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New round of chemo started this afternoon.

They’re going to be doing 1-liter bags of fluid (containing 400mg of Etoposide in each) as a 3-hour drip, repeating them for approximately 36 hours.  As I type this, the second bag is nearly finished.

Then there’ll be a 12-hour break.  Sometime early Saturday afternoon, the other chemo med, Cyclophosphamide, will be done on a 2-hour drip for three days in a row.

These are heavy-duty meds, with a lot of risk of side-effects including nausea (particularly with the second one), problems in the GI-tract (the full route from your mouth to out your butt), and other things.  They don’t know which, if any, I’ll end up having, but they have to tell me about them.  (And I feel better knowing, really, even though it also takes some effort to convince myself that I shouldn’t expect everything to happen.)

They said this course of treatment will be different from my earlier ones, which had similar potential possible side-effects.  I was lucky and had very few.

Once they’re done, we wait for a few weeks with my numbers starting back down at the minimum/zero amounts.

Crazy timing

Needless to say, we didn’t expect things to go this way.  We knew I’d have to come in for another round of treatment, but the level required, and the manifestation of the leukemia cells, were both a shock.

This means some things won’t be able to happen as much as I’d been hoping.  We thought there was a chance I’d still be at home into next week.  Some close friends of ours from California will be staying with us next week as part of a trip they’re doing.  We knew when originally coordinating the visit that there’d be a decent chance I wouldn’t get to see them at home, but the hope was still there that I’d be able to hang out with them.  Can’t do much about it, of course—I’ll get to see them a little bit assuming I’m in decent shape next week.  Knowing Elana will get to have a lot of time to chat with them is a big plus.  And I know our boys will have a lot of fun playing with their two daughters, who they’ve not seen for a couple of years.

We went in this morning for another set of bone marrow samples, as well as blood samples.  We meet with the lead doctor tomorrow morning; we’re expecting I’ll be admitted back into the hospital tomorrow or Thursday to start my third round of chemo.  We’ll be packing up clothes and things just in case.

More details tomorrow.

After blood samples taken today, all looked good enough to not need any transfusions, and now we’re just waiting for next week’s meeting on Tuesday.  A set of bone marrow samples—aspirate & biopsy—are likely sometime next week, with those results being part of deciding what follows.  (e.g., third round of chemo.)  We’ve not yet heard from the transplant team at St James’s Hospital, but figure we will in the next week or two.

Numbers still improving:

• White cell count: 0.8 -> 1.6 -> 2.3 -> 7.3
• Haemoglobin (I’d been incorrectly calling this the red cell count): 8.3 -> 10.4 -> 10.4 -> 10.7
• Platelets: 28 -> 50 -> 67 -> 58
• Neutrophils: 0.5 -> 1.2 -> 3.1 ( good range is 2 to 8 )

My energy levels are also getting better, a bit at a time.  I’ve been able to walk Eoin to his pre-school for the last three mornings, which was really wonderful.

Achy Breaky Nerve

A couple of days after my last biopsy, I started waking up with a decent ache in my right upper thigh, just before the knee.  It’d been going on for a while and impacting my sleep, making me sometimes wake up at 3 or 4 in the morning.  I asked one of the haemotologists about it last week.  He said he believes they pinched a nerve when they went did the biopsy via my pelvic bone.  It’ll be a few weeks before that pain goes away.  Argh!  It’s usually there in the morning when I wake up, but they gave me some pain killers (tramadol) to help alleviate the pain.  Taking one before I go to sleep the night before has made a big difference.

My numbers are still heading up in the right direction.  The blood samples taken today were to see if my neutrophils were making progress, and setting me up with growth stimulating hormone shots if they weren’t.  Good news is that since last Tuesday they went up from 0.5 to 1.2, where being over 1.0 is their criteria for not being at “significant risk” of infection.  Nevertheless, it also doesn’t imply I can sit in a movie theater or be in a room full of people.  The other stats, comparing last week’s results to the two sets of this week:

• White cell count: 0.8 -> 1.6 -> 2.3
• Red cell count: 8.3 -> 10.4 -> 10.4 (still)
• Platelets: 28 -> 50 -> 67
• Neutrophils: 0.5 -> [not done Tuesday] -> 1.2

I’ve got another week at home, then back in to the Day Ward for more samples.   The following Tuesday we’ll meet with the doctors to learn about their plan for when my next bone marrow biopsy will be (perhaps sometime that same week).  A week or so after that, give or take, we’ll meet again to talk about when my next cycle of chemo will take place.

Sometime in the next couple of weeks we may hear from St James’s Hospital about having at least an initial meeting just to lay the groundwork for a bone marrow transplant should they find it is necessary.

For the moment, as long as I’m careful and stay healthy, I’m getting to enjoy being at home and spending lots of time with Elana and the boys. 🙂  And at least today, Ireland is giving us a decent early summer day, which is a nice plus.

I’m still at home.

We went in for blood samples and to meet with the lead doctor this afternoon. They’re seeing slow recovery of the bone marrow from the chemo treatment, and some reduction in the leukemia cell count. They want to give it another week or two to see how things progress. They also want to line things up should they reach a final decision that a bone marrow transplant is necessary to really combat the disease.

Details

From the bone marrow samples taken last week, the apirate (liquid) showed a reduction to 4% of leukemia cells, meaning it’s technically in remission. However, the bone marrow biopsy (solid) had some instances which they want to test further, since apparently the growth hormone shots (Neupogen) I’d been doing can skew those parts of the results.

Platelets were up to 50 (yay!), white cells around 1.2, and neutrophils were at 0.8. On Friday, we go for another blood draw so they can see how my numbers are behaving (and hope for further improvement). They also want to see if they need to give me Neupogen to boost neutrophils through the weekend to Tuesday next week.

Another biopsy will come either next week or the week after, depending in part on the numbers that they get on Friday and on the following Tuesday. They want to see if the biopsy results change after giving it more time. We meet with the lead doctor again on that Tuesday to learn more.

A further round of chemo will come some time in the next few weeks (less than 6 weeks), but we don’t yet know when.

The word “transplant“

Since my body didn’t respond quickly to the first round of chemo, and even after this one it’s showing itself to be a slow pace of recovery, they are beginning the process of considering a bone marrow transplant later down the line. (Some time after the next round of chemo.) If they decide this is necessary, they want to have already begun looking for a match. (Sadly, my brother isn’t, but apparently that’s generally low odds.)

Today they’re sending a formal letter to the doctor at St James’s Hospital here in Dublin, which is where transplants are actually done. They need to start the process now so things are set up if they find that chemo treatments aren’t doing the job. They also want to get a second opinion about their findings.

We’ve only just begun to process this in our heads.

I’m okay to stay home for the next week.

We went into the day ward this morning for bone marrow samples (both the aspirate/liquid and the biopsy/solid ones).  Also got my central line dressing redone and had blood samples taken.  They said we were all done!  I waited inside the entryway downstairs while Elana went to get the car.

But then she came walking back from the parking garage.  The liaison nurse had called her, saying they already got my results and if we’re still there, they want to look at giving me some blood transfusions  My red cell count (hemoglobin) was around 8.3 or 8.4, just under the 9.0 they prefer.

So a nurse took the initial blood sample, and said she’d come to the waiting room and let us know how long it’d take for the blood bank to get the blood together for me.  It was already past noon, and it takes some time for them to get the blood bags together.  It usually takes just over 3 hours for each one to drip its way into me, so it’ll be about six hours of sitting, once they got them to us.

Coincidentally, I have to return tomorrow morning for a CT scan to check that the infection in my lungs, from the pneumonia I had in March, is now long gone.

The haematology doctor came to let us know it was going to take a while to get the blood bags from the blood bank, and since I’ve got the CT the next day anyway, we can just go home and do it tomorrow.  So I’ll be spending most of the day there.

Related to the bone marrow samples, we’re meeting with the doctors on Tuesday next week to talk about what happens next since it can take some time for the samples to get processed.  This gives the doctors the details they need to determine when I’ll be getting my next chemo treatment, and which one they should use.

Knit Lots, Knit Often

One way I’ll be making the time go by tomorrow is by working on my new knitting project—since the scarf is finished!

The next project is a hat using a pattern called Turn A Square.  The scarf had 20 stitches for each row; the hat is knit in the round, starting off with 96 stitches.  Yowza.  More learning. 🙂

We went into the hospital today so they could take blood samples, which were usually being done each morning on the ward. Based on the results, they’d see if I needed a bag of platelets or a blood transfusion, and get a look at how I’m doing.

The real surprise: my platelets are up to 28, so they know they’re being made. My neutrophils were at 0.9, but they said 0.5 is the number which would have given them some concern. With the platelets increasing, they expect the neutrophils to follow suit.

So I don’t have to go back in for any other tests until Tuesday, when they’ll do the bone marrow tests and we’ll know what the next steps are going to be. I just have to be careful and not get sick, get a fever, etc.

But I’ve got the weekend. 🙂

I’m home, discharged from the hospital.  My neutrophils were 0.5 yesterday; they gave me a growth hormone shot.  The sample taken this morning had them at a whopping 5.1.  The doctors wanted them to go up by 0.1 or a bit more to go ahead with letting me come home.  I don’t know if they were already expecting that sort of a result.

On Friday I go into the Day Ward and have my blood drawn for testing, and they’ll give me a bag of platelets or a blood transfusion if I need either/both.   The results of that test will help guide what else happens next week.  Tentatively, on Tuesday I’ll go back to the Day Ward for the bone marrow test (aspirate and biopsy).  It may happen later in the week based on how my counts look, but I’m not sure what the criteria will be.

I’m due further chemo treatments regardless; exactly what the next one will be will get figured out next week.

Right now, I’m just trying to grasp the idea that I’m home.

There’s a chance I’ll still be in the hospital tomorrow—and some sort of chance I’ll be at home.

The doctors want to see how my body does with a growth stimulating hormone shot today, after my numbers did the predicted dip. (The blood samples taken this morning had white cells at 1.0 and neutrophils at 0.5.)

My consultant, the head doctor, said she thinks if my white-cell count (specifically the neutrophils I think) shows a move up with the shot, and if I’m still well, they may discharge me tomorrow. If my platelets have moved down from the 20 they were today (and were yesterday, which is itself kind of interesting), they’d give me a bag of platelets—what they called a “pool”—before being discharged.

I’d come back in on Friday to the “day ward” for blood tests and a review of how things are progressing; based on the results, they might give me platelets or a blood transfusion then. And again to the day ward early next week for the same set of tests.

Those will decide when in the next 7–10 days they decide to give me a bone marrow test to check the status inside. If the numbers don’t make the progress they want, they’ll do the bone marrow test earlier in the week; if they’re doing ok, they’d look to do it towards the end of the week.

Before all of that, if the count in the morning doesn’t go up even a bit, I’ll be here. Likewise, if the counts do it enough for me to be at home, developing a fever or starting to feeling sick will mean I have to come back.

So, don’t know what to expect yet. We’ll see. Really trying to restrain the hope since we’ve been burned before, expecting one thing and getting the opposite. Neither of us want to go through that again.