Life on drugs.

I've been meaning to post this picture for awhile -- mostly just to document for ourselves how crazy life has become.  Taking pills has never been Andrew's thing.  Other than Rolaids, and the occasional allergy relief, he's always been pretty averse to taking anything.  This is an aspect of treatment he really detests -- it's a whole different ball game.  The drugs above are medicines Andrew now takes daily.  Daily -- all of them!  He has to take anti-virals, anti-fungals, kidney protection, heart protection, eye drops, ear drops, steroids, blood cell production injections.  This doesn't include all the anti-nausea drugs and other things he's given during each hospital stay.  Now that we may be done with the hospital, I'm afraid we'll have to add them to the daily regimen.

I'm a fairly organized person, but it's not easy keeping these all straight -- which ones to take once a day, which ones are twice, or four times.  This one goes for five days post each chemo, this one for seven days post chemo.  Not to mention the many, many trips to the pharmacist for refills. Incidentally, the costs of these drugs would floor you -- a bottle of acyclovir is $100, a single injection of neupogen costs $500.  Neupogen has to be taken for 7 days following each chemo round -- the doctor has been fighting with our insurance to allow us to get a single injection that can be done in her office called neulasta, but they keep refusing, so I can only imagine it must be even more expensive than the neupogen. It's a really insane schedule of drugs, and very easy to see how patients can fail to take all their meds correctly.  We've forgotten a few doses here and there, simply because with the sheer number of pills, we couldn't remember if he had taken something already.  I can't imagine how elderly people manage, unless they have someone helping them keep it all straight.  I should have made a big chart with dosages and days, and made check marks for each dose taken.  Oh well -- an idea that hopefully we'll never have to use...

update from round 5

So sorry it's taken me so long to post an update after round 5 chemo!  It coincided with work deadlines, and I was a bit crazed all last week.  The good news is that R-CHOP (Andrew's new regimen) is a breeze compared to what we're used to.  Oh my goodness -- we checked into the hospital on Thursday night, and he was done by midnight, discharged by 11:00 am the next morning!  We're used to 3-4 days of heavy duty chemo plus intense after effects.  And they tell us that the last 3 rounds may be able to be done at the office in the infusion center (this is where people go to get regular chemo that doesn't require hospital admissions).  We would arrive in the morning and spend about 6-8 hours and go home -- no hospital needed!  The idea of that is so overwhelmingly wonderful, we barely want to contemplate it, in case it doesn't happen.

Andrew has been doing really well post treatment.  He's had fatigue and nausea, but nothing, NOTHING compared to what happens after hyper-CVAD. He's been feeling pretty good, and now we understand how people in regular chemo treatment can go to work and have a life.  It's just such a different experience. So, we're all still keeping a close eye on him, to see how the blood cell production fares -- he's scheduled for a blood draw tomorrow, and another one next week.  We're still doing the nightly neupogen injections to stimulate white blood cell production, and he still takes a million pills every day, but all in all, such a huge change for him!
We're obviously thrilled about the PET results, but always wary.  We hope that the less intense chemo is able to take care of what's left in the nodes, but the doctors are optimistic, so we are too.  Cautiously optimistic.   Round 6 is scheduled for April 6th, if all goes smoothly.  Thanks to everyone for hanging in there with us all these many months.  It's been a very long slog through this treatment, but we can see an end in sight finally, finally.  Now we start to count down!

Love and thanks to you all!!

xo
L

Good news for round 5

We're in Albany toady, waiting to be admitted for round 5.  We saw Dr. E this morning, and she was all smiles.  The PET scan report shows lots of progress thus far -- the lymphoma is gone from Andrew's bones, marrow, spleen, and liver, and has significantly reduced in many nodes!  There is still "activity" lighting up on the PET in some of the nodes, but much reduced, and we still have 4 more rounds of chemo.  We are feeling very confident today that we will get rid of this thing!  It's nice to know that all the hell he's gone through has been worth it.

The new chemo regimen sounds like a dream compared to what we're used to.  Andrew will now be getting all of the IV R-CHOP drugs in one day, and take high dose oral prednisone for 5 days.  So potentially, he'll only be in the hospital for a day or 2, and the recovery should be much easier.  I will try to post some pics, as I've been remiss lately.

Love to all for the continued support.  We are truly astounded by the outpouring of love and generosity we've received these many months -- I really don't know how we would have gotten through without it.

xoxox
Linda

delayed again.

Well round 4 seems to be the gift that keeps on giving.  Andrew was supposed to begin round 5 on Thursday, a week late, but his platelets still haven't reached normal levels.  We must taxi the runway for yet another week, while they return to the chemo-safe threshold.  It's good for him to have some more time, but frustrating for us, as it prolongs the whole experience.  He just has not been able to bounce back well from the dreadful fourth round.  He's feeling very weak, and all of the blood draws are becoming very painful for him.  We are so glad that the "B" cycle drugs are no longer in our future -- I would have been a basket case anticipating the next dose.  He's improving in small increments every day though -- his white blood cells are in normal range, and his red blood cells are nearly there.  I'm confident that by next week he'll be ready to go.

He also had a mid-point PET scan a few days ago.  Unfortunately, the radiologist wasn't finished reading it by our appointment.  Our doctor saw it briefly and could report that there is still cancer activity present (expected), but much reduced.  She will be able to go over it with us in greater detail next week, but the plan remains the same -- 4 more rounds of R-CHOP followed by another PET at the conclusion of treatment.

halftime!

Oy!  I was in a really bad mood when I wrote that last post.  I'm realizing that I don't write much when things are going well -- we're too busy trying to enjoy a semi-normal life -- but when things are difficult, it just pours out of me.  Cancer life is so up and down -- we have good days and really bad days.

We did get some good news this week though.  Dr. E is recommending that we switch to a less aggressive chemo, R-CHOP, based on Andrew's new diagnosis.  Because Mantle Cell lymphoma has been ruled out, the hyper-CVAD regimen is no longer necessary.  She has ordered a PET scan for Wednesday to see how things are progressing, and then Andrew will be admitted for round 5 on Thursday.  R-CHOP is basically the same drugs that are used in the A cycle, every round -- no B cycle.  hooray!  she also believes that Andrew can stop the intrathecal infusions now -- 6-8 was the plan, and he's had 7.  So things are looking up for the second half!!

Thanks again for all of the supportive messages and emails.  This was such a difficult month for us and I'm sorry if I haven't properly responded.  The love and support means so much to us.

xoxo
Linda