Thursday, December 2, 2010

Our Short Stint at MDA

I've got to quit getting my hopes up.  I knew Jesus didn't work at MD Anderson, but I guess I was still hoping for a miracle.  (Actually, I take that back...I have no doubt that Jesus works here...just in other ways.)

I don't really know what I expected, but, according to my mood, I must have expected a lot more than I got.

Just seeing the doctor yesterday was an ordeal. My time for registration was 4:00 and we were to see the doctor at 5:00. Since we were there early, we actually got in early, so things were looking good. I was measured, weighed, temp and blood pressure taken, stripped, then gowned from the waist up, brought a toasty warm blanket, and then parked in a room to wait.

and wait..........

and wait..........

and wait..........

We probably sat there for almost two hours. After driving all day and arriving early for our 5:00 (pm!!) appointment, this was seriously wearing on my last nerve.

After the first hour I was beginning to think we'd been forgotten, so David wandered out into the hall to find out what was going on. He found someone who checked for us and, of course, we hadn't been forgotten...doc had just had a "really tough clinic" that day and would be with us shortly.

Uh huh.

So we continued to wait. Eventually, we heard people saying their goodbyes and shutting things down out at the front desk and I know the nighttime cleaning crew was working in the rooms up and down the hallway. David nodded off for a good 20 minutes or more. We were exhausted.

After driving all that way, it's not like we could just get up and storm out, is it? However, when the doctor finally arrived, I kind of wished we had.

This is what we learned:

1)    Dr. Pusztai recommended a specific type of chemotherapy regimen. The exact same regimen that Dr. Nagourney from Rational Therapeutics recommended. The kind that my tumor had an "intermediate" reaction to...not ideal. Specifically, for anyone interested, the chemo drugs recommended are a combination of Gemsitabine and Carboplatin (or Cisplatin). As he said, this regimen has shown to be effective in a "subset" of Triple Negative breast cancers. That's the best they can do.

Triple Negative Breast Cancer is not common. About 12-17% of breast cancers are TN. There has not been a lot of study and therefore not a lot of drug choices in treating this type of cancer. TNBC has a very high probability of recurrence in other parts of the body. If it does recurr, things typically get much worse. The mortality rate of TNBCs is very high.

They are currently performing a clinical trial with some success for TNBC patients using something called PARP Inhibitors.  However, to qualify for this trial, one's TNBC must have metastasized.  I do not qualify, and, God willing, I never will.

2)    The fact that I am now Triple Negative as opposed to the ER+/PR+ shown on the original pathology report does not mean my cancer changed. It means that the original path report was wrong. Somebody at the Fayetteville lab screwed up. The group of MDA pathologists who looked at the original slides reported it to be triple neg right from the start. No mutations or weirdness...just really bad cells and a really bad path reading.

3)    The fact that, from the beginning, I had TNBC does not mean I was treated with the wrong drugs. In fact, the chemo I received would have been an appropriate regimen to try with TNBC. Sadly, it did not work with me, as it doesn't with about 2-3 percent of women. I'm sick of being in that minute percentage...except I do intend to be in the minute percentage of women whose TNBC never returns. Please, God.

4)    Doctor Pusztai recommended I get several scans, xrays, other images of various body parts to make sure the cancer is not elsewhere, which we do NOT expect it to be. These images will also be baseline images in case the cancer does reappear. Which it will NOT be doing. We were going to do this here and follow up with an MDA doc, but I have decided that these tests can all be done at home and read by my own doctors just as easily.

In fact, I am wondering why we were told to be here at all. This all seems like it could've been taken care of via phone and fax.

So, yes, I was a bit disappointed in the whole thing. He was not terribly encouraging and I really thought he would have more recommendations about what they could do for me here (whole person sort of, exercise, mental health, stress, sleep...the sort of thing I read in their literature).  I asked for an appointment with a dietician, counseling for stress and related issues (I really think this is making me crazy - I am becoming manic/depressive), and genetic testing. Today I was informed that the earliest appointments for these things would be after Dec. 15. Really?!  Why is all this not worked on before I get here? I can't hang around until the 15th!

We'll visit MDA one more time tomorrow to pick up paperwork to bring to Dr. Beck at home...recommendations for chemo and tests that should be run, doctor's notes, that sort of thing. Tomorrow evening we will head north to stay with my brother-in-law and sis-in-law in their vacation cabin in Rusk, then head back to good ol' NWA on Sunday.

I'm so ready to get back home and out of Cancerland. I do not like it here.

For more info on TNBC:
Triple Negative Breast Cancer Foundation


  1. Oh, Patti, I am so sorry to hear this. :( I had been praying for such a good appointment and good answers. It does make you wonder, "Why the heck did she have to drive that far to find out basically very little?" I have NO doubt you will be one of those "minor possibilities" who will defy the odds on this one! You are one in a million, one of a kind. We miss you.

  2. Patti, I so felt your frustration and disappointment as I read this. Of all you're having to take in, why did a 2-hr. wait in a gown have to be thrown in? Bleah. Hate it for ya. I'm so glad to have the privilege to do the greatest thing for you that I can do, and that is pray for complete healing; that all of this will just go away for good. A dear lady told me one time when we were going through this with my parents that when I was tired, wrung out and too beaten up to pray that she would stand in the gap for me. I promise to do that for you and David today and as long as it's needed. Have a warm, quiet and peaceful stop in Rusk.

  3. Patti,

    I am sorry to hear about your story at MDA. Know that I am praying for you daily and know that the Community members are as well. Seek God's peace and comfort in the mist of all of this uncertainty. He is with you.

    Have a safe trip home.

    Jeff O.

  4. Patti,
    So sorry to hear news that was not what we were hoping for. And I'm sad that I didn't get to see you. I appreciate your posts so we know WHAT to pray for specifically - clear tests and no recurrence. I hope you enjoy your weekend and have a safe trip back home.

  5. Patti,
    This happened to my mom at MD Anderson. I remember the horrible disappointment and thinking she went all that way for nothing. The disappointment is bad enough not to mention the exhaustion you must be feeling. If you are wanting to do the cleansing diet that Walter did, let me know. Still praying and believing for no more cancer cells! love you

  6. Still praying and believing for a miracle and hearing the glory you give God when you explain to others how you were in that small minority of that type of cancer and the way it reacts and then explaining that you are cancer free because our God still works miracles. At the same time praying for His peace and guidance as you walk thru this time and in all the decisions you face. Love you and hurt for you in this letdown. Can't even begin to imagine what it is like. Know that you are loved by many and many prayer warriors are bringing you before the Father's throne on a daily basis.

  7. Reba, Gwen, Jeff, Brenda, Shelly, and Kay,
    Thank you so much for your prayers. That means more than anything to me. I know that is why my lymph nodes were clear following surgery, even though my tumor had grown, so I know that is also what will kill any remnants of this horrid disease. And a part of me thinks that has already happened!

    Brenda - So sorry to miss seeing you when we were in Houston. It was a weird time all around. Hopefully we'll get together another time...under better circumstances! And maybe Gwen can come!! :) Wouldn't that be fun?

    Shelly - I've been thinking of Walter and his miraculous healing a lot lately. I'd love to know more about his diet. I'll send a message via facebook. :)