What is a SCT? Phase I - Preparation for Collection

We've had a lot of questions on timeline, process, and how to help. 

So let's focus on timeline and process:

Andy is going through an Autologous Stem Cell Transplant - which means we will be using his own blood.  No need for a donor.  

We continue with cycle 4 through February 13.  The process is to wait two weeks after the end of a cycle to start the SCT process, which leads us to February 28.  
But before then, Andy will start Claritin and Magnesium for a few days (I don't remember why and I don't remember how long he needs to take them for...just wrote that down in my book of questions!)

Then we move to the complete physical work up to ensure Andy is physically ready for the extreme toll he is about to take his body through. 

We also start daily Neupogen shots.  Neupogen shots will be used to stimulate the production of neutrophils (Clear as mud, right?).  Said another way, Neupogen will help stimulate production of stem cells in the blood that can be collected for the SCT. 

    LITTLE DETOUR - Instead of using bone marrow, we are using Stem Cells for Andy's transplant.  Stem Cells can be collected from the blood.  The Neupogen will help release stem cells from Andy's bone marrow into the blood, which will help with the collection.  

Friday, February 28 Andy will have a 'Trifusion Catheter Line' placed for the stem cell collection and the transplant.  The catheter is placed in his upper chest through intravenous sedation (Surgery #1!) But will be helpful so we don't have to keep place IV lines each time we go in for blood work, labs, chemo, etc.  Andy isn't thrilled about this part.  I can't blame him.  But I bet the do such a great job, he won't even notice it!

We will continue the Neupogen injections through the weekend.  Which means Andy and I will drive to the main Froedtert campus each day.  

Sunday we will also receive a Mozobil injection.  Mozobil will 'mobilize' the stimulated stem cells (from the Neupogen) from the bone marrow into the bloodstream, ready for collection. You guys...for fun...this is what our paperwork says..."Treatment with Mozobil should begin after the patient has received G-CSF (AKA neupogen)  once daily for four days. Mozobil should be administered approximately 11 hours prior to initiation of apheresis* (Apheresis is the procedure for collecting stem cells) for up to 4 consecutive days."  Now...technically, I know all that is happening...but, like what does that all actually say?  It's no wonder our heads our swimming, I read our handouts 100 times, and we are INCREDIBLY blessed with super smart friends that know exactly what we are reading to them and help us decipher all this nonsense!  

I'm assuming these appointments will be relatively quick...but I could be in for a big surprise.  

OK....I think that's enough for now...what do you think?  Next time, I'll review Phase II - Collection.  

Express Train to Stem Cell Transplant

Thursday (January 30) - Andy and I went to our standard Infusion appointment at Menomonee Falls and met with our Oncologist, Dr. Al.  

The appointment went well. But what we haven't talked about is Dr. Al also said - the recovery is "SO remarkable", we are ready to proceed to Stem Cell Transplant (SCT).  

While this is great news...We couldn't help think, Wait.  We leave for Spring Break on Friday, March 21.  We can't have a SCT.  Dr. Al told us to talk to Dr. A on Wednesday, when we already had our SCT consult scheduled.  

Friday afternoon every single appointment was scheduled for our SCT.  And friends...it takes A LOT of appointments to go through a SCT.  Over the weekend we received a 1.5 inch binder filled with every.single.detail. about a SCT.  Sure looked like this train left the station.  

So Andy and I started wrapping our heads around the surgery, which was happening a month earlier than expected, and was cancelling our spring break vacation.  We wrapped our heads around how to tell our kids.  And how to tell our travel mates.  

Wednesday couldn't come fast enough.  

We got to the appointment on Wednesday and Dr. A talked to us about potentially moving the surgery so we could go on Spring Break.  We weren't expecting that.  We weren't expecting the decision to be pushed back to us.  Have we mentioned how much we love our medical team? 

Dr. A talked to us, gave us time to talk, gave us possibilities.  It was amazing. 

Ultimately, we decided, full steam ahead with surgery.  Andy - and I - have already been wrapping our heads around starting the process.  And starting now, means starting recovery one month earlier.  Means more summer time in remission and less in recovery.  It means more energy.

So Wednesday we told the kids - no more Florida for Spring Break.  Instead....dad is going to be isolated in his bedroom and we are going to wear masks in the house.  They. Were. Amazing.  Seriously.  Our kids give us a lot of grief (as kids do), but I'm so incredibly proud of them.  

Then Thursday we called our friends that we were supposed to be traveling to Florida with.  Of course their response was, well that sucks, but tell us more about the surgery.  

And now...now we get to spend the next several days telling you all about exactly what this process entails.  As we continue to learn about it.  

So buckle up...because this train moves FAST!  🚅

Cycle 4 - Week 2

 I'm not really even sure what to say. 

Today was infusion day. 

We went to the hospital. We got labs. We got results. We got treatment. We went home.  

It's uneventful.  It was glorious.  

Overall his labs looked good.   Some numbers up. Some numbers down.  But overall level.  

What's even more mind blowing is we did officially find out Andy's Stem Cell Transplant has been scheduled for March 17. 

So. So. So. many more details on that....later.

Cycle 4 - Week 1

 OK - so, I 100% meant to blog last week during Cycle 3, week 4...which was our first off week.  

Nothing.

No appointment. No labs. No results. 

I think, instead of blogging about our off week, we were too busy trying to distract ourselves from having an off week.  It sounds great - doesn't it?  But you have to realize, for the last 90 days, (EXACTLY 90 days ago today) we have LIVED for our numbers.  Numbers are good - we feel good.  Numbers are bad - we worry and are sad.  

AND, not only were we trying to ignore the fact that we didn't have labs to rely on, but turns out Andy's spike in WBC was warranted, because something nasty spread through our house and resulted in Andy and I feeling generally miserable for several days.  Thankfully, both kids avoided it.  

So - today is the start of a new cycle, which means we headed to Menomonee Falls to meet with Dr. Al.  

Andy got in early for labs, and luckily, we received labs so quickly too. 

Hg - 14 - up from 13.4 (14.  This is the number we have always been told is the 'normal'.  We would always hear things like 'You and I are at 14...Andy was at 5').  Now Andy is 'normal'.  

Platelet - 353 - up from 252

ANC - 3.7 - DOWN from 11.1.  Remember how much I was worried about this number (well, I really was) What an amazing indicator of this ick that was about to descend onto our house!

We got called back quickly and went through initial vitals.  Between nurse one and nurse two, Andy's calcium and protein numbers came back. 

Calcium - 9.6 up from 8.8

Protein - 6.9 down from 7.1.  And this number is so important, because it means that Andy's body had an infection, fought the infection, and appropriately processed the infection and corresponding protein cells out of his body.  It was - an amazing feeling.  

I'm not going to lie. At one point, I had this nagging thought - are we moving through these appointments so fast because Dr. Al wants to see us because he has something bad to tell us?  

But then Dr. Al walked in.  You guys.  I love this man.  He walks in with a huge smile on his face.  He said something about enjoying seeing the big smile on Andy's face.  We said something about enjoying seeing the big smile on his face.  And he said something about, it's easy to smile when there is "NOTHING BUT GOOD NEWS".  I wrote that down.  Because I wanted to remember it forever.  

Dr. Al said, let's go through your cancer numbers - this number, good.  This number, good.  This number, remarkable.  He said something about taking our life back.  

He asked if we had any questions.  We said it was all just crazy.  He said, it's a "REMARKABLE RECOVERY IN SUCH A SHORT TIME."  I wrote that quote down too, because I never wanted to forget it.  He even said, there is a chance we could hit the IgG number of 0 before a SCT.  

**OK, side note - I forgot to blog that we also receive the IgG number two weeks ago, but I didn't blog about it because we got the test result on a Friday night at 8:30 and while it was good news, I still felt very attacked and assaulted with this information so late at night.  But the number went from 1.59 to .91.  POINT NINE ONE!**  We want this number to be 0 and now Dr. Al is like...well...maybe it could be 0.  

Dr. Al gave Andy his physical assessment and we were done with Dr. Al for another month. 

He walked out of the room and we just sat there.  

I really can't explain to you what we were thinking.  Maybe we weren't thinking anything.  Maybe we were thinking everything.  It sometimes feels fake.  Like how has this been 90 days?  The rollercoaster.  Instead we just said, Wow.  Smiled. And walked to treatment.   

Treatment was fairly uneventful.  Because of his awesome Calcium numbers, we got an infusion of Zometa and then Dara and Velcade.  And then we left.  

We got in the car.  We drove away.  We talked about the beautiful sun.  We talked about the kids playing outside without coats on.  I'm not going to lie - we felt a little like we were floating. 

It's cancer.  Tomorrow is another day.  But today was a good day.  We got good news.  We smiled.  We exhaled and we breathed.  Good news is still just as exhausting as 'bad news' because you realize you are holding your breath and walking around waiting. 

Prayer warriors - ACTIVATE!  Our next appointment is on Wednesday with Dr. A for our Stem Cell Transplant consult.  And according to Dr. Al, things look great and we should be all systems go to start planning!  We'll keep you all posted!

Cycle 3 - Week 3

 Hey Hey....just your favorite cancer support partner here to give you an update!

Cycle 3 - Week 3, which means we were scheduled for both Velcade and Dara.

Andy's appointment this week was in the afternoon and we both agree, we like morning appointments better.  While things have been going well, the anticipation of waiting kind of puts a weird veil on the day.  

Given that the appointment was in the afternoon, I planned on meeting Andy at the hospital.  His appointment was at 2:00.  At 2:02 he sent me a message that he was out of labs already.  As I ran in the door, we were already receiving the text message that his results were ready!

Hg - 13.4, up from 13.2.  I'm going to assume we won't be seeing a ton of movement with this number going forward.  We were told from the beginning that 14 is sort of that Average number.  And we like average!

Platelets - 252 - Up from 204.  But remember last week it took a big jump down from 261 to 204 and now back up to 252.  ugggghhhhhh Why is cancer so weird? 

ANC - 8.7 UP from 3.3. Which is like a BIG jump.  His White Blood Cell count (WBC) is 11.1 which is up from 4.5.  So...perhaps Andy is fighting something or is getting over something.  He did mention he had a tickle in his throat.  Later when we talked to his nurse about the number she said it was still OK, a jump, but OK and she wouldn't call the doctor until the number reached 20 or higher.  We really just needed to keep an eye out for any temperature or any other clear sign of infection.  Do you know what I do really well?  Waiting.  I wait SO well.  (Spoiler...I do not wait well). OK, fine.  We'll just watch this number.  

Total Protein was 7.1, which was up from 6.7.  Normal Range is 6.1 - 8.4.  Proteins are one of the big markers of Andy's cancer.  So when this number moves up, I tend to not love it.  BUT.  He's still in the green and it was only a small change. AND with is WBC count being higher, this could also be a result of coming over an infection and the resulting antibodies.  

His Calcium was up to 8.8 from 7.8 - so that was a nice little jump too. Not enough of a jump for us to receive the Zometa, but making progress in the right way. 

Andy's nurse came in, went through the run down of side effects and reactions.  Andy continues to be a rock star and does not have any side effects or reactions. 

We talked about the Zometa and we talked about the WBC / ANC numbers.  But other than that, we received our medication and off we went.  

Things are going well.  Andy's numbers continue to make progress and most importantly Andy feels great.  But this week we didn't have monumental progress and for some reason it's just hitting me hard.  I realize I'm just walking around holding my breath, tip-toeing through life.  While we told Dr. Al at our last appointment we were waiting for the other shoe to drop, and he told us there isn't another shoe right now, I'm terrified of the other shoe.  WHAT IF Andy just stops responding to treatment?  WHAT IF Andy's cancer learns a new trick and does something we didn't expect?  WHAT IF we get surprised like we were surprised on October 30th?  

I know. I know I can't live the WHAT IF game.  But sometimes.  Sometimes you just can't help it.  It amazes me every single day that Andy is the one with cancer and yet he is MY calm in the storm.  I rely on him for strength and support.  I wish every single day that he wouldn't be going through this.  But he continues to amaze me and I continue to be so so proud of him!

Prayer warriors...you know what to do!  

Week 2 - Cycle 3

 Another day, another treatment.  

It was an early one today and we knew we were going to only receive on medication, so we figured we'd be in and out, 'easy peasy'....you know, as far as cancer goes.  

First labs, and results. 

Hg - 13.2, up from 12.9.  It's a small movement, but guess what guys?  He's in the green!!  Andy has a 'normal' Hg level for the first time in months.   Most doctors don't really 'care' about this number as much as we do, but given how horribly low this number got, we are just so excited to see it in the green!

Platelets - 204 - down from 261.  That's weird. 

ANC - 3.3 UP from 1.7.  What?!  That one is super weird.  How did it jump so much so quickly.   We know Andy was battling a little something last week, but to make it jump that quickly?  

Total Protein 6.7 down from 7.0

We were called back pretty quickly and given how early it was we got out pick of rooms...it didn't really matter, we wouldn't be here long, but I grabbed a room with a window and a tv (satisfied both of us!)

Our nurse came and took vitals and ran through all the possible side effects and reactions.  Spoiler...no side effects. No reactions. And he's doing awesome!

Our nurse confirmed the Velcade injection AND a dose of Zometa.  Well that was a surprise!  We didn't realize that not getting the Zometa last week meant we could get it this week, based on his calcium numbers.  Which we didn't have yet.  We knew they were low last week, but with his Calcium supplement, I guess there was an 'assumption' it would be higher this week.  We weren't as certain and when the nurse suggested we could wait to start the IV until we received the calcium numbers, we agreed.

So...then we waited.  And waited. And waited.   Finally the notification of a test result came through.  

Calcium - 7.8, down from 8.0.  Dang.

So - a little note on Zometa.  Zometa pulls calcium from the blood and puts it back in the bone where it can help strengthen the bone (which has been weakened by the cancer cells).  Right now, Andy doesn't have enough calcium in his blood to pull from.  So we need to keep working on boosting that calcium number in other ways (mmmmm, broccoli and brussel sprouts 😜).  I'll be honest, I've had this little process explained to me twice.  And it makes sense...until it doesn't.  So. it's probably best you don't ask me questions about the Zometa 😁

Thank goodness we didn't put that pesky IV in.  

We received our Velcade and went on our merry little way.  

Tonight Andy is driving kids to and from swim practice and we are dealing with a dead car.  So, waiting on a car appointment and AAA.  Fun how life just keeps happening around you.  Amazing how Andy is able to just deal with it all.

As always - keep the prayers and well wishes coming!  We see them working every day.

Cycle 3...starts NOW...

 Today we had our highly anticipated appointment with Dr. Al at the Menomonee Falls clinic.  Remember, we meet with Dr. Al once a month on the first day of a new cycle. 

First, we had labs.

The initial numbers came back quickly.  

Hg - 12.9 up from 12

Platelets - 261 - up from 227

ANC - 1.7 down from 2.7...this one keeps dropping :-/

Total protein holding at 7.0

Calcium 8.0 - up slightly from 7.7

We then went in back and got some vitals checked - Andy's blood pressure has come down significantly and, while still high, is doing much better!

Then his nurse came in.  She went through ALL the side effects....none of which Andy is experiencing.  She made several remarks, that I was going to write down and didn't, about how incredibly healthy Andy is, how she is the easiest patient she's had all day, how she wishes they were all like this, and etc.  Seriously. Besides the fact that his body started dividing immunoglobins uncontrollably, he's incredibly healthy! I joke, but it's not lost on us how incredibly lucky we are that Andy is tolerating his medications so well.  

Then Dr. Al.  He walks in with a big smile and says, I'm so happy I didn't hear from you all month!  This is in reference to the fact that the first round of treatment Andy's numbers were declining so rapidly we were constantly paging Dr. Al to see if he approved treatment or not (as a reminder...he had to deny us treatment once).  Not only did I not hear from you, he continued, but your numbers are looking great!  

He sat down and pulled up Andy's chart to review our blood numbers with us.  All the numbers continue to make 'remarkable' improvement.  He reminded us that we won't continue to see the massive drops that we once did and that number progression might look substantially smaller, but they are all still going in the right direction.  He was very happy with the IgG number that went from 2.94 to 1.59 in the last month.  Reminding us that 50% reduction in a smaller number is smaller...He showed the light chain numbers, see, all going in the right direction, these look good.  (Remember, Dana...if Dr. Al isn't worried...YOU aren't worried).

BUT I said...what about that ANC number.  It keeps dropping and that one determines if we get treatment or not.  He looked at me like I'm crazy (A look I've learned to love from Dr. Al).  But it's still about 1, he said.  It could still drop more and we could still get treatment.  He pulled up the chart that showed Andy's number at .2.  That...he said...that was bad.  No treatment with .2.  We aren't close to that.  And, we have things we can do to boost that number if we have to. 

So...Dr. Al is telling me not to worry about that either?   Wow.  

Dr. Al did mention that Andy's Calcium numbers are a little low so we did not do the Zometa shot this time and we'll save it for next month.  

He then gave Andy a complete exam and was very happy to hear there was no pain, no bruising or bleeding, and no swelling.  

Then he described our next round of treatment.  Today we had Velcade and Dara.  Andy will start the Revlimid tomorrow. 

Next week, we will just get Velcade....no Dara.  

The following week, Velcade and Dara.

The following week.....Nothing.  NOTHING.  Um. What?  No blood work?  No labs?  No appointment?  No nothing.  Send help guys...we will NOT be okay that week!  We love our labs.  They give us something tangible in a very very intangible situation.  

Dr. Al said that eventually we'll move to Dara monthly and eventually ween off the velcade too.  😮

I get it...we knew this would happen, but it's just weird when you see light in the dark.  

So, Dr. Al was very happy.  Which means we are very happy.  It was a good day.  

We went into treatment, got two injections and off we went.  Back home. Back to work. Back to life.   Tonight Andy is driving kids around to swim practice, picking up milk at Target, you know...all normal things.   Not at all acting like he has cancer and just received two injections.

My prayer warriors - Thank You.  Please keep up the good work!  We feel your continued love and support.  Your messages, your cards, your thoughts, and prayers.  Thank you. 

So that's our update for this week....see you next week!