Less GVHD, more HGTV (Day +216)

GLOW. It’s a fantastic Netflix series I binge watched the entire first week of July. Little did I know, while I was watching lady wrestlers battling it out in the 80’s, there was a battle going on right next to me…

It was Graft versus Host. Jeff’s New Immune System versus Jeff.

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Jeff and I were totally under the impression that we were in the clear by July. The more dangerous stages of GVHD normally occur in the first 100 days and he had avoided it. Or so we thought.

GVHD occurs when immune cells identify the body as something foreign. You actually hope for a LITTLE bit of GVHD, because the cell’s ability to recognize what’s foreign is what fights the cancer. If your new immune system is too similar to your old one, it won’t know to fight the cancer.

This is why GVHD has a higher chance of occurring if your stem cells are from an unrelated donor. Jeff’s stem cells came from his sister, and they were a complete HLA match (jackpot!) but GVHD also has a higher chance of occurring when stem cells are given female to male (or vice versa). ISN’T THIS ALL EXHAUSTING? But wait, theres more:

All allogeneic stem cell transplant patients are given drugs to suppress the new immune system. They’re slowly weaned off so that the cells have time to get familiar with their new body and not attack it. Here’s a gif representation:

IN THE BEGINNING THE CELLS ARE LIKE THIS

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BUT AFTER WEANING OFF IMMUNE SUPPRESSANTS THEY CAN GET LIKE

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Jeff’s new immune system seems to have qualms with his digestive tract specifically. It’s preventing him from absorbing protein, which didn’t sound so terrible at first – big deal! We’ll go to GNC and get some Muscle Milk, solve this here and now. Except it doesn’t work like that (but I, a non intellectual, was willing to try it). The lack of protein becomes a big problem because protein begets albumin, which is what keeps water in your veins. Without albumin, things (your organs, specifically) can take a quick turn.

The first thing doctors do when they realize you have GVHD is give you a very high dose of steroids and cross their fingers and hope it works. It only works for about 30% of patients. When that doesn’t work (like it didn’t for Jeff), photopheresis is the next option. Here’s what it looks like:

The photopheresis machine has a very nonthreatening sound to it – like a Cessna during taking off.

Jeff had a new access line placed into his chest so that they could run his blood through this machine. The photopheresis machine separates the immune system cells and – for lack of a better word – sunburns them so they become less cranky. They then circulate the cells back into his body. He does this 3 times a week, for 2 hours at a time, and it takes weeks to see an effect. This is rough because sometimes the GVHD is so acute that people can’t wait weeks to see results. There has to be something better than this, right?

Enter Jakafi.

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Jakafi is the drug’s given name but I prefer to call it Jafar.

Jakafi was originally created for Polycythemia Vera, a slow growing blood disorder. The pill works by lowering your blood cell counts (it’s essentially chemo). Researchers found that it’s effective on some GVHD and so it was approved for off label use only in the last couple of years.

So we waited for the drug manufacturer to approve Jeff’s use of Jakafi, then we had to wait for insurance to approve the cost. This took a week and it often takes much longer. This is a huge issue when each pill costs around FOUR HUNDRED DOLLARS. Jeff takes 4 of these a day. A nurse dropped one on the floor yesterday and I nearly threw up.

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Jeff is on day 12 of Jakifi and it can take weeks to work. Each day in the hospital stretches into the next. I find it ironic that the only thing that gets Jeff’s mind off of everything is watching back to back episodes of HGTV shows when we’ve had our fill of acronyms this year.

Every day we risk a life threatening infection by continuing to wipe out his immune system to control the GVHD. Because of this, numerous antibiotics and antifungals are given daily via IV. This puts incredible strain on the kidneys. There has to be perfect balance, so nurses and doctors are working around the clock to keep his body running. It’s a lot like a symphony. The most expensive, anxiety inducing symphony. It’s like the symphony they hired to record the score for JAWS. And for now, all we can do is “wade”* it out.

*I’m so sorry, but not sorry for this.

 

 

More Gifs About My Husband’s Cancer

The first time you witness chemo induced nausea:

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The 10th time you witness chemo induced nausea:

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What it feels like the first week of 24/7 inpatient transplant:

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What it feels like halfway through inpatient transplant:

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What it feels like the last week of inpatient transplant:

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When nurses wake you up for 4am blood draws:

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When you’re in a group of people and all you can think about is neutropenia:

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When you ask a cancer patient if they need a wheelchair for the first time:

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When you ask them if they need a wheelchair for the 10th time:

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When you spend hours on Web MD and Symptom Checker before seeing your doctor:

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When you scramble to the ER and forget to pack your own bag:

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WEAR YOUR FACE MASK, BEN

Another HSTCL patient and new friend of ours, Ben, is heading into transplant soon and he’ll be the first HSTCL to undergo a double cord transplant. He recently spoke about his diagnosis and it’s amazing hearing him so honestly talk about it. We can’t wait for him to join Jeff in remission!

(you can donate to his Go Fund Me here: http://www.gofundme.com/cushingsmedicalfund )