Wednesday, January 25, 2012

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.


Lemony said...

Sheesh. It doesn't rain but it pours. I'm so sorry to hear about the loss of your aunt, and also the necessity of your stepping up to the next level of chemo. It's heartening that you may have some back pain relief in sight, though. I know that it's been effecting your day-to-day quality of life a lot, so here's hoping that cortisone shots will help!

Being a stay at home mom, I have a very flexible schedule. Living close by, I'd be happy to let Boo out for you if you decide to do chemo at the Mayo. I am also available as a back-up for overnights for her, provided that she is cool with other dogs and a kid. Oh, and it would help if she wasn't a cat-eater, though the cat could stay in the basement if the situation warranted. Message me on FB if I can help!

Dave Matheny said...

Yeah, it's been a crappy week. There will be better ones, though.

Incidentally, you write very lucidly for somebody who's on your level of pain medication. A guy I know who's a nurse says that most people who are taking this amount of Oxy-you-know-what have spouses who say "He's not making any sense. Maybe he could experience a little more pain so I could talk to him," or something like that. Obviously, you're doing really well.

Emily said...

man, that's a lot to process. how great that your back pain turns out to be something so straightforward as arthritis!

Wendy said...

I'm sorry to hear about your aunt. I hope your talks tonight provide some clarity for your next step.

Sounds like Boo is very mellow, so having her overnight seems doable.


John Slade said...

More big hugs!

lsikora said...

Hi, Michael -

I'm still amazed at how you're able to navigate and manage all these curve balls that keep coming! And I think it's good that you can ask for some things on the blog....every body is willing and wanting to help (like there's going to be any problems getting babysitters for Boo!) I wish there was something I could do from San Diego....please let me know if you think of anything...

By the way, Ed just had a cortisol shot in his back, and for a few days he complained that he felt some "nerve" tingling, and then after about 5 days, he noticed significant improvement, and has had minimal back pain - and he's been complaining for over a few years!
So I'm very hopeful about this treatment for you...if you want to talk about the procedure at all, please call..

I'm so sorry about your aunt.

RachaelHD said...

We have a dog and don't mind at all doubling up if you want to have Boo come to us. Perhaps sometime this weekend I can bring Boo for a play date at my house and see if she gets along with Molly and the cats.

I'm so sorry about the loss of your aunt and the bad news about Chemo. I am holding you in my heart.


R said...

Here as always bro. And I am a fool for Rochester road trips, if you come to that decision. Much love to you!

R said...

Raymond here, btw.

serrajaney said...

I'd be happy to come and get Boo any day you need. Pretty sure she would like hanging out on the couch all day with old, slow Huskies.

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