MRI results: quick update

Yesterday's head MRI showed mixed results -- the old mets are stable or reduced in size, but two tiny (3 mm) new ones have appeared. I will start Xeloda as soon as the drug ships from my pharmacy.

The good news: Xeloda is a pill I take twice a day, so I'm not tied to the chemo chair every week. I'm starting at a reduced dose. We'll see about the side effects. The 21-day cycle is two weeks on the med, one week off.

I'll continue on the same other meds (Avastin, Aromasin and Faslodex). Dr G may add eribulin back in, depending on how well the Xeloda works.

Why no gamma knife? If any of the brain mets begin to bother me and cause symptoms that interfere with daily living, we will look into targeted radiation therapy. But if we used gamma knife now, there might be more damage from radiation scarring than benefit from the therapy. And Xeloda is his "go-to" treatment for brain mets.

I had a realization this afternoon while talking with Dr G. I can keep chugging along, even with new issues coming my way, as long as my quality of life is this good. I can cope with new stuff while living well with cancer. And when that changes, I'll deal with it as it comes along.

Head MRI

This morning I had a head MRI. Thanks to T for driving me so that I could take Ativan and relax in the MRI tube. I actually think I fell asleep for a bit!

This diagnostic tool might help Dr G figure out why my left eye was twitching, why I have a numb spot on my chin and why I have been "stretching" to find the right words lately.

Now, the funny thing is that except for the numb spot on my chin, all the other symptoms have disappeared. But Dr G wants to see me tomorrow anyway, to give me the results of the MRI. He also does not want me to have the scheduled eribulin chemo tomorrow.

My guess is that he looked at the digital images from the head MRI and saw something concerning. It could be more brain mets. If that's the case, I'm sure he will change treatments pretty quickly. We've talked about two possibilities already, but I will wait until I see him tomorrow before speculating more here.

Either way, I have been through much of this before. That doesn't mean it's not scary! But at least it's a familiar fear.

The latest

My tumor markers have gone up a bit (not statistically significant) but Dr G wants to watch this in case it's a trend. I will stay on the current combo (mid-dose eribulin, Avastin, Aromasin and high dose Faslodex) for another month. If the numbers trend upward again, we will consider changing treatments and perhaps rescan. I haven't had scans in months, but as Dr G says, the time to scan is when there's a reason to scan.

We breifly discussed Xeloda, which he prefers for treating brain mets, but is related to the 4FU that put me in the hospital for almost two weeks a few years ago. So he's reluctant to use it, but I push him on it every time we think about changing things up.

Then Dr G remembered reading about a drug recently approved for metastatic prostate cancer but also studied in metastatic breast cancer. It's called cabazitaxel. II have responded well to taxanes, and this particular drug has a much lower risk of neuropathy, which would be of real relief to my feet. However, it's given with steroids, and I'm not sure of how frequently (i.e., once a week for two weeks. etc.).

No doubt we'll cross that bridge when we come to it. In the meantime, I have another month of eribulin coming at the mama bear dose both times in the cycle. (I had the mama bear dose and the baby bear dose this time.)

Now to get ready for a houseful of singers!

Alternating low and middle doses

I went in for labs today and ended up getting chemo. Although I did fairly well on the middle dose of eribulin last week and this, Dr G decided to alternate the low and middle doses in this current cycle. In theory this keeps me healthiest and best able to tolerate the chemo. Dr G says he likes eribulin and is having good results with other patients as well.

I'll know more when I see him tomorrow and get my latest tumor markers.

Just a few days of steroids...

I had a great weekend. Despite the increased eribulin form the baby dose to the mama dose, the 4 mg of steroids gave me enough energy to get through the weekend.

On Friday I ran some errands and cooked a lovely vegetarian Shabbat dinner (challah filled with pear and cardamom; potage parmentier, stuffed mushrooms and apple tart a la Julia Child. H contributed a delicious kale salad). Then I crashed.

On Saturday we ushered at "The Book of Mormon." It was a full house, but Rik and I found a good place to lean on a wall during the first half and then he found two unused seats near an aisle, so we could watch the rest of the show in comfort. It was quite irreverent but funny, with lots of singing and dancing. I was surprised that the creators of "South Park" were such songsmiths!

Rik spent Sunday morning watching the big Seahawks football game with G and D. Then we went to Beth Shalom for our every-few-years congregation photo shoot, which creates a photo directory for our community. We brought Bobka and ended up with one picture where everyone looks good. After that Dunava had a three hour rehearsal in preparation for next week's recording session. We joined G and W for a yummy Chinese dinner and again I crashed. Now you know why I didn't join Rik at brunch. There was too much else to do and I have to harbor my energy.

I slept well on Ambien every night, but now will taper off that and use lorazepam as needed. My feet seem more tingly and numb on this higher dose but the neuropathy appears to be in the same areas, at least not growing. I still have hair. We will see if I am strong enough to get another dose at this same level on Thursday.

Back on chemo

My red blood cell count went up to 34.9 (higher than the nurse's!) after Tuesday's transfusion, so I had chemo today. Dr G put me back up to the middle dose of eribulin, which is about 1.5 times the lowest dose I had received for the past few months. 

We will see what we will see…. so far I slept all afternoon until 7 pm.

Tiny change in treatment plan

I saw Dr G today and the good news is that my tumor markers keep dropping, this time by 65 points. But he wants to mix things up in the treatment plan.

Eribulin can be given in three doses (think Papa Bear, Mama Bear, and Baby Bear). Papa  dose wiped me out completely in October. Mama dose came close to wiping me out a few weeks later. Baby dose has been tolerable but as Dr G explained to me today, too small a dose of chemo might mean my cancer has a greater opportunity to get out of control. 

So next week I start at Baby dose on day 1 of the eribulin cycle and then move to Mama dose on day 8 if my numbers look good. I am slightly anemic at this time but not enough to warrant a transfusion.

In other news, we're having a great time with my mom, who skunked both Rik and I at Scrabble last night!

Just an update

A friend reminded me at shul last Saturday that I hadn't posted to my blog in quite a few days. So here's the latest:

I braved Costco, which was not especially crowded for this time of year. They had black cod, which I adore. Then had to go to Umajimaya for the kazusuke marinade.

Dunava had our last choir rehearsal on 2012. We worked hard, sang well, and are busily preparing for the next recording session in January.

I had the second dose of eribulin plus the monthly dose of Faslodex (two shots in the tush). It's odd how the Faslodex didn't work on its own the first time I took it, but in combination with exemestane (Aromasin), it seems to be helping keep my cancer down.  Three days of steroids followed, but only 4 mg per day, so I didn't feel especially strung out.

I made it to the synagogue board meeting that same day as chemo treatment, after a long nap in the afternoon (despite the steroids). I was even able to follow and participate in the discussions.

Went back to the oncologist's office the next day for my Neulasta shot, to build white blood cells and allow me to be around people and limit the risk of infection.

Cooked Shabbat dinner for good friends (Thai-ish tom yum soup, black cod kasuzuke, black rice with coconut milk and chopped almonds, rice wrappers with sliced vegetables and sweet chili sauce, ginger cake with fresh pineapple. And J's delicious challah.

I've done almost nothing since -- well, walked the dog, took some naps, read a book, and watched "Strictly Ballroom" for the umpteenth time. (One of the best and funniest dance movies ever made!)

Tonight my mom arrives for a visit. It should be a great week!

What's new in CancerLand

I was able to start another round of eribulin last week. At first Dr G wasn't sure that my numbers would rebound in time, particularly my platelet count, but everything came back up by the end of the week.

Dr G also gave me permission to reduce the follow up doses of dexamethasone (daily for three days after chemo). I took only 4 mg per day, and that seemed to be fine. I had enough energy without feeling completely wigged out.

The neuropathy in my feet continues about the same. It's apparently still confined to my toes and the balls of my feet. Occasionally I am in pain by bedtime, with searing foot cramps. Wearing socks to bed seems to have helped that. I think it has to do with keeping my extremities warm. If my feet feel warm, they don't cramp. Taking lorazepam in the evening if the discomfort is intolerable also helps.

I am beginning to feel some numbness in my fingertips and a tiny bit of tingling in the palms of my hands. I'll be sure to report this to Dr G when I see him next week.

Today I took a nap, for the first time in days. Maybe it was the steroids wearing off (today was the third of three days), maybe I was just bored, but one minute I was reading and the next I was snoozing.

And that's the news from CancerLand today.

Good report from the doc

My tumor markers fell another 57 points with this last round of chemo. That's not as dramatic as the initial 133 point drop, but it's still headed in the right direction. We'll do another set of labs at the end of the next round of treatment, and hope for a continued slide downward. Dr G did mention something about increasing the eribulin dosage back to a higher level, and when I gave him a hairy eyeball look, he said, "They'll throw me out of the oncologist union if I don't at least mention it!"

What I think he meant is that I might get more benefit, and faster, from a higher dose, provided I can tolerate the side effects. If we try it and the side effects become too much, we can always go to the lowest dose again.

Speaking of side effects, my neuropathy appears stable at my toes and the balls of my feet. I have begun to notice the tiniest amount of numbness in my fingertips, enough to report but not so much that it interferes with life.

Dr G also made a Jewish joke today. He asked, did I know what the trade name of eribulin was? He pronounced it Ha-leven. Leven is "white" in Hebrew and leben refers to a kind of yogurt. (B's and V's can be interchangeable in Hebrew.) But the manufacturers pronounce it Ha-la-ven. I don't know why they named it this, but it did make a clever play on words by my doc.

As he left we had a mutual love-fest about how we suit each other so well and how if I still have to be treated for cancer, he wants to treat me. I'll certainly stay with Dr G!

Hopped up on steroids

I am on day two post-chemo and have been on dexamethasone (Decadron) since my eribulin infusion on Wednesday. This is the steroid that makes me a little hopped up (hah, a litle).

Yesterday I ran a couple of errands, did three loads of laundry, participated in a 90 minute conference call, baked a pecan pie for  Shabbat, made dinner for Rik and I, and hosted rehearsal for my choir. I had to take Ambien to get some sleep even after relaxing for an hour after rehearsal.

Today I went to Dr G's office for my Neulasta shot (to boost my white blood cell count), met a friend for some fun, came home and started more laundry and am now blogging. In a few hours we will go to friends for Shabbat dinner and bring the aforementioned pecan pie along with coffee flavored whipped cream.

My feet hurt, I feel stressed from the steroids, it's impossible to relax. I will try to cuddle with the dog and read a bit while the laundry does its thing. Maybe the Ativan I just took will help me calm down.

Eribulin side effects

This is a quick reality check on actually living with cancer and chemo side effects. Be prepared.

Even on this lowest dose of eribulin, I have begun to experience more significant side effects. I was constipated all weekend, which I thought was due to too much turkey and stuffing and not enough fruit and vegetables, but turns out is prevalent in fewer than 29% of people taking eribulin. I always keep some Senokot-S® on hand (it contains senna, which helps move the bowels) and it helps soften stool.

My hair has begun to come out. I think this was true of 45% of eribulin patients, and clearly I am in that group. It started thinning a few days ago, so I had it trimmed to be more even. This morning in the shower, much more hair came out that in the previous days. Since I get the next chemo dose on Wednesday, by next week I might be pretty much hairless. Thank goodness I had those eyebrows tattooed! At least I won't look completely like a bald egg (or a male version of myself with a significantly receding hair line).

The neuropathy in my feet has gotten a bit worse but not terrible, except late at night. I think I am more aware of it at night because I'm not as busy. Reading a book, watching TV or snuggling with Rik and Bobka don't distract as much from the pain and numbness in my feet as doing chores or cooking.

On the glass half full side, the sun is shining today and Bobka and I walked 20 blocks to the bank and drug store despite my neuropathy. It was lovely to be in the sun after some torrential rains this past week, and I am glad that I didn't let the pain in my feet stop me.

Good news

The eribulin is clearly working. My CA 27.229 tumor marker fell by more than 100 points! This is exactly the kind of reaction Dr G and I hoped to see.

The next step will be to reduce the eribulin dose once more (to the lowest of the three options), because the neuropathy in my feet has increased dramatically. In the morning I now feel numb all along the toes, the balls of the feet, and the outside edges of each foot. (Previously I didn't have any symptoms in the morning.) By 4 PM I have that pins-and-needles feeling, which soon progresses to full numbness and more pain by evening. Hence Dr G wants to try reducing the dosage to see if the eribulin will still be as effective but less toxic. I agreed to try for one more cycle.

Also, today is my 53rd birthday. Rik bought me red roses, Bob snuggled with me, and I managed to do a little shopping. But what did I really do today? Go to the doctor and get good news!

I'm already looking forward to turning 54.....

Day 1 post-chemo cycle 2

Wow, that title was a mouthful!

Yesterday I received the second dose of the second cycle of eribulin. All went incredibly smoothly and I was in and out within 90 minutes. The lab was fast, the pharmacy was fast, even the drips were fast! And my nurse was so on the spot with her timing, she scooted into my area just as the beeper went off. I had a great visit with T again, and we waxed philosophic on cancer, the recent US presidential election, and our deepening friendship. Shared burdens do make for increased closeness, in my experience.

Dunava came to my house for rehearsal last night, which I greatly appreciated, as my feet were truly talking to me about the neuropathy. The feeling is more intense than two weeks ago: burning, painful, numb, although it hasn't spread beyond the last area to be affected in my toes. The lack of spread may be due to the Cymbalta I started a few months ago. It's hard to tell.

At any rate, Dr G says he will consider reducing my eribulin dose again, or consider changing the dosing schedule, but first he wants to know how well this chemo is working. He won't keep me on it if it becomes intolerable. I'm a compliant patient --I  will keep him informed.

Today I went in for my shot of Neulasta, to boost my white blood cell count. I asked the nurse if she would consult with Dr G about my taking four days of steroids instead of only three days post-chemo. Normally Saturday would be my last dose of steroids. On Sunday afternoon I am supposed to be interviewed for a video at our synagogue, and on Sunday night Dunava has our first recording session for our new CD. I want to have energy for both events, and I'm afraid that if I don't take the steroids on Sunday, I will crash too hard. The nurse says it's okay to take one additional dose of steroids, and will confirm with Dr G.

Deb Perelman, aka "Smitten Kitchen"

Speaking of steroids, I am clearly flying! I was up until midnight last night, surfing online (but NOT shopping!). I awoke today at 7 AM, an hour earlier than usual, practically vibrating with energy.

I met my friend G at a book signing for our favorite cooking blogger, Deb Perelman of Smitten Kitchen, who just had her first cookbook published, The Smitten Kitchen Cookbook. ( haven't read it yet, just paged through a copy while we listened to Deb talk. She's as funny in person as online!) Afterwards we ate lunch at The Continental (avgolemono soup and a shared platter of dolmades, olives, feta cheese and their terrific Greek pita). I went for the Neulasta and to my support group.

I'm still vibrating with energy, but my feet hurt, so I'm going to put them up for a bit and snuggle with Bobka. I do have a shul meeting this evening, and hopefully will still have energy to get out tonight.

Gotta love those steroids!

I was so BORED

Yesterday I was so bored I thought I'd drive myself crazy. I wanted to be prepared for a post-steroid crash, similar to what happened with the first dose of eribulin, so I cancelled our volunteer shift at a local theatre. But I didn't schedule anything to replace it, and I made myself stir crazy with boredom.

I couldn't concentrate on reading my book.
I couldn't nap.
There was nothing to watch on TV (except cooking shows and sports).
I didn't have enough energy to walk the dog.

What I should have done was call a friend or run an errand. Instead I did some laundry and emptied the dishwasher. It was most emphatically not enough.

On the Meyers-Briggs Type Indicator (MBTI)*, I am pretty far on the extravert side of the scale. Not as far as Rik, but pretty far. That means I get my energy from being with people (unlike introverts, who get their energy from being alone). If I spend too much time alone, I get cranky. Yesterday I was supremely cranky. I didn't begin to feel better until I went to my voice lesson and my teacher D gave me tea, gingerbread and sympathy.

Of course, my feet hurt as well. The neuropathy has increased since last week's eribulin. It feels more intense, although it  doesn't seem to have spread beyond the current area at my toes.

Still, between the boredom and the neuropathy, I think I won a "prize" for crankiness. Thankfully my wonderful husband has tremendous patience. He put up with my bad mood, took me out to dinner and commiserated when nothing tasted right after a few bites. After we got home and I cuddled up in my pajamas, robe and blanket, I took some Ativan to get the edge off and Rik and Bobka the dog snuggled with me. Soon all was almost better.




* If you really want to know, I consistently test as an ENFJ on the MBTI.

Eribulin cycle 2

Even though I only had one dose of eribulin on cycle one, I am calling this cycle two.

My counts on Wednesday were all normal, so I received the lowered dose of eribulin. The first dose had been 1.5 mg/m2; this was 1.1 mg/m2. If needed, there is even a lower dose available.

I'm on day two post-chemo, and the steroids are keeping me well. I've had plenty of energy to run errands, spend part of the day with a friend, cook dinner, etc. We did ask for and received an invitation for Shabbat dinner tonight. (Actually two invites, thanks P and R, but first come, first served or in this case, first guested.)

My eyebrows feel a little itchy but I'm trying hard not to scratch and to apply more Vaseline instead. They still look great and I am very happy I did the cosmetic tattooing.

I'm about to lie down for a nap or at least a cuddle with the dog before Rik comes home.

PS I reinvented my favorite hot drink from the old Gravity Bar on Seattle's Capitol Hill -- the Hot Gregory. Part ginger tea, part apple cider (thanks R and D!) diluted with 50% little hot water. So delicious on a cool day!

Eyebrows!

I promised an update on the tattooed eyebrows!

A few months ago I started researching cosmetic tattooing. I had gotten so tired of my sparse eyebrows and having to brush on brown eye shadow every morning just to give my face a "frame." I didn't want  to go through chemo again if losing all my hair made me look like a bald, egg-shaped space alien every morning to myself.

One day, while walking along 45th Street in Wallingford, Rik and I came across Radiant Med Spa. They were just closing, but the esthetician who does the cosmetic tattooing was happy to talk with me for a few minutes. She explained the procedure, told me she had already worked with cancer patients, and that she offered a 50% discount to cancer patients. I took home a brochure and thought about it some more, for a few months at least.

About three weeks ago I decided I wanted to do it. If I was going to lose my hair to the eribulin (only 45% chance, but still), I wanted the tattooed eyebrows. Dr G gave permission, provided I waited until he said it was okay. Last week, when I had a kidney infection and couldn't get chemo, he gave the go-head. and sent an approving note to the spa

On Tuesday I showed up at the Lynnwood location for my tattoos. Dawn Hunter, the esthetician and chiropractor who I had met earlier, was ready for me. She was very capable and extremely good at listening to my suggestions about how to improve her cleanliness procedures for my compromised system (washing every time before gloving, giving me a clean blanket straight from the wash, etc.). Dawn first tweezed my brows, then drew on the shape she intended to tattoo. She numbed the area with a topical lidocaine mixture and re-applied it as necessary throughout. I felt a buzzing sensation from the needle and an occasional zing, which was when she'd apply more numbing meds. She mixed two colors: a dark brown and a reddish tint. After she'd done most of the work, she handed me a mirror (first cleaned with an alcohol solution, what a gal!) and I had a look. We agreed on some tiny tweaks, but the shape but basically fantastic, as you can see.

I am not to pick at the scabbing for two weeks and place Vaseline across each brow twice a day to keep the skin moist while healing. The shade will lighten during this time as well, but it's already the same color as my hair and lashes. (I just don't have a lot of lashes anymore.)

All in all, I am extremely satisfied and would recommend Dawn Hunter at Radiant Med Spa to any cancer patient who wants to look like him- or herself while undergoing chemotherapy.

Dr G says:

Today I received Avastin and had a lovely visit with my friend R. Afrerwards I saw Dr G in an actual office visit, when he told me the following:

My kidney function is normal. Yay! I'll just finish that dose of antibiotic he prescribed.

He will reduce the eribulin dose and we hope I will tolerate it better. My next dose is Wednesday.

Although my blood pressure is going down nicely, I should stay on the diuretic and potassium supplements for as long as I receive Avastin, if not longer.

He agreed to look over a number of clinical trials I found (while surfing the web one night when I had serious insomnia).

When I need to move to another treatment, Dr G will consider prescribing Xeloda. Xeloda is an oral form of 5FU, which was so hard on me a few years ago. However, Xeloda is supposed to be more easily tolerated than 5FU and have fewer side effects. It's a mainstay of metastatic breast cancer care and I've never been on it.

All in all, it was a most satisfactory visit. Tomorrow, the eyebrow tattoos!

No chemo again

I went for chemo today as planned. My friend T joined me for a visit and we talked about our mutual but differing chemo experiences. I think T found it very interesting to be in another facility.

I reported to nurse Sam that for a few days I'd had pain in my flank (the area between your shoulder blades and waist, where the kidneys are located). So I peed in a cup and the sample showed that I have a urinary tract infection. Since I started on diuretics a week or so ago, I have not experienced any of the symptoms usually seen in a UTI: pain when urinating, urge to go but no urine, etc.

Dr G came in and within five minutes he'd written a scrip for an antibiotic to treat the UTI (no chemo until that's been taken care of!), said that he would consider reducing the dose on the eribulin, and agreed to write a note approving my request for a cosmetic eyebrow tattoo. (Mor eon that later.) I am to go back next week so we can try chemo again.

My counts have rebounded and I am no longer restricted from being in crowds. So after touring T's office, I took myself out to lunch and for a shopping spree at Nordstrom Rack. I found Rik the perfect blue cords he's wanted, a new jacket for me (which I need to cold weather test tonight), and tried on a fabulous pair of boots. I couldn't bring myself to buy it all, so I am still thinking about the boots. I have to act fast -- things don't stay around long at the Rack!

On the way home I stopped at the grocery store, the drug store, and then crashed for a short nap. I couldn't sleep, but putting my feet up and snuggling with Bob the dog was restorative.

Now it's off to rehearsal. If I don't have chemo, I want to keep up with my commitments.

No chemo today

My white cell counts were too low today for me to receive treatment with eribulin. I did get a shot of Neulasta, which should bring the counts up, and was told to reschedule for next week to try again.

Because my white cell counts are so low, I am instructed to stay out of crowds. Even a passing stranger with a sniffle could set off a major infection for me. However, I do get to go to Shabbat dinner Friday night at the home of friends.