Stem Cell Transplant Consult

 Today was a good day. 

I'm learning that tomorrow is a new day.  But I'm also learning that if I'm going to feel the lowest of lows, I absolutely MUST allow myself to feel some highs too.  

So today we went to Moorland Reserve to meet with a new member of The A Team (That's THE Andy Team...in case you didn't realize).  

But first we needed labs.  

Nearly as soon as Andy sat down, he received a notification on MyChart regarding his results. Oh. side note...do you not know about MyChart?  It's this wonderfully horrible little app where you can access all of your medical information, sometimes before your doctor even reviews it or meets with you to discuss.  So you read about weird words and then google search them, only to find out something horrible, only to find out that internet only provides you with horrible, worst case scenarios.  It's the biggest blessing and biggest curse of modern medicine...but I digress.  

We opened the MyChart App and looked at Andy's numbers.  

Last week, remember, we just got the Daratumumab.  However, Andy's numbers were as follows:

Hg = 10.5 (up from 9.4 last week)

Platelet = 260 (up from 244 last week)

ANC = 2.1 (up 1.2 from last week)

WOW.  We took this as a great sign.  Hg 10.5 - double digits!!  

We got called in back and first met with our nurse, Danielle.  She was super nice and very friendly.  I assumed she HAD to be hiding something from us.  We were about to get terrible news - spoiler, we did not receive terrible news.  She asked Andy to walk her through how he got to where we are today.  His symptoms, his reactions, etc.  

She was SHOCKED that Andy was even upright on the day he was admitted to the hospital was a 5.1 Hg count.  She was NOT SHOCKED that Andy's numbers tanked after the first dose of Revlimid, Daratumumab, Velcade cocktail.  She told us that Andy was initially put on a high does of Revlimid, but sometimes she's seen prescriptions as low as 5 mg.  She assured us there were a lot of options there, but not surprised at all he was not currently taking the medication.  (It's so awesome when medical professionals are not shocked by your response to medication.  Because as a commoner, in case you forgot, we were, indeed shocked.)

So, basically, other than the Cancer, Andy is healthy as a horse.  Andy said he'd prefer to NOT have the cancer.  Her response was very matter of fact.  "We'll get you there.".  

No sad eyes.  No frowny face.  Just fact.  "We'll get you there."  YES PLEASE.  Danielle left and Andy and I stared at each other, blinking back tears and excitement.  I lost - surprise surprise and started crying.  It just felt like the first actual reassuring conversation we've had in almost a month.  A month of reading MyChart results, talking to nurses (God love them) that are administering chemo.  It felt like something.  

Then Dr. A walked in - Yes, our medical team is comprised of Dr. A and Dr. A for patient A.  We try and keep things simple for you as you follow along.  So Dr. A is our surgeon for the stem cell transplant and Dr. Al is the oncologist - got it?

Dr. A asked a very basic question...Do you understand what Multiple Myeloma is?  Well....kinda?  We tried explaining it.  Eh....we got a few parts right.  But he was going to explain it to us.  First.  He needed to find his favorite pen.  I love this guy already.  

Turns out he couldn't find his favorite pen, but he did find a sharpie.  Another favorite of mine!  He started drawing what multiple myeloma is...and I started writing everything he said.    

Skip the section below if you don't really care to know my version of Dr. A's drawing.

MULTIPLE MYELOMA EDUCATION (according to Dana)

Plasma makes immune cells (immunoglobins) when you have an infection or are sick.  Once the infection resolves, those cells (Y Cells) die.  

In the case of MM, the plasma cells divide uncontrollably and there are a ton of antibody cells floating around the body.  They don't die.  They just divide and divide and accumulate.  Plasma also lives in your bone marrow and as it's creating all these antibodies, there is no where for them to go within the bones and they start to weaken the bones.  This is a common way of detecting MM - someone fractures a bone, gets a scan, and learns they have blood cancer!  Again, Andy did have some lesions on his bones, but nothing advanced.  

These antibodies also create proteins.  The proteins are filtered through our kidneys.  This is another way that MM is detected.  The kidney can't keep up with the protein filtration and patients end up on dialysis - in kidney failure.  Dr. A said that Andy's protein count was some of the highest he has seen, but yet his kidney function is still good (yay!).  

A lot of our other blood cells are 'created' in the bone marrow / plasma cells.  As an example - red blood cells.  Which is why the Hg count is so relevant to MM.  

So...with all of this - MM is cancer of the plasma....essentially, cancer of the immune system.  

OK - welcome back.  Dr. A was very clear with us.  MM is not curable.  But we have learned how to control it and 'functionally cure it'.  He talked about the 4 drug cocktail that Andy is taking - Dara RVD.  The goal is these drugs will kill as many plasma cells as quickly as possible.  He called Dara RVD the bomber jets.  Just destroying everything (again...I love this man).  However, some of the plasma cells will build bunkers...and hide.  So, in preparation for the transplant, we will administer Melphalan.  

Melphalan is 'old school chemo'.  It's the ground assault on the plasma cells.  The Melphalan will go in and destroy everything.  All the plasma cells that are hiding in bunkers.  Dead.  

BUT.  AND?

It will literally kill everything - all the good cells too.  This is where it gets sci fi!

So, Stem Cells are called Mother Cells.  They can grow EVERYTHING.  Plasma cells.  White blood cells.  Red Blood cells.  So they'll hook Andy up to a machine, sort of like a dialysis machine.  They'll take his blood out, circle it around, extract the stem cells, and put everything else back in.  Then - and I quote - we put the stem cells in a bag and put them in the freezer.  Dr. A said usually he gets enough Stem Cells in one cycle, but it could take two cycles over two days...and in rare cases - it takes 3 days.  

Then Andy gets the old school chemo.  Rumor has it - this shit can knock him on his ass chemo style.  Fatigue, nausea, hair loss, all the side effects.  During this time all of Andy's counts will plummet.  He might need blood transfusions or platelets.  Dr. A said, most likely in the single digits.  BUT!  On the other end of that - he'll get his squeaky clean stem cells back put BACK into his body (oh, but first they'll thaw them! :-) ).  It'll take a few days once the cells are in and then we should see a HUGE spike up in his numbers.  And those little cells will be in there making new white, red, etc.

Ideally, one month post transplant he'll be feeling quite well.  And three months should be complete recovery (from the transplant).  At the three month mark we'll go back to Dr. A to see what Andy's response to the transplant was (oh that seems like an awfully long time to wait!!!)

Then - it's on to the 3rd phase of our cancer journey - maintenance.  Andy will be on 1 - 2 drugs to keep everything at bay.  Hopefully, this will be years and years of treating his MM like people treat high blood pressure or diabetes.  

Any questions? 

Just one - I asked.  When do we start?  

Dr. A said he wants to see at least a partial response to the cocktail treatment.  And then a sustained response.  We've already accomplished step one - partial response, but we need to wait and ensure it's sustained.  We have another number to watch - Andy's Lamda monoglobin protein - IgG.  On 11/06 Andy's IgG was 7.8.  At his appointment last week it was 2.94.  Dr. A that was very encouraging and that number should continue to drop. Although, not as rapidly as we initially saw.  Ideally, that number would be closer to 1, but he's seen that number drop even past that (Game. On)

Unfortunately, MM learns how to recreate itself and someday we'll have a relapse.  However, Dr. A is VERY encouraged by several clinical studies that are currently in progress.  He said there will be MANY options for when that happens, but step one is to have remission last as long as possible.  

Everything was positive.  Everything was encouraging. Andy and I felt a little like we were floating when we walked out of the doctor's office.  

Andy's tempering his excitement.  But to be fair - Andy is great at tempering all his emotions.  Me on the other hand?  I take all the emotions to extreme!  The lowest of lows and the highest of highs.  I feel like we have something to work with for the first time.  I feel like I can breathe today.  And I'm going to celebrate that.  

Tomorrow we meet with Dr. Al.  That appointment comes with all it's own apprehensions, anxieties, uncertainties, unknowns.  But today.  We understand MM better, we understand our numbers better, we understand transfusions better, we have a plan, and we have hope.  

This was a long one - thanks for sticking it out!  And more importantly, thanks for the continued texts, messages, cards, prayers, thoughts, smiles.  We are not alone and you show us that time and time again!