WOOT! No More Taxol! – July 14, 2015

I met with Dr. Priya today, and I got the news I wanted:  NO MORE TAXOL!  She agreed with Dr. Colocci that 8 weeks of Taxol, in combination with the Taxotere I’d already received, is enough.  This means that I can move onto the next stage of my treatment, which is surgery.

As I also suspected, though, Dr. Priya does want me to receive one more round of Perjeta, so that I’ll have received 4 treatments.  So I’ll have that in a couple of weeks, along with Herceptin.  I’ll continue to receive Herceptin every 3 weeks from now until March/April, except for a few weeks off around my surgery.  All this means that the timing just might work out for my already booked vacation at the end of September, even if I need 2 surgeries to get clear margins.

I called Jennifer, the nurse educator, to give her the good news, and to get the process started for my surgery.  There are a lot of things to get lined up now.  And I suppose there might be decisions to make.  Originally I was opting for a “lump and lift” – a lumpectomy along with a breast lift of both breasts.  Now that there’s no tumor to remove, I’m not sure that a lump and lift is still a viable option.  I suppose I’ll have a whole new round of appointments soon with Dr. Ching and Dr. White, the plastic surgeon.  Regardless, I’m happy that I won’t need any more general chemo.

Last Friday, which as it turns out was my last general chemo infusion, I got the whole cocktail – Taxol, Perjeta, Herceptin, and my friend magnesium.  That made for another 7 hours at the infusion center.  I’m going to miss my long sessions at the center – I’ve gotten to know the nurses pretty well, and certainly the routine.  I’ll continue to visit the center, but my sessions should now be much, much, shorter.

As has been true for the past 3-4 weeks, I’ve been able to handle the side effects of the chemo much better.  I still have diarrhea, but it’s mostly under control.  Most importantly, I’ve managed to avoid nausea.  I really am convinced that drinking 30 oz of water first thing in the morning – before doing anything – has helped with the nausea.  They are quite serious when they said to drink 90 oz of fluids a day!  My advice to anyone getting chemo – drink that 90 oz!  For me, drinking 30 oz first thing in the morning jump started my intake for the day – I probably routinely drink 60 oz during the day, and the additional 30 just ensured that I was getting enough fluids.

On Saturday I went with 3 friends on a “yarn crawl” – think pub crawl only one visits various yarn stores rather than pubs.  I spent far too much on yarn that I don’t “need” but had a ton of fun!  I can’t wait to go on another one!  And the organizer is thinking of organizing a weekend retreat on the coast, complete with private classes.  I’m all over that!

This is a very big week at work for me…we go live tomorrow with a new database system.  A 2 year project, I could not have done it without the fantastic people with whom I work.  Truly, I am blessed, both professionally and personally –  today is my anniversary!  Happy 30th anniversary, sweetie!

The End in Sight? – July 6, 2015

Last Tuesday I had an appointment with Dr. Ching, my breast surgeon.  She gave me a big hug and said that she knew I’d been through a lot.  We discussed the events still coming up for me:  the database conversion on July 15; the Institute I’m chairing the first week of August in Boston; and my vacation at the end of September.  We discussed all the various options and permutations of what can happen.  She reminded me that there’s a possibility that I will need 2 surgeries:  during the first surgery she will remove what the tumor area and hope to get clear margins, as well as look at my lymph nodes.  If the pathology shows that we don’t have clear margins, then a second surgery will be done – as quickly as 2 weeks after the first surgery.  I’d forgotten about the possibility of the second surgery; that complicates the timing even more.  Nothing can really be decided about when my surgery will be, though, until we know when my chemotherapy will end.  I told Dr. Ching that I’m a bit confused about all that:  Dr. Priya had told me she was considering 10 weeks of Taxol, but we hadn’t had a chance to discuss that recently.  She’s out of the office until July 13, and while I had an appointment with an oncologist the next day, Dr. Ching correctly surmised that Dr. Colocci would not want to make a final decision about how many more treatments I’ll have with Dr. Priya’s imminent return.

I have an appointment with an oncologist every three weeks, and met with Dr. Colocci this time.   We went over all the usual things, mainly how I’ve been feeling.  She reduced the amount of Taxol because of the neuropathy in my fingers and toes.  I then told her that I was unsure how many more treatments I am to receive.  She said that because my tumor is gone, and because I had 2 rounds of Taxotere, that she believed that 8 weeks of Taxol is enough, but that Dr. Priya had to make the final decision.  This Friday will be my 8th treatment of Taxol, and so Dr. Colocci said that I was to insist upon getting an appointment with Dr. Priya Monday or Tuesday, so that if need be, we can cancel my infusion appointment for the 17th.

It’s a bit mind boggling to think that after all this time – five months – that I could be done with chemo aside from Herceptin.  I have no idea how Perjeta plays into this (i.e., how many treatments of Perjeta will Dr. Priya like me to have?). but I am going to push like hell to be done with chemo as of this Friday.  Dr. Priya did not know the results of my 2nd breast MRI, so I’m really hoping that because the tumor is gone, that I’ve had quite enough chemo.  Keep your fingers, toes and paws crossed!

Speaking of paws, after my infusion on Thursday, Ted and I left for Auburn on our way to Elko, NV to deliver a cat to her forever home.  We then spent the following night in Reno, and availed ourselves of a couple of buffets.  I don’t know whether it what was I ate at the buffets, or whether this round of chemo was easier, but I haven’t had the problems with diarrhea this week, and I feel pretty good.  My blood pressure is up – almost to the point where I might need to go back on my high blood pressure meds.  I do think that drinking 30 oz of water first thing in the morning has really helped.  Nothing really helps the mess that my nails are (I’ve now lost 4 toenails and 4 fingernails), but I haven’t gotten other symptoms such as mouth sores, so I’ll take it.

This Friday I’m pretty sure I’ll get Taxol, Perjeta and Herceptin, and no doubt magnesium.  I hope all goes well!

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.

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!

All done with #4! – May 1, 2015

Woot!  Today was the 4th and last infusion of AC (Adriamycin & Cytoxan)!  It went really well; as has been true for the last few infusions, I also needed magnesium, so I was in the infusion center for another 6 hours or so.  Adriamycin is the “red koolaid” drug that I’ve been posting on Facebook – such a pretty red color.  It’s interesting to note that there is a lifetime maximum that I can receive of Adriamycin…just think how toxic it much be! Hopefully lifesaving toxic!

So how have I been doing?  It’s so clear that within 24-36 hours after coming off Decadron (steroid) and Zofran (anti-nausea) I have 2-3 bad days.  I was able to work through most of those days this last round.  There was only one day that I really could not deal with going to work, as I was feeling just all around crappy.  Not exactly nauseous, but feeling really icky and weak.  Already not a morning person, the chemo makes mornings even tougher.  Between the icky stomach and weakness, mornings are not my favorite time of day for 4-5 days.  The weakness has persisted some, but Dr. Priya that’s expected – the cumulative effect of the chemo.  I didn’t have diarrhea this time around (yay!) and ate much more normally than in previous rounds.  I mean I had vegetables!  Part of the success this time was that I am taking iron, which can cause constipation, so I think the effect cancelled each other out.

The worst effects have been neuropathy in my fingers and toes, and canker sores at the corners of my mouth.  I get canker sores at the corners of my mouth even when not undergoing chemo; probably a herpes virus whose effects are exacerbated by lack of leafy green vegetables in my diet coupled with stress.  However, the chemo also causes sores, usually mouth sores (in the mouth as opposed to externally), but Dr. Priya wasn’t surprised and suggested some topicals I can try in addition to my usual to try to help the pain.  For the neuropathy, Dr. Priya suggested taking L-glutamine.  She says it helps 50% of patients with neuropathy, so it’s worth a shot.  I had to pick it up at a GNC store-wow that was an eye opener.  The stuff they sell in there is not in my realm of experience.  On top of that, the dosage on the powder I got is 5000 mg, and Dr. Priya wants me to take 10!  So just a few grains, I guess?  The neuropathy isn’t terrible:  mainly in the tips of my fingers and toes, it does not prevent me from walking, and it usually mostly goes away on my right hand by the next infusion.  It’s never disappeared in my left hand since the first treatment.

So what’s next?  I leave for Charleston, SC on Sunday night and am there until Thursday.  I hope I can handle being at this conference and the effects of chemo at the same time.  At least I’m not presenting!  I’ll have my first treatment of the second phase of this protocol on May 15. The next protocol is Taxol, Herceptin and Perjeta.  Since Taxol is in the family as Taxotere, I’m a little concerned about the side effects.  I’m hoping that since the dose is lower and it’s a different drug that I won’t have the same problems.   I guess we’ll just see what happens.

During today’s treatment I had a craving for Jamba Juice; through the magic of social media, my friend Michael brought one.  My hero!  Then I had a hankering for pho, and poof! through the magic of social media, 7 of us had dinner tonight.  What serendipity!  It was great to have dinner with good friends, and I had a great time.  Life is good.