Monday, March 12, 2007

Surprise, Surprise, Surprise

A funny thing happened on the way to the oncologist. Not funny as in "ha ha" or an evening at The Ice House or lunch with Paula, but funny as in surprising and unexpected.

I expected to start an 8.5 hour infusion of R-CHOP at 10 am today. I came prepared with my chemo companions, Cindy and Andrew, my Apple I-Book, a collection of DVDs, books and magazines. Cindy and Andrew had planned to read "The Notebook" to me during the infusion. (How clever I thought I was - providing entertainment for myself while getting my book-avoiding daughter to READ.)

But the books, magazines, DVDs and laptop were untouched. At 10:30 am, I learned that my chemo was cancelled. Before you start uncorking champagne bottles, let me explain. After closer examination of my PET scans, CT scans and recent MRI results, the team, led by the illustrious Dr. Stephen Forman, concluded that I need a more aggressive approach for my very aggressive mantle cell lymphoma (MCL).

They are recommending Hyper CVAD, a protocol that's highly toxic but highly effective. It requires that I check in to the City of Hope for four to five days of treatment, check out for two weeks and then repeat the process for a total of eight cycles. That adds up to about six months of my life filled with just one agenda item in my calendar: GET WELL.

The team is also recommending a stem cell transplant procedure immediately after the completion of Hyper CVAD, a process that requires a one-month hospital stay.

I had just come to terms with the effect that R-CHOP would have on my life and my calendar. But now I'm trying to wrap my brain around this concept of seven months of intensive treatment. At the moment, I'm in hyper research mode, reading everything I can find about Hyper CVAD and stem cell transplants. I'm also scouring the archives of the mantle cell lymphoma list serve for any mention of these two procedures and the patients' reactions. So far, a number of the "younger" (less than 60 years) patients have opted for this combo and have had overwhelmingly positive results.

I may fly to the MD Anderson Cancer Center in Houston, Texas, for a second opinion, but time is short. I'm scheduled to start treatment at CofH on March 26 and the doctors are uncomfortable with my putting off treatment any later than this. (I tried for mid-April, but I got the "What part of aggressive don't you understand" reaction.)

I'm in a bit of a daze. How can this insidious cancer be so aggressive when I feel so good?


maryalexnina said...

You Gomer Pile you!

Paula Johnson said...

Forget the second opinion! Everyone knows that City of Hope can kick the Anderson Cancer Center's butt!

So clear the decks, binge on your favorite chow, guzzle some Manhattans and then dive into Hyper CVAD with your full concentration and steely determination.

Oh, dear. There goes my new year's resolution to be less bossy.

Susan Carrier said...

Although I'm looking forward to two weeks of sushi and Manhattans before starting treatment and I practically idolize Dr. Forman, MD Anderson has emerged as THE place for us rare and exotic mantle cell lymphoma patients.

Karen said...

As a grateful recipient of a second opinion a couple of years ago that saved me from major surgery, I highly recommend them. Doctors get stuck in their own protocols and paradigms, so it never hurts to have a set of fresh eyes take a look at your situation.

That said, it's good to hear that the super-duper treatment is yielding excellent results. Hang in there.

Lilli said...

I like the idea of considering Get Well as your new job.

If you put as much effort into this as you do your other jobs, if this client gets the service your other clients get, you'll be back to sushi and Manhattans before you know it.

SAMO Calling said...

Okay, now that just ticks me off.
Git yer boots out Susan.....
Houston: Cloudy
Feels Like: 71°
70°High: 72° Low: 63°

PS to my previous post: This year's bathing suit fashions weren't that great anyway, right?

Michele Zack said...

I find it quite wonderful that all the skills you've picked up over the years (like how to expedite a bureaucrat-driven timetable) are in your toolbox to use according to all the wisdom you've accumulated over the same time. What do younger people do, besides rely on doctors and parents, when they get sick? You figured out a way to get your medical records in time for that second opinion without compromising CoH's chemo schedule. Go Susan!!

RickR said...

I am a fellow MCLer, diagnosed three years ago. HYPER-CVAD is as near a standard treatment as there is for this disease. Wherever you go, make sure the treatment includes Rituxan (HyperCVAD-R).

When and if you decide on SCT I highly recommend the GA BLOOD and MARROW at Northside Hospital in Atlanta. This the only place I know that does OUTPATIENT SCT .
You will find that the mental and emotional challenges of this journey are more difficult than the physical challenges of treatment. I just wanted to let you know that your life will return to (near) normalcy. I am back to working full-time.

Good luck,
God Bless