Tykerb Fails!

For the past couple of weeks, I've been doing what my friend Teri calls "the scan dance." For a couple of weeks before that, I was dancing on the edge of a major depression, trying to keep myself from falling into the pit. (Been there, done that. Don't want a rerun.)

I was successful at avoiding the depression, with the help of my friends (you know who you are), Car Guy (extraordinary man), and my great therapist. I had that "waiting for the other shoe to drop" feeling that others living with advanced disease will recognize, and so when I went in to see Dr. Lee a couple of weeks ago, I was prepared to tell him I wanted a scan. It had been six months since I'd had one, which is a long time for me. 

Dr. Lee was ready for me, however. He told me that my tumor markers had been climbing over the past few months, and he wanted to scan me. So we were on the same page, but for different reasons. 

We talked about any symptoms I was willing to admit to, which included throwing up more frequently, and he was afraid that this might be a sign of brain mets (my personal nightmare, never mind that I know a couple of people who have been treated for mets in the brain and who are fine).

So this  what I agreed to:

PET/CT

Brain MRI

Spine MRI

I told the scheduler that I wanted to do these scans on the same day, back to back, to get them over with. (I knew from past experience that the folks at Via, where I get my scans, would try to say I had to have them on two different days).  The scheduler persevered beautifully, and I was scheduled to go in at about noon last Wednesday and get all the scans. I was done by 5:30, by the way.

That was fine. I have no problem lying still for hours at a time. One thing it did make me realize was how much weird radioactive glop you ingest before the scans--radioactive glucose by IV before the PET, barium glop, two bottles, to drink before the CT, and then another tracer by IV during the brain scan. 

Afterwards, I said something to Car Guy about glowing in the dark and setting off radiation detectors at the airport, and he--who was holding my hand at the time--DROPPED my hand. I think he was kidding.

Friday Results

So Friday I had an appointment with Dr. Lee to get the results of my scans. 

The good news: Nothing suspicious in my brain. 

The bad news: A new met in my right lung (So far, my disease has only been in the bones). Also some new mets in my spine and an old met in the spine that is growing. And a little met in my pelvis that has also been there for awhile. 

This means that my current treatment regimen (Tykerb, Avastin, and zometa) has failed and I have DISEASE PROGRESSION. Ugly words, those. 

We discussed several treatment options (and I took notes, as always), but I told Dr. Lee that I didn't want to make a decision that day. 

I need to see my radiation oncologist to see what he thinks about the mets in the spine--should I have radiation? I've had radiation therapy FIVE TIMES now, and I'm not crazy about doing it again unless absolutely necessary. Even though radiation kills cancer dead, other body parts get burned in the process. 

I also want to get Dr. Livingston's input. Dr. L is the godfather/guru of my treatment. I don't make a decision about treatment without consulting him. Dr. Lee trained under Dr. L and has no problem with this. 

Another big question is whether or not the spot in my right lung really is breast cancer (which is what mets are--the same cancer as you had at the primary site, in my case the breast, popping up elsewhere in the body) or if it's melanoma, which I've also had, or something else. 

We could just treat it, and if it goes away, then assume it was breast cancer, but since I've never had a tumor outside the bone, Dr. Lee would like a biopsy. This makes sense to me, except that I have to wait till early December for the biopsy because I've been on Avastin for several months. 

I also need to find the absolutely best doctor in Seattle at doing this kind of biopsy--sticking a long needle between my ribs and into the lung--because a bungler could collapse my lung. So I'll be putting some effort into finding this person.

Farewell Tykerb?

During the time I've been on Tykerb, which I started last Thanksgiving Day--yes, I did that on purpose--I've been in communication with a number of women, and one man, who have been on Tykerb, or who have tried it and couldn't tolerate it. Through our communications I learned that the average time to disease progression for women on Tykerb plus Xeloda was only six or seven months. 

So I've had a good run--more like 10 months to disease progression. Also I had it without the Xeloda, because I had tried Xeloda a couple of years ago and couldn't tolerate it at all. It was to date my all-time worst chemo drug experience. Toxic. Nasty. For me. Other women love it. 

As I said, I haven't decided yet which regimen will be next. I want Dr. L's input, and also my radiation oncologist's. Then I'll see Dr. Lee again in two weeks and we will make a decision. The new drug combo may actually include Tykerb, possibly with Herceptin and another conventional chemo drug as well. 

At this point, I'm stressed. Anxious. Worried about the tumor in my lung, although it is very small. And a bit worried about the tumors in my spine--are they moving toward my spinal cord? I would like to avoid paralysis, thank you very much. 

But I have been here many, many times before. Probably once a year on average since the time my disease spread to my bones, which was almost seven years ago. I know the drill. I know how to take care of myself.  And, weird as it may sound, I would rather be where I am now--with a known problem--than back in that "waiting for the other shoe to drop" place I was in a month ago, anticipating just this kind of bad news.

If you are a friend of mine, feel free to e-mail me. Don't be surprised if you don't hear back from me right away. I'm serious about the self-care and won't be online as much as usual. 

If you don't know me, you may not know that I am not open to receiving advice about cancer treatments or how to cope with cancer. Please do not send these suggestions my way. If you are selling something cancer-related, expect me to make fun of you on my blog if you disregard this request. 

 To read more about my experience with Tykerb, click here (then scroll down to see older posts): Tykerb

@ Jeanne Sather 2008.  

Comments

[nat]

I'm so sorry to hear this Jeanne. Big cyber hugs and light sent your way.

[Lisa]

OH Jeanne, I am so sorry to read this. I am sending positive energy and a big virtual hug. NOthing else to say really, but I'm thinking about you

[Jacqueline]

This is some crappy news. Very crappy and it makes me sad. Hugs to you, Jeanne. Long, warm hugs.

[Debutaunt]

Love from San Antonio. Z says she wants to come see you and that new Zoe kittens would make you feel better. love love. Take care of you. We're here.

[Melanie Haiken]

Hi Jeanne,
we communicated some time ago and I wanted to let you know I read this and am sorry to hear it; I admire your openness and am rooting for you as always. I plan to write about how we talk about metastases in an upcoming post and will let you know when I do. (my blog is part of the group Caring Currents blog though will soon spin off.) Melanie Haiken

[Carver]

Dear Jeanne,

I don't want to say the wrong thing so I'll just say please know that you are very much in my thoughts and heart.

As ever in friendship, Carver

[Deborah]

I don't know you...really. But, as a regular reader of your blog, wanted to say progression sucks and I'm sorry to hear this news. Sending positive thoughts and energy your way.

[jeanne Sather]

Thank you all. Much love from me to all of you. Jeanne

[Sue A]

You are one smart, strong lady. I'm sure this is a hard time, but I am glad you got a good run out of Tykerb, and keeping fingers (toes, too, if necessary, although the tamox tends to turn that into leg cramps) crossed that the next regime has even better results.
Your fan,
Sue

[MaryM]

Sorry to hear this, glad the progression isn't out of control at present.

Husband had a CT scan last week at a different place and all had to drink was Crystal Light. We don't know if they had a different machine or what. That was a pleasant surprise.

[Ann]

I am so sorry to hear Tykerb has failed. I am sending my best wishes to you & pray that your doctors will dig deep into their bag of treatments to find just the right combination for you.

[Rae]

Jean, I lurk on your blog occasionally. You are such an informed patient, I admire you for all the knowledge you've taken into stride about yourself and about seeking out the different treatment options.

Thanks for putting it all into words so expressively.

[anita]

I'm sorry to hear this, Jeanne. Big, warm, fuzzy hugs to you!

[Amorette]

Well, bugger. :/

[Amorette]

Well, bugger. I have to say I liked this situation a lot more when it was theoretical. :\

[Barb]

I just wanted to point out to you that Tykerb patients are treated after progression on Herceptin which is a much more difficult tumor to treat since the tumor has progressed on Herceptin. Tykerb protects the brain which Herceptin does not. Staying on Tykerb and then reintroducing Herceptin is now a new strategy that seems to give more promise. Dual targeted agents for the tumor..... Hang in there and God Bless.

[mutee]

my sister was on xeloda and tykreb and she is showing signs of disease progression only after 3 months can u suggest anything for us the doctor is not very helpful she was diagnosed with ibc 38 years old and the cancer is in her lungs no where else