Start of round 9

Yesterday marked the start of round 9 of chemo. Between then and our last post, my doctor lowered my dose from 400mg/day to 300mg/day. My platelets were getting a little low at 400mg, and my doctor decided that things were working well enough that a lowered dose would be more tolerable to my bone marrow, and I would feel a bit better while on it. Also, I had an MRI Monday and saw my oncologist yesterday to get results while picking up my chemo meds. All is going really well. The MRI shows further decreases in tumor, and I keep on getting better. The biggest piece of news is that I am definitely headed for 24 total rounds of chemo unless the Temodar starts to mess with my bone marrow or becomes otherwise intolerable. It was unclear to us until yesterday whether we'd stop at 12 rounds, which is the minimum, or go on to 24. The plan is to go to 24 now that things are working well for me on the lower dose. If the tumor is magically gone one day on the MRI, then we'll stop early, but I don't expect that to happen.

Good news and a small delay

Good news from Bill's latest MRI! The MRI was at the very least stable, and might even indicate some decrease in the size of the remainder of Bill's tumor! The neuro-oncologist said that 4 months into chemo is the very earliest we might see any changes in a positive direction, so this is really excellent news. Time to celebrate!

The other news (I refuse to say 'bad news', because it's not really bad nor good) is that Bill's platelet count was a little down (to 65) last Wednesday, which was supposed to be the kickoff day of round 5. This is a pretty common side effect from the chemo drug that he's on, so we've delayed round 5 until his platelets have recovered enough that he can safely do another round. We went in for more blood work Friday morning and his count had gone up to 115, which is above the safety line of 100 for starting the next round of chemo. Hooray! Bill doesn't need a transfusion and I don't need to shield him from sharp objects!

For some patients, platelets are only a problem once or twice in all their chemo cycles, but if it becomes a recurring issue, we'll discuss changing the chemo dosing or the chemo schedule to ensure that Bill's bone marrow can keep making platelets.

We rescheduled chemo round 5 to start this Tuesday (tomorrow). We opted to start this round and rounds moving forward on a Tuesday instead of Wednesday so that we both have a better shot at working a little bit on the following Monday. This means that Bill will probably feel the worst on chemo Sundays instead of Mondays.

On the nice side of this, since chemo has been delayed for a bit, we're enjoying more time of Bill feeling good, eating lots of food, getting some exercise, and going on long walks when the weather cooperates. Sunday brunch tastes a lot better when you walk a couple miles to get there!

4 rounds of chemo down, good riddance 2015

We’ve made it through four rounds of chemo in 2015. Woohoo! Bill has been an absolute champion and a trooper. The side effects from the Temodar haven’t been fun, but he’s powering through with a great attitude.

How chemo cycles work

Bill is on a 28 day cycle where he is on a drug called Temodar for 5 days, and then off for 23 days. The 5 day portion begins on a Wednesday night, and his last dose is on Sunday. Each day during chemo, Bill eats an early dinner, then takes a Zofran anti-nausea pill about half an hour before bed. At bedtime, he takes 4 x 100mg Temodar pills and ideally sleeps through most of the nausea. The Temodar dosage is based on body surface area, which is a whole weird calculation based on height and weight that they do at the doctor’s office. 

So far, he has felt fine on Thursday and Friday of the cycle, but Saturday around lunchtime is when I really start noticing the slowdown. His appetite plummets and he doesn’t get off the couch for much at all. The side effects really max out on Monday, the day after he takes his last dose. Some of the side effects last through much of the week following chemo. He’s mostly back to normal (with a little reduced appetite) the following Saturday. Basically, Bill feels like crap for a whole week each month.

Let’s break chemo down by side effects... 

Nausea 

During cycle 3, the nausea managed to break through the powerful anti-nausea drug, Zofran, and Bill threw his back out while vomiting up his meds on a Sunday night (the last night of the 5 day chemo cycle). After an after-hours call to the doctor, the last dose of chemo for that round was canceled, since he was having a really rough go of it.

For round 4, Bill was upgraded to an anti-nausea patch (Sancuso) to wear on his arm through his chemo cycles and a couple days afterward. The patch seems to keep the nausea at bay and keeps a pretty steady dose of anti-nausea drugs in his system. He didn’t puke at all during round 4! Fingers crossed that Sancuso continues to work through the rest of whatever chemo rounds Bill does. 

Appetite

Another side effect of Temodar has been reduced appetite. Even when Bill isn’t feeling nauseated, he doesn’t want to eat much, and most savory foods are really unappetizing. Even TacoDeli tacos are too much. Shocking, I know.

We’re managing his lack of appetite by finding the few things that do seem appealing. Bill has done okay with Enu shakes so far, and at a little under 500 calories in 11oz, they are pretty dense. He also likes applesauce, ginger ale, and ginger candies. He seems able to drink cold sweet things like milkshakes and smoothies while on chemo, so P. Terry’s is getting a fair amount of business from us. Our goal is to keep Bill from losing too much weight during each round of chemo, so getting some calories in is important. I’ve never been so grateful for calorie-packed milkshakes as we try to keep him around his normal weight. 

Digestive… uhh… issues...

It wouldn’t be an accurate cancer blog if I didn’t talk about poop a little bit. Let’s just say that poop is important and when poop isn’t going well, nobody’s happy. There are lots of methods for managing poop (OTC drugs and prunes among them), but the main message for anyone on Temodar is to keep track of poop so that you can manage poop before poop is a problem. Poop.

Good riddance 2015. Hello 2016!

Bill has an MRI on Monday, January 4th to take a look at the remainder of his tumor and see if any changes are happening. Keep your fingers crossed for a stable (or even better, SHRINKING!) tumor!

The next round of chemo starts on Wednesday, January 6th. If we only do twelve rounds, the final round will be done in late July 2016, at which point we will be taking a serious vacation once Bill feels okay. There’s a possibility we will do 24 rounds instead of 12, but we’ll jump that hurdle when we come to it.

After a fair number of illnesses and deaths among our friends and family this year, we’re in agreement that 2015 was not the best year, but we’re optimistic for the new year. Here’s to a better 2016!

Phantom smells and round 2 of chemo

The last time I wrote a post, Bill was in the middle of his second steroid taper and had just finished a successful first round of chemo. 

Today, we're in the middle of his second round of chemo. In the past month, here's what's happened.

A couple of days after Bill's taper off the steroids, he experienced some pretty intense olfactory hallucinations, or "phantom smells". He describes the smell that he experiences as "ozone-ish, like the smell of electricity, but not quite." It's not a smell he's smelled in real life, and it's a little unpleasant. He experienced these olfactory hallucinations off-and-on all morning on October 2nd. We called the neuro-oncologist and they had Bill start another course of dexamethasone (the steroid), this time at the lowest dose of .5mg. 

The dexamethasone worked and Bill didn't have any more strange neurological symptoms. He finished that course of dexamethasone last Saturday, October 10th. He did perfectly for 6 days off the steroid, and then experienced a very brief phantom smell on Friday morning (yesterday). Compared to the previous episodes that were minutes long, this one was a few seconds. We called the neuro-onc and they have Bill back on .5mg dexamethasone, and we'll try coming off again in a few days. 

Neurological symptoms are a little scary, but this is all hopefully part of the healing process from surgery. Dexamethasone reduces swelling a little bit, which may take pressure off of whatever area of his brain is causing these strange effects. I'm under the impression that this is one of many weird things that can happen as you heal from a craniotomy, but it's possible that it's a prodrome to a seizure and that we need to add something else to supplement or replace Keppra if it isn't enough to keep Bill seizure-free. We would really like to avoid having to put Bill on a second anti-seizure medication, if possible.

On the chemo end of treatment, Bill started round two on Wednesday of this week (10/14). His dose of Temodar went up to his full dose this treatment round (400mg each night instead of 300mg). He has been doing really well and not experiencing many side effects... at least until a very rapid unexpected wave of nausea hit him while we were driving home from an appointment earlier today. He lost most of his breakfast in my car :(

I, thankfully, managed to keep my sympathetic vomiting under control by pulling over quickly, opening my window, and sticking my head out of it. Poor Bill had to ride home with his breakfast smoothie all over himself and all over his side of the car. 

Cancer protip for caretakers: have a plastic bag and some paper towels in your glove compartment. 

Bill felt immediately better after vomiting, so we gagged and giggled at the ridiculousness of the situation all the way home. He's had a shower, a Zofran (anti-nausea pill) and is good to go. I've spent most of this afternoon cleaning my car. 

If anyone in Austin knows of a good car detailer, my poor little Subaru could use it!

Overall, things are good and we're learning how to be prepared for all kinds of circumstances, including surprise puke ;-) 

Chemo round 1

Caris again. Apologies for the lack of posts about chemo, but for now, no news is good news at our house! Round one of chemo went fine. Bill took his chemo pills from Wednesday through Sunday nights. He was diligent about the prophylactic anti-nausea medication and didn't have any trouble with chemo. One down, somewhere between 11 and 23 to go!

Bill did start having some fairly severe headaches Saturday and Sunday during his chemo treatment (he described 5-6 on the pain scale.) The hypothesis is that the steroid taper that Bill finished earlier that week was a little bit too fast (directly from 2mg of dexamethasone to nothing). The neuro-oncologist had Bill restart the taper from 2mg, with stops at 1mg and .5mg. He is feeling quite a bit better on the low dose of steroids and we were able to work from his office a couple of half-days last week. I'm inclined to agree with the steroid hypothesis as, according to the oncologist, headaches would be a very unexpected side-effect from chemo.

So we will be done with this second dexamethasone steroid taper on Tuesday this week. The steroid has a pretty long decay in the system, so he might not feel the side effects of coming off for a few days. Hopefully it goes better this time and Bill's head doesn't swell up and cause him too much pain. So far, he's been managing pretty well with regular old Tylenol and using ice to manage swelling. We are both looking forward to being back at work a bit more this week and getting to some semblance of this "new normal" we keep hearing about. At least for a little while before round 2 of chemo begins on October 14th.

Hugs for everyone that has been around to support us and just hang out with us when we need it. You are all the best and we couldn't do this without you.

Chemo training

Today I got trained by my oncologist's PA on how to do chemo. The final tumor pathology grading came back as a grade 2 oligodendroglioma (which is the best news!). And now we have a plan for the first rounds of treatment.

On Wednesday, I will start a 5-day on, 23-day off sequence of oral chemo cycles where I take a drug called Temodar at bedtime. Every two cycles, I will have an MRI to monitor the progress of the therapy. This treatment could go on for a long time (multiple years). So far, we have the first 12 cycles scheduled. Side effects are expected to be mild with some prescribed anti-nausea medication taken with the chemo itself. I'm not expected to lose hair or compromise my immune system greatly with this course of treatment. The prognosis for my beard remains strong!

In the mean time, we are also waiting for genetic testing to be done on my tumor samples by Foundation Medicine which may turn up additional treatments that can be taken simultaneously with this chemo. We should know more about their results in the coming weeks.

It's not a GBM!

When you have brain cancer, Glioblastoma Multiforme (GBM) is not the kind you want. It's the worst and least survivable. The Glial cells (to be gross) are the maintenance workers of your brain, they keep things clean, help your neurons do their jobs, etc. They also tend to be the ones that turn into tumors. Astrocytes look like stars (thus the name), and lead to astrocytomas (grade 4 of which is the GBM) when they go bad.

I found out yesterday that my tumor does not look like an astrocytoma, which was very good news. There's still some slow pathology work to be done (which is ongoing), but I have, most likely, a low-grade oligodendroglioma. People live with these for decades with treatment. They have started the genetic workup looking for the 1p/19q chromosomal co-deletions which could be indicative of my disease and possible treatment path. If it stays grade 2, then radiation therapy is out, and I will likely do chemo only. If they find really weird genetic stuff, then some sort of customized viral therapy might be possible. We could make a virus that could force my immune system to attack my tumor directly. This was all very good news to get yesterday. We are keeping our fingers crossed for this to stay a low-grade Oligodendroglioma (2 not 3!, think golf scores here!).