The Assertive Cancer Patient

More Test Results--Not So Good This Time

I had an appointment at my cancer center yesterday, to see a doctor and to get treatment, and also to get the last couple sets of test results. 

Dr. Lee is out of town--in Ireland, I'm told--so I saw Dr. Tolman, whom I like quite well. 

He gave me the results of the "Lance Armstrong test" that I had at the UW a couple of weeks ago and also of the PET/CT from last week. 

The LA test results were fine, which is weird, because I've been so short of breath, but Dr. Tolman did have an explanation. He said the most likely thing--since we've done all these tests and scans to check my lungs and heart and it turns out they are both in excellent shape for a 54-year-old woman with metastatic cancer--is that my cancer itself is causing the shortness of breath. 

And he used the term "tumor load," which I've heard before, just not in connection with myself.

To back this up, my most recent tumor marker, the CEA, was at 27, up from about 11 last time we checked. So I definitely have more cancer activity. 

Then, from the PET/CT, he was able to tell me that some of my tumors, including the one in my right lung, are larger than they were in January, and there are also quite a number of new spots, most of them tiny, and all of them in the bone. 

To top it off, I think some of my lymph nodes are now involved--this is new and I didn't quite understand it, so I will ask Dr. Lee about it next time I see him, which is three weeks from today.

To quote from the test results: "There is a new hypermetabolic subcarinal lymph node on image 87 ... A new hypermetabolic 7-mm AP window lymph node on image 85 ..." 

You get the picture.

My only worry in all of this is that any of the tumors in my spine might be getting large enough to press on my spinal cord--we're talking paralysis here--and the PET/CT doesn't show that kind of thing all that clearly. So I probably need a bone scan after I get home from Germany. 

Also, I have no pain anywhere, so Dr. Tolman seemed to think that I could continue with the present "chemo light" regimen until there was a more compelling reason to do a heavier chemo. So, as long as I can live with the stress of knowing about all these tumors, I can continue until either I am in danger of a fracture or a threat to the spinal cord, or until my shortness of breath makes me think I'm ready for chemo. 

We also talked about a couple of new or new-to-me drugs, and I'll blog about those at another time. One is in clinical trials now, but may well be approved within the next six months, about the time I may need it. 

If you're wondering how I am, I'm fine. This news isn't really a shock, so I've had time to think about all the "what if"s, and I haven't changed my mind about putting quality of life ahead of quantity of life. 

Definition, from the NCI Web site:

tumor load 

Refers to the number of cancer cells, the size of a tumor, or the amount of cancer in the body. Also called tumor burden. @ Jeanne Sather 2009.

Test Results

I've written several times recently about all the tests and scans I was getting during the past month or so, but I haven't yet said much on my blog about the results. 

One of my readers, someone who is fairly new to my blog, reminded me today in the most gentle fashion that she (and probably other readers) was a bit worried about me because I hadn't said anything. 

So, apologies for that. The news, what news I've gotten, is mostly good. I don't have the results from the PET/CT I had on Thursday, and I don't have the results from the exercise test I had at the UW a couple of weeks ago, because that doctor, the lung specialist, was out of town all last week and no one else in her office seemed able to give me the results. 

That's a bit annoying, but at the same time it is so "business as usual" when you're in the cancer world that I just don't let it get to me anymore. 

But the other tests and scans, when lumped all together, showed that both my heart and my lungs were in pretty good shape, in excellent shape considering that I've been poisoning myself on a regular basis for 10 years straight with chemo and radiation both. 

I do have some gastric reflux, aggravated (probably) by recent radiation to the spine and also by the Tykerb, which makes me nauseous. I'm trying "behavioral changes" as a first step to get that under control. That was my choice. I said no to the endoscopy Dr. Lee wanted, at least for now. 

And the CT I had of my chest and abdomen showed that my cancer was behaving itself pretty well--the bone mets were read as stable, and the met in my lung has grown slightly, which I am refusing to worry about. 

So that's it so far. I feel like it was a lot of my time and energy--and my insurance companies' money--to find out so little, but when I think about it a bit more, less is more in my case. 

I'll call tomorrow or Tuesday to try to get the last two sets of results, and if nothing much shows up there, the only thing left on my cancer radar screen in the near future is to decide what treatment I am going to do next. Not that I'm not getting treatment now, but I declined any more conventional chemo drugs, so Dr. Lee and I need to come up with a new plan. It's not likely that the Herceptin, zometa, and Tykerb will keep my cancer in check for long. 

Now, I can focus on my next adventure, which is a trip to Germany with Younger Son. We're calling it The Military History Tour, Part II. 

Because about four years ago, when YS was 14, I took him to Japan for a week and I let him choose all the places we visited, and they were, with one exception, all places that had something to do with Japan's military history. I was fine with that, because my goals were to spend time in Japan with Younger Son--and also to see some old friends there--and I didn't care all that much what we actually did. 

So we went to Yasukuni Shrine (which has a fantastic military history museum), Himeiji Castle (samurai era history), and Hiroshima (WWII). And one day when I was taking a rest day on the couch, Younger Son and the friend we were visiting, a military history nut herself, went to the Japanese Self-Defense Forces PR Center. That was a highlight of our visit for both of them. 

The only place we went that was non-military was Meiji-mura, an outdoor museum that covers acres of land and has a collection of Meiji Period (1868 to about 1912) buildings that were moved to the site from all over the world. It is amazing. My favorite is still the prison, and I don't even worry too much about what that says about me. Oh, and the Emperor Meiji's personal train car. That's also pretty amazing. Plush. Rich red velvet and lots of gold everywhere. 

Those of you who have been readers of this blog for awhile will recall that Younger Son and I took a train trip together last year. It makes me very happy that YS still likes to travel with me, and we do have a good time together. 

Older Son, on the other hand, hasn't wanted to travel with his brother and me since he was about 16, and there's not much I can do about that. The other night, he was acting like he felt a bit left out, but the reality is if I offered to buy him a ticket, he'd refuse. So I have to be OK with that, and I mostly am. 

Here's the link to last year's Mother/Son Adventure: Home Again, Home Again

@ Jeanne Sather 2009.

Doin' the 'Lance Armstrong'

Today I went in, finally, for what I hope will be the last in a long string of tests and scans intended to find out why I am so short of breath. This test, done at the University of Washington Medical Center, is jokingly called the "Lance Armstrong," because it is an exercise test done on a stationary bike. 

After some preliminary tests where I tried to breathe into a mouthpiece without gagging (not very successfully), I was hooked up for the Armstrong. 

I rode the bike for about 15 minutes at gradually increasing intensities while plugged in to 12 color-coded electrodes. I also had a blood oxygen clamp on my finger and a mask over my mouth and nose. A doctor took my blood pressure several times during the test, and the whole thing was feeding massive amounts of data into a computer.

We'll have the results in a couple of days. 

The whole thing was kind of fascinating (what does that say about me? I'm not sure), and I asked lots of questions. I was pretty proud that I could ride for as long as I did, but in the end, as it always does, the bike won. I was left gasping for breath and feeling slightly sick and dizzy. But the technician and the doctor were both really nice and didn't let me fall off the bike. 

After the test, I came home, made a sandwich, and then crawled into bed with a book. Stayed there all afternoon, dozing and reading, but then got up this evening to do a bit of work in the garden. Plus Connie needed some playtime, so we played catch with his tennis ball on the sidewalk.

A footnote on the UWMC: When I was first diagnosed, I came to the UWMC for treatment, and just entering that building raises my blood pressure, even now. Also, it is as much of a maze as it ever was--I got lost twice trying to find the room I needed for my test. 

Jeanne Sather 2009. 

Running Out of Options

I always knew this day would come, the day when I am running out of treatment options, but somehow it crept up on me. 

For those of you who don't know my cancer history, I was diagnosed with breast cancer almost 11 years ago. I had a local recurrence just a few months after finishing my first round of chemo, then about one year in clinical remission, and then the cancer came roaring back, this time in multiple sites in my bones.

My right arm was broken by a tumor. It wasn't pretty.  

Since then, I've been in pretty much continuous treatment. I've had radiation therapy five times, and more chemo drugs in more combinations than I care to remember. 

Recently, we found my first tumor in the soft tissues since my metastasis: a little tumor in my right lung.

My cancer is hormone-positive and HER2neu positive, and that has determined the drugs I've been treated with. One reason I am still alive is that I've been treated with Herceptin, Avastin, and Tykerb, again at various times and in various combinations, and these drugs have less toxicity than the conventional chemo drugs like adriamycin and Taxol, both of which I have also had. 

Since the lung met, however, my doctors have wanted to put me on combinations of drugs that included a light dose of one conventional chemo drug--first it was oral cytoxan, then it was gemcitabine, by IV. 

But I haven't been able to tolerate these drugs.

The parts of my body that have been harmed by chemo: GI tract, kidneys (just borderline functioning now), lungs, and possibly heart--we're still sorting that one out. Then there's the chemo brain--I can't multitask anymore, and I can't remember numbers. 

"Chemo toxicity" is the term for it. And 10-plus years of chemo is a LOT of chemo. 

So a few weeks ago I asked Dr. Lee if we could try a combination of Avastin, Herceptin, and Tykerb, with no conventional chemo drug. First he said yes, then he changed his mind. 

Avastin has a couple of potentially serious side effects: One is that if you get in an accident while on the drug, or need major surgery, you are pretty much toast, because you will bleed to death. No dental work either, while on this one. Avastin also causes high blood pressure, although when I was on it before we controlled this easily enough with yet another drug. 

For right now, the plan for the summer, which I am calling "Chemo Light," is for me to get just Herceptin (by IV every three weeks), zometa (by IV every six weeks), and Tykerb (oral, taken every day). But we know that this won't hold my cancer in check, so we are starting to look for another drug that I can tolerate. 

I may end up in a clinical trial, although I don't much feel like experimenting with my life right now. I kinda feel like I've paid my dues in the cancer world, and I've taken part in clinical trials in the past. 

The amazing thing about my situation is how calm I feel about it. I'm enjoying life right now, and feeling good physically. I just started a new exercise regimen, and the things that bring me joy are: my sons, my dog, my garden, my friends, and my blogging and jewelry-making. That's a pretty full life. 

I'm not stressed. I'm not depressed. And not even close to a meltdown. 

I can't really explain this, except to say that I've been in medical crises so many times now that I don't seem to be able to react to yet another one. Kind of a same-old, same-old feeling, although I'm the first to admit that it's a bit weird. 

Burned out on crises, maybe? 

As always, I am not seeking advice or suggestions. Please do not e-mail me to suggest a treatment regimen or drug. E-mails of solidarity and support are welcome. Thanks. 

@ Jeanne Sather 2009. 

 

Catching Up With Myself

Well, I finished my two-week marathon of doctor's appointments and tests, and I really can't recommend that strategy to anyone--it was tough. By the end, I simply wasn't able to absorb any more information, which is why I haven't blogged about Thursday's and Friday's events yet. 

And I think I'm going to skip over most of those events here, and just say that Dr. Lee and I agreed on a new treatment plan on Friday subject to Medicare's paying for it. The new plan, I'm calling "chemo light," is only targeted therapies, no conventional chemo. 

So the drugs I will be getting:

Avastin, every three weeks, by IV

Herceptin, every three weeks, by IV

Zometa, every six weeks, by IV

And Tykerb, three 250 mg. tablets daily. 

Dr. Lee wants to do some scans, but the contrast is hard on my kidneys, which are functioning at a borderline level, so we'd like to not stress them any more than necessary. He was worried about the possibility of a pulmonary embolism, though, and was going to consult with my lung specialist to see what she thought about the risk of embolism vs. the risk to my kidneys. 

Guess I need to call and see what their advice is about that. Or I could wait three weeks till my next appointment with Dr. Lee ... 

Another disturbing bit of information came out of Friday's appointment with Dr. Lee: The "chemo light" plan assumes that I get regular PET/CT scans to keep tabs on my cancer, but Dr. Lee said that Medicare only pays for ONE PET scan a year--something I didn't know. 

So now I have to decide how to tackle that problem--because I had my last PET/CT in January, but we'd like to do another one this summer. Has anyone else run into this problem with Medicare?

I figure my options are: Fight Medicare. Hold a bake sale. Scream at the universe. 

Meanwhile, I had a great holiday weekend, which included hours spent gardening, including getting most of my vegetable starts into appropriate containers, a couple of long walks with Connie the Wonder Dog, and a cookout with Car Guy and friends on Memorial Day. 

Everyone but me ate ribs, and then we had corn on the cob cooked on the grill, grilled mushrooms (done in foil packets with soy sauce, butter, and garlic), and cheesecake. This was at Car Guy's house, since he has a grill, and I took the kitten, Wilber, along for entertainment. 

A great time was had by all. 

@ Jeanne Sather 2009. 

Two and Three Down ...

I'm more than halfway through my two-week marathon of doctor's appointments, tests, and scans, and yesterday I had a two-fer: an appointment with my therapist followed by a repeat visit with my new lung specialist. 

Since the brain MRI has ruled out brain mets, and the cardiologist told me on Tuesday that my heart was fine, I figured we were getting close and the lung doctor would be able to tell me what is causing my shortness of breath. 

But no, that would be too easy. 

My lung doctor, Dr. Lynn Keenan, said she doesn't know what is causing my shortness of breath. Still. Yet. 

So that means more tests, and she recommended a test that she called "the Lance Armstrong," because you ride a stationary bike while hooked up to wires and a breathing mask and the machine gives lots of technical info about how your heart and lungs are working. 

Also, given that Dr. Keenan doesn't know why I'm short of breath, she said we can't rule out heart disease yet, despite the almost-perfect bill of health I thought I got from the heart doctor. 

Confused? 

I was. 

Anyway, I agreed to do the Lance Armstrong, but said it would have to be after my trip to Nebraska, so that's one thing pushed off into June. 

Today, I see another new doctor, a gastroenterologist, and may be scheduling yet another procedure, one in which a scope goes down my throat to look at my esophagus, which was burned in my most recent round of radiation. It hasn't been the same since. 

I still have the paperwork to fill out for that appointment, plus I need to shower and get dressed.

See:

I Hate This!

One Piece of the Puzzle

Knockin' 'em Down Like Ninepins

One Down ...

Knockin' 'em Down Like Nine Pins

That headline--Knockin' 'em down like nine pins--is the mental image I've created for myself to get through this week of nonstop medical appointments. 

I see myself just taking them one at a time, and knocking them down. It's a good image, strong, and I think it's going to work for me. 

Today is the cardiologist, so I'll get the results of the ECHO exam I had Monday a week ago. This is another new doctor, so a tiny bit of stress about that, but not too bad. 

Tomorrow is my therapist. I'll be talking about Deb, and losing her, and how vulnerable that makes me feel. 

Thursday--another new doctor, a gastroenterologist, and then a repeat visit with my new lung specialist. [Oops, just checked my calendar, and the appt. with the lung doctor is tomorrow, so that will be a heavy day.]

On Friday I wrap it all up with Dr. Lee, hopefully with enough info that we can make some decisions. I think I get treatment too--how is that possible? Seems like I was just in for treatment ...

Then a three-day holiday weekend. Not that holidays mean all that much when you aren't employed. But an excuse to hang out with the boys and Car Guy. Maybe grill something tasty. (No, I don't have a grill--that's Car Guy's thing.)

@ Jeanne Sather 2009. 

One Piece of the Puzzle

I called Dr. Lee's office today to get the results of my brain MRI (I wasn't all that worried, but why wait for these results when they have them?), and got some good news for a change:

No brain mets. 

Like I said, I wasn't all that worried, but once the suggestion was made, it's hard not to think about it. Vomiting can sometimes be caused by brain mets, Dr. Lee had told me. And I've been vomiting lately. (Isn't this fun?)

So that's one thing eliminated. Not sure how many possibilities are left ... Not sure that I care to count them up, either. I'm just going to bask in this small piece of good news. 

Younger Son is coming home with a friend today to go out to dinner with me, and I think Older Son will be joining us as well. We're going to the Sunlight, a vegetarian restaurant where we've been eating since I was pregnant with Younger Son. I like to think that my superior nutrition during my pregnancy resulted in the excellent health he enjoys!

@ Jeanne Sather 2009. 

Anyone on Ixempra?

When I saw Dr. Lee last Friday, he had a new drug to propose to me: Ixempra (generic: ixabepilone). 

Now, I don't think I'm going to take this one, because I read the list of side effects, and it's a long and nasty one. But I'd be interested in hearing from anyone who is taking this drug or has taken it in the past. My most important question is: How well did you tolerate it--Was it a tough go, or a walk in the park?

Here's the explanation of the drug (All Greek to me): Ixempra (ixabepilone) is a microtubule inhibitor belonging to a class of antineoplastic agents, the epothilones and their analogs. The epothilones are isolated from the myxobacterium Sorangium cellulosum. Ixabepilone is a semisynthetic analog of epothilone B, a 16-membered polyketide macrolide, with a chemically modified lactam substitution for the naturally existing lactone. 

Yeah, right, got that.  

Here's that list of side effects:

Peripheral neuropathy (Had that, with Taxol, it's nasty)

Fatigue

Myalgia/arthralgia

Alopecia (hair loss)

Nausea

Vomiting

Stomatitis/mucositis

Diarrhea

Musculoskeletal pain

Plus sometimes:

Hand-foot syndrome

Anorexia

Abdominal pain

Nail disorder

Constipation

That really doesn't fit with my plans for a good summer, so I am pretty sure I'm going to say "No thanks." I want to try the combo of Avastin (which I've had before, with minimal side effects), plus Herceptin and Tykerb, both of which I am taking now. 

Of course, we can't make a decision until all the results of my present round of testing are in and we know if I have a heart problem or a lung problem (caused by chemo and radiation, natch). If my heart's been damaged, then I may have to go off both the Herceptin and the Tykerb ... 

Along with all the junk mail I'm plowing through this morning, I found a letter telling me it is time for another mammogram. Guess I'll take that in to Dr. Lee and see if he wants me to get a mammo or something else. This would be for my left (and only) breast, of course. 

@ Jeanne Sather 2009. 

Terminal? Not Yet

I have the most amazing online friends. This definition of terminal illness came to me from Julie, a reader and fellow traveler who lives in Canada. 

She had an appointment with her oncologist recently, and, among other things, this is what he said about her metastatic cancer:

Finally, he said something amazing.  When I referred to my disease as "terminal" he corrected me:  terminal disease is when there is nothing we can do for you.  Your disease may not be curable, but it's treatable. There are many many things we can do.  That comment gave me an amazing lift and a little attitude correction.  Like you, I've got summer vacation plans and a project that needs working on. I need to try and focus on that. 

 I couldn't agree more. The words we use do make a difference. 

See also:

Ted Kennedy: Terminal Cancer or Incurable Cancer?

Great Quotes from Cancerland

Need a Snappy Comeback? Try One of These

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