Test results

My liver ultrasound revealed no change -- the liver tumors are neither bigger nor smaller. That means the Adriamycin appears not to have worked. Stable isn't necessarily bad news, but I have options.

I am going to have a consult with another oncologist my doctor respects to see if there is a clinical trial appropriate for me. I will likely see either  Georgiana K Ellis orJulie R Gralow at Seattle Cancer Care Alliance.

I can always go back on Abraxane, the first chemo I tried in May-June. We don't really know how effective it was, since my first scan revealed the presence of liver mets for the first time.

In the meantime both Dr G and I knew about the recent FDA approval of recent FDA approval of high-dose Faslodex (fulvestrant) for metastatic breast cancer, so I had two 250 mg intramuscular shots in my tush this afternoon. (I had Faslodex once for only a few months when it appeared to cause additional edema. Of course, the edema might have been unrelated. Either way, it's a risk I am prepared to take for an effective treatment.)

I have a follow up appointment with Dr G in a month, unless something warrants coming in earlier.

For now this means no more chemo! I can recover from the last dose of Adriamycin and maybe my hair will grow back more quickly.

Day 3 of Adriamycin #5

Things are so far, so good - with the exception that my mouth sores are multiplying. I called Dr G's office yesterday to report another tender spot. Nurse J called back to say he wanted me to start acyclovir (an anti-viral medication) five times a day, in addition to the GelClair mouth rinse three times a day and clotrimazole troches (lozenges) five times a day. Not to mention gargling with salt water every hour or so.

The biggest news is that Dr G wants me to have three weeks of treatment followed by a week off. Since this past Monday was the third in a row, no treatment for me next week. Woohoo!

I hope that the acyclovir will keep the mouth sores at bay and that the rest of this week will go well. I am glad Dr G is being cautious about not exposing me to increased risk for infection etc. by treating me three weeks on/one week off. (Last year's four-in-a-row of 5FU put me in the hospital for almost two weeks. Read the posts from 4/27/09 - 5/12/09, or search on the Swedish Medical Center tag if you want details.)

So far the Adriamycin has been remarkably tolerable. Let's hope for effective! My next scan is on Friday, and I get the results next week.

Adriamycin #4

I had such a smooth experience with the Swedish Cancer Institute this morning. Although it was hard to get up so early, I was there by 8:35 AM despite traffic, went to the lab right away and was seated in a chemo chair, ready to get hooked up, an hour later.

I was the first patient in the infusion center, and so had the undivided attention of my nurse. The pharmacy provided all the drugs quickly and the whole experience ended around 11 AM. My friend G dropped in for a chat, so I was well-entertained. The Decadron has me talking quite a bit, but I am still ready for a nap.

Here's to Adriamycin kicking some serious cancer butt!

Day 3 of Adriamycin #3

Even with the reduced dose of steroids at Monday's chemo, I have had a bounce of energy for the past few days. I also got some good sleep, with the help of Ativan. I will try to taper off it tonight so that I can start up again next Monday.

Because it was a lovely evening, we ate dinner in the sukkah last night. Today, of course, it's raining, and that might have been our last meal in the sukkah for a few days. It was just us, but I made a delicious roast chicken with zucchini strips marinated in preserved lemon, garlic, and salt, and tossed with pine nuts. We made kiddush over juice made from our very small grape harvest, barely half a glass each.

If anyone has tips on how to improve the quantity of our grapes, I am open for tips. I only know we have sweet, green grapes, not the type. The arbor is full of leaves and vines, but we got very little fruit this year. (Had a bumper crop last year.)

I did a little cooking today since I am bringing a meal to a sick family (zucchini minestrone and bread). Plus I started some cookie dough that can be frozen for a few days and baked up fresh, and made some spiced nuts.

I guess I have more energy than I realized!

No chemo tuday

Dr G gave me today off chemo, at my request. I have big plans for Yom Kippur -- I have been asked to give the fundraising appeal on Friday night and also to lead Yizkor (memorial service) on Saturday. I love that he listens to me!

I checked in with Dr G about my latest symptoms. My compulsive touching of my fingertips (they're not numb, just sensitive) is probably residual hand-foot syndrome. Same with my more-than-usually sensitive toes. My vision has been a bit blurred, not enough to make it hard to drive, but enough to make it difficult to read. That's probably due to the steroids, and Dr G has agreed to reduce the dose next Monday. He wants to see me in a month, continuing the Adriamycin weekly, and have a liver ultrasound before my next appointment.

Dr G also sang to me today. (We were sharing favorite high holiday music.) He does this frequently with his patients, and told me about an elderly man who could not receive anesthetic for a procedure. So Dr G sang, and they sang duets. What a doc!

Adriamycin #2

Today's chemo adventure was more complicated than ever before.

It started at 3:30 PM when I arrived at the Swedish Cancer Institute. Dr G had written the orders for yesterday. The Ca Institute doesn't give chemo on holiday Mondays. We knew this a week ago, and had scheduled an appointment for Tuesday. But did anyone suggest Dr G change the date of the orders? No. (Personally, it never occurred to me that orders were dated.)

After waiting for more than an hour and a half, Dr G amended the orders in the online system. I went downstairs to the lab for a blood draw. The nurse could not get blood return from my port. I raised my arm, I coughed, I turned from side to side -- nothing.

She took me back to a spot where I could lie down. Same thing -- cough, raise arm, turn to left side, turn to right side. Nothing. At this point I suggested the nurse remove this needle and try accessing my port a second time. The same nothing happened again.

However, they have a back up plan. A phlebotomist can draw blood from my elbow to test, then I can receive alteplase to remove a suspected fibrin sheath. (The nurse explains this is when a catheter, such as my port-o-cath, becomes encased in a fibrotic sheath, which may harbor bacteria and make it difficult to draw blood from the line). The alteplase is a good thing, since it will clear out my port and Adriamycin can only be given through a port and not through an IV line. However, it takes at least 30 minutes for the alteplase to be effective. The tech is able to get blood on the first poke (and I only allow one).

At 5:30 I go back upstairs to get the alteplase. My friend S and I take a break and I buy us dinner (Japanese-style crepes at Crepan; mine spicy tuna, hard-boiled egg and lettuce, hers mushrooms, basil and cheese). By 6:15 we are back in the Ca Institute.

We wait for the nurse to test the port. Voila! She can get blood return. The nurse gives me the IV Emend, Aloxi and Decadron over 45 minutes. Then she uses the IV push technique to give me the Adriamycin (takes about 10 minutes). I am sucking on ice to prevent mouth sores and talking a mile a minute from the Decadron. We leave the Ca Institute at 7:45 PM. I've been there more than four hours altogether.

I am hopped up on Decadron, would still be talking a mile a minute if I wasn't typing so speedily. I think I will suck on a popsicle to help prevent more mouth sores, put on my jammies, turn on the tube and try to relax. Maybe I will be able to sleep tonight. Maybe.

Feelin' groovy

Well, I'm not really sure what that means, but I seem to feel okay these days. The first treatment of Adriamycin has been tolerable. My new compression sleeve gizmo is working well, although it can be kind of hot to wear. As my friend I points out, it's like wearing a very long oven mitt.

I haven't been sleeping well, even after taking some Ativan at bedtime. It may be that I am too used to the 0.5 mg dose I take for it to be effective. It may be the hot flashes that wake me up. Last night's 3 AM restlessness turned into the dog waking up and deciding to get out of bed, then woofing to be let outdoors. Rik was sound asleep, so I got up and dragged Bobka back to his dog bed. We both slept some more, but I keep awakening with hot flashes. I stayed in bed until past 10 AM this morning.

The good news is that I have a pile of ironing and some silver polishing to do, and I have enough energy to do both tasks.

More chemo tomorrow.

Day three post-Adriamycin

My personal engine has been revving practically non-stop since receiving 12 mg of Decadron (a steroid) before Monday's chemo. I slept fitfully on Monday night, had plenty of energy on Tuesday to attend four hours' worth of meetings and talk on the phone all evening. I slept better on Tuesday night but woke at 3 AM and was unable to get back to sleep until about 7 AM, then slept until past 9:00. I will report this to Dr G and ask if he will consider reducing the steroid dose back to 8 mg, which is what I received with the Doxil.

I expect some kind of a crash later in the week as the steroids and the long-acting anti-nausea med wear off. I will take the third of three doses of Emend later this morning. If I experience any nausea tomorrow or later, I do have plenty of other anti-nausea meds, plus ginger ale and ginger tea, on hand. I've started carrying the anti-nausea meds and ginger tea bags in my purse again, just in case.

In the meantime it's been pleasant but weird to feel a more normal amount of energy. I have been talking and typing extra fast, although chemo brain still insinuates itself on occasion when I can't think of the specific word I need.

The sun is out after a whole day of cold and rain yesterday, I took a walk with Bobka the Dogka, and hope to have lunch with a friend. That's a good day.

First Adriamycin

Today was my first treatment of regular Adriamycin (doxorubicin -- I've been spelling it wrong. As a grade school champion speller, this distresses me.)

Everything went much faster than I thought it would. I received pre-meds of 12 mg Decadron (a steroid which might cause some insomnia tonight), long-lasting anti-nausea drug Emend and a long-lasting version of the anti-nausea drug similar to Zofran called Aloxi (palonosetron), all via infusion. This took about 45 minutes.

The Adria itself is given via IV "push." Instead of being attached to my infusion pump, the nurse gowns and gloves up, spreads a sterile field over the little table on the side of the chemo chair, and slowly, a few milliliters at a time, pushes the injector of the tube containing the Adria through tubing connected to my port. It took her about 20 minutes, during which time Rik and I chatted with a friend. Then the nurse de-accessed my port and I was cleared to leave. I felt fine all this time -- not talking at the speed of light from the Decadron, and not woozy from the anti-nausea drugs.

Of course we had to stop at the pharmacy to pick up the second and third doses of the Emend, where we learned that my doctor had not requested a pre-authorization from Pacificare, my health insurance company. The pharmacist filled the script anyway, asking that we pay the co-pay and that if Pacificare refused to pay up, we would pay the remaining balance. Since I need this drug because I am allergic to the other anti-nausea pre-meds, I was happy to do so. I'll get on the phone with Dr G's office and Pacificare tomorrow to straighten things out.

Then we were hungry, so we went to Cafe Presse for a delicious Parisian style lunch. Rik had three prawns served over Moroccan couscous with cantaloupe, I had a salad of zucchini, tomatoes and red onion with feta cheese, we shared frites and their delicious baguette. I was supposed to help prevent mouth sores by eating and drinking cold things, so I ordered some incredible house-made chocolate ice cream for dessert. It was too much to eat, and we brought home the remaining scoop.

Later, while Rik ran errands, I sat in the sun reading, too a short nap, and generally relaxed. I feel fine so far, no doubt due to all the drugs. Rik brought me home some juice-only popsicles, and I think I'll spend the evening enjoying them as I ice my mouth.

More chemo

Today we saw Seattle's best oncologist and got the results of my recent ultrasound and bone scan.

The ultrasound indicated five liver lesions. This is a good baseline number for testing the chemo's effectiveness in the future. The CT scan I had in July indicated seven liver lesions. Since these two types of scans show different information, it's not possible to say for certain that two of the seven liver lesions are gone.

The bone scan revealed increased activity on my many sites of bone metastases, as compared with the last bone scan taken at this facility in 2005. There are mets in my skull, cervical spine, scapulae, humeri, forearm, thoracic spine, ribs, lumbar spine, sacrum, pelvis and femurs. (Apparently I light up like a Christmas tree.) However, there don't appear to be any new spots of disease, and Dr G would not recommend radiation at this time. He doe not think I am in danger of a fracture.

My tumor markers have consistently decreased since starting chemo in May, so something has been working.

The current plan is to start me on Adriamycin (doxirubicin) once a week for four weeks beginning next Monday, and then re-evaluate. On this low dose regimen I am likely to experience more mucositis (mouth sores). Dr G will try to prevent that side effect with some other meds such as L-glutamine powder (also prescribed by my naturopath), calcium phosphate rinse, Neulasta, chlorhexidine gluconate rinse, vitamin E, Gelclair and "Magic Mouthwash" (xylocaine viscous solution, Zovirax® (alcohol-free), and Maalox® or Mylanta®). Dr G told me I should suck on ice chips while receiving treatment.

I'll also be at risk for infection due to low red and white blood cell counts and will probably experience more hair loss. Hopefully I won't have more issues with hand-foot syndrome.

Rik and I have already decided on a plan of action if the mucositis prevents me from eating. He will feed me milkshakes, smoothies, even Ensure "lattes" -- anything to get calories into me. I dropped five pounds the last time this happened and although Dr G praised me for keeping stable weight, I don't really want to lose much more.