could get up and walk to the bathroom, pushing the IV pole along with me.

Line Up Drivers As You Go / Invite a Friend

My hospital usually provided me with at least 2-3 appointments at a time, so I had time to plan ahead. I was advised to not drive myself to chemo, at least at the beginning. One of my pre-meds was Benadryl, which could make me drowsy, and another was Decadron, a steroid that could make me jittery! Who knows how I would end up reacting to all the meds. 

My husband was able to work out a schedule at work so that he could drive me to most of my first several treatments, but I was also fortunate enough to have a few friends who volunteered to drive me. I decided to take up each friend's offer only once, so as not to burden any one person too much. On average, my treatments lasted about 4 hours, not including driving time, which added another hour at least (round-trip), so it was a pretty big commitment. As it turned out, having friends with me during treatment was one of the best things I did for myself during chemo. Even though I was hooked up to an IV and getting pumped full of toxic drugs, it was downright fun to have a solid chunk of time to just sit and chat with a friend. 

Towards the end of my treatments, I got a pretty good feel for how the drugs affected me, and with my infusion nurse's blessing, I did a trial run of driving home, with someone in the passenger seat just in case. After that, I was able to drive myself to my last few appointments.

What to Bring

Here's a list of what I brought to my infusion treatments:

• Port Pillow for the Car - If needed to cushion the port from the seat belt. My port was placed on my left side, so the seat belt laid right over it if I was driving; I didn't need a port pillow if I sat in the passenger seat, with the seat belt over my right shoulder. My port pillow attached to the seat belt, but it didn't stay in place very well; I had to re-position it every now and then. Still, it worked well if I placed it basically on my shoulder, lifting the seat belt away from my body so it didn't touch the port at all.
  
  
• Water Bottle with Straw Lid - I was advised to drink 2-3 quarts of water a day. I really loved the convenience of the straw lid.
  
  
• Lip Balm - My written take-home instructions after chemo said to use lip balm to keep my lips moisturized. I didn't always use it, but brought it just in case.
  
  
• Hand Sanitizer - It's important to be diligent about preventing illness during chemo. I always ate at some point during my infusion, so having a handy bottle of hand sanitizer made it easy to clean my hands before eating, without having to get up and drag the IV pole into the restroom to wash my hands. 
  
  
• Treatment and Reaction Log - I wrote down the date and time of all medications, plus all side effects I experienced. Each week I kept my infusion nurse informed of my side effects, and how I was managing. She gave me specific advice and suggestions based on how I was doing each week.
  
  
• Things To Do - I always brought my cell phone (my hospital had free Wi-Fi) and a book. Sometimes the Benadryl (one of my pre-medications) would make me feel loopy or tired, so I'd just sit and rest, or nod off. If I had a friend with me, we easily passed the time talking. Sometimes my social worker or my physical therapist (for my double mastectomy recovery; I had cording in one arm) would meet with me during my infusion time. Consider bringing a laptop, an iPad, a knitting project, anything to help pass the time.
  
  
• Snacks and Lunch - My Cancer Center actually provided snacks, drinks, and a lunch for me and a friend. But I would still pack a few snacks just in case.
  
  

Side Effects

My oncologist called my regimen "chemo lite" because I only got one chemo drug, and my dose was apparently very low. There are a whole slew of possible side effects you might experience, from acne to blurry vision to skin rash. I think I got off pretty easy; I had a lot of side effects, but they were mostly just annoying.

The side effects people most worry about seem to be the following:

• Fatigue - After a few weeks, I was able to see a pattern in my weekly cycles. I got my infusions on Friday. That night, I was up late and got very little sleep (sometimes as little as 3 hours), thanks to the steroid pre-med. Saturdays and Sunday mornings I felt pretty normal, and then would start to feel tired come Sunday afternoon. I'd go to bed early, making up for lost sleep. I was always most tired on Mondays, and would continue to drag on Tuesdays. On Wednesdays I would feel increasingly better, on Thursdays I would feel practically normal again, and then the cycle started all over again on Friday. In some ways I preferred to just be a hermit during chemo, but I quickly learned that any activities were best limited to Saturdays, Sunday mornings, and Thursdays; Mondays and Tuesdays were totally out.
  
  
• Nausea - Dr. Susan Love's Breast Book recommends that if you experience nausea, take your prescribed medications as instructed, don't try to "tough out". Just in case, I bought saltines, ginger ale, and a friend gave me some ginger candies in preparation for chemo. I truly lucked out and didn't experience any nausea at all.
  
  
• Hair Loss - Dr. Love's book also says that hair loss is always traumatizing, but the people who do the best are the ones who prepare for it. I'm not sure about that; I tried to prepare, and was still very affected. I was not given a prescription for a wig because my oncology nurse didn't think I would need it; she said I should expect thinning, but not total hair loss. Still, I prepared for the worst and bought a couple headcovers just in case. I felt better just knowing I had a plan, especially since a lot of people say that hair loss happened very dramatically, essentially overnight.
  
  My experience was different; the thinning was gradual. There were a couple days after my 4th treatment when my hair fell out at an alarming rate. The amount of hair that fell out increased every week, and after the 6th treatment, I became self-conscious. After the 7th treatment, it was undeniably noticeable, and I started wearing a hat. After the 10th treatment, I couldn't even stand to look at my straggly hair in private, so I shaved it.
  
  In the months after chemo ended, my hair slowly grew back, but 5 months out I was still wearing hats in public. I was 8 1/2 months post-chemo when I finally felt comfortable going out without a hat.
  
  
• Weight Change - Some chemo patients lose weight because of the nausea. I didn't experience any nausea, but since my chemo regimen included a steroid, I was told to expect weight gain. My medical oncologist advised me to not worry about losing weight while on chemo; it was more important to eat well and maintain good nutrition. I ended up finishing chemo about 5 pounds heavier than when I started.
  
  
• Neuropathy - I had what seemed to be an unusual situation; at least, no one could give me any straight answers. I did not experience any neuropathy while receiving chemo, but about a month after stopping chemo, while still getting Herceptin, I started to get numbness and tingling in my hands. These symptoms came and went, and were sometimes debilitating and painful. My medical oncologist prescribed a "water pill" in case fluid retention was a factor, I started sleeping with wrist braces, and my physical therapist gave me new exercises. It was entirely unclear what was causing the symptoms. Was it delayed neuropathy from chemo? Or the Herceptin? I was also on Lupron and exemestane, so was it related to fluid retention or menopause? Who knows. After about 8 months, the symptoms gradually subsided. Now, about a year after finishing chemo, I still have a very mild tingling in the thumb, pointer, and middle fingers on both hands, but it's like I've gotten used to it, it's just there. Of course, I'm curious to see if it ever goes away!
  
  

Bottom Line

Every person is going to have a unique experience with chemo. Reading about my experience may or may not help someone else, who will probably experience completely different side effects. No matter what your particular experience is, I think the following advice is universal:

• Drink Lots of Water - Just keep a water bottle with you at all times and drink, drink, drink! Yes, you'll need to pee more often.
  
  
• Rest When You Need to Rest - It's okay to lie down in the middle of the day, or go to bed right after dinner.
  
  
• Stay Active - Take a walk to get fresh air, and also to get your blood and lymph circulating. I aimed for 30 minutes a day, 5 days a week, but even 10-15 minutes a day is good. If that feels like too much, my physical therapist recommended doing just a little something any time you get up from resting; swing your arms, or go up and down the stairs a few times.
  
  
• Look Forward - Sometimes chemo can feel like a slog, like it's just dragging on and on. Remember, you are prescribed a regimen, and there is an end in sight!! You can do it! 

3/9/20: Bone Density Test

My medical oncologist ordered a baseline bone density test because both Lupron and exemestane are reducing my estrogen levels - actually, together, the goal is to eliminate estrogen completely - and that puts me at risk for osteoporosis.

Because of the coronavirus, when I checked in, I got asked whether or not I am having respiratory symptoms and also whether or not I've travelled anywhere within the last 14 days. These questions actually show an evolution from a few weeks ago, when I was asked only whether or not I'd travelled to China in the last 14 days.

Anyway, I filled out a questionnaire about my bone health, and was instructed to change into a gown. I laid down on a table, and the imaging machine above me moved up and down my body making scans. The whole procedure was a lot shorter than I expected, I think it took like 10 minutes.

When I got home, I went for a nice long walk with my neighbor. By the time I got back, my doctor's office had already called with the results. I have osteopenia! I got 3 T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.7
• Left proximal femur: -1.2

Only the -1.2 number falls within the osteopenia range, but the nurse who called me said it's enough to consider my overall results to be osteopenia. She said my doctor is prescribing 1200 mg of calcium daily and 1000 IU of vitamin D daily.

My old oncologist already had me taking 2000 IU of vitamin D, so I figure I'll stick with that. The calcium supplement I've been taking is 600 mg, so I'll just take 2 of those from now on.

I'm already trying to walk at least 30 minutes a day, 5 days a week, for breast cancer recurrence prevention. Apparently, walking counts as a weight-bearing exercise that is beneficial to bones, so that makes me doubly motivated to keep it up. 

2/21/20: Lupron + (6 Months Post-DMX) Physical Therapy Appointment #19

I took another dose of Lasix and potassium yesterday. I think these last 2 doses did reduce the swelling in my left hand, but it's still not entirely gone. It's like a residual puffiness that just won't go away.

I don't think I'll take Lasix again unless my symptoms relapse. Right now, it's just a little swelling in my left hand. I still wake up with "tightness" in my fingers (my joints feel tight when making a fist), plus mild numbness and tingling in both hands. The bulk of it goes away after getting up and moving around, and everything improves during the day, but a mild tingliness persists, and just my fingertips feel numb. Occasionally, I get shooting nerve sensations (not painful) when using my hands. Also, my thumbs feel a little achy. And my left hand is worse than the right.

So today I went in for my monthly Lupron shot. Got my vitals taken, got settled in a bay, then had a bit of a wait. My regular infusion nurse wasn't there, and I was seen by my original oncology nurse. The shot itself took only a minute, but we spent quite a bit of time going over my numb and tingly hands.

I told her how frustrating it has been not being able to identify a primary source for all the symptoms, which means not knowing how best to approach the problem. I think I definitely had pinched nerves from swelling, because reducing the swelling (with Lasix) did help a lot. But why was I swollen in the first place, and how can I eliminate the swelling completely? Or would that be impossible, because it's a side effect as long as I'm on Lupron? Could the remaining numbness and tingling actually be a completely different issue, like carpal tunnel syndrome from the exemestane? Or are they related to nerve-regeneration from my DMX? Could the tightness in my fingers be joint pain from the exemestane? I wish I could know if I'm getting symptoms from a problem that can be addressed and fixed, or if I'm having side effects from medication or surgery that might just go away in time, or won't go away and need to be managed.

In March I have appointments scheduled with both my medical oncologist and my Breast Center NP. Hopefully one or both of them will have some insights. If not, my nurse said it might help to see a hand specialist, like an orthopedist or neurologist. I really hope it doesn't come to that.

I also saw my physical therapist today. Regarding my hands, she said that chemo-induced peripheral neuropathy sometimes feels like numbness in just the fingertips. I didn't have neuropathy in my fingers during chemo, but she said sometimes side effects can be delayed and appear even after chemo ends. Well, that certainly was true about my hair, the way I lost my eyebrows about a month after chemo ended. So, I guess I can add chemo to the list of possible causes.

She worked on my cording and said that if it's not bothering me in any way (not causing pain, not limiting my range of motion), then we can consider the problem resolved, even if the actual cord is still there under the skin. At this point, I can only feel the cord in my right underarm if I go looking for it.

She said I've regained full range of motion. Yay! I'm capable of moving my arms (slowly) any which way, but I still feel a bit of discomfort when driving, and sometimes when I need to reach for something. I should continue with stretching every day (I can feel the difference if I skip a day or two), and can start adding in some strengthening exercises. She gave me a modified plank exercise, using a counter-height surface, to add to my regimen.

Last week she was at a conference for cancer-related physical therapy, and she said she learned a lot about deep breathing, which involves breathing through the diaphram and belly. She said deep breathing can help move lymphatic fluid, which might help with the swelling, which in turn could help with the nerve-related symptoms. She instructed me on how to do deep breathing, gave me a new exercise, and also suggested adding deep breathing to my stretches. Apparently, deep breathing can also help with stress and anxiety, so maybe there will be lots of benefits.

Looking ahead, she scheduled my next appointment for a month from now, which actually made me feel a little nervous. Of course the goal is to be in good enough health to be released from all these medical appointments. But I have gotten so used to going to the Cancer Center that not going as often feels like a big transition. Even when I stopped chemo, I still came in almost every week for physical therapy. Without these weekly physical therapy appointments, there is no automatic time set aside for me to check in with a medical professional about how I'm doing. I feel kind of like a baby bird, not quite ready to leave the nest. My physical therapist was very reassuring, saying these feelings are normal, and she sees it all the time. She said if the cording comes back, or if my existing symptoms get worse, or if I'm concerned about anything new, all I have to do is call and set up an appointment. Well, when she put it like that, it sounds perfectly reasonable and doable.

10/12/19: I Checked My Insurance Claims Online

With payment of the last bill, I met my insurance deductible, so all my remaining medical claims for the coverage year should be paid in full by my insurance.

I don't think the insurance company sends me any statements when I don't have anything to pay, so I logged into my online account to see what has been charged.

Like I mentioned before, I don't fully understand everything that's posted in my online account, especially in the claim detail pages. But the "Recent Activity" summary page lists two numbers, a "Claim Total" amount and a "You Pay" amount. I'm using the "Claim Total" in my "Total cost to date" tally. The "You Pay" amount for all these claims is $0.

8/23/19: Surgery Breast Surgeon: $9,754.00
8/23/19: Surgery Pathologist: $1,553.00
8/23/19: Surgery Hospital (Incuding Pharmacy, Anesthesiology, Radiology, Pathology): $18,716.15
9/17/19: Oncotype DX Testing: $4,620.00
9/18/19: Physical Therapy Appointment #1: $492.00
9/19/19: Medical Oncologist Appointment: $552.00
9/19/19: Medical Oncologist Hospital (Including Blood Draw/Lab Work and Appointment): $842.00
9/23/19: Physical Therapy Appointment #2: $250.00
9/24/19: Hospital (Blood Draw/Lab Work): $82.00
9/25/19: Port Placement Hospital: $5,789.98
9/25/19: Port Placement Surgeon: $1,162.00
9/26/19: Port Check Appointment (Bruise): $161.00
9/26/19: Echocardiogram Hospital: $1,133.00
9/26/19: Echocardiogram Cardiologist: $240.00
10/2/19: Physical Therapy Appointment #3: $375.00
10/3/19: Hospital (Including Blood Draw/Lab Work): $737.00
10/4/19: Chemotherapy Cycle #1 (Including Lupron): $11,601.92

Sub-total: $58,061.05

Total cost to date: $83,735.31
With insurance, cost to me: $4,193.16

10/3/19: Medical Oncologist Appointment

My medical oncologist is so warm, she gave me two hugs! One at the start of the appointment, and one at the end.

Mostly we were touching base before I start chemo tomorrow. The biggest update she gave me was that she spoke with the genetics specialist about the VUS in my BRCA2 gene, and she does not recommend getting my ovaries removed to prevent ovarian cancer. There just isn't enough known about the VUS, and it's not enough to justify ovary removal. I was relieved because in the limited research I've done so far, it sounds like a pre-menopausal oophorectomy carries a lot of unknown long-term risks.

She confirmed I will start Lupron with chemotherapy tomorrow. It'll be a monthly injection in the butt. We talked about how Lupron will cause a chemically-induced menopause, so expected side effects are basically the typical symptoms of menopause. I asked if that includes osteoporosis. The short answer is yes; but given my current health, she said she wouldn't expect me to be at high risk for early onset osteoporosis. Chemotherapy itself can actually increase a patient's risk for osteoporosis, so she said she typically orders a bone density scan about 2 years after chemo. She also talked about ways to promote bone health, like doing weight-bearing exercises.

At last week's meeting with the oncology nurse, I got the impression that my risk for nausea was relatively low. But my medical oncologist seemed surprised that the nurse hadn't prescribed this other anti-nausea medication called ondansetron hydrochloride (name brand Zofran), so she gave me that prescription today. Googling it now, it sounds like a preventative medication that is usually taken in advance, but both the doctor and the oncology nurse who sat in on the appointment today (not the same nurse I met with before) said I could take it as needed.

I now have three anti-nausea prescriptions, so I asked how do I know which one to take when? The nurse said the Zofran should be my first option for severe nausea (even though it might cause constipation), and I could use the other one (prochlorperazine maleate) for mild nausea. They didn't mention when to choose the third one, which is primarily for sedation anyway. The nurse also said I could alternate them every 6-8 hours, and that the chemo nurse might give me a kind of calendar or schedule as a guide for when to take which medication.

She reiterated a desire for me to connect with the social worker. The oncology nurse said she'd see if the social worker can stop by during my infusion tomorrow.

9/23/19: Oncology Nurse Informational Appointment

Sooooo much information. 

I have to credit the nurse for being so knowledgeable and reassuring and helpful in delivering all the details. This post is going to be TMI for most people, but since this blog is how I'm processing and documenting my treatment for myself as well as for others, I'm going to lay it all out. 

First, I need to clarify my course of treatment. I am getting chemotherapy (Taxol), targeted therapy (Herceptin), and hormone therapy (Lupron and Tamoxifen). All of it is preventative because I am NED (No Evidence of Disease). The nurse was very clear to say that breast cancer treatment is personalized to the specific patient's needs, so my treatment plan should not be compared with another patient's course of treatment.

Ken came with me to this appointment. We were taken to look at the infusion room. Each patient has a private, curtained-off area. There's a comfy recliner for me, an extra chair for company, and a TV. 

I will start Taxol and Herceptin on 10/4. I will have weekly infusions for 12 weeks. Each visit I will get blood work, pre-medications (to prevent possible allergic reaction), Taxol, then Herceptin. The first treatment is expected to take 4 1/2 hours. They will deliver the Herceptin very slowly at first to monitor for complications, and if all goes well, they may be able to administer it more quickly in subsequent weeks. So towards the end, treatment might be "only" 3 hours.

Chemotherapy

The reason my chemotherapy is considered "light" is because I am only getting Taxol (chemo usually involves multiple drugs), and I'm getting a very small dose of it. 

At the start of each treatment, my port will be "accessed", which means they'll insert a needle into it. Since the port will be under my skin, this procedure sometimes hurts. I will get a prescription for lidocaine-prilocaine, a numbing cream, which I can apply at home before leaving the house. This medication is optional, it's only for comfort.

I will get blood taken using my port. The blood work will check for three things:

• White blood cell count - White blood cells help the immune system fight infections. If the count gets too low, I might be especially suspectible to infections.  
• Red blood cell count - Red blood cells deliver oxygen to body tissues. If the count gets too low, I might be anemic. In a severe case, I might need a blood transfusion. (They would use blood from the Red Cross.)
• Platelet count - Platelets help your body form clots to stop bleeding. If the platelet count gets too low, I could be at risk for serious bleeding.

If any of these counts gets too low, they might decide to hold off on treatment and not do chemo that day, or they might decide to lower the chemo dose. They won't automatically give me my blood work report, but the nurse said I can ask for it if I want it. 

They will also use my blood to monitor my liver, which processes the Taxol. Since it's best to have my liver at full functioning capacity, there are guidelines to not drink alcohol the day before or the day of treatment. I might just refrain altogether, just in case.

After getting blood work, I'll be given pre-medications to ward off an allergic reaction to Taxol. The pre-meds all work as antihistamines.

• Benadryl - Side effects include sleepiness and dry mouth.
• Steroid - Side effects include flushing and "feeling wired", which means I might have trouble sleeping that night. 
• Pepcid

Because of the "feeling wired" side effect, I will be given a prescription for lorazepam (name brand Ativan). It's usually given for anxiety, and causes sedation, so I could take it if I need help falling asleep. (If you're keeping track, that means I have a prescription to address a possible side effect of a pre-medication of the actual chemotherapy...) It is addictive, but my dose is very low, and the nurse said I could safely take it a couple times a week. This medication is meant to be taken as needed, and since I am fortunate to not have to work during chemo (i.e., I don't have to keep a strict sleep schedule), my inclination is to avoid taking it if possible.

In discussing side effects, the nurse was careful to point out that I may get side effects, but I may not! Every patient is different, so I shouldn't go in expecting side effects; it's just good to be informed.

The Taxol infusion should take about an hour. Possible side effects include:

• Nausea - Low risk. Lorazepam can also be used to treat chemo-induced nausea and vomiting, so I may find I need to take it for this reason. However, I can still first try more simple remedies, like saltines and ginger ale, at the first sign of queasiness. Also, I will be getting a prescription for prochlorperazine maleate, an anti-nausea medication that I can take as needed.
• Hair thinning - Because I'll be getting a small dose of Taxol, the nurse said I should expect visible hair thinning, but not complete hair loss! Yay! I don't even warrant a presription for a wig, which some patients do get. She said hair generally grows back in the same length of time as the treatment; so in my case, after 3 months of treatment, it might take 3 months for my hair to grow back completely. 
• Peripheral neuropathy - This is a fancy way of saying tingling and numbness in my fingers and toes. It is cumulative, so I may get tingling in 1 or 2 fingers the first week, and then in 4 fingers and a toe the next week, etc. These sensations should wear off by the next treatment. If not, they may decide to hold off on treatment and not do chemo that day.
• Heightened sense of smell - Could act as a trigger for nausea. May want to eat food at room temperature to decrease odors. May affect appetite, so may want to eat smaller portions more frequently.
• Modified sense of taste - Food might taste metallic. Can try to counteract with additional seasonings. 
• Mouth sores - I should keep good dental hygiene, and not use alcohol-based mouth wash, which can dry out the mouth. If I do get sores, I should use a baking soda rinse consisting of 8 oz. of water and 1 tsp baking soda; have it on hand to rinse and spit frequently.
• Fatigue - May results from the chemo itself, or from the lack of sleep due to chemo, or from being emotionally exhausted from dealing with cancer. 

I should keep track of symptoms and report them every week. 

The nurse also gave me general suggestions and guidelines for things to do while getting chemo.

• Stay hydrated - Drinking plenty of water serves lots of purposes, from preventing mouth sores to maintaining a healthy liver.
• Maintain normal activities - Despite fatigue, I should try to remain as active as possible.
• Walk - I should get physical activity recommendations from my physical therapist. 
• Get a flu shot - I'll get it from the Cancer Center.
• No dental cleanings - Lots of bacteria involved in the mouth, so best not to take the risk with potentially compromised immune system or higher likelihood of bleeding. 
• Be vigilant about infections - Wash my hands thoroughly or use hand sanitizer; avoid touching my face and eyes with my hands; avoid social interaction with people who are or have been sick; if around someone who may be sick, wear a surgical mask (can be purchased at CVS); check my incisions and port site and be on the lookout for redness or tenderness; call the doctor (even page the doctor on call if it's off-hours) for any fever over 100.5 F.

Targeted Therapy

While chemotherapy indiscriminately works on all cells (hence all the side effects), Herceptin targets the HER2 receptors on cancer cells and blocks them.

There are relatively few side effects, but the big one is that it might weaken the heart. Symptoms would include swollen legs and shortness of breath.

Herceptin is the reason I'm getting a baseline echocardiogram. I will get an echocardiogram every 3 months while on Herceptin to check my heart function. If my heart weakens, they might stop the Herceptin.

Hormone Therapy

I will get my first Lupron injection on the same day I start chemo and targeted therapy.

Lupron can be given every month or every 3 months, but the nurse wasn't sure which dose I would be getting. I will need to follow up with my medical oncologist.

Lupron suppresses ovarian function, so I will be in chemically-induced menopause. Natural menopause occurs gradually, but it will happen instantly for me. I will definitely experience hot flashes, and maybe also insomnia, mood swings, trouble losing weight, and vaginal dryness. The only potentially good thing is not having any more periods. (If I have any bleeding, I should call my OB/GYN.)

Tamoxifen is a daily pill that I won't start until after chemo ends, so we really didn't talk about it at all, since it's not an immediate concern.

I am not clear on how long I will be on Lupron and Tamoxifen, so that's something I need to ask my medical oncologist. I think it might be until natural menopause, which usually occurs around age 50. The nurse said it's so far in the future that I shouldn't worry about it now, but at some point they will do a blood test for hormones to see if I'm in natural menopause.

The nurse did offer me some Hibiclens for my port placement surgery, but I actually have half a bottle left over from before, so I didn't take it.

Finally, the nurse gave me the name of a social worker, who I can contact if I want to join a support group, or need help talking to the kids. She said the most common time to feel most affected is actually at the end of treatment, because then you finally lift your head up, and you're not sure what to do anymore. At this point, I can hardly imagine that position, because I am so in the thick of it now, but it's a concept I have seen before:

9/19/20 - 9/20/19: Phone Calls

The last few weeks since surgery have been relatively slow-paced and calm. I had a few medical appointments here and there, but mostly I just laid low and rested and focused on physical recovery and mental well-being. The medical oncologist appointment was like the marker for when I would have to start thinking about "further treatement."

Now that there's a plan, things are happening quickly. 

Yesterday I got separate phone calls to schedule next week's port placement and echocardiogram. The port placement is done in the radiology department, and the echocardiogram is in cardiology. I also called the physical therapy department to re-schedule an appointment to make room for the informational meeting with the oncology nurse.

I got a call today that turned out to be the pre-operative call for my port placement. It's an outpatient surgery, so I have the same instructions to not eat or drink anything after midnight the night before, and to shower the night before and morning of with Hibiclens. This time I was told I would get a bottle of Hibiclens at my nurse appointment on Monday.

Yesterday, in calls to help coordinate my appointments, the oncology nurse saw that I had a physical therapy appointment scheduled for the day after my port placement. She thought that would be too soon, that I would be too sore, so she said she would talk to the physical therapist about that concern. I spoke with my physical therapist today, and we cancelled that appointment, and will just see how things go at my next appointment and go from there.

The oncology nurse also called today to schedule another appointment with my medical oncologist, plus my first two chemo infusions. I start the first week of October. So soon!

9/19/19: (~1 Month Post-DMX) Medical Oncologist Appointment - I Need Chemotherapy

I really like my medical oncologist. She was just the right balance of knowledge and caring. A nurse sat in on the entire meeting, and she will be the person helping me navigate upcoming appointments and procedures.

So much information to process.

I will be getting chemotherapy.

I cried a bit at this news, but actually I am on board with the recommendation; I feel my oncologist really gave my case a lot of thought, and is giving me the best treatment for my unique situation. Going into this appointment, because I was in a grey area, I was most worried that the doctor would not be able to confidently recommend a clear course of treatment. She said my case is indeed unique. Two tumors in my right breast, one tiny tumor in my left, two different types of cancer.

The two tumors on the right were ER-positive, PR-positive, and HER2-negative. The larger of these two was sent for Oncotype DX testing, which predicts the likelihood of recurrence and whether or not the patient would benefit from chemotherapy. The result came back "intermediate to low risk", which is basically another grey area with no clear recommendation in terms of chemotherapy. The actual number was 18. The above link gives this not super helpful explanation of results: "If you have a score of 16 or above and are aged 50 or under, your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy."

The tumor on the left was ER-positive, PR-positive, and HER2-positive. Usually, a HER2-positive cancer is treated with Herceptin in conjunction with chemotherapy. But since this tumor was so small (4 mm), it wasn't clear if Herceptin and chemo are still necessary.

My oncologist brought my case to 3 additional oncologists at the main hospital in the city. All 3 oncologists said that yes, I should be treated with Herceptin. Moreover, they all agreed on administering it via chemotherapy with Taxol, which interferes with the growth of cancer cells. My oncologist said their agreement is noteworthy; in a non-straightforward case like mine, it's more common to get differing opinions. I do find it very reassuring to know that even though I started in a "grey area", my course of treatment was actually recommended by 4 oncologists, including my own.

Ultimately, my age played a large factor in the decision. Because I am considered young, the likelihood of recurrence is high. Since I am healthy and have no other health issues, I should be able to handle the chemotherapy.

My medical oncologist said my regimen will be like "chemo lite". My treatment will last a year total. For 12 weeks, I will get Taxol and Herceptin once a week. Then I'll get a maintenance dose of Herceptin every 3 weeks for the rest of the year.

Before starting chemo, I need to get a baseline echocardiogram. I also need to get a port placed in my upper chest, which is how the chemo will be administered. Both these appointments will happen next week.

I will also be getting hormone therapy.

All 3 tumors were ER-positive and PR-positive, which means the cancer's growth is fueled by estrogen and progesterone. I'll be getting both Tamoxifen and Lupron. Tamoxifen is a pill that blocks the estrogen receptors in the cancer cells. Lupron is a type of ovarian suppression. It's an injection that stops estrogen production in the ovaries. I'm not entirely clear on this, but it sounds like I may need to take Tamoxifen and Lupron until menopause.

I do not need radiation.

Mainly, I think, because I had clear surgical margins and my lymph nodes were clear.

All my treatment moving forward is to prevent recurrence. Chemotherapy and hormone therapy are both systemic treatments, and as this video explains, they are needed to address any cancer cells that already escaped from the breast and may grow into cancer later.

Finally, we discussed my variants of unknown significance in my BRCA2 and PALB2 genes. BRCA2 is also linked to ovarian cancer, and PALB2 may be linked. Ovarian cancer is very difficult to detect, and tends to already be late-stage when it's found. If I had known mutations in BRCA2, an oophorectomy (removal of ovaries) would be recommended. Since my mutations aren't known to be problematic, they're not sure if there is enough reason to worry about ovarian cancer. My medical oncologist said she would confer with the genetics specialist, and I should also discuss this question with my OB/GYN. (I have an appointment in October.) There seems to be a lot of negative side effects when getting ovaries removed pre-menopause, so I hope I can avoid it.

On Monday morning Ken and I will meet with the oncology nurse to review my entire treatment plan. It'll also be a chance for us to ask questions.

Incidentally, at the start of this appointment, I had a blood draw. In retrospect, I'm sure it was to get a baseline before I start treatment.

It's all very overwhelming. I really feel like I'm just being carried along on this river. I don't know where it's going. Whatever comes up, it is what it is. I just have to do whatever I have to do.