Finally an update

It's been way too long. Life has been way too crazy.  Here's what we last found out.

He's responding to treatments - there is a reduction in the size of the tumors in the lymphnodes, based on the CT scan done to date.  He has another one scheduled the first week of December.

December 14th will be the last treatment in the study at MD Anderson, and his last infusion of the ublituximab - that being said, he will continue on the trial medication afterward- 

The Dr. at MD Anderson says he expects to see remission some time around April.  He'll have a PET scan done sometime around then. 

All the treatments and drugs he's been on has caused some other side effects.  He's dealing with hormonal imbalances now, and trying to get the doctors and insurance to understand that it is affecting his quality of life in all aspects has proven difficult.  He isn't sleeping well, and that is a direct result of the hormones being out of whack.  It's the little nuances that cancer and treatments affect that are proving to be the difficult parts to handle and treat.

With the medications, and lack of sleep his cognitive abilities continue to be an issue.  We were released from the neurology section of MD Anderson with them saying there wasn't anything they could do about it.  Wasn't expecting a team of that caliber to basically say "suck it up buttercup" without anything more being offered.  Disappointed yet again.

However a lot to be thankful for this year -  the treatments are working.   His results have been included in many different presentations to the worldwide onocological stage.  Now to just get through the next one and get a handle on the different side effects.

Happy Thanksgiving and Merry Christmas!

The Battle Continues

It's been over a year now since we first started the testing routine again, and found out that Tex's lymphoma had returned.

Shortly after 4th of July he had started chemo up again.  It's been a year.  A really, really long year. Too many blood draws, and tests, and scans, and port being accessed, and hospitalizations. Battles with reactions to bug bites, and months of bronchitis and pneumonia, and reactions to medications....

In my purse, I have the CD of the latest CT scan.

... and can't do anything about getting the results until he goes back to MD Anderson on Monday.

He's gone through 6 months of aggressive chemotherapy which stopped working about half way through. And now 6 months of trial immunotherapies; which has shown improvement on the last scan 3 months ago.

 So now we're back to waiting.  His treatment routine changes up after this infusion on the 29th, He won't have another infusion until September. So we'll really get to see if the daily pills are working, or if the infusion is doing all the work.

One thing we found out, which was not explained to us at the start, this is a life long medication to keep the cancer cells in check.  The only way he would stop taking this, is if they do decide to do the stem cell transplant.  Which is still on the table, once he reaches remission.

There's a billion scenarios running through my head.  .... when he reaches remission.  Maybe he has.  He feels better for the most part.  There's still days, sometimes several in a row, that he stays down.  He's still anemic, we know that much from the blood work.  What if he hasn't?  Has this treatment stopped working too? What do we do then? I know there are more trial options...what if his insurance starts saying no....

And then, once I've worked myself into a tizzy with all the what ifs.... and now whats..... I remember.  Just for now.  Just for right now, this is where we are.  We've battled a year and if we have to, we'll battle another year.  And another, and as many as it takes to kick this cancer's ass.

Catching up...

It's been a whirlwind since we started the trial.  I can't say my opinion of MD Anderson has improved much.  After two conversations with the lady that handles the insurance approvals and referrals there, and hearing how much work it is processing our paperwork... I went off on her.  She's been a little more responsive since, but not much.  The trips to Houston have become almost routine. We keep our suitcase packed with what we'll need for the trip, have bought our own little coffee pot and bring decent coffee with us.  Packing up the car, unpacking when we get there- it's all on autopilot now -- even have a favorite diner to stop at for a bite on the way.

Tex is doing well on the study.  We've had to fight every step of the way though.  He had an unexpected -- and opposite -- reaction to the infusions than anyone else on the study.   He didn't have any kind of anaphylactic shock that we were worried about with it having the mouse DNA, but his blood pressure did spike to dangerous levels.  And trying to get them to understand this is NOT OK to just let happen and deal with the fallout then.. but to be proactive and prepare for it has been an uphill battle.  Even at this point going into the end of the 2nd cycle, they have not completed the notes so the nurses know what to deal with, and it's always an issue trying to get him into a room where he can be properly monitored.  Now at this point, they anxiety of having to deal with them is enough to increase his (and my) blood pressure!  They did finally adjust the infusion rate and the last two infusions went better, there was still a spike but not to the point he needed intervention.

Overall, the biggest toll seems to be on his cognitive abilities.  We did see a neurologist.  He's having a hard time with "chemo-brain" and coming up with the words to communicate his thoughts.  Says sometimes they are just there.. but they can't come out of his mouth, or don't come out right - other times the word is just gone completely.  This could be partly from the medications he is taking for the pain - and she thought maybe some sleep deprivation, too; so we're going to be working on a better way to keep a schedule, some light chores to do, and see if that helps with the sleep patterns.

We did get GOOD news on the CT scan that was done - the lymph nodes in his chest/abdomen are shrinking!  His blood work continues to look good, and we'll continue on the trial.  The schedule is easier now, infusion only once every 2 months, and continue on his daily chemo pills. We'll still need to go to Houston once a month to renew medications and do blood work, but overall an easier schedule that will hopefully let him build his strength back up again.

With the exception of getting bronchitis, he does seem to be feeling better overall.  The food battle continues.  He'll still go days without eating but the doctors say as long as he keeps hydrated it's ok.  He seems happy to have lost about 10 lbs, I'm less than enthused about it.  His doc at MD Anderson also wasn't pleased.  The goal now is to keep him from losing anymore weight, he'll need everything he has for the stem cell transplant.

There's no word yet on when that will be; have to get him into remission first.  Doc at MD Anderson says they usually see that between 6 and 9 months; we're in month 4 now. By God's grace he'll be in remission by the holidays this year!










 

Into the swing of things

It's been awhile since I've updated.... been busy dealing with MD Anderson and their screwy way of doing things, if they can make it the most difficult way possible, they will -- and then try to one up themselves.

After months and months of run around with insurance and getting all the ducks in a row, Tex did start on the study drugs last week.    We've committed to weekly visits to Houston for the next year-ish. 

He is 3 weeks on infusion and one week off.  Plus a daily trial  chemo pill that he takes at home.  So far, he seems to be tolerating them well.   He has had a couple of really down days, but can't say that it has been any worse than when he wasn't getting any treatment.  It's still early so we'll be playing the waiting game for awhile -  part of the down side to doing the studies -- you get to have the side effects and then let them know what's happened.

These drugs have already been tested, and there is substantial information about them in scholarly papers and from what has already been found there are very minimal side effects.  I am cautiously hopeful that this will continue to be a gentler treatment and take care of the cancer once and for all.

Time to get the bags packed and ready for another journey to Houston.  His 2nd infusion is tomorrow morning.

Keep praying! 

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!

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.  

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.