Six Treatments Down, How Many More to Go? – June 29, 2015

I’ve had a busy week!  There’s a lot to tell!

After a relatively quiet weekend, I went in for my breast MRI on Monday.  I don’t know whether it’s because I’ve already had one or not, but it felt like the time flew by.  I also stayed somewhat cool; the last time I had a breast MRI I sweated so much I felt like I was cooked.

After the MRI, I went to the infusion center to get a blood transfusion.  Actually, “transfusion” is incorrect – it’s an infusion.  I received 2 units of blood of O negative blood (I’m O positive).  I’m an 8 gallon donor myself, but it felt odd to be on the other end of a blood donation.  I was also surprised that I received 2 units – that’s a lot of blood!  The blood was refrigerated, so it was also cold going in.  My friend Alissa dropped by with lunch and cinnamon rolls from Ikea (who knew Ikea made cinnamon rolls?).  That night, I felt kind of odd – whether it was all that extra blood or just the idea of all that blood, I don’t know, but I crashed early.  They said I would feel better almost immediately, and indeed, by Tuesday I was feeling much more peppy.

I received some great news Monday night before I crashed; Dr. K sent me a message to let me know that the breast MRI showed that my tumor had “melted away.”  We’d hoped this would happen; in fact, it’s why Dr. Ching (breast surgeon) had a clip put in where the tumor was, so that she could identify the location of the tumor if the chemo did its job. This does not mean I can forego any treatment – I will still need to finish chemotherapy, and I will still need to have surgery and radiation. The fact that the tumor is gone, though, is a relief.

The rest of the week was busy, busy, busy!  I went to the Lady A concert 2.5 hours away on Thursday, which means I got home at 2 am.  I met my friend Angie at the concert, and drove up with friends Liz and Eric.  I had chemo on Friday; another six hours at the infusion center to get Taxol, Herceptin and magnesium.  Then I headed off to see Lady A again, this time with my niece Natalie.  Our 6th row seats were on the aisle, which meant we had plenty of opportunity to press the flesh with the artists.  In fact, I received a huge hug from Charles Kelley, which was amazing.

As if that weren’t enough, on Saturday was the California Clasico – the soccer match between the San Jose Earthquakes and LA Galaxy at Stanford Stadium.  The match was a sellout this year, with almost 51,000 people attending.  The Quakes won, which was great, and the fireworks after the game were spectacular.  On Sunday Natalie, and friends Karen and Amanda came over to watch the 2nd half of season 1 of Outlander.  Sunday night we welcomed a weeklong foster, Sadie, whom we are driving to Elko, NV on Friday.  Sadie is a tiny, dainty Siamese/Tonkinese kitty of 6 pounds.   I’m having a wee problem with my friend diarrhea the past few days, but hopefully that will clear up soon.

I lost a third fingernail on Sunday.  While it’s not pretty and goodness know how long it will be before my nails are ‘normal’ again, it actually is far less painful to have no nail than it is to have a nail which is just hanging on.  There’s also the inconvenience of not having a nail – try scratching an itch with no nail – but it’s actually kind of painful to have these nails which are not attached to the nail bed. 

I have an appointment with Dr. Ching this week, and I have to say I’m kind of excited about it.  It means I’m nearing the end of my chemo treatments (except for Herceptin) and moving onto the next phase of treatment.  The real question, though, is how many more treatments do I have?  Dr. Priya is out of the office until July 13, and I haven’t had a chance to discuss with her how many treatments I’m to have.  The last time we talked about it, she mentioned 10 treatments, but apparently my chart says 8.  I have an appointment with one of the other oncologists, Dr. Colocci, on Wednesday; I suppose we’ll discuss the number of treatments left then.  For now, I’ve got chemo scheduled through July 17, which would be 9 treatments total.  That would be just fine with me.

A Good Week! – June 19, 2015

With a week off from chemo, and just receiving Taxol and Herceptin last Thursday, this week I felt pretty good.  My BP hasn’t dipped low (I stopped taking my high blood pressure meds), and I’ve been making sure to drink plenty of fluids.  Basically I drink 30 oz first thing in the morning, which ensures that I get at least 1/3 of the 90 oz they want me to drink every day from the start of the day.

On Friday I had my appointment with Dermatology, to look at all of my nails.  I wouldn’t say that was the most productive appointment:  I received an antibiotic  ointment to use when my nails start falling off; the doc told me to keep my cuticles super moist (she suggested using Aquafor, which I’m discovering is the solution for everything) to try to keep the seal that cuticles create with the nails.  She did say that my skin looks terrific for undergoing chemo, so that was a plus.  I’d already lost one fingernail by last Friday, and today I lost another when I hit the gear shift in my car just right.  Both on my right hand, I’ve lost the nail on my forefinger and 4th finger.  I think I should have invested in Band-aids! Neither nails were the ones which were infected and caused the fever.  I guess it makes sense that I’d lose fingernails first because the hands get used for all sorts of things. The toenails were first to start separating from the nail beds, but for now they’re all still there.

I was able to go to work Monday-Wednesday this week.  Yesterday I had to take my car for servicing, so I worked from there and then home.  I got a blood draw first thing in the morning.  I’ve felt pretty good all week, and had very little diarrhea.  Once was when I forgot to have some yogurt while taking antibiotics and once when I couldn’t resist and ate a lot of cherries.  I love cherry season, but eating them in the quantities I can (and do) gives me diarrhea when I’m not undergoing chemo, never mind now!  Either way, I’ve learned to manage the diarrhea pretty well.

While I was at the car shop, Dr. Priya called to tell me that she was able to prevail and that the Perjeta was approved from this point forward.  PAMF will have to apply to have the May 15 treatment retroactively approved; on my insurance site that claim’s status has changed from “Denied” to “Pending” so I’m thinking that’s a good thing.

When I got home, I got a call from Velia, who informed me that while my counts looked good (mag was low at 1.2), my hemoglobin had fallen from 9.4 to 8.1 and that I would need a blood transfusion. At today’s infusion, they took blood to be typed and crossed, and I’ll have the transfusion after my breast MRI on Monday.  A transfusion takes 4-5 hours, and there is no time for a directed donation.  I need the transfusion on Monday, and for a directed donation, Stanford Blood Bank would need to do all sorts of tests – which would take a week.  Plus, insurance won’t pay for a directed donation transfusion (surprise, surprise).  So I have to trust that Stanford Blood Bank has done its job in screening and testing the blood I’m going to receive.  Because I’m getting chemo weekly, I’m figuring that my hemoglobin doesn’t have time to recover, which also explains the urgency in getting a transfusion on Monday.

The approval of Perjeta meant that today’s infusion was Taxol, Perjeta, Herceptin, and the ever present magnesium.  We had a little trouble drawing blood from my port, which is very unusual, but eventually we got what we needed.  After the pre-meds, the blood draw, and the chemo and mag, I finally left after 7 hours.  I woke up at 4 am this morning and couldn’t go back to sleep, so I’m super tired tonight.  I suppose I might have taken the Decadron a little late last night, which could be why I didn’t sleep well.  I don’t think that will be a problem tonight.

I’m off cycle a little:  I should have received Perjeta last week.  I don’t know what that means for how many more treatments I will get, and how many more treatments of Perjeta I’ll get.  I did get a phone call today while in the center from Jennifer the nurse educator, who said that it looks from my chart that Dr. Priya was planning on 8 treatments total, and that meant I should see Dr. Ching (breast surgeon) to start preparations for surgery.  I thought Dr. Priya wanted 10 treatments, so I’ll have to ask her when I see her next, but in the meantime I’ll be scheduling an appointment to see Dr. Ching soon.

Did you catch that I mentioned a breast MRI on Monday?  Yep.  I’m going to have another one to see if the chemo is doing its job and reducing the tumor.  Neither Dr. Priya nor I can feel it anymore, so the chemo has got to be reducing it, but we can see by how much.  Dr. Priya also wanted to make sure that the chemo WAS doing its job, because why put me through all this chemo if it wasn’t working.

I’m really happy that I had the forethought to go to Sephora before I started chemo to learn how to draw eyebrows.  It’s kind of shocking to see just how few eyebrow hairs I have!  and I have exactly 1 eyelash on my left lower lid.  I wonder how long that lone soldier will last.  The hair on my head is what I’d call just really, really thin – Ted hasn’t shaved my head for a couple of weeks, so I can see the hair growing.  It’s mostly white 😦 and just thin all over my head.   I may keep a shaved head even after I’m done with chemo. I like looking badass, and I’ll save a ton on hair product!

We have a relatively quiet weekend ahead of us, which is good.  I need to finish online traffic school, write performance evaluations, and work on my conference presentations. Aside from a late lunch tomorrow with our friends Jess and Matt, we’re homebodies.  And it’s a good thing – I have an incredibly busy week ahead.  I’ll tell you all about it next time!

If It’s Not One Thing, It’s Another – June 11, 2015

Let’s start with the end today.  I received Taxol, Herceptin, 2 grams of magnesium and 1 L of saline.  I was at the infusion center for 6 hours again, and my friend Nancy brought me lunch because I forgot my lunch at home.  Thank you, Nancy!

Astute followers will note that I did not receive Perjeta which I should have this time, every 3 weeks.  I did not receive it because some lackey at Anthem Blue Cross decided to deny the Perjeta for the Taxol protocol, even though it was approved for the Taxotere protocol. It also means that right now I’m on the hook for the round of Perjeta I received in the first round of the Taxol protocol on May 15, to the tune of $26,000. I sure hope Dr. Priya is able to prevail.  It makes absolutely no sense to approve it for one protocol and not the other when both protocols are NCCN (National Comprehensive Cancer Network) approved.

Why did I get 1 L of saline?  Because when I arrived at the infusion center, I was obviously struggling and did not look great.  Indeed, my BP was 84/54.  Why was my BP so low? Apparently I didn’t drink as many fluids as I thought I did yesterday, but I also had a fever from Sunday until late Tuesday night.  Turns out that the fever was probably caused by infected fingernail beds.  I got antibiotics on Tuesday, the infections have seemed to have cleared up, and I have an appointment with Dermatology tomorrow.  I don’t know what I’ll be told, but I estimate that I’m going to lose 8 toenails and 4 fingernails. The nail loss is an extreme side effect of Taxotere. Seems I got ALL the extreme side effects of Taxotere. Lucky me.

Because I looked so terrible when I arrived, and my vitals were terrible (in addition to the low BP my pulse was 125, which meant my heart was working way too hard), Dr. Priya thought about delaying my chemo today.  Her compromise was to give me 1L of salne, recheck my vitals, and run the rest of my labs while I received the saline (over 2 hours).  I got a blood draw on Tuesday, but only a CBC to check my white blood count – to see what the fever was doing.  My WBC was fine, which is why I showed up today for my infusion. So they ran my magnesium and a basic metabolic panel, mainly to see how my potassium was doing. My potassium was normal at 3.8 (yeah, the oral meds are going the job), but my magnesium, while better, was still low at 1.3.

When I’d received about 750 mls, my vitals were taken again, and my BP was 95/66, and my pulse was lower at 116.  So we went ahead with the Taxol and Herceptin today, which made me happy.  Amazing how sleepy IV Benedryl makes me – I always end up taking a nap!  By the end of the infusions, my BP was 107/79 and my pulse was down to 109.

The facepalm of the day was the realization that I’ve still been faithfully taking my high blood pressure meds…so I’m off them for now (upon Dr. Priya’s orders and notifying my PCP), and I’ll be checking my BP every night. Hopefully that will help.

The other piece of news I received this week is that my hemoglobin is on a steady decline, and is currently 9.4.  If it goes down below 9.0, there’s a very good chance I’ll receive a blood transfusion.  It’s yet another reason for my increased dizziness, especially from a sitting to standing position; for my shortness of breath, and why I get tired more easily. Just another side effect of chemo, but having to receive a transfusion doesn’t make me very happy.  I’m hoping I can get a directed donation, which at this point looks like Ted, who is the universal donor.

I’ve had kind of a crappy 2 weeks, between the low potassium and magnesium and delay of chemo, followed by fever…At least I had a great day on Saturday.  We delivered a cat which was being transported to Arizona (I’m involved in volunteer animal transport) and then took a drive over to the coast.  It was a gorgeous, glorious day – the kind you can only find in California, and we had a lovely day.  All is not lost.  Things are looking up, and I just have to focus on the next week.  I can’t worry about things currently not in my control (like insurance approvals), and I just have to live each day at a time.  That’s how I’ll get through this.  That, and a wonderful support network of family and friends.  I’m still blessed, and I know things will be okay.

Good, and bad – June 5, 2015

I went in for my infusion of potassium and magnesium, and the 4 hour drip was a breeze.  My BP was 108/80 today, and while my pulse was 128 when I arrived by the time I finished it was down to 99.  All good signs that the drip did its thing.  The question now is whether I can keep my potassium and magnesium levels okay.  Given that I had diarrhea today, I’m not very confident, but I’ll be more careful about what I eat and much more diligent in taking Lomotil or Imodium after every bout.

The bad news is that currently I’m scheduled for chemo on Thursday, which means I’ve essentlally missed a week.  The reason, other than to give my body a chance to recover, has to do with insurance.  If you recall, the reason I’m having chemo first then surgery was that one of the drugs for my type of cancer – Perjeta – is only approved by insurance for neoadjuvant therapy, so the typical order of surgery, chemo, radiation was altered to be chemo, surgery, radiation.  The reason it’s important to have insurance pay for Perjeta is that it’s $26,000 a treatment.  My insurance has paid for the Perjeta I received in January; I received it again when I started this new protocol of Taxol with Perjeta and Herceptin 4 weeks ago.  It’s not clear whether that treatment was approved, but I do know that Dr. Priya needs to do a peer-to-peer justification for me to receive more.  That justification is on Monday, and in order to give the review some time, PAMF didn’t want to schedule me for chemo on Tuesday.  By the time this was all figured out, Wednesday was booked, so here I am, scheduled for chemo on Thursday.  My infusions are super long, 5-6 hours, so it’s not like they can slot me anywhere for an infusion.  Still, I asked if there was a cancellation on Tuesday or Wednesday and if my treatment was approved if they could call me.

I know I shouldn’t be so focused on the timing for my vacation, but while I am going to relax and heal, I still want to have some fun.  I just have to relax and have faith that it will all work out.  One option that Dr. Priya mentioned is that I could also have chemo after surgery – but if that’s the case, I won’t be receiving Perjeta, unless that therapy is approved for adjuvant therapy in the intervening months.  She could decide that 6 rounds of Taxol is enough.  (I think my body would agree with that…)  The puzzling thing is that Taxol is supposed to cause constipation; Perjeta can cause diarrhea, but any Perjeta when this protocol first started is well out of my system.  The diarrhea has gotten worse, so I’m convinced my body simply does not like the Taxene family of chemo drugs.  I’ll gladly take the Red Devil over any Taxene drug…but there’s a lifetime maximum of Adriamycin.

So…good and bad.  I’m feeling tired but okay right now.  Certainly I do not have any dizziness, some weakness is normal.  I’m drinking a lot, and need to remember to continue to drink a lot.  I probably am not drinking enough, especially considering the diarrhea.  Let’s hope things improve this weekend.

Disappointing News – June 4, 2015

I had my usual blood draw today, and then an appointment with Dr. Priya.  While my blood counts are good, my potassium and magnesium levels are low.  I’m sure it’s due to all the diarrhea I had this week.  In addition, my blood pressure was extremely low – 88/61. In order to help with the blood pressure, I need to drink more fluids, but with the low potassium , more fluids can make the potassium even lower.  Dr. Priya wants to give my body a few more days to recover, so I won’t be receiving chemo tomorrow.  I will go to the infusion center, but to get fluids, potassium and magnesium.

I’ll have a blood draw on Monday, and if all is better, I can have chemo on Tuesday.  The delay is disappointing, but in the end, what’s important is my health.  The labs and low blood pressure explain why I’ve felt so weak and dizzy, with headaches.  So this weekend I need to try to get the diarrhea under control, drink plenty of fluids, and eat well.

Dr. Priya is going to order another breast MRI, to make sure that the chemo is reducing the cancer.  Why continue to go through this if the chemo isn’t having an effect?  I haven’t been able to feel the lump since the first treatment, though, so it will be interesting to see what the breast MRI will show this time around.

Here’s to hoping I have  a better weekend, and that the only delay in getting chemo is until Tuesday.

Cumulative Effects – June 2, 2015

Not much to update, except that the cumulative effects of the chemo are definitely being felt.  Sunday I couldn’t keep anything down – in either direction.  That meant the Monday I was feeling extremely weak. I went to work, but had to stay home today while I gathered my strength.  I was able to eat more today, and while I still have diarrhea, I no longer have nausea.  I feel better.  I will have to figure out a way to control the nausea for the few days after chemo.

I managed to get myself to my scheduled echo in the afternoon.  The echo checks that the chemo isn’t doing any damage to my heart.  It was painless and fairly quick.   I have an appointment with Dr. Priya on Thursday.  Sometime soon I hope to have a definitive answer on whether the Taxol rounds of chemo is going to be 10 or 12 weeks.

Onward!