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.)

Gemzar dose #5

Yesterday I had my fifth dose of Gemzar (the first one of the third round). Although everything was slow to get started, I had a hot mocha in my thermos, cold seltzer in a can, a good book (American Rose, the new biography of Gypsy Rose Lee), the daily crossword puzzle and a couple of new apps to play with on my iPhone. My hematocrit was a little bit down, but it's been lower and Dr G has still decided I should get treatment.

I ran an errand and picked up ground sumac at the new Penzey's Spices store downtown, then came home, spoke to my Mom and my Mum and took a three hour nap on the sofa. Made some chicken soup for dinner, enriched with leftover meatballs and vegetables, a beaten egg and lemon juice (sort of a poor man's avgolemono soup, not nearly as good as at the Continental). You can find a recipe here.

In the evening I ran a small fever of 99.7 degrees, but a Vicodin  brought my temperature down. At 4 AM I awoke with another fever. Luckily I keep meds bedside as well as a glass of water. I sleepily reached out and took another Vicodin, which soon addressed the headache, achy back, night sweat and other fever symptoms. Of course, at that point I realized I had to use the bathroom, so I took my temperature and saw that the fever was only 99.3 degrees. (I am supposed to call the oncologist if a fever hits 100.5 degrees but decided it was the better part of valor to take the Vicodin and not wake anyone else at 4 AM.)

Eventually I fell back asleep around 6 and stayed in bed until just after nine o'clock. I plan to take things easy today. If the runny nose continues and the fever climbs to that magic number, I promise I will call the doctor's office.

Next steps

I saw Dr G briefly today while getting my monthly shot of Xgeva, the bone strengthener that replaces Zometa. (The nurse wanted him to oversee her giving the shot, and indeed he caught her recapping the needle, evidently a no-no.)

Dr G wants me to have Gemzar next Monday (dose #5). He also wants me to have another MRI of my liver. My recent tumor markers indicated a slight increase from the previous lab, but tumor markers alone have not been conclusive for me in indicating disease progression. The MRI should indicate if the liver mets are larger or more numerous than the last time, and whether or not the Gemzar is effective. I have asked for no chemo on Monday April 18 because of Passover beginning that night (we will have a houseful of people) and I won't have chemo on April 25, since my appointment with Dr G is later that week. Then we will review the MRI results and make a plan.

Meanwhile I'm waiting for a call to schedule both Monday's chemo and the MRI. I guess I'll need a ride to and from that test, since going headfirst into the MRI tube exacerbates any claustrophobia I might have. I do wear an eye mask to prevent me from seeing just how close the top of the tube is to my face. Fresh air blows at all times, plus they give you a panic button to hold in case it gets too intense. Still, I think I will take some lorazepam just in case and let someone else do the driving, whenever the test will take place.

The day after

Yesterday's Gemzar chemo resulted in some serious fatigue today and a couple of mouth sores. Luckily the pain in my mouth is kept at bay by vicodin and gargling with salt water helps the sores heal. The fatigue is harder to deal with.

I went back to the Swedish Cancer Institute for a shot of Neulasta today to bring up my white blood cell count. Then I had a meeting at the synagogue. By the time I got home around 2 PM I was hungry and pooped. After a quick bowl of soup, I headed straight to the couch and crashed hard.

I've taken to bringing my cell phone, the home phone, a book and a cup of water with me to the sofa before I crash. This time the book slid off my lap almost before I drew the quilt over my legs. I slept hard for almost three hours. I did wake up a couple of times as I bit down on my tongue and hit a sore spot, but went right back to snoozing.

What this seems to mean is that I have about two - three good hours every day in which to see doctors, attend meetings, deal with email etc. and run whatever household errands need to be done. That's limiting, but I will find a way to make it work.

Now it's back to the sofa....

Gemzar dose 4

I had a busy medical day. First a blood draw; then a visit with my oncologist; last my fourth dose of Gemzar. 

My red blood cell counts were good after the transfusion a few weeks ago, so no need for another at this time. I will get Neulasta tomorrow to bring up my white counts. 

Dr G is cautiously optimistic: "There are at least some peripheral signs that the gemcitabine and Xgeva are working." That is, the pain in my right knee appears to have gone bye-bye, and the largest of three scalp mets is no longer rounded but flat. I will get my CA 27.29 results tomorrow and if the tumor marker has decreased, that will tell us if the Gemzar is indeed working.

I think I should expect a couple of mouth sores this week, based on my experience with dose two, but hope they will be manageable.

Gemzar #3

Today was my third dose of Gemzar. Everything went smoothly but took longer than anticipated. I had a friend with me the whole time, and we enjoyed a great lunch at Cafe Presse afterwards. We shared the butter lettuce salad with vinaigrette and toasted hazelnuts; I had the white bean soup pureed with cream and drizzled with lemon-basil oil; and we shared the chocolat chaud for dessert. C'etait tout delicieux!

I came home and napped for a couple of hours, and hope to sleep well tonight.

The latest Gemzar side effects

I have been steadily feeling better and better since last week's blood transfusion. However, I did notice some additional side effects from the Gemzar which lead me to think this chemo is not quite as tolerable as I hoped.

RASH: Dr G told me to expect a rash on my shins, which showed up briefly as a few large, red spots which were tender to the touch. I had three on my left shin, two on my right. They looked just like spider bites and went away of their own accord over a couple of days.

MOUTH SORES: I developed one sore on the side of my tongue which went away within 24 hours. Now I have two; one on the side of my tongue, but in the back where I can't see it although I can feel it, and the other on the tip of the underside of my tongue. That one is tiny, white, and also tender. I've been gargling with salt water to prevent any infection. So far these are no worse than annoying, and I haven't needed my Magic Mouthwash (xylocaine viscous solution, Zovirax^®(alcohol-free), and Maalox^®, or Mylanta^®).

FATIGUE: This is the kicker. Even after the blood transfusion, I tire easily. Most afternoons I hit the wall around 1 PM and literally collapse on the sofa. Even if I don't sleep, I can't move for an hour or so. If I do nap in the afternoon, then I have trouble sleeping at night. I am trying to do my errands etc. each day in the morning so that I can be home by lunchtime and crash.

This morning I went to Costco, barely made it through the front door with the groceries, shoveled some food into my mouth while standing in front of the refrigerator, and staggered to the couch. I didn't sleep but zoned out quietly with Bobka the dog for an hour or so, then felt refreshed enough to bake an apple pie for Pi Day -- 3.14. (Get it?)

This is my week off chemo and I hope to recover enough to have treatment again next Monday.

Gemzar dose 2

I did indeed have the second dose of Gemzar yesterday as planned. I've been anemic for at least three weeks and my red blood cell counts were low enough that there was some concern I might need a blood transfusion. Bu Dr G decided I should have treatment anyway.

After the Gemzar finished, the nurse took another blood sample to type and cross in case I need a transfusion today. She left my portacath accessed for the same reason.

I am supposed to go back later this afternoon to get a shot of Neulasta to build more white blood cells. At that point they can all decide if I need the transfusion, and if not, can de-access my port.

I took a nap yesterday afternoon and we went out for a quick dinner. By 9 PM I was in my jammies and starting to feel a slight fever. It continued until about 2 AM but never got above 99.5 degrees F. Of course, I remembered I wasn't supposed to take anything to reduce the fever, to see if it would spike higher, so I couldn't fall asleep. Around 1:45 AM I felt the fever break, but still couldn't sleep. I guess I dozed off around 5 AM and slept off and on until 10 AM, when I finally got up, took a shower, had breakfast and walked the dog.

I'm waiting for a call back from Nurse Jacque so I can report all these symptoms and find out what Dr G wants to do. Meanwhile I will make some chopped liver (gotta get some extra iron!) and maybe take a nap.

Fever

I've run a low-grade, one degree fever three times this week. This morning I called Dr G's office and spoke to Nurse Jacque, who told me to stop taking Tylenol and keep track of my temperature throughout the day. If my temp goes above 100.5, I am to call Dr G's office, even if over the weekend, because someone will need to see me.

My last Tylenol was at 9:30 this morning, and it's now just after 3 PM. My temp is 99.3 degrees F, and I will continue to monitor it into this evening and throughout the weekend.

I don't feel bad, not even a headache. My nose has been a bit runnier than usual these past few days, which may or may not have anything to do with my slightly elevated temperature. (Of course, I was out in the worst weather yesterday, and not really dressed warmly enough: sleet, rain, heavy winds and cold).

I think Dr G worries that the Gemzar may leave me prone to infection. This  potentially serious side effect is what put me in the hospital two years ago after four doses of 5FU. So I will keep track of things and be sure to call his office if needed.

Slowing down on Gemzar?

Last night I ran 0.3 degrees of fever. It was enough for me to notice that I felt weird, take my temperature, down some Tylenol, and hide under the blanket while watching TV. After only a few minutes I began to feel better.

I made it to both meetings today, but came home and CRASHED on the sofa. I didn't think I was that tired, but after quickly eating some lunch, the sofa started calling my name. I slept hard for a couple of hours. I think this is what they mean when they say fatigue is a side effect. I just "hit the wall" and literally could not move any further until I had slept.

Maybe this Gemzar is hitting me harder than I thought. It's possible that I didn't rebound quite as far back to normal after the last dose of Navelbine as I'd hoped. And I'm sure that today's combo of driving rain, high winds, sunshine and cold didn't help either.

Gemzar day 2

So far, so good: although I was tired when I woke up, I was able to get out of bed, walk the dog and get to my physical therapy appointment on time. Being with people clearly energizes me; I had a great catch-up with the therapist. On the way home from PT, I stopped at Gran Central Bakery for a loaf of sourdough rye bread and also got Rik a piping hot cinnamon roll, then dropped it off to him on my way home.

I have another meeting this afternoon, but plan to take it easy otherwise. I foresee a nap later today....

First Gemzar today

My first treatment with Gemzar today went smoothly. Not knowing if I needed to have blood drawn for labs, we arrived early to find that was indeed the case. A friend came to hang out with Rik and I while we waited for the nurse to call me.

After waiting almost an hour for the pharmacy to prepare the drug, the actual infusion only lasted about 45 minutes. Of course, by 1:15 we were both pretty hungry, so Rik bought some piroshki (mine spinach and mushroom; his potato and mushroom). We noshed those right up, and after the treatment was over, went to Molly Moon's for ice cream. (I had chili chocolate, which was DELICIOUS!).

I crashed at home for my usual post-chemo nap, made dinner (broiled salmon, kale "chips" and corn), and am already in  my pajamas by 8 PM. I plan to take it easy tonight, maybe read a bit and watch the fashion coverage from the Oscars.

Here's hoping for Gemzar to be highly effective, well-tolerated and minimal side effects.

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.

New chemo

Navelbine, the current chemo I've been on for the past six weeks, isn't working. Yesterday's blood work shows my tumor marker continued to grow. Dr G has decided to have another scan and change to another chemo.

I will get a CT scan of my chest, abdomen and pelvis next week and then likely start Gemzar (gemcitabine) weekly. It's supposed to be as well-tolerated as Navelbine and appears to have similar side effects. such as flu-like symptoms(muscle pain, fever, headache, chills, fatigue); fever (within 6-12 hours of first dose); fatigue; nausea (mild); vomiting; poor appetite, low blood counts and the rather odd side effect of skin rash.

The increase in tumor markers comes as no surprise to me. I'm frustrated that none of these four chemos (Abraxane, Doxil, Adriamycin and Navelbine) have had much impact on my cancer. Well, we don't really know about the Abraxane, because Dr G took me off it after a scan revealed liver mets that we didn't realize existed. Going back on Abraxane remains an option.

Evidently there is another patient with the same disease progression as mine, who has responded well to Gemzar. So I'm hopeful that this one will do the trick -- highly effective, manageable, with minimal side effects.

Meanwhile you can think of me as the Energizer bunny of chemotherapy. I just keep plugging along!