Sunday, December 28, 2014

Follow Up at MD Anderson and the Holly Daze

We finally did get the debacle at MD Anderson straightened out.  And they were falling all over themselves with apologies.  That's fine and good, but it still meant another trip there.

We drove down on Monday, and had a day of tests and doctor appointments.  Received some good news too!

They had performed their own tests on the sample taken for biopsy in June.  The results from that in conjuction with the PET scan done in November indicate there is NO DLBCL, contrary to what we had been told for the last few months!

That's fantastic news. 

There still is the follicular lymphoma which has become unresponsive to current treatments, however there are several studies and trials happening that the doctor has submitted the information to.

After the new year we will go back and find out what treatment plan he has come up with and which study we will participate in.

In the meantime, he said he doesn't believer Tex to be in any immediate danger.  He'll feel like crap (and he does), but as soon as we hear back from the studies, we'll head back to MD Anderson for testing and start on the treatments.

We had a fantastic Holiday at our house.  Tex and I got engaged on Christmas Eve!  We are both so excited and happy.  A house full of nieces, kids and grandkids made for a very jolly holiday.

We'll update with wedding planning as it comes about - we're not in any rush, and want to see what this next round of treatments has in store for us!

Wishing you all health and happiness in the New Year!

Monday, December 15, 2014

Consultation at MD Anderson

I should have known better than to schedule the first trip here on a Monday.

We got to the appointments on time and were able to find the Lymphoma center just fine.  The waiting room was HUGE and packed already - wall to wall - standing room only.   As we checked in we found out there was a "bit of a delay" because the computers were down.

After waiting over 3 hours we finally did see the doctor.  Here's what he had to say:

The follicular lymphoma has turned into the aggressive Diffuse Large B Cell Lymphoma (DLBCL). Since Tex has gone through chemo twice -  first go-round he had the CVP treatment, which is one standard treatment they use, and this last time with the modified R-CHOP - the other standard treatment, it wouldn't really do any good to repeat either one.  If we had to, we could repeat the CVP... but there's a chance it wouldn't work, especially since we're now dealing more with the DLBCL, than the follicular lymphoma.

There are currently 3 clinical trials going on, two of which are showing great promise.  (Ok, so that eliminates one already).  So he is sending out emails to these 2 and will see which comes back.  That will mean
1.  the treatment will be free since it's part of a clinical trial.
2.  We'll have to make the drive to Houston, at least once or twice a month, for the foreseeable future.

We're still waiting for a few ducks to get into a row.  There was an issue with the insurance -- which I talked to and it's OK until I get back to my records at home, so that small fire is still smoldering, but won't turn into a greater alarm fire.  Another issue is the request for the last PET scan they tried to pawn off on us, but the request has to come from them, so waiting to hear back that they received that information.  The next issue is when we go back -- they didn't tell us exactly when our next appointment was -- it'll either be Wednesday or Thursday -- but we're supposed to have it on an online patient portal, and it's not there. So... we'll have to get that figured out tomorrow. It may be they are waiting to see when the scan information gets in.

The one thing we do know -- we have Tuesday as a rest and recover day.  There are a couple museums we want to see, but for the most part, we just want an easy, restful day.  

Friday, December 5, 2014

Scan Results

We got the scan results on December 2nd.  It wasn't what we wanted to hear.

The scan looked about the same as the one done at the half way point.  Except one area in his abdomen looked a little worse.

The answer on what type of B Cell lymphoma we are dealing with in addition to the follicular lymphoma, went unanswered, mainly because they haven't checked.  They don't KNOW what type of B cell, other than an "aggressive lymphoma".

The options given  were to be seen at MD Anderson in Houston, and see a specialist.  This was beyond the realm of ability for our general oncologist to handle. He has repeatedly said this is a difficult case.

2nd and 3rd options were to do maintanence chemo, for an undetermined amount of time, but the chances of any change was slim.

4th option was to do nothing, which wasn't an option.

So, as of now, we are set up to see a Lymphoma Specialist at MD Anderson on the 15th.  It's a week later than the doc wanted, but it's the soonest we could get in.   There's no guarantee the insurance paperwork will be done by then, we'll have to keep an eye on that and make sure things are pushed through.

 From what I've been told, we'll be there for about a week or so.  No more than 7 days, so at least we'll be back home in time for Christmas.

The game plan right now, is a battery of tests, which may include another bone marrow test.  That will be needed if he is eligible for a stem cell transplant.  I believe that is the direction this is all headed.

So, we're back in the wait and see mode. Waiting for paperwork from the insurance to make sure we can keep the appointment, and then wait and see what the test results show.

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