Tamoxifen, take two

Though I am not a fan of snow, it's kind of nice to be "snowed in" today with the whole family.  Mira was up early and made pancakes from scratch for us all.  I had eggnog in my coffee this morning, deciding to embrace the snow instead of despise it, and I'll spend much of the day correcting papers, reviewing a book chapter and planning the rest of my semester of teaching.

This week I had another Herceptin infusion and #4 of 6 immunizations in my clinical trial.  Nothing new to report there--same immunization-related reaction (chills, low grade fever, exhaustion) on the day after my appointment.  Same itchiness and redness at the site of the intra-dermal injections.  It's been three months since my last one, so I get another MUGA scan of my heart, too.

At my appointment with Dr. Shah this week we discussed the Tamoxifen situation.  She *really* wants me on it (or another estrogen blocker) and does NOT want to put me on Lupron (which is a GnRH agonist resulting in blocking estrogen production), which would be necessary to try aromatase inhibitors (Arimidex).  She doesn't want to do Lupron because the side effects are similar to those I've been having with Tamoxifen, and then if you add in another med (Arimidex) and its potential side effects, you're kind of asking for trouble.  However, she did say that she would consider switching me over after one year (previously said two years).  I told her I could put up with the pain for a year, but she suggested we try something else instead.  So I'm on a half dose of Tamoxifen now to see if the side effects come back.  The plan is that if they don't (fingers crossed), then she will titrate me up to a full dose--possibly split between evening and morning--and maybe I'll tolerate it better that way.  

I've also started a low dose of Effexor (an antidepressant used off-label to combat hot flashes) in hopes that I won't be woken up so many times in the middle of the night due to the hot flashes.  I'm not sure if they've gotten worse since adding the Tamoxifen, or if it's worse with the temperatures dropping (so I'm constantly veering between boiling and freezing), but I thought I'd try to see if I could get some relief.  I should know within a week if it's working.

~~~~~

In other news, I've been at my new job two weeks now.  I love it!  Almost everything about it is completely new--including all the terminology and acronyms--and my brain is getting quite a workout, but it's really, really cool!  I'm ridiculously giddy every time I get a physical reminder of how I'm now part of the team (got my business cards, my name got added to the phone system, I ordered tops with the health department logo on them, got my ID picture taken). I work in a village hall (in one of the 7 communities covered by the health department) and it reminds me so much of my mom's work environment at the Iron County courthouse.  Everything about it--from the police department being housed right there (but behind locked door--they even have the good soda vending machine) to the break room--makes me smile to think how my life's changed since then.  It gives me a nice sense of comfort to have the familiar in the midst of all the new.

~~~~~

I'm looking forward to seeing Cara this week for Thanksgiving.  The stretch from August to Thanksgiving is always so long.  I get Thursday and Friday off of work, so we will do some Black Friday shopping.  And we'll be having turkey with Greg's family for the first time in several years, and that will be fun.  

~~~~~

Mom's house is ready to be listed.  The realtor will be coming to take photos tomorrow and it should go on MLS on Monday.  It looks awesome.  I'll be sure to post the link on Facebook when it's released.  My brother came down last weekend to help move the rest of Mom's things up North (including her motorized recliner).  Although he drove down, loaded up, and turned right around to head home, it was nice to see him, however briefly.

Tamoxifen

Time is just flying by.  Since my last post, Mom made her move Up North (email/message me if you want her phone number and/or address), I have almost finished my part-time job at Zilber (which was bumped up to full-time for a few weeks, but that's a different story), and I started on Tamoxifen.

One of these things did NOT go as well as hoped.  :)

I really cannot complain too much, as it's not like the Tamoxifen is making me house-bound.  But it's pretty yucky just the same.  All my joints ache, but especially my hips.  By the end of the day, it hurts to walk (so you know what's happened to my exercise plan and my great ambitions using the FitBit). And it's upsetting my stomach, too.

This week at my meeting with Dr. Shah, I told her about all the yucky stuff I was feeling, and she said that my symptoms didn't sound like typical Tamoxifen side effects, so the first thing we had to do was figure out whether they were being caused by the Tamoxifen or something else.  (She thinks it might be the Herceptin or the clinical trial meds.)  That means I'm off the Tamoxifen for three weeks to see if the side effects disappear.  So far my stomach upset has stopped (yay!) and I'm not as achy, but that might be because I've been using Advil and Tylenol to counteract the effects of the clinical trial (typical vaccine-related, immune response symptoms).  We shall see...

I'm not quite sure what will happen if it is the Tamoxifen.  Standard of care is switching from 5 to 10 years on it, so while I could tough it out and put up with the ickies through either the clinical trial (9 more weeks) or Herceptin (6 more months), I'm not sure I could handle it for ten years.  Guess we'll see what the next three weeks hold.

~~~~~
Mom's move went very well and she's settled in and, other than missing her recliner, very happy in her new digs.  She's had visits from many friends that she hadn't seen in years, and is thrilled to be closer to my brother.  I'm much relieved that everything went so well, and also occupied readying her house to go on the market next month (anyone want to buy a ready-to-move-in home in an awesome school district with FABULOUS neighbors?  ;)

~~~~~
And my last week of work at Zilber is crazy, but fun, too.  I decided to stay on to get through the travel stuff for the recruitment job, and that means that from today to next Thursday night, I have events non-stop, including an overnight trip to Delavan, a 3-day trip to Chicago, topped off with the UWM Grad School Fair next Thursday night.  Then I start my new job Friday morning.  Of course, I'm still teaching, too.  And I'm tired (very tired), but I'm not exhausted.  In June, when I could barely keep my eyes open enough to work one 8 hour shift, I never thought I'd be able to work full-time (plus) again.  It feels good!  Now if I could just shake the body aches... 

Major life changes--and some fear

I realize it's been almost a month since I last posted.  Partially it's because there's not been much cancer-wise to post about. Partially it's been because I've been so busy that I haven't actually had time to sit and write a post.  But mostly it's been because I haven't so desperately needed to blog lately.  I began this blog to give myself something to do during my (at the time) upcoming recovery, and to help myself remember my journey.  But it became a sanity-saver and a mood-booster, as I (selfishly) watched the numbers on Blogger's Stats page.  My highest count was 314 on one post.  314 of you read something I wrote (or a few of you read it many, many times...).  I doubt that anything I ever have written (publications?) or will write professionally will be read by that many people.  That's a huge bump to my ego.  :)  However, I haven't needed to see those numbers as much, as I'm re-entering, and slipping back into a less me-focused place.  As I have been going through treatment, I've found myself very self-centric.  I liken it somewhat to both the toddler and the teenage years, where it's difficult for the kid (or me!) to look at life through anyone else's lens but their own.  I realize that it's at least partially necessary, as healing takes so damn much energy!  But as I've regained energy, I've been more easily able to shift the focus from me-first.  That excites me.

So as an update, I'll start with the cancer stuff, following my appointment with Dr. Shah yesterday.

My weight is still up a little bit.  Admittedly, I haven't been trying too hard to eat healthy (busy life = quick food and too many carbs), and I'm not running much, although I have a FitBit now and that does make me work hard to get in at least 10K steps a day.

My labs are fine:
Hemoglobin 11.3 gm/dL
White Blood Cells 4.2 thou/mcL
Platelets 72 thou/mcL

I'm glad that I'm mostly maintaining my hemoglobin with only one iron tab a day, and that my platelets are hanging in there.

I had my second "Herceptin-only" infusion yesterday.  I'll have these every three weeks until April 13 (if I did the math correctly).  I didn't write after my last Herceptin infusion, because it didn't go all that well.  I mentioned earlier how I am taking part in a Phase II Clinical Trial for NeuVax ("the breast cancer vaccine").  I had my first inoculations (4 of them) last visit, and will have the same four given each of these first six Herceptin-only infusions.  After the first ones, which hurt like hell, by the way, I came home and crawled into bed, shivering horribly, with body aches, a fever, and generally feeling like I had the flu.  The injection sites had knots under them, were red and swollen, and itched like crazy for over a week.  As I was lying in bed that night, miserable, I started to look up more information about the NeuVax trials--which was a stupid idea in that state!  I did find something that said low platelets could be a reason to exclude a patient from the clinical trial, as could an autoimmune disease.  So that freaked me out a bit.  I then struggled mightily about what to do with my participation in this clinical trial.  I have, from the start, been absolutely sure that I wanted to do this, half-joking that I owed it to all the mice I sacrificed in the name of science for my doctoral research.  But now I was starting to have doubts--especially after reading the sensational posts about NeuVax and how it was doomed to fail, and actually increased the risk of breast cancer returning (ahem. I *teach* how to know a website that gives reliable health information from an unreliable one, and I was still being sucked in).

Anyway, I did call the Clinical Trial team and voiced my concerns.  They immediately contacted the lead PI on the trial and reassured me that I was still eligible (the platelet thing was in combination with other risk factors, but they will still watch my levels closely, and ITP is not an autoimmune disease that they were concerned about).  Furthermore, now that this trial had been going on awhile at different sites (did I mention that I was the first one enrolled in the trial at my site? First for the nurses to give the injections?), they had some tips to ease the side effects.  I also convinced myself (whether correctly or not) that if I had such severe reactions to the injections, I must SURELY be getting the real thing (I'm blinded to whether I'm getting drug or control).  So I took Tylenol before this round, and have kept up my levels since then.  The injections weren't so painful this time (nurse had more practice), and while I hit a wall of exhaustion last night, it wasn't as bad as the first time, and I didn't have the other flu-like symptoms.  Best of all, I'm helping out Science and Cancer Research in a way that not just anyone can do.  Take that, Pinktober!!!

Since I'm doing so well--almost no signs left post-radiation other than a bit of a tan around my right breast area--that meant that yesterday I got the all-clear to start the next phase of my treatment: hormone blocking.  My particular tumors were estrogen and progesterone receptor positive, so I need to take adjuvant therapy (pills) to block the hormone production. The big choices are Tamoxifen or an aromatase inhibitor (most common is Arimadex).  Most of the estrogen in the body is produced by the ovaries, and Tamoxifen blocks its production. Aromatase inhibitors only block hormone production by fat tissues.  As you can imagine, a drug that only acts on one type of tissue (fat tissue) would be expected to have fewer, less-serious side effects.  And that's the case.  So if your ovaries are no longer producing estrogen, aromatase inhibitors are for you.  However, if you're pre-menopausal, you need the bigger guns that act on your ovaries.

I'm not (yet) post-menopausal.  I've been lucky enough to be going through chemically-induced menopause most of this year, but I'm not clinically there yet.  So I get to at least start with Tamoxifen.  The plan is, if I've still not had a period in the next two years, to switch to an aromatase inhibitor at that point.  Recommendations are continually being revised as to the amount of time it is best to stay on hormone blockers.  Standard of care currently says five years, but there are multiple studies now looking at ten.  Who knows what they'll recommend in five years from now.

For some reason, the Tamoxifen is causing me much more fear than the other treatments I've had.  Maybe because I knew the others had a relatively short timeframe?  Maybe because I had no time to think about the other treatments without having to just DO them?  But mostly, I think, I'm afraid because this is supposed to be the "easiest" of the four (surgery, chemo, radiation, hormone therapy), and while I wouldn't call the other three pleasant, they haven't been as bad as I expected.  And now I'm afraid this will be even worse than I fear.  The side-effects scare me:  blood clots, uterine cancer, cataracts, intense menopausal symptoms, weight gain, depression, trouble sleeping, vision changes.  Maybe I'll be pleasantly surprised by how easy hormone therapy is, too.  If only I could convince my brain of that!

~~~~~

There are a few major changes in my family, too.  One of the biggies is that my mom, who has lived next door to me for the last 7 1/2 years, is moving back Up North.  It's really her story to tell, so I won't elaborate much on it, but I know she is looking forward to seeing all her Hurley-area friends, and especially living close to Steve and Amy.  And I realize it's time.  I had her here for the majority of my kids' growing-up time.  She came down when Mira was  in Kindergarten, Travis finishing Elementary School, and Cara finishing Middle School.  She gave my kids a chance to have a grandparent be part of their everyday (every day!) lives, and she made it possible for me to go back to school and to earn my grad degree.  But now my brother should have a turn.  :)


~~~~~
The other big news is that next month I will have a new job.  Not only will it be a full-time job (my first since 1997), but it will be a job in my field--the one I went to school for 5 1/2 years for.  Starting November 6th, I will be a Public Health Manager at the North Shore Health Department, which services seven suburbs in Milwaukee County.  I am beyond excited to start, while at the same time being sad to leave Zilber--especially all my co-workers (past and present).  I am lucky that I am able to continue to be Adjunct Faculty at Zilber, and will continue to teach PH101 this semester, and possibly other classes or give guest lectures in the future.  To be honest, I'm a little afraid to be leaving that cocoon, too.  I've been part of the School of Public Health for over 6 years.  But--again--I think it's time to do something else.

~~~~~
Besides all that, life continues to be very good.  Mira had a great season with the Middle School Cross Country team and got second in her age group at the Panther Prowl today, running a 24:30 5K.

 Travis is getting ready to apply to colleges, and is enjoying his Senior Year.  This week was his last homecoming, and he's at the dance right now.

I assume my posts here will continue to be less frequent, but it's been really nice to write again, so I certainly won't stop entirely.  I'm also looking forward, with my new job, to have normal hours and therefore evenings and weekends off!  I've loved re-connecting with many of you, and hope we can continue.  I'll be crazy-busy between now and the end of the year, working 125% (full-time job plus 25% appointment teaching), getting Mom's house ready to put on the market, and all the other things that come with life.  But come that first week in January, I fully plan to celebrate my first year Cancerversary.  :)  It's giving me something to really look forward to.

Burritos as big as a chihuahua

Surgery ✓
Chemotherapy ✓
Radiation ✓

Back in December, when I got the initial results of the biopsy, Deb (the nurse navigator) called me and did an awesome job of meeting me where I was at with regards to what the future might hold.  She explained that they didn't have all the specifics of my cancer, but that there are four main methods to treat breast cancer and that my particular treatment could be a mix of any of them.  They were:

Surgery

Chemotherapy

Radiation

Hormone therapy

Lucky me, I get to have all four.  But today, I completed the third of these--and what I hope to be the end of the most life-interrupting.  I still have Herceptin infusions every three weeks till spring, and I'll have five years of hormone therapy, and I know I'll have frequent follow-ups, but these were the biggies.

At Columbia St. Mary's, they have a triangle on the wall of the radiation oncology department and when you're done with your last radiation, you get to ring it.  I walked out of my last treatment, excited to ring the triangle, and Greg was there, waiting for me with flowers.  I couldn't believe what an emotional moment it was and I teared up.

So radiation was done and to celebrate, the family (minus Cara) went to BelAir Cantina and ate burritos "as big as a chihuahua."

(Cara--dad wore his Hamline tee so it was almost like you were there with us)

They were fantastic--as were the house margaritas.  Unfortunately, before the radiation appointment, I'd had my pre-clinical trial bloodwork done, where they took six vials of blood. Note to self: margarita after losing that much blood is not the best idea.  That was a REALLY good margarita!  

I am a little embarrassed at how excited I am to be able to resume doing something now that radiation is over.  What is it?  This:

(probably not as excited as my family and friends are)

I'll write more in a few days, probably, including lovely details of my last week of treatments. But for now I really need to head to bed.  Must be that margarita.  :)

Super busy

Today I had radiation #21 with 7 left to go.  Yesterday was the first time I had any signs of radiation on my skin (other than the allergic rash to Aquaphor, but I don't count that).  I have an obvious sunburn kind of pattern on my chest and upper arm.  It's most obvious in the line at the top of the radiated field. The area feels hot to the touch and a little uncomfortable/pinchy. But after this week, I'll have 3 days off, 4 days of radiation, then a weekend and one last day.  I can do this!  :)

Last week Wednesday I had an appointment with Dr. Shah.  I got my MUGA test results.  Before beginning treatment (chemo and Herceptin), my left ventricular ejection fraction (LVEF) was 65%.  After chemo, it dropped to 56%, but she was not concerned about that drop.  I'll continue to have MUGAs every 3 months until next spring, when I'm done with the Herceptin infusions.  

I also learned that I was accepted into the Phase 2 Clinical Trial for the NeuVax (breast cancer vaccine).  It might sound strange that I'm excited to be getting 10 sets of 4 injections (can't say "immunizations" since I don't know if I'm in the control or experimental group), but I really kind of am!  Someday I'll know which group I was in, but not for several years.

My lab test results were pretty good.  My platelets dropped back down to my normal, but my hemoglobin is quite possibly the highest it has ever been.  It's certainly the highest it's been in my electronic medical history.

Hemoglobin 12.4 gm/dL
White Blood Cells 3.8 thou/mcL (a little low)
Platelets 86 thou/mcL

My weight is nearly the same, but my BMI was recorded as 25.0, which is the very bottom of "overweight"!  I guess that's something. :)

I've now been completely off the Zoloft for 2 weeks (started weaning off a month ago).  I think I'm doing fine, but I did notice that my bad dreams have returned.  Actually, all my dreams have returned (at least the memory of them), but I don't mind the GOOD ones!

My hair continues to fill in.  My eyebrows have both left me completely, and decided to start coming back.


Though I was feeling exhausted a few weeks ago, I seem to have adjusted to the feeling and I've had a lot of chances to do fun things lately.  


I visited with my former classmate Rohan and his wife.
I attended the (beautiful) wedding of my former classmate Katie.
I went to two parties--a birthday party for my friend Scott, and a book release party for my friend Dean.
I went to a mini concert featuring Silversun Pickups with Cara.

The younger kids started back to school yesterday and both seem pretty happy with classes and teachers.

Greg started back to teaching today and he, too, is happy with his classes.  :)

And I got an "add-on" contract to teach PH101 as an instructor (i.e.: not a TA!) at UWM.  That essentially moves me up to being 75% employed--at least until December!  My first class meets tomorrow morning.  Current enrollment is 68 students--the largest class I've ever taught.  I cannot wait!


And to close, we got Travis' Senior pics back.  The CD has 76 photos on it, and choosing my favorites is hard, but here are a few of them.

Halfway there...

Today was radiation #14 with 14 left to go.  So far, it's been so much easier than chemo (knock wood!) that I don't mind the daily visits to the cancer center.   I had a bit of a rash early on, but Dr. Schulz said it looked like a reaction to one of the lotions I was using.  So much for my love affair with Aquaphor!  I'm now using Vanicream 2x a day and real aloe a third time and the rash seems better.

Unfortunately, this weekend I began to feel just generally yucky again.  The cording seems to be coming back.  And I'm tired... I'm very, very tired.  I'm feeling silly for not taking better advantage of the month where chemo was over and radiation had not yet hit me.

But I've done some fun stuff, including attending a few cookouts; having lunch/coffee/dinner/drinks with friends; walking and running; knitting groups during the daytime and nighttime.  My hair continues to come in.  I bought some temporary pink hair dye, but didn't really like the way it looked.  I'm enjoying having all the kids home for the last few weeks of summer.  And I'm gearing up for fall semester!


Not much new or exciting, but normal is kind of nice, too.

Radiation

This week I started radiation.  My first radiation appointment followed my Herceptin infusion (which will be every 3 weeks for nine months).  The infusion is done in the same place as I got chemo, and in the same manner.  However, it's much quicker since it's only the one drug, plus I don't need pre-meds.  It may sound like a little thing, but I was very proud that I was able to go by myself.

Look--my hair's coming in a bit more!

I met with Dr. Shah, as with before my chemo appointments, and my blood counts are recovering really well.

Platelets:  97K  (I was hoping they'd go even higher, but this is normal for me, so I'll take it)

Hemoglobin:  11.8 gm/dL (That's almost normal, which is 12; mine had gotten as low as 7.0 after surgery and 9.5 during treatment--with taking three iron tabs a day; this is down to 2 a day!)

And I was down 9 lbs. in three weeks!  That's without really dieting--just being a bit more careful about what I eat, and making a conscientious decision to get at least some exercise every day.  It helps that my feet are feeling lots better (still some numbness, but not painful).

One of the things that I have to work on during radiation is weaning off of my Zoloft prescription.  I didn't realize that I'll be starting on Tamoxifen right after radiation (thought I had to get thru the Herceptin first), and Zoloft is incompatible with Tamoxifen.    A 2009 study found that "...women on tamoxifen who were also taking one of three SSRIs -- Paxil, Prozac, or Zoloft -- were about twice as likely to have their cancer come back, compared with women on tamoxifen who were not taking an SSRI...Tamoxifen mixes with a liver enzyme called CYP2D6 in the body to change into the tumor-fighter endoxifen. Many SSRIs block the same enzyme, thus preventing tamoxifen from morphing into its active form."  I've only been on the Zoloft since the end of November (when I found the lump), and I'm only taking 25 mg a day, so I've cut those in half and will take a half tablet for two weeks.  If I crash, there are some non-SSRI anti-depressants that I could use, but I really hope that I'll be able to go without.  I'll have enough foreign stuff in my body for the next 5+ years.  :)

It's also time for my second MUGA scan to check on the damage that the chemo (Adriamycin) did to my heart.  That's scheduled for Tuesday afternoon.  I'll need to have them done every 3 months because Herceptin also causes heart damage.

One kind of cool thing that happened during my appointment with Dr. Shah is that I was offered the chance to participate in a Phase II Clinial Trial.  This trial is for Her-2+ women and it offers a vaccine (NeuVax + GM-CSF) in combination with Herceptin (the control is GM-CSF alone).  I had the initial testing done to see if I qualify (haven't heard yet), but I want to read up a bit more on the vaccine before signing on for sure.  Still, it's exciting to have the possibility to participate and potentially help many people in the future.

Radiation itself is pretty uneventful.  The first appointment took about 30 minutes, which included changing into a hospital gown.  The radiation techs had to line me up with the lasers again (using my tattooed marks) and then they also took a bunch of x-rays to be sure that the plans made last week were correct.  Dr. Schulz came in to double check, and then I had my first treatment.  Thursday was my second treatment and it was only about 15 minutes, as they took fewer x-rays to be sure things were lined up correctly.  Friday was even quicker--I was out of the office before my scheduled appointment time!  I'm hit five times--each ranges from 10 to 20 seconds and comes at me from a different angle.  I feel nothing (other than a bit of claustrophobia when the machine pivots over my head), but the awkward position I'm in, combined with the strange noises make it impossible to think of anything other than the fact that I'm being hit with radiation.  I really need to learn some meditation.  This is kind of what the machine looks like.  

Hey--it's even aimed at the same spot for me!

I've only got 25 left to go.


And after last week's post, my friend Rob sent me this XKCD comic, which I'd forgotten existed:

~~~~~
I continue to be amazed at how truly wonderful it is to feel better.  I'm not 100% better, and I've developed some fun additional annoyances (the chemically-induced menopause is causing delightful hot flashes), but overall, I just feel good.  And happy!

I'm having fun spending time planning for the future.  My friend Nikki took Travis' senior pictures on Wednesday (her photography business is Ashley-Jordan Photography and I highly recommend her; she took Cara's pics, too).  I'll share some pics when I get them back.  High school registration is on Monday, so we have all the paperwork for that, including the calendar--which has commencement on it.  Gulp!

I spent most of my work day on Friday registering for recruiting events for work.  I'm most excited to be able to travel to UW - La Crosse (where I got my undergrad degree and where Greg and I met) in October, but I'll be going to a few graduate fairs in Illinois and one in Madison, as well as some local ones, too.  And I'm looking forward to it.

~~~~~
This week I even got back to running.  I decided to start all over with the Couch to 5K (C25K) program and the timing is such that I hope to be able to complete it in time to run 5K for the Panther Prowl in October.  The first day was awful--my feet felt like bricks.  The second day was still bad, but today (third day) actually felt *good*!  Mind you, at this point, I'm doing 60 seconds of running, followed by 90 seconds of walking, so it's really not much.  But it's something.  :)

The timing could not be better, as my friend Alice shared this article today on how moderate exercise may make tumors more likely to respond to radiation.  Go, me!

~~~~~

I want to close with a round-up of some of the fun stuff since my last post:
*A wonderful time at the World Breastfeeding Week walk (and Fondy farmer's market), complete with adorable babies all over
* The ZAP dinner--a campfire theme
*A Thai lunch (and catching up) with my friend Katie
*An evening running errands and being silly with my kids
*Dinner (and shopping) with my friend Michelle
*Coffee (and Target) with my friend Chelsea
*Beautiful surprise flowers from my survivor friend Susie

The card says, "Wear some cool boots.  Cool boots make you feel like you can handle anything."
and on the inside, "Or at least kick it really hard."

Life continues to be good.  Very good.