Tag Archives: Maxeran

Day +30 (1 month)

It’s been one month since day zero, ONE MONTH since I got my stem cells back. I can’t even believe it!

It’s been an uneventful couple of weeks here. Like I mentioned in my previous post, I have good days and bad days.

In general, my energy level is better than prior to transplant. I’m not waking up every morning already planning how to get back to bed, and sleep. Rest assured however, I am still a #sleepviking, and taking “healthy” naps…especially on bad days.

Not much else feels different so far. I’m still pretty unsteady when I stand or walk, and keyboarding is still proving to be more challenging than a few months ago. I write this with an awareness of what the doctor’s said all the way through. The goal wasn’t to get more function, that will be a plus, the goal was to stop further loss of function.

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Module L , waiting to have my PICC line removed

Some of the highlights from this week included: our weekly check-in at Module L (went fine, AND they took out my PICC line!), and a trip to a matinée of Bridget Jones’ Baby. It was cute, and mom enjoyed it too. We took a lovely drive to see the fall colours in the Gatineau Park, and we made it up to the Champlain lookout. What a view!

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Me and mom at Champlain look out.

I’m feeling a little bit of cabin fever. We’ve gotten a bit of conflicting info about whether or not I am “cleared” to leave the house. Some of the BMT nurses say no, while some say that going out is ok as long I stay out of crowds.  Unfortunately, the puzzles I took out for the puzzle addict mom have pieces that are too small for me to manipulate. She just bought one with larger pieces, we’ll see how that works.

The hubs has also reintroduced me to cribbage, and so we have a bit of a contest on, loser (the hubs), owes the winner (me) a coffee. *wink*

My appetite, has been up and down. I’m still taking all the anti-nausea meds (olanzapine, Zofran, Maxeran, Nabilone) and they’re still doing their job. *thumbs up*

Now a final note…on hypochondria. Ha! How’s that for a closer! I joke, but it’s real.  I am surprised (a little) to find out how hyperaware I am of EVERYTHING. The food I’m eating, the people I’m near, the doorknob I’m turning, or the handrail that I’m using. With their germs everywhere…forever unclean… I’m really having trouble not turning into a germaphobe who panics at the occasional sneeze, but I’m doing my best.  They keep comparing my fragile immune system with that of a baby’s, and I’m telling myself babies are resilient…hey, it’s how I get through.

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Update…update…update…

Hi all,

This is Judy again. It’s been a challenging few days over here, but we want to make sure to keep everyone apprised of our comings and goings.

You can see the schedule of Jessie’ chemo days in the pic below. A nomenclature to highlight here:

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Rabbit anti-thyomyocyte globulin (rATG)  references an antibody derived from antibodies that do indeed come from…rabbits. It’s used against human T cells (another part of the SCT we want depleted for transplantation).

Here we go:

September 19th TO the 21st, 2016 (Day -4, -3 & -2) 

Thank God for the catheter is all I’m gonna say; it was heaven sent – although the collection bag had a cytotoxic skull and crossbones sticker on/ it. I guess that’s why they pay the RNs the big bucks.

 

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Hmmmmm …

While I suspect that the combination of anti-nausea drugs (olanzapine, Maxeran, Emend, and Zofran) have built up to make Jessie drowsy and lethargic, she didn’t sleep well during these days/nights. Between having vitals taken, pumps alarming, pressing the call bell for more anti-nausea meds, and then breathing deep until those kicked in, there wasn’t much quiet time. She was able to sit up in a chair, have a shower, and go for a few walks, but was still uncomfortable longing for her own bed. Her vitals stayed normal during all of this time. Yay!

As a nice surprise on Wednesday,  we got news that if all goes well during the transplant infusions and Jessie is feeling good, she can GO HOME after receiving her stem cells on Friday – travelling to and from the hospital on a daily basis to monitor  vitals, blood work, and medication, but spending the evening and night IN HER OWN BED!

September 22nd, 2016 (Day -1)

This was a rest day. Jess received one unit of blood. 

September 23rd, 2016 (Day 0!!!) “New birthday!”

Jess’ WBC is <0.1.

Four bags of her CD34 enriched (CIDP-free) stem cells were infused back to her over the course of about an hour. Each bag was thawed just prior to being hung and her vitals were done before and after each bag. This was a very big hour in our lives and one we have waited and hoped for for a long time. 

Soon after the infusion Jess started with some stomach pain. This and heartburn would get progressively worse as the afternoon and evening wore on. 

By 5:30 pm-ish we were on our way home! They warned us that the preservative that the stem cells were in could cause her to smell like cream corn because it is excreted through the lungs. And, DID she smell like cream corn … windows down in the car on the way home … cream corn smell.

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One of Jess’ four bags of stem cells (thawed and ready to transplant) 🙂

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Jocelyn, a GREAT nurse and teacher. She’s as excited about Jess getting her stem cells back as we are … almost …

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Getting “sprung” after receiving her stem cells.

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“Happy NEW birthday to you, happy NEW birthday to you. Happy NEW birthday dear Jessie, happy NEW birthday to you!”

September 24th, 2016 (Day +1)

Jess says it is good to be home and be in her own bed. She is taking sufficient meds to keep nausea at bay however since last night already mucositis is making her stomach sore constantly and her throat and upper GI painful upon swallowing anything including water. For this she is taking maalox, sulcrate, and dilaudid (2 mg every 2 hrs). So it’s been a cycle of take meds, sleep, and try to eat and drink, and repeat. 

This afternoon at her hospital check in the dilaudid was increased to 3 mg/2 hrs.

September 25th, 2016 (Day +2) “I can feel my heartbeat in my face”

Jess is having breakthrough stomach pain. So while 3 mg dilaudid/2 hrs takes the pain away it makes her sleepy and after 1.5 hrs she is needing something more for pain. 

This afternoon at the hospital check Jess was given subQ dilaudid and it worked like a charm except all she wanted to do was sleep … but sleep pain free, I might add. She managed to get in about half a cup of chicken soup during this time…in her stupor.

12 mg 2x/day of slow release dilaudid to start at 8 pm tonight was added to her medication buffet.

Food yesterday and today has consisted of very small amounts of soup, yogurt, scrambled egg, warm rice cereal, Ensure, and ice cream.

We were already told to watch her respiration on the 3 mg of dilaudid so that when the slow release was 12 mg, oh my! I get the whole s-l-o-w release thing but fifteen minutes after taking it she was totally pain free BUT she could feel her heartbeat in her face and ears. We couldn’t get an accurate read on the home BP monitor. A call to the on-call hematologist was in order or else hubs or I were staying up all night to watch her breathe. We were assured this was not unexpected and what we had to watch was her breathing … or lack thereof… What? Me wax dramatic? No way 😉

September 26th, 2016 (Day +3)

Last night was virtually a no sleep night. We are approaching 72 hours that Jess hadn’t slept more than 90 minutes at a time. We were happy that our hospital check was at 10 am today because we need a longer acting pain solution so that she can take in more calories and hydration.

Jess’ WBC today was 0.02 and her phosphate was low. So today she got IV hydration, IV phosphate, and three doses of diluadid subQ (including one for the road as we were leaving). They changed a few of her meds to liquid form to make them easier to take and, since the slow release dilaudid was ineffective, applied a fentanyal patch.

We were told that the mucositis will begin to resolve once the new stem cells begin to graft.

We watched some of the Clinton/Trump debate and she managed to get down a cup of Ensure enriched hot chocolate and a scrambled egg w cheese. Here’s hoping tonight is a better sleep.

The SCT day program at Ottawa General Hospital runs like a finely oiled machine. It is very impressive. Interestingly, all of the hands on care is provided by RNs (sometimes with student nurses in training); there are no RPNs or PSWs. The nurses are knowledgeable, wise, and caring. The program has a dedicated doctor, dietician, and pharmacist on the floor and they see Jess each day.

Bedtime  …and we hope she gets more rest.


Take the drugs!

September 15th & 16th, 2016 (Day -8 & -7)

Both days started with mom and I arriving at the hospital and being on the 5 West BMT unit for 8:00 am. It took the nurses (…still awesome) about two hours to set me up and start the Busulfan flowing. The delay is because they do a vitals check, blood draw and then wait for the results, before they can order the chemo to the floor and get started for the day.

The infusion was wonderfully uneventful and I slept much of the time. We left for home again around 2pm and I headed straight to bed, getting up only for a bit of supper.

 You know, I thought I was extremely fatigued from the CIDP(!); unbeknownst to me, there was a whole underground garage of fatigue I had not yet accessed before now. Luckily I’m able to sleep well (#sleepviking), and besides a general malaise, I felt okay. No nausea or vomiting! (knock wood)

Feeling a little bit of cabin fever, mom went out to pick up some prescriptions on Friday evening, and while she was out, a beautiful surprise arrived at my door to visit! My sister, all the way from Sudbury for the weekend! #score #sisterlove

 September 17th & 18th, 2016 (Day -6 & -5)

Saturday, the 17th, was a rest day so we didn’t have to go in to the hospital at all. (Woohoo!) I got up to take my morning pills and was treated to some vegan pancakes made with love, for breakfast by Sis. Yummy!  Pouring rain made it a dark and dismal day but it was nice nonetheless to have so many of my peeps close. All that were missing, were Daddio and the (sister’s) fiancé.

After breakfast, the hubs and I went out to do an errand and pick up some groceries while mom and sis went to a bridal sale event. We reconvened in the afternoon and Sis and I watched the Sex and the City movie (because, why not?!)

Sis made a lovely Spaghetti squash recipe for supper, then I was back upstairs to rest and pack for the hospital the next day.

We were up bright and early again and on our way to the hospital for 8am, the next morning. Mom and I went ahead and Sis stuck around waiting for CAA to come free her keys from her locked car. (Hihi) She caught up with us about an hour later and brought tasty hot chocolate to get the party started!

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The three musketeers waiting to get started.

We waited quite a bit for everything to start  moving, but finally got hooked up for the cyclophosphamide around 11am.

 Running alongside the cyclo was a drug called Mesna, that is used to protect the bladder, as well as regular old saline.

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So.many.lines.

Now, I place a caveat here because this is where it gets a little bit more graphic. Think of it like a spoiler alert. So if you’re squeamish to know too much about me, scroll on down until you see STOP…

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SCROLL…

In the interest of providing details for anybody who might have this procedure in the future, and who happen upon my blog for information, cyclophosphamide at the doses that I am receiving can cause all sorts of bad things. In previous posts I mention things like premeds to protect my kidneys and to prevent nausea.  We all know how well that worked out.

During and after the cyclophosphamide is administered, the doctors and nurses have to make sure that the harsh chemicals are flushed out of my system as quickly as possible after they do their thing. There are two ways of doing this: making sure that I get up to pee every hour during and for 24 hours after the cyclophosphamide infusion ends, OR have something called a Foley catheter inserted into my bladder, so that I don’t have to get up at all!  The first time around for the one cycle of cyclophosphamide I chose the get up and pee route.  In the words of Julia Roberts in Pretty Woman: Big mistake. Big. Huge. Between the nausea and vomiting and the already unsteadiness on my feet, the situation was neither pleasant or ideal, so this time learning from my mistakes, I agreed to being hooked up, and FYI: best decision ever…

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STOP
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This time around, we were better prepared for the nausea. Equipped with my SeaBand acupressure bands, ginger gum, and my anti-emetic friends olanzapine, Maxeran and Emend, I felt pretty okay until around 3pm. The nausea started then, but without the ferocity I had felt before. I was quicker to ask for something else for it, and managed to not actually be sick.  The nurse (…still awesome) was quick with some Zofran, and a couple of hours later, I was back to feeling like the nausea was under control. I even managed some dinner!

Another thing I’m learning through this process: take the anti nausea meds(!) Take them the minute you think, you think you might be nauseous. With these chemotherapies, don’t be a hero. The nausea is like a speeding train.  The more momentum it gets, the harder it is to slow down and keep on the track! With that said, I’m grateful that we got the train stopped. One day at a time.

To round out the evening, mom stayed with me through the night, but luckily didn’t have much to do…It was a good day :o)


Relief…

Sunday, August 7th

My new morning nurse was awesome. She spoke to someone before she even came into the room for the first time, and was trying to get an order for olanzapine. She came in and said she would hang some more Maxeran in the meantime and about 20 min later, she came back and hung the wonder drug olanzapine. Originally, prescribed as an anti-psychotic, olanzapine has been successful at treating chemo related nausea and vomiting when other options fail. Thank God! Within about a half hour I felt significantly better and was able to sleep finally. And sleep I did! The hubs relieved my mom at about 11am. She went home to sleep, and my wonderful husband pretty much just watched me sleep until 7pm. There whenever I got up groggily to use the washroom, or just opened my eyes to see the time. He was awesome.

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We’re still smiling-ish..

The doctor came in to see me in the afternoon, but to be honest I don’t remember much about it except that I had to get up to use the washroom while he was there.   It was obvious I wasn’t going home, but that was fine with me. I had sleeping to do! The hubs was replaced by my mom for the night, and I just kept right on sleeping. #sleepviking


On your mark…

Saturday, August 6th, 2016
hospital arrival

*A little blurry* Our arrival at the hospital.

We arrived at the hospital shortly before 11 am. We left admitting and made our way to the BMT unit.  I got settled (my room was quite bright and the bathroom was quite close – which was handy as they reminded me that I was expected to pee every hour for the 24 hours following the chemo) and had my blood drawn.

After the results of the blood tests came back, it was time to get the show on the road. The hubs stayed with me, while my mom headed home to rest and do her thing. She was the lucky one doing the night shift.

Jamey and Jess at hospital

About to get the party started.

The nurse gave me all of my premeds (to prevent nausea, and protect my kidneys) and the chemo got started around 2 pm.  The nurse warned me that my head might start to feel congested (boy was she right), and around an hour in, they gave me a dose of Benadryl to help with that. It felt just like a head cold, complete with sneezing and sinus pressure. Luckily the Benadryl did the trick.

Everything was pretty uneventful for the afternoon, and the hubs and my mom spelled each other off around 7pm.

 

The nausea started around 9pm, and didn’t let up until the next morning. I (We) dozed in 10 min intervals, maybe, but was (were) up most of the night. They tried EVERYTHING. Zofran, Decadron, Maxeran, Stemetil, and finally Gravol towards the morning. We got so desperate, we tried acupressure on my wrists even. Nadda. The nurses who by now I’m sure wanted to shove the call bell down my throat didn’t know what else to offer.

Luckily, when my morning nurse came in, she had a plan.