#3 Down! – April 17, 2015

I had my 3rd infusion of the new protocol today, and as with the other two, it went just fine. I was done with the premeds and chemo in three hours, but then had another three hours for more magnesium.  My magnesium was better, but still low.

Before the infusion, though, I had an appointment with Dr. Priya.  It was so good to see her again.  She told me that everyone loves me, or at least my attitude.  She said that where the clinic is located…well, patients tend to complain about everything, even when they don’t have anything to complain about.  Me, on the other hand, had every right to complain about everything and never did.  She asked me how I did it!  That was nice to hear.

I asked Dr. Priya about the length of the second part of the protocol (Taxol, Herceptin and Perjeta).  The reason I’m concerned about when I finish chemo is that affects when I can have my surgery.  And the reason I want to have my surgery as close to the week of August 10 as possible is that I’ve scheduled some recovery time in Maui.  Someone was kind enough to give me time at a condo, and someone else upgraded me to first class.  (Yes, I’m extremely blessed)  Moving the time in Maui would be possible, but not without a lot of hassle and additional costs. Dr. Priya said I would be fine to go to Maui in my third work of post-surgery recovery, but then we also discussed the length of the Taxol protocol.  I wondered if the 2nd part of the new protocol could be shorted:  I’d received 2 doses of Herceptin, and 1 of Perjeta.  So was it the Taxol of which I needed 12 weeks?  And my questioning was confirmed when I spoke with Jennifer Glover, the nurse educator who works with Dr. Ching, my breast surgeon.  I asked her whether I really needed to wait 4 weeks after chemo to have surgery (Dr. Ching insists) because I had this vacation planned. Jennifer was surprised that I was going to have 12 weeks of Taxol, and that confirmed my suspicion.  Dr. Priya said that 1 dose of Taxotere is equivalent to 3 weeks of Taxol, so it’s possible that we could reduce the Taxol by 6 weeks!  She also said that I could have Taxol after surgery if needed, and that this is where it’s the art of treatment comes in. I can appreciate that.  She said that she’d discuss it with the tumor board and let me know. We also talked about Perjeta – we’re not sure if the Perjeta or the Taxotere was what gave me such bad diarrhea.  I said that since I was approved for it, I’m game to have it again.  After all, I’m also much better about what I eat to avoid, or at least minimize, any diarrhea. So we’ll do that.

Speaking of diarrhea, I haven’t had any problems with it for a couple of weeks.  I was able to enjoy thoroughly New Orleans cuisine, and that was the blessing behind the tooth infection and extraction.  I love New Orleans:  the only bummer was that it rained pretty much the entire time I was there.  I was able to carve out some time to go the Quarter Stitch, a fantastic yarn store in the Quarter, and go to Cafe du Monde along with Emeril’s, Cochon and Clancy’s.  Oh, and fantastic breakfast at the Ruby Slipper.  And yes, I did attend sessions at the conference, which was why I was in New Orleans in the first place.

So all in all, things are going pretty well!

One Day at a Time – March 8, 2015

What a difference a few days makes.  Since Monday, I have been feeling so much better.  No more nausea (and I’m not taking any anti-nausea drugs), and the diarrhea stopped after Tuesday.  I’ve been slowly expanding what I’ve been eating, and discovered that egg and tuna salads sit well with me.  An easy way for me to get protein, so I’m eating a lot of egg or tuna salad sandwiches.  I had sushi and sashimi last night, and so far so good.  What I’ve discovered is that I’ve lost my salt taste buds.  So nothing tastes salty to me.  Ironic, because I’m low in all my salt values and continue to take potassium pills.  I can salt my food liberally but I can’t taste it.  I can taste the soy flavoring, but not the salt itself.  It’s very strange.  All my other taste buds seem intact (sweet, sour, bitter).  Sour chewy Sweetarts, you are my friend.

I went to work this week, and by Thursday I was TIRED.  I was in bed by 9:00 pm that night, and asleep by 9:30.  I’m normally a person who gets between 4-5 hours a sleep a night, going to bed after midnight or 1 am routinely.  I’ve been going to bed earlier and getting at least 6 hours of sleep a night since I started chemo, and I’ve not had any sleeping problems except for perhaps 1 or 2 nights.  So for me to be asleep before 10 is highly unusual…but perhaps not now.  As I said to my sister the other day, nothing about this year is normal.

Dr. K prescribed antibiotics on Friday.  I think she remains concerned that my port continues to ooze some pus and just won’t heal.  That combined with the fact that my face basically got cooked from the inside – so much so that my high cheeks blistered and started oozing made Dr. K want to prevent any infections.  I also gave myself a bloody nose on Friday.  There I was at work with my head tilted back to stop the bleeding.  How did I get the bloody nose?  Blowing my nose!  I definitely think I caught a little cold or something – the post nasal drop has been non-stop.

The newest fun time?  My feet hurt, particularly my heels.  I thought at first it was due to my wearing pumps to work without wearing any pantyhose, but that’s not the case.  My heels are hot, and hurt to touch, which makes walking very painful.  I called the on-call oncologist this morning…and he consulted with Dr. K.  They both think it’s still due to the Taxotere, and told me to treat it symptomatically.  Ice the feet, take NSAIDs and anti-histamines.  I hope the pain resolves itself today and tonight – I leave for a business trip tomorrow and I don’t relish having to walk through airports and long hotel corridors with feet which hurt.  Not to mention that at conferences you do a lot of standing on your feet.

The second newest fun time?  My employer reduced my last 2 paychecks, but I received only 1 check from The Hartford, and it’s for only 1/4 of what is missing from my paycheck.  It’s very possible I don’t have enough to pay my bills this week!  I was not expecting this, because apparently I was spoiled by my last employer.  The other times I’ve taken disability, my former employer continued to pay me my full salary (as long as I had enough leave to cover, which I do), and obviously they worked out getting reimbursed by the disability insurance company. My current employer apparently likes to make things hard on the employee – never mind that this is completely adding to any stress that an employee may be feeling by being on disability in the first place.  I contacted Payroll on Wednesday, and received a reply that Payroll only processes what Benefits tells them to process, and that Benefits would need to contact me.  I haven’t heard from Benefits yet, so guess what my first call tomorrow will be?  I can’t say I’m happy about this situation, although I know that this too, shall pass.

Other than that, it’s a glorious weekend here in northern CA.  I got out to watch some Stanford baseball yesterday, and am headed there today too.  Nothing like a little baseball in the sun to lift one’s spirits.

I’m an East Coast girl – March 2, 2015

I won’t lie.  The weeks post-chemo suck.  With the sore throat, vomiting and ever present diarrhea, I’ve lost 15 pounds since I started chemo.  Not the way I’d recommend losing weight.  In addition, the scar from my port was infected; I got pus out of it on Friday, and then my cheeks, which are normally a little flushed, have been very flushed since the chemo treatment and never went away.  It’s like I’ve had a bunch of drinks and have massive Asian glow, or that I forgot to put on sunscreen and went skiing.  My cheeks are so flushed that the skin has started peeling.  And lastly, I took my blood pressure yesterday and it was 90/65, with a pulse of 96.  So I let my doc know all of this stuff and she wanted me to come in today for a blood draw and a visit with her.  After the first chemo treatment, my cheeks were a little flushed for a few days, maybe almost a week, but then they went back to what is normal for me.

Dr. K took one look at me and said, Oh my God, we have to do something else.  So after talking with her, and talking with her colleagues, she’s completely changing my chemo protocol.  She said that if I lived on the east coast, this protocol which she is starting me on would have been what I would have been on in the first place.  She’s convinced that the Taxotere is what’s causing most of my problems; I’m in the less than 5% of patients who exhibit these symptoms. She called this protocol the Harvard protocol; the one which uses the Taxotere is the UCLA protocol, and is used on the west coast.  I got a good chuckle out of that.  No rival Pac-12 protocols to be tolerated here, I guess – sorry Nancy S and Nancy D!

So here it is.  I’ll be keeping my appointment on March 13 for a blood draw, visit with Dr. K and chemo, but my infusion will be much shorter, only about 2.5 hours.  Here is the new chemo protocol:

Adriamycin and Cytoxan every two weeks for 4 treatments

followed by

Taxol, Herceptin and Perjeta once a week for 12 treatments

followed by Herceptin every 3 weeks for 1 year (this does not change)

She then said that my high pulse and low blood pressure is because I’m dehydrated and wanted me to stay for fluids with potassium, and told me to take 40 meqs of potassium every day until March 13.  The fluids took 2.5 hours to receive today, so that was unexpected, but equally unexpected was having Jonrie be able to visit with me! She brought me a great gift plus some awesome treats.  (Thanks, Jonrie!)  I’ll continue to take Zofran as needed; I’m taking it every 6 hours and thus far today I’m okay – I haven’t even felt the need to vomit yet today, so keep your fingers crossed.

What this new protocol means is that there is no more argument between my oncologists and my breast surgeon.  I’ll finish the 2 new treatments in mid-July, have 3 weeks off,  then have surgery the week of August 10.  Everything has fallen into place.  I can only hope that these new drugs don’t cause the same reactions as the first protocol have.  Dr. K said more than once that she appreciates having a patient who can go with the flow so easily and so intelligent as to grasp what is going on.  She also said she doesn’t want to give me back to Dr. Priya, which I found very funny!

I was getting a little dragged down, to be honest, with the prospect of non-stop diarrhea for another 12 weeks, coupled with these cheeks which look like I’m a alcoholic.  So I’m very hopeful that this new protocol, while more bothersome because of all the infusions, will, in the end, be easier on my body.  Here’s to science; to east vs west coast protocols; and a medical staff who’s willing to take my discomfort seriously. I’m blessed.

January 30, 2015

A mellow day.  I felt mostly okay, so I did some work and relaxed.  I had my Neulasta shot around 4:30.  The nurse suggested having it in my abdomen, and aside from a little discomfort when the drug first went in, it was fine.  It was only 6 mls, but it was very slowly injected.  I was asked to stay around for 20 minutes because it was the first time I’ve had the shot.  Everything was fine so I left.  On the way home, and continuing now, I feel occasional slight twinges of pain – like in my hip after too much salsa dancing. The injection nurse mentioned Claritin, so I’m glad I started it.

I got a notice that there was a change to my online health account.  I checked, and the bill for yesterday’s infusion was a whopping $49,779!  The Perjeta alone was $26K+, so Dr. Priya massively underestimated the cost.

Perhaps it’s all the dairy I’ve had, but the Taxotere is not making me constipated at all! I’m having the exact opposite reaction, in fact.  I don’t know what’s worse. I also haven’t consumed the 3 quarts of liquid, so I’d better get going because of diarrhea. The last thing I need is to get dehydrated.

All in all, not a bad day.  I’m okay with that.

January 29, 2015

First Chemo Treatment!

It was a long day, a lot longer than I thought.  We got there on time for an 8:45 appointment.  Things got going with the puncture of the port – which is through the skin, obviously.  Some infusion centers spray a little novocaine or lidocaine to numb the port area, but not at PAMF.  The puncture was actually pretty bad, and while I adjusted to it, I was surprised at how much it hurt.  I’m no wimp, and I’ve been poked and punctured a lot – donating blood, blood tests, IVs for 5 major surgeries and sedation procedures – but this hurt.  I’ve now got a numbing cream, EMLA, ($45 later) to put on about 30 minutes before my next port puncture.

The first thing to go in was saline to flush the port.  That was for about 10 minutes, and then the pre-meds – no, not undergraduate students, but Decadron (steroid) and Zofran (anti-nausea) which took about 20 minutes.  So my first drug, Perjeta, didn’t get started until about 9:45.  That infusion took 60 minutes, which went just fine.  There was a 30 minute break, and then the second drug Herceptin, got started.  This first time, Herceptin was a 90 minute infusion.  The next chemo treatment the Herceptin will be 60 minutes, and then 30 minutes after that each time – which is good because that’s the targeted chemo drug that I will need to have for 52 weeks.

Each infusion is given mixed with a saline solution; that with all the liquid I’m supposed to drink meant that I went to bathroom a lot!  and I really should have taken a potty break between the Herceptin and the Taxotere!  Taxotere is the drug that the nurses watch very carefully while it’s being administered.  It was started right away, first with a saline flush, then a slow drip of 50 mls over 30 minutes, then increased to 100 mls for 30 minutes, then the last 220 mls or so over 45 minutes.  I was told to hold a cup of ice for possible neuropathy and asked if I wanted to put my feet in a cold bath to help with possible neuropathy, and then asked to eat ice chips.  The nurses asked if I was getting itchy or a rash, and whether I had any back pain repeatedly.  I had none of those symptoms, but by the end my face was flushed, as if I’d had a drink.  So they took my vitals, and decided to give me a saline flush for 30 minutes, then retake my vitals.  My vitals after the flush were more back to what they’d been all day (although the vitals right after the Taxotere weren’t terrible).  So it was decided that my face was flushed more likely from the steroid than the Taxotere.

After a quick break, the final drug of the day was given, Carboplatin.  Only a 30 minute infusion, it seemed to finish in no time flat.  Then it was about 30 mls of saline flush for the port, then Heparin in the port to prevent clotting, the needle removed, and I was pretty much good to go – at 4:45!  8 hours in the infusion center.  Wow.

Well, I was sort of good to go. I had to make an appointment to get a Neulasta shot for tomorrow. Neulasta stimulates the bone marrow, and can cause extreme bone pain. Fortunately, my friend Lori pointed me to recent research about taking Claritin with Neulasta, so I’m going to be proactive and take Claritin.  I’d rather avoid bone pain, thank you very much.

I also had to make appointments for my next chemo treatment, which isn’t as easy as you might think.  I have to have a blood draw at least 2 hours before a doctor’s appointment, because I’m choosing to have the blood draw through my port (although if EMLA doesn’t work, I may choose to having a regular blood draw) and generally the doctor’s appointment is the day before chemo.  And because it was suggested that Neulasta be given by the injection specialist in the infusion center, I’m going to have chemo on Thursdays, rather than Fridays, if I can.  Otherwise I have to receive the Neulasta shot at Urgent Care, and most likely not by an injection expert.  Neulasta is pretty thick and is best given in a really fleshy part of the body (my arms are way fleshy, so I think I’ll spare my butt).  So I’ll have doctor’s appointment on Wednesdays, chemo infusion on Thursday, and work from home on Friday with time for a Neulasta shot.  I was able to do some work today, and some knitting, but my sister and I talked a bunch, which was great.  Thank you notes and other work will have to wait until tomorrow.

The only thing that was disappointing today was I learned that Dr. Priya is on medical leave from February 9 until April 13, which means I won’t see her until right before my 5th treatment!  I’m so sad.  I just hope Dr. Kushlan is just as good.

I finally wrote out all the drugs and supplements I need to take from Day 0 through Day 7, because they all have times to be taken and different dosages.  I could probably keep it all straight in my mind, but it helped to write it all out.

I have so much support from all over, but I have to give kudos to my sisters for today. Lucy picked me up this morning and Chris met us at Oncology.  Lucy stayed for about an hour and then had to go, but Chris stayed until about 3:15.  Lucy came back around 3:30 until the end, and then took me to run errands and home.  It was great to have my sisters there for this first session.  I would have been fine, but it was awesome to have them there.  And of course, Ted was home with dinner and just made me cherry-mango popsicles, so the awesomeness continues.

Pretty long day, and I feel as if I should head to bed, but right now I’ve got Loa purring on my lap and the Sharks are beating the crap out of the Ducks, so life is good!