Tuesday, February 12, 2013

Dr. Munster on the roller coaster

Sunset and hint of a
retreat house in Lake County.
Yesterday, Nancy, Trebor and I talked to the director of early phase clinical trials at UCSF, Dr. Pamela Munster. It's hard to know what to say about it, partly because initially she was so intense, and not in a pleasant way. (Oncologists are amazingly stressed out. I would love to teach all my oncologists to meditate!) The operation also seemed rather disorganized.

On a non-cancer related note: During the preliminary blood pressure tests etc, I found out I am an inch shorter than I used to be! Which totally bummed me out. I thought that was supposed to start when you're around 70.

Yoga! Yoga! Yoga!

And now, back to the malignant main event.

Dr. Munster was convinced that my cancer, while it may have been "rapidly growing" at one stage, can no longer be described in this way, because I still have no symptoms. She said that the Carbotaxol chemotherapy I did must have continued having an effect of slowing the growth. I am inclined to think that other things I was doing slowed the growth. Of course there no proof either way.

The canceling of my "rapid growth" status was encouraging, however, it was based to some degree on my recounting of scans from memory. There was some confusion, as they could not seem to decipher my medical records, they apparently did not get the report from the January xray, and I cannot necessarily remember correctly when I got what type of scan. Plus, Dr. Munster appeared to despise xrays. The experience would have been a lot more satisfying if before the meeting someone had checked in with me about what info they needed, or if I had proactively inquired.

So some of her assessment may be based on my faulty memory. But people with tumors in their lungs can go down quickly apparently. My oxygen absorption is 98%, same as it's been for the last year. I told her (from memory) how much the nodules had grown in the January scan and she said it doesn't even count as growth. (Only a 20%+ increase in size means anything.) She was also emphatic that you can't tell anything about the growth of nodules from xrays. This page would have been super useful to look at.

Waiting for Godot with Trebor
(in Dr. Munster's office)
We got some pretty interesting information about current early phase clinical trials, especially one that is in pill form called CC-115. (The other one for you geeks out there was a Paclitaxel combined with a macro-phage inhibitor. Wheeee!) I do not see any reason to do a clinical trial, unless someone can tell me it's likely to work better than anything else. Also, Phase 2 or 3 clinical trials are usually specific to certain types of cancer, which in effect eliminates me, and Dr. M said there were practical disadvantages to having a rare type of cancer in a phase 1 trial. She said something like, You'd be likely to be randomized against nothing. Have a vague sense of what that means, but it doesn't sound good.

If/when it gets to the point where I'm choosing a chemotherapy, unless a drug for metastatic vaginal adenocarcinoma miraculously appears, I'm going to choose the one with the fewest potential debilitating side effects, none of which will be neuropathy. I haven't really heard of any better criteria for choosing a chemotherapy in my particular case, since what might work seems to be anyone's guess.

Dr. M said she would do a new biopsy. One reason is that the genetic markers on the metastases can be different from those on the original tumor, which I didn't know. (Lung biopsy carries a small risk - .5%? - of collapsing a lung. Danamaya says they can fix it!) I also couldn't remember what the results of my tumor sequencing had been. Apparently that wasn't in my records either. Nancy remembered that the original tumor is "HER2 negative" which is to do with hormone sensitivity. I didn't remember "positive for EGFR immuno-histo chemistry." They can do tumor sequencing on 300 common mutations. Of course when I asked if the genetic info about each of the mutations is actually useful, she said no.

It is astonishing to me the amount of information someone with cancer, or anyway someone with a rare cancer, is expected to retain and analyze. Talking to oncologists is really more like a massive rapid-fire science brain dump in which they give mountains of often undigested information and one is expected to make sense of it somehow. A friend of Trebor's who is an internist said ideally they would help you with the decisions, or ask how they can help with the decisions. He teaches at UCSF/SF General and works with palliative care and hospice and I'm sure is a wonderful communicator with patients and doctors.

She listened to my lungs and, like Dr. Nelson a month ago, said they sound clear and healthy. Her basic message after an hour and a half of talking about stuff (first half hour to a resident) was pretty much, You're healthy, get outta here. Come back when you can bring CT scan images over a six month period, and cancer symptoms to go with them!

By the end, she was very nice and friendly. It was very interesting getting a completely different point of view on my case, however, I don't imagine I will go back to her. Of course if I did go back to her I'd make sure all the ducks were in a row and she'd likely be much less surly. Fact is, no doctor has, or professes to have, "the answer". They have different personalities and approaches, but they all have roughly the same data.

In any case, it was good news. I am very cautious about getting back on the "everything is fine" and "everything is not fine" roller coaster. All information applies only to now and maybe the next month or two. But it seems at this point that I maybe have a bit more time than I thought.


  1. I was just thinking, as I plan some upcoming medical tests, about preventive health, common diseases, fear, preparation, letting go, etc. There's so much out there about screening for breast cancer (didn't you blog about it once back in the day?) Breast cancer becomes the Thing, and then something else comes instead, something we could have never predicted. I don't know what my point is. Oh, another thought: I wonder if being in a clinical try would somehow benefit other people with vaginal cancer? Like there would be another record of this rare occurrence somewhere in the medical literature. But even so it might not be worthwhile in other ways.

  2. Interesting. As far as I know they don't keep data about what type of cancer people had in clinical trials. Esp. in phase 1, all they are doing really is determining the maximum dosage that people can tolerate. (Even if it were but it were going to be of no benefit to me personally I really doubt I would do it. Side effects ominous!)
    Thanks for your thoughts....xx