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.

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.

New Chemo Protocol Started – March 14, 2015

Yesterday I received my new chemo protocol of Adriamycin and Cytoxan.  I’ll get 3 more infusions of these 2 chemo drugs over the next 7 weeks, and then Taxol, Herceptin and Perjeta over 12 weeks, once a week.  Let’s concentrate on these two drugs for now.

I arrived early so that I could receive the education about these new drugs.  My sister Lucy was with me; it’s always great to have another set of ears.  Adriamycin (generic name Doxorubicin) is an antitumor antibiotic.  It’s a vesicant, a chemical that causes extensive tissue damage and blistering if it escapes from the vein.  So it’s given via “push” – the nurse injects it into my port rather than by drip.  The other interesting thing is that the drug is a bright red, and for the next 24 hours my urine will be anywhere from orange to red!  Sort of like eating an entire can of beets…

Cytoxan (generic name cyclophosphamide) is an alkylating agent, most active in the resting phase of the cell.  Carboplatin, which was part of my first chemo protocol is the same type of agent.  Cytoxan is a mustard gas derivative; Carboplatin is a metal salt. The interesting thing about Cytoxan is that it used to be given over 2 hours, then 90 minutes, then an hour, and Velia said that it would be given over 30 minutes.  She said that one of the effects of giving it over 30 minutes is that I could feel sinus pressure and the start of a headache, and if that was the case, that I should ask the nurse to slow down the drip to go over 1 hour.  Lucy was thinking that we should just do the infusion over an hour.  Well, when it came time to the infusion, the nurse said that it would be given over an hour – that their experience is that the patients tolerated the infusion much better when given over an hour, so they’re going back to an hour rather than 30 minutes.

Now that I’ve had time to read the reams of information about these 2 new drugs, one of the slightly distressing things about both of them is a slight risk of developing a blood cancer such as leukemia.  Feels like I can’t win for losing.  But I really can’t worry about it right now.

Dr. K is still really concerned about my potassium level, and this time she wanted to check my magnesium level too.  Still related to my diarrhea issues, my potassium was fine, but my magnesium was incredibly low.  So after the chemo drugs were given, which didn’t take that long, I was given 3 gr of magnesium – which took 3 hours!  So while my infusion started early (9 am) it didn’t end until 3 pm.  Magnesium helps with regulating muscle and nerve function, blood sugar levels, and blood pressure and making protein, bone, and DNA which is important! The premeds included Decadron (a steroid) and Zofran (anti-nausea drug), both of which were given the first 2 treatments as well, but this time Dr. K added Emend, a long acting anti-nausea drug.  I think she REALLY wants me to have a nausea-free couple of weeks.  Now I can only hope that I also have a diarrhea-free couple of weeks, too!

In addition to the possible diarrhea and nausea, these set of drugs can cause mouth sores.  The first regimen does too, but apparently not as much as this set.  I was prescribed a compounded mouthwash to help with the mouth sores.  Obviously, aside from the pain from mouth sores the concern is that it makes it hard to eat, and I have to eat.  And from the Cytoxan, everything may taste metallic, even water.  So flavored waters, water enhancers, G2 will be my friends.  And from the Adriamycin, darkened nail beds.  I guess that’s better than nails falling off…

I got a visit during my infusion from my niece Alex, who’s home for a few days for spring break, and my friend and former colleague Lorrie arrived around 9:30 and stayed with me for the entire infusion.  It was great to spend time with her, and she was gracious enough to buy me lunch (I didn’t think I’d be at the infusion center as long as I was, so I hadn’t packed a lunch) and take me home.  I have such great support locally, and virtually across the country (and world).  Thank you to each and every one of you who have reached out in whatever way you have – cards, gifts, emails, Facebook posts, visits – all of your tremendous support is what helps me get through this very long haul.  With your help, I’ll get through this!  Onward!

Wow, that was awful. – February 17, 2015

I actually went to work today, which felt great.  I’ve missed seeing all my colleagues and while I barely had a minute to relax, it was wonderful.  Working while going through this was what I’ve wanted all along, so I was so happy to go to work.

My day was compressed because I had to leave early to get a blood draw.  I chose to have the blood draw through my port, which meant only a nurse who’s been trained on using the port can do the blood draw, not just any phlebotomist.  The blood draw went fine, and while I was there I finally met Margaret, the diarrhea nurse, and she got Velia too.  They both apologized again for all that I went through, and that they should have brought in Dr. K sooner.  I appreciate the apology, I just wish it hadn’t happened.

I got a call around 6 pm from the on call oncologist, who said the lab called him to alert him to a very low potassium level in my results.  He called in a prescription for potassium, and when I went to pick it up, the pharmacist warned me that it could cause me to gag while drinking it. Apparently the doctor called in a prescription for the liquid form of potassium, even though there’s a pill form available.  Let me tell you, the pharmacist was not wrong (my niece the pharmacist would chime in that of course the pharmacist was right).  That potassium is the nastiest, vilest stuff I’ve ever had.  Nastier than the opium, and nastier than the drink to prepare one for a colonoscopy.  I’d take either of those over that potassium and how lovely, I have 3 more days of it.  Ick ack pitooey!

Tomorrow I have an appointment with Dr. K.  Hopefully despite my low potassium and some other low values I can still have my chemo treatment on Thursday.   Wish me luck!