Scan results and treatment update

Last week's ultrasound results were neither positive nor negative. I continue to have stable disease in my liver, meaning the Gemzar didn't really work all that well for me.

Dr G has decided to put me back on Abraxane. This is where I started chemo exactly a year ago. He did not order scans before I started the Abraxane. After nine or so treatments, I had a CT scan which found the liver mets. We don't really know when they appeared.

He switched me immediately to Doxil, which I did not tolerate. In the past year I have also taken Adriamycin, high dose Faslodex, Navelbine and Gemzar, all resulting in stable disease but no reduction in liver mets and continually increasing CA 27.29.

So, since I tolerated Abraxane well last year, I will start on it again next Monday. At least I know what to expect -- low blood counts, hair loss, nausea, fatigue and maybe peripheral neuropathy (although I don't remember this from last year).

Last year I had all my hair buzzed off just as it started to fall out, but I still had stubble all during the spring, summer and fall chemos. I was never baby-butt-bald. So I think I will try to live with hair loss this time instead of buzzing it all off again, and see if it does really all fall out, or if it only thins.

It does mean I will likely be hairless when we go out of town for a family celebration in June. I still have the wig I bought last year and many, many scarves. If I am bald, everyone can just deal with it. 

Dr G knows about our planned trip and hopes to see some results before we leave. I think that means I can look forward to another scan mid-June. As he told me today, "You're in good shape. We just have to find the right thing for you." We had a moment of emotional connection together and decided we are exactly the right doctor-patient team together.

(If you search through my blog for posts on Abraxane from 2010, you'll read that at the time I was dealing with a severely dislocated elbow, lymphedema, fear at starting chemo for the first time in eight years, and incipient depression. After having been on chemo for most of the last year, I can safely say that my fear is reduced, I know what to expect from Abraxane this time, my elbow has healed and I am no longer clinically depressed. But I think I will stay on the low dose of sertraline for the time being, just in case.)

Ultrasound

Last week I had another abdominal ultrasound. Dr G likes to go back and forth on imaging scans. Sometimes I have a CT, sometimes an ultrasound, even occasionally an MRI. But he doesn't like me to have too much radioactive contrast, so last week's scan was an ultrasound.

My last ultrasound was in November, and my most recent CT was in February. I asked for, and have received, the radiologist's written report, since I won't see the oncologist until Thursday. However, I don't want to comment on it until I have Dr G's take on the scan and his projections on what to do next: continue on Gemzar, start a new chemo, or maybe try estrogen priming, something he's mentioned recently.

I'll know more on Thursday....

Gemzar in my future

I saw Dr G yesterday and got the results of my recent CT scan. This (perhaps lazy? or just busy) radiologist wrote that I have "close to ten low attenuation lesions consistent with metastases in the right and left lobes" of my liver. (The previous radiologist counted seven lesions in my liver, so from this radiologist's report we don't really know if there are actually more now.) The liver lesions appear to have been stable since the last scan in 2010. The potential lung metastasis, originally found in 2002,  has decreased in size since 2008, and the bone mets appear "grossly stable." By physical exam, the mass in my right breast is now measured at 7.5 mm, a clear improvement. The largest scalp met, which to me seems to have grown, gave me a little pain earlier this week, and Dr G said that might be a good sign; i.e. it's responding to the chemo.

However, one of my blood markers for the liver is just a scootch above normal, so Dr G does indeed want me to start Gemzar, another chemotherapy, probably on Monday. We also recalled that he discontinued Fareston (toremifine) after only a couple of months because I developed uterine bleeding while taking it. Now that I've had a hysterectomy, he may choose to put me back on this estrogen-blocking drug, since I had a long run of two years on its cousin tamoxifen.

I am okay with more chemo, but I sure wish that it would really kick some cancer butt. Stable is good, but I'd like to see these liver lesions shrink to nothing.

PET scan

This morning I woke up extra early to get to the Cancer Institute for my PET scan. Rik walked the dog while I got ready. It was only 23 degrees outside! Thank heavens I bought that long down coat on sale a few years ago.

The prep for a PET scan is:

• No exercise for 48 hours prior to the test.
• Eat a no sugar-low carbohydrate diet the day before.
• Eat a high protein/high fat dinner the night before.
• Nothing but water after 9 PM.

Because my power port can't be used for the PET contrast, the chemo nurse started an IV line. (The PET solution tends to stick in the port, and would show as a big lighted area on the results that might mask any cancer located in the same spot as my port is placed.)

The PET tech gave me some yummy (not) barium contrast material to drink. It comes in four flavors: mocha, banana, berry and vanilla. I chose the mocha as the potentially least disgusting taste. Then I rested quietly, listening to music. I was told to be completely still, not even turning the pages of a book, so the PET radiotracer solution doesn't show a false positive in active muscles. The barium contrast gave me a bit of diarrhea, which happens in about 25% of people. Yucky but manageable.

After an hour of quiet, I went into the scan room. Lying on the narrow scanner bed with my arms overhead and my eyes covered with an eye mask, I relaxed as best I could. Twenty-five minutes later, I was done.

Rik took me to Cafe Presse, my favorite place to eat on Capitol Hill. It was almost noon at this point and I'd been fasting since 9 PM last night, so I was pretty hungry. I ordered pain et beurre, omelette avec fromage Comte, et chocolat chaud (French-style hot chocolate; basically a bittersweet chocolate bar melted into whole milk and served with a whopping dollop of whipped cream on the side). Rik had steak frites. Everything was delicious, as always here.

We came home and I took Bobka the dog for a nice walk. Now I'm off for a nap. I get the PET results on Tuesday.

More cancer?

We saw Dr G yesterday and my tumor markers have been rising slightly for the past three checks. That might indicate that the Faslodex is working (i.e., you get a bump up in tumor markers at first) OR if it's a steady rise, it might mean that the Faslodex is not working. Hard to say. By physical exam, I am "completely stable."

Dr G and I discussed another PET/CT scan, an expensive test which apparently I haven't had since July 2008. This scan measures the cancer's activity by noting how quickly the tumors take up glucose (sugar).

If the PET/CT scan reveals much more active cancer, and it becomes apparent that the Faslodex is not working, the back up plan is for me to start another chemo, Navelbine (vinorelbine), in January.

Dr G tells me that Navelbine tends to be very mild when compared to other chemotherapies, and just as effective as anything else. For those of a medical turn of mind, here is a link to the recent Journal of Clinical Oncology which Dr G shared with me. You may find it interesting. Technical, but interesting. All others, note the abstract's final paragraph:

Conclusion The study failed to demonstrate superiority of any drug in terms of efficacy, but the vinorelbine combination had significantly fewer adverse effects and should be considered as an alternative first-line option.

Wait and see....

CT results and follow up

On Thursday I saw Dr G and got the results of my latest CT scan. He was satisfied that the overall results are positive! One liver metastasis has decreased by more than 1 cm. Another is negligibly larger, which may be due to interpretation of the scan and at any rate is not statistically significant.

However, I complained last weekend about pain in my right knee, just to the outside of the kneecap. I had an xray before my visit with Dr G, which showed a met but not in the knee. So we reviewed my past two bone scans and neither specifically indicated a metastasis in this location. To be safe, I will see Dr Eulau, the radiation oncologist, and get his opinion.

Dr G pointed out that it's possible the pain I experienced in my knee is "flare" associated with the effectiveness of the Faslodex. If so, the pain is a sign that the Faslodex is working. Dr Eulau will take all this into consideration and give an opinion if radiation therapy might be indicated.

What's new

I was reminded today by a good friend that I haven't posted here in a few days. Things are generally okay but when piled together, I find I am in need of professional support.

1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.

2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.

3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.

4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...

5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.

I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.

When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.

Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.

Bone scan results

I got the results of last week's bone scan and indeed, the persistent ache in my right hip is an area of new metastatic activity. There is also some new activity in my thoracic spine (about where the bra strap rests). Clearly the Megace isn't working any more, and it's time to change treatments.

There are several ideas swimming around. I will start a new drug called toremifene. It's a sister drug to tamoxifen and we have no way to predict how well it may work for me. I did get a few months on tamoxifen, as I recall. You take it as a pill, by mouth.

I'm going to coordinate with my radiation oncologist and orthopedist to see how they want to be involved in treating the new mets sites. More on that later as I am able to get appointments.

Dr. G is looking into the monoclonal antibody Avastin (bevacizumab) to be given in combination with the chemotherapies Taxol (paclitaxel) or Taxotere (docetaxel) as a possible next step. These drugs are given by injection or infusion, so that would mean back to the hospital for treatment.

The thought of more chemo is scary, since the 5 FU was so toxic to me last spring. But as Dr. G says, everyone reacts differently, and just because I had a tough time with 5 FU doesn't mean Taxol or Taxotere will be the same.

As far as the toremifene goes, here is what I found about possible side effects from the American Cancer Society's web site:

Common --
hot flashes
nausea

Less common --
irregular menstrual bleeding
milk production in breasts
vaginal discharge
vaginal bleeding
"flare" reaction for the first week or two on the drug

Rare --
vomiting
loss of appetite
tremors
skin rash
hair loss
cataracts or changes in eyesight
swelling of hands and feet
mild decrease in white blood cell count with increased risk of infection
mild decrease in platelet count with increased risk of bleeding
increase in calcium blood level in the first 2 weeks of treatment
blood clots with symptoms such as pain in leg or calf, sudden shortness of breath, pain in the chest, trouble moving or speaking
fetal harm if pregnancy occurs during or shortly after treatment

Oy!

Zometa and bone scan today

I am spending the bulk of the day at the hospital today, getting my monthly zometa infusion and a bone scan. Here's how today will play out --

11:00 AM Place topical anesthetic Emla cream over port site, cover with plastic tagaderm patch and drive to hospital. Run errands along the way. Park in the pay lot because this will be a longer than usual time at the hospital and I might not find 4-hour free street parking.

12:00 PM Show up at Ambulatory Infusion Center (AIC) to have my port accessed.

12:30 PM Walk over to nuclear medicine department, have dye injected, walk back to AIC.

1:15 PM Get zometa (takes about an hour). Have port de-accessed. Hopefully I will get lunch in here somewhere.

2:30 PM Walk back over to nuclear medicine for bone scan. Cover eyes with eye mask and listen to iPod while on scanner bed.

3:30 PM Head home, crash.

Sounds lovely, doesn't it? Almost a whole day spent in medical procedures. Thank goodness I have a good book to read, an iPod to listen to favorite music, and patience. That last is the most important of all.

I get the bone scan results next week and promise to post the news as soon as I get hard information.

Good MRI results

The results of last week's brain MRI were good -- no evidence of metastases in the brain. But it still doesn't explain the sudden onset of vertigo, which by the way has not happened since last Thursday. Dr G says to wait and see if the vertigo returns and if it does, then we will address it.

In the meantime I am thrilled to have a good baseline brain MRI!

MRI today

I had my brain MRI today. Half of a one mg ativan tablet relaxed me enough to get into the tube. My eye mask helps a lot to keep me from freaking out at being inside the narrow MR tube. But the ear plugs didn't really do anything. The clanging and ringing and random LOUD sounds are so unpleasant. My ears rang for several minutes after I was finished.

I had forgotten to ask if this test was going to be performed with injectable dye, called contrast. But the technician read that I have a port-a-cath and asked if I wanted them to use it. I always say yes to this request, because I hate being stuck with a needle. So off I trooped to the infusion room, where a nurse accessed my port quickly and easily. Then back to the MRI room, had the scan, and back again to the infusion center to be de-accessed from the port. The whole process took about an hour. I get the results on Monday.

The ativan made me drowsy, so after returning to our host family's home and eating some lunch, I took a two hour nap. It was wonderful! I don't think I moved the entire time I was ensconced on the sofa. Hopefully I will still be able to sleep tonight after such a massive nap this afternoon.