So now that the transplant is done, what’s happening.  In a word, Haematopoiesis.  It’s a Greek word formed from two other Greek words.  One meaning ‘blood’ the other meaning ‘to make’.  Making blood.

Using stem cells.  The ones that, as I type, are being introduced into Kristina.

Fun fact:  The healthy adult human makes between 10 billion and 100 billion new blood cells each day (no wonder I’m tired).  Take a nap.  You’ve earned it.

What sorcery is at play?  Stem cells.  Haematopoietic stem cells.  Or, as my spell checker likes, Hematopoietic stem cells.  These cells have the unique ability to give rise to all the different mature blood types and tissues.  Some that stay in the bone marrow, some that flow through the blood and others that in tissues. In laymens terms, the main ones are red blood cells, white blood cells, and the platelets.

But (of course) it’s more complicated than that.  Stem cells can create a wide variety of cells, but do so through another layer of cells called  ‘progenitor cells’.  The progenitor cells are only slightly less cool than stem cells.

Stem cells can live indefinitely and create progenitors, but progenitor cells can only create certain specific cell types and can only replicate so long before they expire.  As long as the stem cells are good, the creation of the progenitors and subsequent cell types can go on for a long time. 

So what type of cells do stem cells create?  They have big fancy words and different levels of creation.  Picture a big family tree with two diverse kids more diverse grandkids and great grandkids each with special powers all originating from a single parent (don’t dwell on that analogy too long).  But it’s fascinating how these stem cells organically know where to go (the spongy bone marrow) and how they replicate into myeloid progenitors and common lymphoid progenitors which in turn create another level and type of blood cells, some of which then give rise to still other types of blood cells. 

The progenitors mostly live in the factory – the bone marrow.  But the cells they create go forth and do the real work throughout the body, delivering oxygen and fighting off invaders.

And while we’re at it, let’s ponder for a bit just how new this process of transplanting stem cells is.   It started in the 1950’s, the decade into which I was born, right here in Seattle by the very hospital where Kristina is getting her transplant – the Fred Hutch Cancer Research Center (which is now just the Fred Hutch Cancer Center).

Dr. E. Donnall Thomas was the primary driver of treatments for blood cancers in the 60’s at the Fred Hutch and received the 1990 Nobel Prize in medicine for his ground breaking research.  Most of which was done right here in Seattle.

Fascinating process and Kristina’s in the right place at the right time in history. 

Transplant Day

 It’s transplant time

 Today is the day.  Kristina had her first total body irradiation (TBI) yesterday.   3 minute test, then 6 minutes on the front, 6 on the back.  She’s feeling a little fried after the session – like a day in the sun.

Today they’ll ‘pre med’ Kristina in preparation for the transplant.  Then the stem cells are thawed.  They’ll be a honey colored golden liquid in two bags and over the course of two hours they’ll be inducted via the hickman, and as stem cells are naturally programmed to get to the thicker bones, they’ll start to be absorbed into the ‘spongy bone’ and engraft themselves into the marrow and begin to populate new stem cells.  Hopefully they’ll multiply.  Kinda like rabbits.  If everything goes as planned, they’ll create different sorts of cells and get her bone marrow back to healthy blood generation.

We all know what ‘transplant’ means, but here’s a quick tutorial on how it works.  Yes, it’s way simplified, but your humble blogger is a simple guy. 

First the donor.  We’ve been through the matching process, but when Kristina says ‘the donor is being harvested’, gruesome pictures pop into my head.  It’s unsettling.  But when Kristina described the process, it’s pretty simple.  It’s not unlike giving blood.  There are some preparatory steps, but the actual ‘harvesting’ is pretty simple.  Take blood out of one arm, run it through a centrifuge to spinoff the stem cells and then put the left over blood back into the other arm.  Freeze it, and courier it to the patient.

If getting the stem cells out of the donor is relatively easy and fairly risk free, the process of getting them into the patient, Kristina in this case, is a bit more complicated.  With a wide range of side effects.

Chemo, and in Kristina’s case, radiation is involved to lower the immune’s system to battle the new stem cells.  The very treatment that allows the body accept the good stem cells greatly weakens the bodies ability to fight other infections.  Then there’s GVHD (Graft-versus-host-disease).  This is were the donor cells attack the patients body.  Even if the match is ‘perfect’, this can happen. 

GVHD comes in two forms – acute (within the first 3 months after the transplant) and chronic (after the first three months).  The acute form can cause rashes, diarrhea and jaundice and a whole bunch of other things.  Her care team will monitor and meds may be required to block the donors ‘T’ cells which are attacking Kristina’s cells.

The chronic form is more insidious and can be life altering owing to organ damage.  It’s nowhere near certain any of this will happen, but it’s a possibility.  Another thing to worry about.

Kristina is about to battle on several fronts.  Already weakened from the earlier round of Chemo as well as the ‘one two’ punch of the lumbar puncture and ‘maintenance’ round of chemo, she’s about to be further beaten down with the pre transplant chemo and radiation.  The risk of infection is going way, way up.  Even if everything is done correctly and all precautions taken, infection of some sort is likely.  Add to that the potential of GVHD which can wreak havoc.  So many unknowns, but she’s ready to push forward.

Two last requests – care giving is going to be a thing.  Kristina has asked her ‘tribe’ to sign up to be backups.  With a primary and a back up for each day, she’ll feel comfortable.  Take a look at September 17^th as well as there’s a coverage need.   That’s the non-financial ‘ask’.

Then there’s the financial ask.  Take a look at the go fund me page.   ‘Nuff said.

The next few weeks are the critical weeks. 

As a side note, her night time oncologist is a warm, intelligent engaging professional who affirmed the questions Kristina has asked have saved her life.  She affirmed that Kristina’s active engagement in her care have produced positive results, even going back to her two earlier bouts with this disease.

BUCKLE UP!!

 

It’s been an eventful week, she's checked into the hospital, and we’re on the final countdown to cell transplantation Aug 1.

But first, the highlights from last week.  It was a pretty good week. 

 

The data review conference was the highlight.  Her care team reviewed with Kristina all the cumulative diagnostic test results that were required in order to push the ‘go’ button on the transplant.  That button was pushed, she’s cleared for take off. 

 

There were a couple of things, one of which was a heart murmur which she thought she had grown out of, but it’s a ‘trace’ and really not a concern.  She also had pneumonia in the hospital last time and she didn’t even know she had it.  There’s some residual lung issues, but not significant enough to stop the transplant.  She did have a couple of minor symptoms (intermittent sore throat and some diarrhea) which caused a few more tests, including a last minute chest CT scan.

 

If there was a low light, it was an extensive interview on Kristina’s extensive travel.  Questions of her recent trip to Peru & if she was in the Amazon. And even area's & beaches she visited while in Sri Lanka just before Covid hit. As a result, in an abundance of caution,  they put her on ivermectin, which came as a shock to her (flipping stunned were her words). 

 

Last week she had 4 bags of blood, 3 reds and 1 platelet, as well as 1 additional platelet bag very early this morning in her hospital room.  Despite that her blood levels aren’t good.  Her neutrophil count was 0.01 (10) and her platelet counts are falling as well and her ‘crit’ level hasn’t maintained despite the transfusions.  She thinks something isn’t right and has chalked it up to the ‘mild’ dose of Vidaza, the maintenance medicine used for MDS patients.  She’s 25 days since her last dose, and her levels aren’t great. Vidaza is typically a 28 day cycle..

 

Her team is isn’t too concerned, but Kristina is a bit – more so about her cell recovery after her current round of Transplant chemo. 

 

One more bit of news – Kristina is CMV negative, but her donor is CMV positive.  The matching process isn’t perfect.  The primary matching points don’t even cover CMV – Unfortunately it’s part of a secondary screening stage of the donor. 

You may be asking yourself 'what, exactly, is CMV'?  It's a virus that infects roughly 100% of folks in Africa and Asia and up to 80% of people in the US.  If 10 people are ready this right now, odds are that 7 or 8 of you have it.  Without knowing it.  It lies dormant most of the time.  It's in the herpes family of viruses, but isn't herpes nor is it considered an STI.  It usually isn't a thing.  Unless you become immunocompromised, then it can attack the kidneys, retinas, and become pretty serious.    It's one of those things to worry about, but likely won't be a problem.  Until it is.  

It can be a problem in young children, and it is similar to  mononucleosis.  From the description of the systems (general malaise) one could suffer from acute CMV but never really connect the dots.   For Kristina it's another thing to be concern with but is outside her control.  If she's healthy, it won't impact her, but in the future, if she becomes immunocompromised, it could cause health issues.   For right now, it's a 'tomorrow problem'.

 

She did follow up on the donor process and they went through 5 donors, some were unavailable, one was pregnant, etc – so they landed on the 6^th donor – despite the CMV positive status. 

So while not perfect, the donor has already had his stem cells collected and Kristina is now on her 3rd day of the transplant chemo cocktail. She is walking laps around the transplant floor and receiving IV hydration & additional prophylactic med's daily.   Things are moving forward. 

 

Kristina is feeling pretty good – or at least better.  She’s gained a little bit of weight back and she was gaining some strength.  But not as much as she’d like.  She’s still exhausted and the fatigue level is a thing.    She knows what’s in store and feels only marginally ready for the challenges ahead.  

 

But psychologically she’s at the point of ‘let’s get this done’.  

 

Kristina is back at UW Medical Center, the main Montlake campus, diagonally across from Husky Stadium. To visit, take the Cascade wing elevators to 8NE floor, rm # 8240 & sign-in.   The actual transplantation of the stem cells takes place on August 1st. Please ping her, visit her, ask if she craves any outside food. By all reports the hospital food is less than... well, far beyond sub par, to put it gently. Oh, and no live flowers or plants.

 

All systems go, buckle up.

T minus 10 days

 July 17th, 2023 --T MINUS 10 DAYS 

 

As of the last post, Kristina had been dealing compounding delays followed by the worse than expected aftermath of the lumbar puncture (LP) and the ‘surprise’ round of chemo. Both the LP and Chemo hit Kristina’s body pretty hard with compounding effects. A one – two punch.   She’s down 10-12 pounds and the fatigue caused by the “maintenance” or “management” round of chemo was far more pronounced than expected.  At the very time she needs to be building herself up for the transplant she’s weaker now than after the first round of chemo. 

 

The plan was to walk, exercise, and get ready for rigors the transplant will bring.   As Kristina says, Chemo is bad, transplants are worse.  As you go into the transplant you want to be as fit as possible. 

 

What has played out is the reverse.  The lumbar puncture brought her down and the ‘maintenance’ chemo furthered that direction.  The July 4th holiday wasn’t all that great as the 1-2 punch took hold.  Weakness, fatigue, and getting winded at the slightest uphill grade.  Plenty of time, about two weeks, was spent on the couch. 

 

That continues to this very weekend -- She’s now 11 days away from being admitted to the hospital in a weakened state. 

 

Kristina is worried about more delays.  Her care team, as recently as Thursday, has assured her there everything is on track and and her fatigue systems “aren’t that unusual”. 

 

And of course, there’s more to the story.  Last Saturday she was rubbing her eye and broke a blood vessel in her eye.  In and of itself, not serious, but an indication of low platelets.    On Sunday the eye was quite red and she called Fred Hutch and gave them a heads up.  They had her come in on Sunday, and her blood hematocrit level (crit for short) was 25, (normal would be 36-44, but if they dip below a certain threshold, a transfusion is called for.  The normal threshold is 26, but Kristina had requested that be lowered to 23.   

 

Now, you may ask, what the heck is a hematocrit level.   It measures the proportion of red blood cells that that carry oxygen throughout the rest of the body.  To low and you become anemic.  Symptoms would include fatigue, weakness, and low energy (ding ding ding ding). 

 

Also on that Sunday her Neutrophil level was 1.34.  Or 1,340. On that score, good news (remember when it was zero and too low to count?).  Her platelet level was 28.  Not great, but, given Kristina’s condition, not terrible either. 

 

But the low hematocrit level was worrisome. 

 

On Monday she did a type and screen in preparation for transfusion (red blood cells) which she got on Monday.   Her crit level was 24, but her platelet level had dropped to 20.  Neutrophils was 1.09.   

 

On Tuesday, she went back for another test and the  platelet count was down to 10. (transfusion threshold was at 11).  Monday’s red blood transfusion should have bolstered her crit numbers, but instead they only bumped one point.  The low number for the platelets triggered a platelet transfusion which she had on Wednesday – followed by another red blood transfusion on Thursday.

 

The neutrophil count had declined to .74.  Worrisome. 

 

All of this has Kristina on edge.  She should have been regaining strength headed into the transplant.  That isn’t the case.  

 

In addition, the trust she’s had in her care team has eroded a bit.  On this score there’s a bit of, well, let’s just call it ‘wiggle room’ for interpretation.  Kristina is in a battle for her life and feels like she’s negotiating for her care.  Her care team has missed some significant things, starting with the lifetime cap on one of her chemo meds which she knew about but took her doctor by surprise.  There have been some other mis-steps with the presentation of some clinical trials which were not appropriate for her.  She was also on Posaconazole for about 6 weeks too long (the side effects of which likely contributed to some of the symptoms she’s been experiencing).  She hasn’t been Neutropenic since May 30^th, but was just told to stop taking it last Friday night at 5pm.    Another point that her chart isn’t being thoroughly read.

Kristina has felt she’s needed to read up on these trials to keep things on track.  Kristina would urge any transplant patient to really dig into the research -- at a minimum you're going to ask better questions to your care team -- or, in the case of Kristina, have facts that correct the treatment plan. 

So – where does that leave us right now? 

There’s another BMA test this Wednesday followed by a team meeting Thursday – a data review to ensure everything is coming together for the following week.  The donor, a 12 out of 12 match, will begin harvesting the 25th.  Just 8 days from now.  Two days later, Kristina goes into the hospital on Thursday the 27th. 

It’s all coming together, but not in an optimal way.  But again, there’s nothing optimal about being in the fight for your life.  After fighting twice before. 

DELAY AND A SURPRISE ROUND OF CHEMO

 

 

It’s been nearly 2 weeks since the last blog post.  So much has happened.  Where to start? 

 

First the lumbar puncture (LP).   As announced in the previous post on the 17th, the results were good.  No blast cells.  The aftermath of the procedure itself was rough.  Most folks don’t have residual symptoms. Kristina's LP 5 weeks ago went perfectly fine. But Thursdays hit her like a ton of bricks.  And started her thinking about how difficult the road ahead is going to be. 

 

First off, what is a Lumbar Puncture?  (which is also called a Spinal Tap, cue Rob Reiner and Christopher Guest).   A needle is inserted into the space between two vertebrae to remove cerebrospinal fluid.  This is the fluid that surrounds the brain and spinal cord to protect them from injury.   The reason for checking that fluid for blast cells is that it’s very difficult for blast cells to get into the spinal fluid and once there, it’s very bad news with a poor prognosis.  The absence of blast cells is good news.

 

When the pressure level of the spinal fluid changes, or if there is some leakage, the brain is impacted and while some headaches are somewhat of a ‘normal’ post procedure symptom, Kristina was one of the rare patients with significant and miserable symptoms:   horrific headaches and spontaneous vomiting.  Spontaneous with very little nausea to warn of the sudden ejection of the previous meal.   

 

The procedure was on a Thursday, the symptoms hit Friday then magnified over the weekend.  On Monday evening there were hints of recovery, and by Tuesday morning most of the symptoms had receded.  But with roughly an 8 pound weight loss and residual weakness that she’s still recovering from. 

 

Now, a week later, she’s almost back to normal with strength growing day by day.  A miserable, scary and rude awakening of what three days of inactivity can do to an (there’s no other way to put it) an ‘older body’.    While Kristina isn’t your normal middle-aged human (sailing, skiing, etc) she’s also not 25 or 35.  Aging isn’t kind to the body and it takes longer to recover from, well, you name it, it takes longer to recover from. 

 

But as the week progressed, the Lumbar puncture was actually (sort of) the highlight. 

 

Now for the bad news.  On Thursday (the 22nd) during an appointment, Kristina mentioned a lump on her left calf, the result of a bruise she had acquired during her hospital stay.  Bruises aren’t uncommon when platelets are low and lumps form as the bruise recedes.  To Kristina, this is annoying, but probably normal.  To the doctor it was more suspicious.  He ordered an emergency biopsy of the lump.   

 

Then on Friday, Kristina learned that the biopsy triggered a sequence of events that has delayed the transplant and triggered a new round of Chemo.   More of a ‘maintenance’ type of Chemo, with less dramatic symptoms, but chemo nonetheless.   

 

The timing between Chemo and Transplant is critical.  In simplistic terms, the Chemo kills off the blast cells as well as brings the immune system to its knees.  The transplant is timed to be done after the body recovers from the chemo but before the blast cells can emerge.  It’s a window of time, but a relatively narrow one.   There was always the possibility of a second round of chemo, but it’s like the fine print on the back of the jar of medicine.  It was out there as a possibility but wasn’t part of the plan. 

 

Kristina has already had a couple of delays.  First, the two donors identified were in Europe, so that added some logistical issues.  The primary donor was pregnant so they went to the back up donor.  That cost another week.   

 

Now the biopsy, warranted or not, has caused not one but 2 additional delays.  The back up donor is ready now.  Like right now to be harvested. But until the biopsy results are in, Kristina isn’t cleared to be a transplant candidate.  So her team made a request for a delay in the ‘harvest’.  For reasons not known, but hey, it’s summer, the donor can either do it now, his next available window begins July 25th.  One of the two.  Her team chose the later date.  So the biopsy delay triggered a donor scheduling delay. 

 

Which brings us to the present set of circumstances with the transplant now outside of the window of time after Chemo.  And to add insult to injury, her care team is recommending a month between Chemo and transplant, which means she’s got to start quickly.   She started Wednesday the 28^th.

 

So a round of Chemo that wasn’t in the cards a week ago now all of a sudden needs to be done right now. 

 

All of this has pummeled Kristina’s already raw nerves and the roller coaster of a ride has left her a bit pissed off after the surprise after the early return of the pathology result confirmed (late Tuesday afternoon( her predicted / expected ‘negative for any malignancies’.  Disappointment may be a better word, but angry fits as well. 

 

Specific asks.  Now that ‘Chemo lite’ has begun, Kristina is likely to be feeling the effects this coming weekend.  She ‘thinks’ it’ll be ok – and she’s pretty sure she’s not going to need any in home care – BUT – she may need a grocery run if she’s feeling too weak.  She probably won’t need that, but she might.  So – if you are around, shoot her a text.  If you feel up for bringing a meal for her, confirm with her first, but do check the food prep cautions on the right hand side of the blog. 

GREAT NEWS, WAITING FOR NEWS,THE PATH AHEAD AND SOME REQUESTS

 

First the great news.  Kristina had a lumbar puncture on Wednesday, results are back and no blast cells in the spinal cord.  Really great news. 

The no news is from the BMA test on Tuesday the 13^th.  According to the RN, the Pathologists had not yet ‘resulted it yet’.  So, chalk it up to supply chain issues, but still it’d be nice to know.  Preliminary results from the first BMA test were back the following day.  

Now for the hiccups.  During her first of what turned out to be four appointments for the transplant protocols all was going well until Kristina asked about her life time max for one of the medications in the G-CLAM treatment.  This appeared to catch her doctor by surprise.  Along the lines of ‘oh, yeah, we hadn’t thought about that’.  The rest of the meeting was moot and ended a bit awkwardly.  

A revised protocol was offered during the second meeting.  A new clinical trial was being offered and after listening, Kristina asked, “So just how new is this?”.  They’d check and get back with her.  After she had left and driving away, they called.  It was brand spanking new as in never used before.   Too new for Kristina’s taste. 

On the third visit, they offered two protocols, both involving FLU/MEL (if you want to read more about FLU/MEL, you can google it, but I promise your eyes will glaze over).  One of these was in clinical trial and while it had been in use for a bit, the post-transplant treatment was randomized.  Meaning they effectively flip a coin on which treatment you’ll receive so they can later measure which one worked out better.  After listening to Kristina describe her decision-making process, I have a new found empathy for guinea pigs.  She ended up selecting the more tried and true treatment. 

There wasn’t supposed to be a fourth meeting, but a routine appointment turned into one and her care team challenged her post-transplant coverage plan.  The scope of people, lack of nighttime professional coverage and the lack of a training procedure likely conspired to her medical team’s concern.  Kristina now needs to prove the plan is viable and it’ll work.  

Then the push back on the care giving schedule.  And the uncertainty on the 2^nd BMA test. 

Despite all this, the schedule is proceeding.  Admission to the hospital on July 6^th and transplant on the 11^th. 

There are some pressing issues.  Kristina needs to prove she has a workable, viable, post transplant coverage plan.  Jerda is helping streamline the plan (some of the objections may have been simply visual) but there are some specific asks: 

1. Using the Calendar sign up for  backup slots.  It’ll help make the calendar look more robust. 
2. If you do sign up, you’ll be asked to watch a training video.  Nothing extreme, but there are ‘rules’ on what she should eat, how things can be cooked, and when to call Fred Hutch if certain symptoms appear.  It may seem like a lot of information, but it’s along the lines of a ‘pregnancy diet’ and for the immunosuppressed it becomes sort of a common sense approach to eating.  The care givers will be sent a link and we’ve added a section to the right and a video link for handy reference.
3. The medical care team is pushing Kristina to hire more professional help (what are we, her friends, chopped liver?).  What that boils down to is that subject of which we do not speak.  Funds.  If you are able, please go to the Go Fund Me page on the main blog page.  Contributions are sincerely appreciated.   

In the meantime, diagnostic tests have begun to ensure every organ / body part is ready for what is coming. 

Editors note:  We'll likely be blogging more frequently as the transplant approaches.  

FULL REMISSION

Full Fricken Remission

Kristina’s BMA test results came in with two more supporting tests and it’s unanimous.  Full Remission! 

This was the much hoped for news with the added bonus that her Neutrophil count is at 590.  The counts need to climb, and they are, but just a few weeks ago her count was zero followed by too low to count. 

Progress.  

The next BMA test is the 13^th to ensure the progress is maintained and the blasted blast cells are not emerging.

There have been a few bumps in the past 10 days – not huge, but her first donor became pregnant so now a back up has been identified, but that pushes the transplant by a week or so.

In addition the handoff from UW cancer care alliance to Fred Hutch wasn’t smooth.  Supplies hadn’t been ordered and appointments hadn’t been made.  It’s a complicated, large system of support and while it is one of the best in the nation, it’s another reminder that the patient and their advisors need to be strong advocates for their own care.   Aside from the various medical opinions she’s receiving it’s the management of the bureaucracy that takes effort.

The transfer process is now patched up, appointments have been made and it looks like everything is in order and yes, she got a sincere apology and admission the ball was temporarily dropped.  Other than some confusion and perhaps a bit of annoyance, no harm was done and the dropped ball was successfully recovered.

In other news, the calendar is full for her post transplant care.  The tribe came through and now it’s the backup slots that could be filled in.  This was a major hurdle that needed to be completed by June 6^th and it’s done.

Now Kristina is squaring her shoulders to the transplant.  Her body needs to do its part and an array of tests will occur in the next several weeks to ensure that her body is up for the challenge. 

She needs to go on the transplant diet now.  She met with a nutritionist and there are an array of ‘do and don’ts.  Here’s a link.  And another one.  It’s not only what you eat, it’s how the food is handled or prepared.  Some of it is common sense, but it is restrictive.  Especially for Kristina, whose cooking expertise is the equivalent of her earlier neutrophil counts.  By her own admittance, her skills are, well, too low to count.

Her other challenge in this ‘pre transplant’ stage is simply to get stronger.  Today it’s a walk to the zoo, and she needs to get out and walk more.  When you call her ask her about her recent exercise.  Remind her to drink water.  She knows all this, but let’s spread the nagging around.  It’s our way of showing love.

Authors note:  Speaking of dropping the ball, I certainly did by not promptly posting the test results.  The fault is mine (aided by some texts that didn’t come through, but it was a busy week).