Chemo, Drugs, Studies and More

While the reality of more chemo -- right away -- sets in, I also have other decisions ot make and new information to process.

The Drug

One of the things we learned at Mayo this week is that I have graduated from the platinum-based therapies (cisplatin and carboplatin) and into the docetaxel realm. This is a common "second line" chemo drug for people in my situation. Basically, this is the drug that is used when the other ones appear to reach the limit of their effectiveness and is used after the initial round of post-metastasis chemo.

I'm still educating myself on the side effects, but the most common ones sound like what I've come to expect from a chemo drug: tiredness, nausea, hair loss, loss of appetite, and temporary decrease in blood cell counts, to name just a few. I had all of those with both my past chemo series'.

Docetaxel can also cause loss of feeling or numbness and tingling in the extremities, and the irritation or loss of skin on the hands of soles of the feet. I had the numbness/tingling with my first chemo series when I was on cisplatin, but this most recent series on carboplatin had virtually no side effects in that area.

Rarer -- though scarier -- side effects include seizures.

On the list of the rarest side effect are: holes in the intestines, liver failure, and death.

I realize that these side effects lists paint a worst-case scenario, but you have to understand how difficult it is to take a drug that lists "death" as one of the possible side effects, however uncommon.

Treatment would be given once every 21 days (or one week on, two weeks off). I have a feeling that this long recovery time is due to the harshness of it.

The Study

There is also an offer before me from Mayo. They're inviting me to take part in a clinical trial of two new drugs. These would be given in addition to the docetaxel, also via an IV, One would mean an extra treatment (two weeks on, one week off) and the other would be the same schedule as just the docetaxel.

The control group at Mayo is given just the Docetaxel, meaning that the worst case is that I'd get exactly what I'd get from my local oncologist anyhow.

One advantage to the Mayo study is that I might get added benefit from one of the experimental drugs. The downside is that it could also be damaging, and some of the side effects aren't that well confirmed. It doesn't cost me anything (there is also no compensation for it) but I can feel like I'm a part of the cancer research process in a way that few get to be. Cancer Walks and such can be great for building morale and bringing survivors together, but actually physically helping researchers test a new drug that could be helpful to millions would make me feel like I'm a big part of the bladder cancer solution, as opposed to just being a statistic. And you know how I hate statistics.

On the downside, I'd have to drive (clarification: I'd need to be driven) down to Rochester at least once every 3 weeks (and possibly twice) for a very long day that would on some occasions include an overnight stay because I might have more tests the next day.

If I need to stay down there, I could stay for free at the Hope Lodge right across the street from Mayo. The Hope Lodge is essentially a free hotel that houses people undergoing cancer treatment. Its tough to get into, and there is a waiting list besides. Normally you need to be doing ongoing treatment and there is a minimum 2 night stay, but study participants are different. I am assured I could stay there any time I need with no problem. After a 12 hour day, just staying in Rochester would be preferable, I'm sure.

Its a big hassle to get all the way down there, and when you're already nauseated, spending 3 hours a day in a car is hell.

If treating in Rochester, I'd also need to co-ordinate (at the very least) someone to stop by and let Boo out on each of those long days, and possibly have someone prepared to pick her up and take her over night.

The advantage to doing the chemo locally, where I've done all my previous chemo, is that its 10 minutes from my house, and anyone can drive me. I know the facility and the people, though they're not perfect by any means. I spend more time at home, more time with my dog, and less time in a car.

At either location, its 100% covered by my insurance, so cost is not a factor.

Mayo ought to have top notch care during chemo, though their infusion center looks more like an ICU. It's clean, but not terribly inviting. There are about as many glass-walled treatment rooms with beds in them as there are infusion chairs. I guess they get a lot more patients who are in a worse way down there.

Currently I'm making simultaneous plans with Mayo and my local oncologist (to cover all my bases) and will have to decide by tomorrow (Thursday) which route I'll take. The Mayo study coordinator needs to know ASAP. We'll all be discussing this in detail tonight and making a decision by tomorrow morning.

The Back

While at Mayo, we managed to meet with an orthopedic surgeon, who ordered an MRI on short notice, and was able to read the results by the next morning. Basically, my back pain is a result of "arthritic changes" in the vertebra of my low back. It does not appear to be linked to the cancer. Injections into the disc (such as cortisone) are the therapy that is recommended, though (for various reasons) there wasn't time to have them done before I left Mayo. I will have to plan to go back down next week to get the shots. I have found some temporary relief by doubling (as per the new doctor's recommendations) the amount of Naproxen Sodium (Aleve) that I was taking. I now take two with breakfast and two with dinner. This is twice the recommended dosage. Based on the success of the Aleve, I have been able to come down a bit on my Oxy-tin, which is a huge relief in many ways.

So tonight will be a busy (yet hopefully productive) one, while we decide on the the best option.

The Family

In addition to all of this, I learned on Monday evening that an Aunt (my mother's sister) that I was very close to had just passed away unexpectedly. Needless to say, its been a hard week for everyone in the family.

Day #1, ?? to go.

Had a peculiar, imagined scent appear as I was driving home from the
clinic. I felt that I smelled magic markers very strongly.

Here at 1:53 am I find myself still too awake to try to sleep, though
I took my knockout-pill: the Lorazepam used as an anti-nausea pill and
an anti-anxiety med. It seems to work well for both of those, but its
well established that it makes a person very groggy as well. They told
me to take the Lorazepam tonight, but the they advised me *against*
taking the Ambien and the Lorazepam, as that would be a dangerous
amount of mellowness. But the Lorz is not working as well as the
Ambien, so that's why I'm still up.

I have some minor flu-like symptoms, as they said I would. I feel
achey and have a bit of a headache. Nothing too terribly bad,
honestly. But I suspect (from all accounts) that tomorrow (Wednesday )
will be the hardest day of this week. I'll be at those gigs on Friday
and Saturday, but I may have to resort to Red Bull. I think I should
get prescription uppers if they're going to give be so many downers.
FInally starting to feel just a little crosseyed from exhaustion,
which is about the only way I know I will fall asleep. Laying awake
for hours: that's prime-time for the old noggin to race in unwanted
directions. The person who just found out about their prostate cancer
has had similar sleepless night recently, and called this "The Long
Dark Night of the Soul," where you dwell on the worst possibilities
and star really thinking about your own possible mortality and how that
might affect those in your life. When you start to make mental lists
of how you'd divide your belongings and what you'd do with your dog,
you know this isn't helping anything. That's where the Ambien --
blessed Ambien - helps out. But tonight I'm supposed to be on my Anti
Emetic, so no Ambien. Boo.

I'm not sure how many rounds of Chemo I will have, I keep getting
different answers. The lowest I've heard is 3, the highest 6 rounds. A "round"
in my case has me being treated once, then treated again 8 days later,
then 14 days off to recover. This cycle continues 3-6 times. So the
actual IV-stick and wait in a comfy chair only happens 2 days out of
every round or cycle. The worst is not the treatment, its the after-
effects. So far, very mild, and hopefully they'll stay that way.

Cisplatin 1, Me 0.

The cisplatin is done for this week. It's too early to feel any side effects (which might take a few hours to a few weeks). While it's going in the Cisplatin doesn't feel like anything. The Gemzar (Gemcitabine) is running now and that stings a bit. It's livable, though. It just feels like someone lightly pinching my arm near the IV site.

Into the Rabbit-Hole pt. II

Just saline for the fist hour and a half or so, since the Cisplatin is very hard on the kidneys. Then the Gemcitabine and finally they'll finish the treatment today with another 1.5l bag of saline.

The Cisplatin is the evilest of the two drugs in my opinion, with potential to cause hearing loss, numbness in the fingers and toes and kidney damage. I can deal with tiredness, hairloss and nausea, but I'd like to emerge from this with the ability to still play and hear music. And to stay off dialysis. Again, I'm doing my best to stay positive.

T-Plus 27 minutes.

Running very late at the Chemo center, still haven't begun. Busy here, many people with headscarves or shaved heads. Most older than me, but it's a little hard to tell sometimes who the family are and who the patients are. The Emend is kicking in and I feel very tired, napping sounds good. My bro, mom and R are here with me.
I did some research last night on the drugs I'm scheduled to get today and was reminded again how serious this all is. Gemcitabine and Cisplatin are highly toxic chemicals with sometimes severe and occasionally permanent side effects. The worst case scenario is very scary, especially for a musician. It's a trade off against the very real scariness of the cancer continuing to grow. To intentionally put poison into your body in an attempt to kill another poisonous growth is to turn your body into a battleground. While my immune system is trying to restore equilibrium, I will be immunosuppressed and susceptible to sickness and infection at a minimum for the next 3 months or so. Good thing I'm not working with kids right now.