Sunday am 8/6. Not feeling good. And some more history.

 

Most of these posts are vetted by Kristina.  Usually she’ll call and we chat, I write up a post, she reviews and edits it, then I make changes and post.  Today is different.  She’s not feeling well this morning and is having trouble concentrating.   In all likelihood this is normal.  Miserable, awful, and feeling absolutely sicker than hell, but, if we can call it that, the “normal” aftermath of chemo and a transplant. 

Yesterday she did exhibit the symptoms of C Diff, but the tests came out negative.  We don’t have to cover the details, but chemo wreaks havoc on the digestive system and those effects are, simply, miserable.

So that’s all I know this morning is that she’s way under the weather, but this was a well forecasted storm.  If there is news later today, I’ll post it. 

So, taking a sharp u-turn back into history, here’s a bit more on how modern chemo therapy was born.

In an earlier post, we mentioned that the roots of Chemotherapy were laid in WWI owing to the German army’s use of mustard gas.  What I missed was the nexus of why that lead to further research on any possible medical benefits this would have.  And it gets pretty interesting.

While the Germans used mustard gas during WWI, it was actually American made mustard gas during WWII that led to the research.  Americans never actually used the chemical agent, but 80 years ago this month, President Roosevelt signed off on a secret mission to get mustard gas over to the European theater in 1943 in case they’d need to retaliate against German’s usage of the gas.  No formal plans to use it, but a contingency plan if it was used against allied forces.

The SS John Harvey, a liberty ship, carried the secret cargo of gas and was to off load in Bari, Italy in December of 1943.  The captain of the ship, Elwin F Knowles, wanted to expedite the unloading, but secrecy prevented him from telling anyone about the deadly cargo.  The harbor was packed with ships and he had to wait several days for offloading.  Meanwhile the Germans staged an air raid on the harbor and during the attack, about 1,000 people were killed and 28 ships were sunk, including the SS Harvey.

Blogger’s note:  A few years ago I did some reading on WWII and was aware of this occurance.  The US tried to keep it secret, but issued a statement in 1944 admitting to the incident (there were too many witnesses to keep the secret).  It wasn’t until 1959 when the US declassified the records on the attack and it wasn’t until 1976, when a book came out on the incident did it get more widespread coverage.

In the immediate aftermath of the attack, there were hundreds of military personnel and likely more civilians suffering from the effects of mustard gas but prompt remedies were not provided as the medical personnel were initially unaware of what they were dealing with. 

Stewart Francis Alexander, a doctor and expert in chemical warfare, was dispatched to the scene and surmised that the offending agent was mustard gas but the symptoms he was seeing were different than what was observed during WWI.  The difference?  In WWI the soldiers inhaled the gas.  During the WWII incident the soldiers were swimming in the water and the mustard gas agent mingled with oil from the sinking ships and were absorbed through the skin.

It was the follow-up autopsies of the WWII incident where the lower white blood cell counts were recorded.   Autopsies of the victims suggested that profound lymphoid and myeloid suppression had occurred after exposure. In his report, Dr. Alexander theorized that since mustard gas all but ceased the division of certain types of somatic cells whose nature was to divide fast, it could also potentially be put to use in helping to suppress the division of certain types of cancerous cells.  (that last part was cut and paste).

It was that report that prompted the defense department to enlist two pathologists to explore any medical benefits of mustard gas and the initial focus was on Leukemia.

An interesting side note on how chemotherapy came to be.  Yes it was the Germans who initially used the gas, but it took the Americans secretly getting a stash of a weapon they never actually used and a horrible attack with unforeseen consequences that led to a sharp doctor surmising that perhaps there may be a beneficial side to the weapon.

None of this has anything to do with Kristina – except that it has everything to do with Kristina and a nod of the head needs to be given to the past suffering, coincidences and curiosity that lead to modern treatments. 

I would find all of this fascinating were it not for the fact that a dear friend is lying in a hospital bed feeling desperately ill.  Send positive thoughts to her.

Saturday August 5th - Morning Post

 

Cytoxan (aka Cytarabin)

Kristina got her last dose of Chemo yesterday , a drug called Cytarabin (or Cytoxan)

What is Cytarabin you may ask (or even if you didn’t, if you care to read on, we’ll tell you).

Here’s what the literature says.  Cytarabine is the most effective cytotoxic agent in the treatment of acute myeloid leukemia (AML).

Cytoxan.  Cytotoxic.    Any time the word toxic is used in something you put into your body, it’s gotta be good.  Toxic?  Yummy.  May I have two please?  (Did they really think changing the suffix from ‘toxin’ to ‘toxan’ would work?

Let’s break down the word cytotoxic.  Two words.  Might as well put a “Mr Yuk” sticker on the second one but the first one is Greek from the Greek word Kutos, or ‘vessel’.  From the word vessel but means ‘Cell’ (as in cytoplasm).  So Cytotoxic.  Cell Killer.  Trained assassins that seek out mostly cancer cells with collateral damage to cells that act like cancer cells (sounds like poor policing, but I digress).

In the early 1950’s, cytarabine was discovered as a nucleoside (containing arabinose sugar) within a species of sponges (cryptotethia crypto, if you really want to know).  These buggers play a role in DNA synthesis. 

According to my research (over coffee, pursuing journals) I found a guy who claims that “Cryptotethia Crypta, possibly one of the coolest sea sponges ever, possess two very interesting free state elements”.. then goes one to use way too many syllables and after he uses the word ‘cool’ he wanders off into scientific speak that my partially caffeinated brain can’t understand.

But the essence is the chemical in these sponges inhibit cell growth by attacking the cells DNA replication cycle.  If you’re not replicating, you’re safe. Any cell that replicates becomes the target.

In what is a clear copy paste with little understanding of what this actually says, here’s the formal description:   Cytarabine is incorporated into DNA, it blocks DNA synthesis by inhibiting the function of DNA and RNA polymerases. The most essential step in the AraC activation is phosphorylation into the monophosphate form, which is catalyzed by deoxycytidine kinase (dCK).

Personally, I like the fact it comes from the coolest sea sponge ever. 

Blogger pauses, sips coffee, ponders the larger world. 

Chemo, as we learned a few posts earlier, has roots in the German Army’s use of mustard gas during World War One.  Now we find out that one of the specific chemicals used for AML comes from Sea Sponges.  Medical discoveries all within the 1900’s and further refined over the past several years to offer hope and a life saving gift to Kristina, currently lying in a hospital bed benefiting from these medical discoveries and advancements.

Kristina slept most of yesterday afternoon, a reprieve as the side effects of these medical wonders kicked in. 

Kristina is now entering a critical phase.  As much as the meds and new stem cells are doing their thing, there’ll be a shift to her own body’s creation of healthy blood cells.  But she’s got to ward off infection which is now the most acute risk between now and when healthy blood again courses through the body.  .   With a highly compromised immune system, it’s infection that becomes public enemy #1.

She texted this morning.  Yucky coating in her mouth and no real appetite.  She’s forcing down a ‘wee bit of food here and there’.    She’s using some stuff Leigh gave her for dry mouth and it’s helping a bit.

And the final bit of news is that they’re checking for C diff again.  Results should be back by end of day.  This is one of many infections they’ll be looking for.  The challenge is that some of the side effects of the chemo can be very similar to C diff.  The C diff bacteria emit a cytotoxic substance, so tests are needed to discount the C diff possibility.  In an abundance of caution, her visitors will need to gown up until that possibility is discounted, which should be later today. Edit 9:08pm.  Results came in negative.  Whew!!!

Friday August 4th.

 

Well, the well forecasted storm has hit.  Kristina is hoping to avoid the worst of it, she’s been there before.

She slept in a little and felt a bit spacy, then waited as various body parts checked in, most were moving and confirmed they were still in reasonably good working order.

Today at noon she started her last round of Chemo – Cytarabin, which in the past has given her a rash on her lower extremities.  There was a bit of nausea this morning and as a write (11:45am) the dry heaves have begun. 

While there was a momentary crack in the veneer yesterday (oh this is really happening) the cancer, chemo and other stuff haven’t disabled the sense of humor.  It remains strong. 

So today will likely be a bit rough but she’s still hopefull she can avoid the more severe side effects of the chemo.  Time will tell, let’s all send her positive energy.

CHEMO -- a brief history and what's about to happen

 

This is going to be greatly simplified, but Kristina reviewed and said ‘post it’. 

We all know that Chemo has massive side effects, but the question that popped into my head was ‘why’.  What was the history of Chemotherapy, how does it work, and why are the side effects so miserable?

Surprisingly (to me at least) the roots of ‘Chemo’ date back to and begin with Germany’s use of mustard gas in world war I.  After the war two pharmacologists from the Yale School of Medicine were tasked by the defense department to see if there were any beneficial uses of these chemical agents and they made the link between derivatives of this terrible battlefield weapon and their ability to kill cancer cells.

The specific cocktails involved in Chemo have evolved quite a bit and are varied in their approach, but they work by killing fast dividing cells.  Most cells our bodies don’t divide particularly fast or regularly.  Cancer cells divide quite rapidly, so if you send in an agent that seeks out and kills fast dividing cells, it’ll attack the cancer cells and most of our healthy cells that don’t quickly replicate are left unharmed.

But there are a few categories of healthy cells that do replicate quickly and those are the ones that become collateral damage with Chemo’s onslaught.

The key cells that divide quickly are found in your mouth, blood, digestive system and hair follicles.  So hair loss, mouth sores, and all sorts of digestive tract distress are the side effects.  The blood levels plummet and there goes the immune system.  Infection risk is high.

So after chemo your digestive tract goes to hell, nausea threatens expel food one way and the other end, and the plumbing that lead to it, doesn’t work well either.  Nothing tastes good, your mouth feels rotten and any germ that feels like it can attack you without risk.

Chemo also creates a fog in the brain.  “Chemo Brain” becomes a phrase that’s well known to those that have undergone treatment.  Add to that the side effects of the drugs that are controlling nausea and other meds and, well, it’s not a walk in the park by any stretch.

So while some of us are looking forward to SeaFair and the air show over Lake Washington, Kristina, having gone through this before, is awaiting these side effects to fully manifest themselves. 

Using  sailing as a metaphor, picture yourself on the ocean without any port to run to.  A well forecasted storm is headed your way and you can’t outrun it.  You are going to have to shorten sail, make sure everything is securely stowed and dog the hatches tightly shut and simply take it, hoping that all your preparation will keep you safe.  Miserably uncomfortable, but safe.

This morning I asked Kristina how she felt on a scale of 1 to 10, where 1 is lousy and 10 was pretty good all things considering.  She said 7 or 8.  On the plus side no stuttering or shakes so far this morning.  But her appetite is gone and while she can’t quite put her finger on it, she says ‘something is brewing’.  She doesn’t feel completely ‘right’.  Storm clouds are gathering.  Yesterday she mused that Saturday would be the day she’d start to feel much worse, perhaps it’s starting a day or two earlier.

Take a moment and let’s hope our collective positive energy flows her way.

DIP and the rocky journey

 

Ok, it's a bit juvenile, but the graphic above captures the curvy and erratic journey of a transplant patient.  There are little and big things lurking along the way that vary from irritating to annoying to frightening.

Sometimes it helps when things are explained.   It may not make the symptom go away but at least an explanation can take away the worry that accompanies a symptom.  

Take her stuttering speech, the inability to walk well and her shakiness and tremors.  Annoying and frustrating.   But explainable as her doctor did a couple of hours ago.

It's related to the nausea meds.  The Dr explained there's a tie between those meds and cognition.  It's a thing.  

While the Dr didn't use this exact term, there's a condition called DIP.  Drug Induced Parkinsons.  No, she doesn't have Parkinsons.  But the symptoms are not unlike Parkinsons and should subside with the cessation of the meds.

Kristina was really feeling those effects today but the doctors explanation eased at least that worry.

AUGUST 2nd. That shaky feeling the day after

 

Well yesterday got away from Kristina.  Like platelet transfusions there’s a sedative involved, but more this time.  There’s a preservative in the stem cell stew and they sedate you in case there are any reactions – so just as the transplant started, the sedatives took effect and, well, the rest of the day was pretty much lost in the fog.  She woke up and thought that it was 2:30 in the afternoon but the clock said 7:45pm.  The clock was right.  An odd, weird day.   But a good one with the long awaited transplant done.

This morning she reports that she’s feeling pretty good, but a bit shaky – stuttering and stumbling over words, not walking right, etc.  Largely it’s a repeat of her earlier 2 transplants.  She thinks that sensation is due to the antiemetics she’s taking – the drugs to combat nausea.  She’s frustrated by it, but she knows what’s coming – the delayed impact of the chemo. 

She’s expecting that by Saturday she’ll be laid pretty low by the after effects of chemo.

Today’s news:  Her Liver Enzymes shot up.  Way up.  They’ve shot up before, but not to this degree.  There may be some med related impacts.  Her doctor said it was like she went on a huge drinking binge last night.  Which she didn’t.  Or at least doesn’t recall (maybe yesterday’s singing nurses returned for a party?  Probably not).  A short term spike that’s med related isn’t a huge concern and the meds are being changed up to deal with it.  They are closely monitoring and hopefully they’ll go down in the next few days.  For now, it’s not a huge deal.

The short story is that all of this is largely ‘normal’ and things are going as expected – with the possible exception of the liver enzymes.  So for now, ‘so far, so good’, but by the end of the week or the weekend, she expects to be hit by the after effects of the chemo.

She’d love to have visitors.  Check in with her first (can’t have too many at one time) but in the formal language of one set of my grandparents, “She’s receiving visitors”.

Random Updates on August 1st

 

Stem Cells have arrived

So I'm getting some texts from Kristina and will add to this page through the day.  She had a rough night last night, but sounds pretty excited now that the process has begun,

First, the pre-transplant ceremony.  Complete with a 'happy cell day'  card.  It's a transplant thing.  So this just happened a few minutes ago:

Complete with card!

Really nice touch

And so it starts

Kristina says you can actually see the tiny little golden stem cells!

Stay tuned.