The Assertive Cancer Patient

I Need Some Time Off

Yesterday I had the final-final cyberknife treatment, to kill the tumor in my sixth rib on the right side. 

 

Over the past several months I have had huge doses of radiation--four separate series of treatments--and I'm beginning to understand the term "radiation sickness," usually applied to the hibakusha who survived the bombings of Hiroshima and Nagasaki. 

Not to get too dramatic about the whole thing, but my body has taken a major beating, and now I need to heal. Part of that will be simply doing less, every day, until my energy rebounds. As a result, I won't be online much for the next week or so, and I will be skimming through my e-mail, but not answering most of it. Sorry. 

I spent several hours working in my garden this morning, with the faithful Connie playing alongside me, and that was good. I'm still a bit wobbly on my feet, but getting better every day. And emotionally I am very strong, so please don't worry about that. 

Now, it's time for me to settle down and watch a movie. I rejoined Netflix, and I have to say it's much improved over the last time I had a membership. I love being able to watch online on my MacBook, which was a service they didn't have two years ago. And I'm done with Hulu for good--all those crappy commercials! 

A package just arrived from Cynthia, a dealer in vintage beads and jewelry making supplies, and everything she sent me is so  beautiful that I'm tempted to start work on some pieces right away. But I'll wait. I make mistakes when I'm tired. But that's my plan for the holiday weekend--stay close to home and play in the garden and with my jewelry projects. 

The next step: getting enrolled in a T-DM1 clinical trial, either in Seattle or in LA. I see Dr. Lee the First tomorrow, so we'll be talking about that. Wish I could put it off for a week or two, but I can't. Sigh.

PS: The frog is me. 

 

@ Jeanne Sather 2010. 

 

 

More on T-DM1

Well, as a woman with advanced breast cancer who HAS RUN OUT OF TREATMENT OPTIONS, I have to disagree with Breast Cancer Action on this one. 

See the letter re: T-DM1: T-DM1 Breast Cancer Action Letter

I understand the arguments the group advances, I even agree with them up to a point. But the whole approval process is incredibly long and cumbersome, and getting drugs outside that process--despite what you might think when you hear the term "compassionate use"--is almost impossible, in my experience. 

As I said in an earlier post, I don't think this will hurt my ability to get the drug in a Phase II trial. There is a trial opening here in Seattle soon, unless this news somehow makes the folks at the UW less enthusiastic about getting the trial through their own approval process. But I don't see why that should be. 

I know the risks associated with this drug. (I haven't posted them yet, but I will.) There is a very long list of quite nasty potential side effects. I also know that some women have lived for a year or more on this drug and others have seen their cancer go into clinical remission. I'll take my chances.

See also: T-DM1

@ Jeanne Sather 2010. 

T-DM1 News (???)

I'm not sure what this news item about T-DM1 means for me, if anything. T-DM1 is the new drug that I plan to get in a clinical trial once I've finished my current cyberknife treatments. 

I think it's the right drug for me--pretty much the only drug, really--and there is a trial opening at the UW/SCCA soon (although THAT is held up in a committee, I'm told). 

In any case, the drug maker failed to win "accelerated approval" for T-DM1, "because all available treatment choices for metastatic breast cancer ... had not been exhausted."

Well, here is one woman for whom all options HAVE been exhausted. But I'm not going to panic, because I don't think this news affects the clinical trial, but it might affect how soon the drug is available outside of a trial. And of course if it works for me, I'm going to want to be able to get it. 

I have an appointment with my medical oncologist, Dr. Lee the First, in a week or so, and I'll dump this one on him. 

Read: No FDA Fast Track for T-DM1

Read more: T-DM1

Feeling cynical about drug companies? You're not alone. Genentech will lose an estimated $1 billion a year in sales of Avastin, now that its effectiveness in treating breast cancer is in doubt. Gotta make that income up somewhere. 

@ Jeanne Sather 2010. 

Back to the Cyberknife

Today is the first of five treatments in my third series of cyberknife procedures. 

OK, let's stop and think about that for a minute ...

In January, I had a series of five treatments to my skull. There was a tumor there that was pressing on a nerve that controlled my tongue. It was the first tumor I've had north of my collar bone, ever, and so it got my--and my doctors'--special attention. 

Important to note, however, that this was NOT a brain tumor. Just another "bony lesion," as they say in my reports. 

Then, in early August, I had a series of three cyberknife treatments to zap a tumor in my spine that was moving in on the spinal cord. See: Very Quick Update

That series was, I am happy to report, uneventful. No problems, no side effects, except for excessive talking due to the decadron. I really noticed it that time, and found myself apologizing for talking 2,000 words to the minute (about double my normal speed). 

And now, today, we start the more complicated of the procedures, to treat a 7-centimeter (about 3 inch) tumor that has taken over my sacrum (the bones below the spine and above the tail bone). There are nerves there that run down the legs, and these were pinched by the tumor. I was experiencing numbness and tingling, especially down the left leg. No loss of motor control yet, thank goodness. Or perhaps just a little bit. 

Oh, and then there's the tumor in my ribs that decided to act up this past week. Incredible pain--I won't even go into that here, since Dr. Lee the First got the pain under control for me when I saw him on Friday. 

This tumor has been radiated before, several years ago, but it has apparently come back (Note to self: Ask Dr. Eulau how this can happen. It's happened to me several times, and I thought radiation killed tumors DEAD). 

Anyway, Cyberknife Guy thinks he can get it with just one zap. So that will be, I guess, a total of four cyberknife treatments this year. 

You might be wondering why I'm getting cyberknife and not conventional radiation. I've had some of that too, recently. Twice, in fact, both times to the right femur and hip. But the problem is most of my body has been treated with conventional radiation, and you can't do it twice in the same spot. 

Hence, cyberknife. Plus, the cyberknife is targeted, which means less damage to surrounding tissues, and I don't need any more tissue damage, thank you very much. 

T-DM1 Update

For those of you who were wondering what is happening with the clinical trial of T-DM1, that's still part of my plans. But I have to finish the cyberknife treatments before I can get the first dose in the clinical trial. In fact, I have to wait 28 days after cyberknife finishes to get the first dose. 

The trial is going to open at the University of Washington/SCCA, although it has been delayed a bit. The word now is "September," but I think that may drag out longer. However, I know the principal investigator, Julie Gralow, and if anyone can get a trial up and running in a timely fashion, it is Dr. Gralow. 

If necessary, I can go to California and start the trial down there, but I would so much rather not do that--the time and cost alone are prohibitive for me. But we'll see. The most important thing is to get that new drug on-board before any more of my mets start getting frisky ... 

Read more:

Cyberknife

T-DM1

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@ Jeanne Sather 2010. 

Quick Update

The daily radiation therapy to my right femur continues, and I'm getting tired. 

I don't know if my fatigue is from the radiation itself, or from having to make the daily trip to the cancer center. I have several friends who drive me to appointments, and sometimes I drive myself. 

However, the last of my 20 treatments is August 3, so that's coming up pretty quickly.

In the meantime, I'm waiting to hear back from the person who has to schedule me for the next steps in my cyberknife treatment to my two largest tumors. I need a consult appt. and then an appt. to have the actual procedure done. (This is the placing of little gold seeds to guide the cyberknife.)

I wish we could just skip the consult and proceed directly to doing the procedure, especially since Cyberknife Guy (Dr. Brian Lee) has already explained it to me. Maybe I can suggest that when the scheduler calls me back ... 

In the meantime, I've seen Dr. Eulau, who is just back from a week in Paris, lucky guy, and is in fine form. He and I are on the same page, and he is really glad that Cyberknife Guy agreed to treat both these tumors with cyberknife. It should be much easier on me than conventional radiation.

What else is happening? I'm on decadron now, which is helping with the weird sensations and weakness in my legs caused by the tumor in my sacrum (I now know more about my sacrum that I ever cared to--that's all I'm going to say about that!).

Also, a friend and former student who recently returned from a couple of years in China with her family offered to loan me her 10-year-old daughter to help out twice a week, watering my garden and walking the dog. She's used to dogs, but we still have to get Connie under control, so we'll be training him in the yard a couple of times and then walking him together once or twice before I send her off on her own. Sweet kid--I love girls at that age!

I need to apologize yet again for falling behind on e-mail. I'm having trouble keeping up with e-mail from my closest friends, let alone strangers, PR people, and people with questions ... I will try to get to that on Friday morning. 

PS: Today's breakfast: Half a dozen baby carrots, a handful of peas in the pod, two cherry tomatoes, and a couple of blueberries. All eaten fresh from the garden, of course. 

@ Jeanne Sather 2010. 

Cyberknife Guy Is My New Hero

Cyberknife Guy has come through for me, and I think he's my new hero--at least this week!

He has agreed that the two most dangerous of the tumors that are threatening me, one in my spine at T-9 and the other a huge puppy in my sacrum that is causing loss of sensation and weakness in my legs, can both be treated with cyberknife. 

He also agreed that he could treat both of them at the same time, as long as I was willing to lie on the table for that long. No problem, I replied. Let's get this done! 

Next step? Get me in to have some "gold seeds' placed around the tumor in the sacrum to help make sure the radiation is hitting the target perfectly.

We'll wait a week after that procedure for the tissue around the seeds to heal, and then I'll go in for another CT, this one on a machine that lines up perfectly with the cyberknife treatment robot. 

After that, Dr. Lee (Cyberknife Guy) and his team will spend a few days working on the mathematical calculations for my treatment, and then I'll start. Five treatments, one a day until I'm done. 

We are hoping to have this completed by mid-to-late August, and then I can get back to working on getting access to Genentech's new drug, T-DM1, which may be available in Seattle by then. I have a call in to the UW study coordinator asking about that. 

My medical team: My team has four members: my therapist, who prefers not to be identified on my blog, partly because she isn't taking new patients right now; Dr. Doug Lee, medical oncologist; Dr. Steve Eulau, radiation oncologist; and Dr. Brian Lee, cyberknife guy. 

These four all have excellent credentials and experience, and I chose them carefully. I trust them and feel safe in their hands. But even more important, they understand me. That is priceless. 

@ Jeanne Sather 2010. 

A Double Catch-22

What do you call it when you've been caught in TWO Catch-22s in one day?

A Catch-44? A Catch-22/22? Or just a damned mess?

I thought I was on a roll yesterday morning, making arrangements to fly to California for an appointment with the doctor, Dr. Ibrahim, who is heading up the T-DM1 clinical trial in Highland, California. 

I e-mailed the woman who will be making travel arrangements for my friend Monica and me. I e-mailed a hotel near the clinic to make reservations. And I e-mailed the study coordinator, Tricia Ramos, to ask her if she could make the appointments for the tests and scans I need to have done at the clinic where the trial is taking place. 

Tricia had already told me that the results of my tests and scans done at other facilities would not be acceptable, and I would have to have them repeated in Highland. She also told me that it would probably take two or three days to get these done. 

But when I e-mailed her to ask her to schedule them so that I could book my return flight, she said (THIS IS THE FIRST CATCH-22) that she couldn't schedule the tests and etc. until I had arrived in Highland and had signed the informed consent document in her presence. 

Think about that one for a minute. ...

How about I sign the document, which I already have, in front of witnesses--or even a notary public--and fax it to her? Nope. No dice.

According to Tricia, "the rules" require that I sign the doc after I arrive in Highland, and "the rules" also require that she not schedule my tests and so on (including an ECHO of my heart) until I have signed that document. 

She suggested that I plan to stay in the L.A. area for TWO WEEKS so that we could get all of this done. What happened to the two or three days she had told me earlier would be required to do the tests? 

So I mulled that one over for awhile, and then I thought that maybe I could go down on the 28th, as planned, see Dr. Ibrahim on the 29th and sign the informed consent doc in front of Tricia, and then fly home. 

One my second trip, I could get all the tests and scans and then also get my first treatment. Because presumably Tricia could schedule these while I was back in Seattle waiting for that first treatment appt. 

But before I could e-mail Tricia with this suggestion, she sent me another urgent message saying that I should not book my plane tickets or hotel until Dr. Ibrahim had a chance to check something with Genentech, the sponsor of the study and also the company that makes the drug, T-DM1. 

Now, I'm in the middle of four weeks of conventional radiation treatment to my right femur. I hadn't concealed this fact. In fact, I was the one who brought it up, because the documents that Tricia sent me about the study listed all the chemo drugs and other treatments that I would have to stop 28 days before my first dose of T-DM1. 

The document didn't say anything about radiation, so I asked, and I was told--and Dr. Eulau was told also during a phone conversation with Tricia last week--that 14 days needed to have passed between my last radiation treatment and my first dose of T-DM1. 

(HERE'S THE SECOND CATCH-22.) We counted on our fingers, and I was fine, but then Dr. Ibrahim had the idea that 14 days had to have passed between my final radiation treatment and the date that I was ENROLLED in the study, which would be July 29. He wanted to confirm that with Genentech, and that's why I was told to wait to make my reservations.

Now here's the punch line: The doctor was wrong. Genentech told him that 14 days needed to pass between my final treatment and my first dose of the new drug. We could have kept to the original schedule, especially if I only flew down for a day or two to see the doctor and sign the documents. 

Then I would have finished up my final few radiation therapy appts. and made arrangements for a second trip south to get the necessary tests/scans/etc. and also my first dose of the study drug. 

Annoyed doesn't quite begin to cover how I feel. I know, from my own experience and the many many stories I've heard from other cancer patients that screw-ups are to be expected with clinical trials, but this is not a confidence-builder, that's for sure. 

Next up: Time to do my due-diligence on this doctor and the clinic as well. Have they ever run a clinical trial before? I have no idea. Why did Genentech pick a clinic in the suburbs of LA that no one outside the local area has ever heard of? That didn't make sense to me from the beginning--what happened to all the major cancer centers that do clinical trials all day long?  Why not UCLA? 

Hitting a Few More Balls in the Air

I now have an appointment with Cyberknife Guy for Friday, and I will track down the discs with my scans before then. 

Other balls that I've tossed into the air this morning:

I e-mailed Tricia in Highland (she's the study coordinator) to ask her to schedule all the tests and scans I need to have done at the clinic in Highland when I'm down there next week. (I can't book my return flight until I know how long I have to stay.)

I e-mailed the woman who is arranging my flights, using frequent flier miles donated by a former student.

Finally, I e-mailed the hotel near the clinic in California that offers a special discounted rate to patients coming to take part in clinical trials and asked them to book me a room for three nights. After that, I will be able to stay with Megan, a friend and fellow cancer patient who lives in the L.A. area. 

Of course, Monica will be traveling with me, so I have to run all the plans by her to make sure they work for her too. 

OK, time to take a break and walk the dog. My helper Megan is here, so this is a good chance for me to get out.

@ Jeanne Sather 2010. 

How Crazy Can One Cancer Patient Get?

My good friend Collin just e-mailed me, and she suggested not thinking more than 48 hours in advance as I try to navigate my way through the swamp--complete with hungry alligators--that is my life right now. 

That's good advice, and I'm going to follow it. 

Here's the latest wrinkle in the saga. I have an appointment with the clinical trial doctors in Highland, California, for July 29. However, the daily radiation to my right femur will not be finished by that date. When I went in for treatment yesterday, I thought I was going to see Dr. Eulau for our weekly checkup, and I planned to ask him how he wanted to handle that--just shorten my treatment, or have me come in and finish it after I returned from California. 

That's when I found out that he was on vacation this week. 

Also, when I saw Dr. Eulau last Thursday, he told me he was going to send my scans to Dr. Lee the Second (Cyberknife Guy), to see if the two tumors we are most worried about can be treated with cyberknife ... but I had no idea whether or not they had talked or whether the scans had been sent. 

Dr. Eulau also said he was going to discuss things with Dr. Lee the First, my medical oncologist, but I KNEW he hadn't been able to do that, because Dr. Lee was out of the office last Thursday and Friday, and also yesterday. 

So where does that leave me? 

In the middle of a swamp, as I said. I woke up this morning wondering if I should postpone my appointment with the clinical trials doctor, or what. But that didn't feel right. 

Luckily, I was able to find Cyberknife Guy's e-mail address (on his business card, actually), and I shot him a quick e-mail asking if he had talked with Dr. Eulau. CG called me within a few minutes of my sending the e-mail and said he had talked briefly with Dr. E, but had not yet received the scans.

The state of play is this: I have an appointment on Friday to see Cyberknife Guy, and in the meantime both his staff and I are going to track down the missing discs with my scans. (They may well be sitting on Dr. E's desk ... I will find out when I'm over there today.)

@ Jeanne Sather 2010. 

Cheryl Comes to Visit

So how am I going to distract myself this weekend, when I am forced to take a break from making plans for the trip to California? 

Luckily for me, my friend Cheryl is coming to visit. She will be here in about two hours (So I guess I'd better shower and dress sometime soon). 

I'm trying to remember when Cheryl first contacted me--maybe a year ago, maybe not that long. She bought a jade bracelet from me that had a little vintage abacus charm on it. 

I met her for the first time face-to-face when Laurie and I made our recent trip to Portland, and we found we had a lot in common and a lot to talk about--cancer, yes, of course, but other things too.

The original plan was for Cheryl to stay here, but once I got the bad news she offered to stay at a hotel instead, an offer I gratefully accepted. 

We are going to have fun, in a low-key sort of way--working in my garden together (she is bringing her gloves and tools) and visiting a couple of plant nurseries, including the Chocolate Flower Farm.  

Portland Bound

Books From Powell's 

Cheryl Takes Neratinib

@ Jeanne Sather 2010.