I'm a Believer

Well, I couldn't get any of the I'm a Believer lyrics to fit what I want to say, but I'm stickin' by the title because yesterday's visit to a new oncologist made me a believer in second opinions.

Where the first oncologist that we saw in February had an office that was beautiful and homey, its parking lot vast and free, this new oncologist who asked to be called Jeff has a sterile office downtown in Hecticville where parking is survival of the fittest.

Where the first oncologist was a pretty good listener and didn't shout Michael out of his office when he heard that Michael is going to do this his own way, Jeff was an excellent listener who also didn't go into convulsions when he heard about Michael's current course of treatment.  Not only did he listen well, he asked good questions about Michael's life - to get to know him as a person.

Where the first oncologist recommended R-CHOP - acting like treatment would be no big deal -and wasn't open to conversation about an adjunct treatment our friend underwent, due to a recommendation from a well-known doctor at Stanford, Jeff gave good reason to do Hyper CVAD, followed by a stem cell transplant.  

Heavy-duty stuff, this treatment plan. 

But Jeff is willing to stay with Watch and Wait for now, since Michael is doing so well. This means that Michael will be seen every two months, in order to monitor things.

Even though there are issues of distance, parking and lack of beautiful feng shui, Jeff wins in my book.  But I might not have known how good he was if we hadn't met with the first doc and if we hadn't had these last six months to learn more and more about MCL and its treatments.  (Jeff also comes with a bit better credentials for dealing with MCL, in my humble opinion.)

I'm intentionally not linking to sites that tell of the ingredients in the treatment plans above.  Today I started reading more about Hyper CVAD, and after a few minutes, I decided that if it (or R-CHOP) was a course of action I was planning on taking, I would have to put away my computer and just dive in to the treatment, completely enveloped in trust in the doctors and All-That-Is-Bigger-Than-Me.

Last night, I told Michael what an honor it is to be traveling this road with him.  Easy for me to say, I know.  I am not the one who at this time has the diagnosis, the current regimens governing my life, and the view of potential treatments lurking up ahead. I get to have my own challenges.  And those challenges are pushing me to change and open my heart more and more.  It's very uncomfortable.  But it's kind of awe-inspiring, too.

I'm in love, oooooh, I'm a believer!
Yeah yeah yeah yeah

Mantle Cell Chemo

It's interesting that, while Michael was undergoing his initial testing, the doctor, unbeknownst to us, sent blood to an OUT OF NETWORK LAB for almost $6000 worth of tests.  Out of network means out of our pockets.  (Stay tuned - we don't know how this story will play out.)

What's more interesting than the $6000 charge is the fact that, after spending so much of our money, the oncologist came up with the standard treatment that anyone can easily read about just by searching for mantle cell lymphoma treatment.  Instead of ordering up the blood tests, I sure wish the doctor would have just asked me what chemo protocol to recommend.  I would have come off looking really smart - and I could have given a discount and still charged $4000 for it.

The usual treatment for mantle cell lymphoma is called R-CHOP.  Here are the ingredients:

• Rituximab (Rituxan), one of a special group of drugs called ‘monoclonal antibodies’. It attaches itself to a special molecule called CD20 that is present on the surface of B-cells. It is the B-cells that become cancerous in many lymphomas. By attaching to this molecule, Rituximab inactivates the cancer cells and eliminates them. As it binds only to a very specific molecule present on B-cells only, Rituximab produces no ill effects on normal cells in the body.
• Cyclophosphamide, an alkylating agent which damages DNA by binding to it and causing cross-links
• Hydroxydaunorubicin (also called doxorubicin or Adriamycin), an intercalating agent which damages DNA by inserting itself between DNA bases
• Oncovin (vincristine), which prevents cells from duplicating by binding to the protein tubulin
• Prednisone or prednisolone, which are corticosteroids. 

The drug that interests me the most is the Rituxan, since it targets a specific molecule and doesn't harm the rest of the system.  Still, it's not a happy drug.  Most people have reactions to it, so the people who administer it have to go very slowly, especially the first time, while watching for any reactions.

After reading different stories about this protocol, I know that many people will also end up having a stem cell transplant at some point.

I am hoping that Michael will get a second and third opinion from different doctors.  For a number of reasons, we are not feeling committed to the oncologist that Michael first saw.  One, he told Michael that he answers emails - even has his email address on his business card - but he has not answered the two emails Michael sent him regarding the $6000 charge.  Two, he seems to have a lot of experience with chemo, but he is not impressive when it comes to the whole picture.  Example:  Literature that we have read and the oncologist that we consulted in Boulder both say that exercise every day is a must, but Michael's oncologist just said, "Sure. You can exercise."  Does he care about the patient's health or does he just administer chemo drugs?

Michael still wants to avoid chemo, but the way things are set up in this system, I think we need an oncologist in order to monitor the disease (I hesitate to call this a "disease" when Michael feels so disease-free).

Day nine of our home gigong practice and it's only getting better!

Things We Like To Hear

The doctor appointment went well yesterday.  Dr. Witta is a great listener.  Michael told him about all of the things he's doing to boost his immune system, and the doctor stayed completely open, never giving a hint of judgment.  He feels that, should Michael decide to do chemo, he is pretty safe to wait another eight weeks to start.  AND... this is the part that sounded especially luscious, if you are a person of the statistic-loving persuasion:  According to the doctor, Michael has an 80% chance of success if he takes the chemo train.  That is way better than we've read anywhere and better than the doctor had originally said.

Truthfully, Dr. Witta acted like this is just not that big of a deal.  Standard stuff, and you go about your life.

I think I'll try on that attitude myself.

Another photo of a huge photo at the doctor's office