Steroids

I am hopefully tapering off the prednisone completely after this week. It's been more than a month, I've gained 14 pounds (which on my 5'4" body means I can't fit into much of my clothing) and I haven't slept well in weeks.

No matter what steroids do to make you'll better, you can't just stop them "cold turkey" and they have unpleasant side effect, namely: hungry all the time (which means weight gain) and keep you awake at night (which means crappy sleep).

I guess the weight will start to disappear as I feel less hungry at every hour of the day. Sleep is more difficult. I've alternated between Ambien and Ativan, but the Ativan no longer seems to work, which leaves me taking Ambient every night until the weekend. Then no doubt I will develop rebound insomnia and not sleep for a few days from that.

Cancer sucks.

But before I get off the steroids completely, Dr G wants me to have a Cortrosyn (cosyntropin) stimulation test (blood test) to see what my thyroid is actually doing. Apparently this test means multiple blood draws over several hours, potentially while fasting. I don't know but  I guess I'll find out more later this afternoon when I see him.

And then maybe a little shopping. It's the last day of a Macy's sale and there's a pair of sandals I want to try on.

PS No trip to Macy's, because it took forever to schedule everything with Dr G's new front desk staff, who seem seriously undertrained after my years with the staff at Minor and James.

MORE PS'S:

My tumor markers are down by 100 points!

My brain tumors appear smaller and there are no new ones!

I get to stop steroids tomorrow!

Everything is coming up roses at the moment on the cancer front. The Alimta and bicalutamide appear to be working.

The latest

What with the Jewish new year last week, chemo and a medical surprise, I haven't had time to write lately. Here is a recap of the latest.

Even though Rosh Hashanah came at the end of my weekly chemo cycle, I overdid it with baking and socializing on Sunday. By Monday morning I didn't have enough energy to go to services, even to see Rik receive the honor of being called to the Torah. (Evidently at 9:20 am I was moaning, "I'm getting up," even as Rik was getting ready to walk out the door.) We did manage to enjoy lunch with friends on Monday.

On Tuesday I actually made it to synagogue for the second day of the holiday, just in time to hear the shofar blown. There is also one part of the new year's service that I love. We bow before God, as in the daily prayer services, but on Rosh Hashanah one can choose to actually prostrate, getting down on the floor and kneeling. I have done this along with the cantorial soloist for many years, partly because I want to know that I can, and partly because this is the one moment in the year when I acknowledge that I don't have control over everything in life. By kneeling before God, I remind myself that it's not all about me. I believe God has a plan, even if I don't know it or can't understand it.

Okay, back to last week.

On Wednesday afternoon I had chemo. When I woke up in the morning, I did something rare and unusual. I called the Amazing and Wonderful Nurse Jacque to say that I felt awful, my feet were in terrible shape from the neuropathy, I'd had an indifferent holiday at best, and to please ask Dr G to consider dropping one of the two chemos. Dr G agreed to drop the Taxol and only give me the carboplatin.

I also complained about a possible urinary tract infection and later I gave a sample to be tested for infection. Dr G prescribed something to help with the frequent need to urinate, which actually hasn't helped much. I'm waiting for tomorrow to call Nurse Jacque about the final results of the urinalysis and hopefully get an antibiotic. Even if it's only a slight infection, something has been going on for ten days. And if it's not an infection, what is it?

While at chemo Dr G decided my red blood cell count was borderline and would likely dip further after that dose of carboplatin. He ordered a blood transfusion. Surprise!

Thursday I went to my support group as usual. The nurses at the wound center changed my chest bandage and decided it hadn't healed much in two weeks. My former port-a-cath site is almost completely healed. At last some good news! The doctor in the wound center said keep on with what we're doing and that he'd been in touch with Dr G about possible options. I see Dr G this week and will learn more then.

The blood transfusion took all of Friday, mostly because I couldn't get up early in the morning. A friend visited until I started to drowse from the IV Benadryl. I slept for more than an hour and missed my 1 pm visitor. Thankfully she came back, brought lunch, and we had a good talk. Good surprises in the making!

I'm still having insomnia, even with my naturopathic doctor's recommendation of WellMind. Last night I didn't fall asleep until almost 2 am. My feet still hurt tremendously. I'm now taking medication for high blood pressure likely caused by the chemo. This has been a rough time. I look forward to a week or so break from chemo.

As I said, I see Dr G later this week and hope to have a plan, even if it's another brain MRI. Let's hope the carboplatin lowers my tumor markers and has killed some brain mets!

Tumor marker down again

Just a quick update to say that my tumor marker went down another 30 points after last month's chemo. Dr G is watching my red cell count (I am a bit anemic). My white cell count is okay but my platelets are low.

I started another round of Abraxane again today. Plus Avastin and Faslodex (two shots in the tuchis). I'm still taking Aromasin daily as well as Cymbalta, L-glutamine powder and gabapentin/neurontin to help with the neuropathy in my feet. And a multivitamin. And vitamin D (not so much sunshine here in the Pacific Northwest). And calcium/magnesium. I'm sure there's something else mixed in there.

How do I keep all this straight?

Tumor markers down

I saw Dr G last week and after repeat scanning of my liver and brain, it appears that my mets are stable and my tumor markers have dropped another 50 points.

The potential infection in my port line may or may not exist. Last week I saw an infectious disease specialist who is not convinced that I have an infection. He wants me to stop using my port for blood draws a few days before using it for chemo, to give anything that might be brewing a chance to heal. So I will go early to chemo, have my blood drawn for labs, and spend an extra hour in Ballard waiting for results, instead of having a phlebotomist stick me in the arm, and then run out of usable veins in a matter of weeks. That's why I got a port in the first place. Lymphedema in one arm means no needle sticks; crappy small veins in the other arm means I prefer to use the port. And no one wants to have to stick me in the feet or in the neck, the best other options. Uggh….

Back for more chemo tomorrow!

Cancer update

I really promise to write more about Bulgaria, especially a topic on my mind for about two weeks. My brain calls this subject "A Tramp Abroad," in humble imitation of Mark Twain. But first a cancer update.

I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.

We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!

In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).

According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:

Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)

Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...

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.

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!