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.

The Dark Side of Morning

As has happened for the past few nights, I have been dragged slowly and inevitably from the depths of sleep at almost exactly 4 am. Whereas the back pain is usually the primary source of pain, these days it often takes a backseat to the bone pain that I feel in my left femur (the upper leg bone, and the biggest bone in your body).

I know I've talked about it, though it is worth mentioning again that I broke this femur in a motorcycle accident in 1991, and there is also a rod down the middle of the femur. It seems odd that a 20-year old injury (that has caused me no pain at all since about 1994) has started hurting again within the past 2 months, and so deeply and intensely. I have been told that old scars and wounds can reopen during chemo, but I have not yet been able to get an answer as to how this might relate to old broken bones. And also: chemo is over, already.

Of course, my brain goes straight to bone metastases -- or "bone involvement" as doctors so gently like to put it. I've had bone scans (but, admittedly, not since before I felt this pain) that *should* catch any metastatic disease in the bones. Though I'm still unclear exactly how bone scans work: I don't know if they're head-to-toe scans, or simply confined to the same area they're doing the PET/CT on, as some sort of bonus ("buy a PET/CT now and get a free bone scan!") freebie. After my last PET/CT scans in October, Dr Grampa (my now-former oncologist) told me that my bone scan was negative. I was surprised: I hadn't been told that I was even getting a bone scan, I thought I was just getting a PET/CT. Yet they somehow managed to do it at the same time using (apparently) the same equipment, without me knowing. Maybe its just a guy in the control booth eating a sandwich who looks over at me lying on the table -- really carefully -- for like a minute, and then checks a big box that says: "Bone Scan = Awesome."

All I really know about bone scans is that in the movie "The Pursuit of Happyness" (sic), Will Smith's mustachioed character sells bone-density scanners when he's not napping with his young son on public bathroom floors, getting arrested, working his ass off for the unappreciative Man, or having his wife leave him. You should watch it: its really an uplifting movie. In the end, it taught me very little about bone scans, though.

But the main point being: my leg hurts. And so far no one knows why. Add that to the list of complaints that I need to talk to an orthopedist about, which will happen at Mayo in a week or so. 

Yesterday night when the leg was hurting I thought it might be because I'd walked more than normal that evening (about 2.5 miles), more than my usual route. And when I woke up last night I took an oxy(co)done because the pain was keeping me from sleeping, and also because the docs are always bugging me to take them for what they call "breakout" pain. So I did, but really felt no relief from it at all until about 6. And then I slept uncomfortably and groggily until about 9:30.

The Oxy-co-done is a shitty sleep aid, I find. It leaves you not rested and fresh as a daisy, ready to solve the world's problems... but instead the Ox claws you slowly awake until you find yourself in a (hopefully metaphorical) greasy heap: sleep having snuck out on you without paying the rent some time ago when you weren't looking, and leaving you glaring grumpily at the sun and feeling like you ought to be deciding between warm beer or vodka from a styrofoam cup with a cigarette floating in it for breakfast. As it turns out, I had yogurt, granola and a banana -- but it felt like I wasn't really being true to the character.

Tonight I did not go for a walk at all, partially to see if there was any difference in the pain. There wasn't. So I might as well at least get the exercise of walking if I'm going to have the pain anyhow. I'm also not taking any of the extra Oxy tonight, for the aforementioned reasons. 

I look forward to getting this bone stuff looked at, and I have decided that if they also (as pretty much all of the other doctors have done) throw up their hands and say: "Huh. Well, that shouldn't be happening! I sure wish we knew what was going on, there!" I may start trashing the place. Luckily, Mayo is great at figuring out stuff that is hard to figure out, but I wasn't pleased with their Harlem-Globetrotters-esque lightning fast handoffs that I went through last time there, only to learn that my back/bone issues are not something that falls under the purview of urology, medical oncology, radiation oncology or neurology. Knowing what it is not is strangely not as satisfying as doctors might guess. I'd rather focus on what it is. 

Anyhow, the leg pain has subsided again for the moment, so I guess I'll see if I can get some sleep.

Trazodone? Taze-O-Done is more like it.

I had one of those things where I typed a long update this morning at about 8am and then (due to the combination of the iPhone keyboard and my big fingers) briefly saw a screen that gave me the option for saving or deleting the draft, and -- just like lightning -- I accidentally pushed the big red "delete draft" button and it was all gone.

So, in a nutshell, I made it through the night OK. I slept fairly soundly from about 4 am unit 8 am. I don't remember if I got up at about 6 to use the bathroom or not, but if I didn't, it underscores the dehydration possibility -- as I chugged about 50 ounces of water at 3 am.

Another observation that points to the dehydration possibility: I woke up with a pounding hangover. I didn't have a drop to drink last night, of course -- but a hangover is basically dehydration. When I lived at high altitude I got used to humidities in the single digits for most of the year, and drinking water was essential, or else I would get what felt like a hangover headache.

But, to put this another way: I've had a dehydration hangover headache like this in the morning *without* having experienced muscle tremors and uncontrollable shakes in the middle of the night.

And, because I think it must be commented on as well, the chills and shakes that I experienced when they had me on Methadone were quite different. That was a cold-sweat-chills-clammy-shiver that told me it was time for my next dose. This one was more like MS, or my take on what it might feel like. It did not feel like withdrawal of anything, since I haven't changed any dosages recently except for adding little more of the Oxy'tin daily.

I have a call in to Dr, Larry to talk about last night and also see if there is any possibility of this side effect being from the Trazodone, the new sleeping pill.

But, due to the wonders of the internet, I already have part of my answer:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000530/#a681038-sideEffects

"Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:"

"Normal" side effects:

-- Nausea (yep)

-- Vomiting (nearly)

-- Weakness (yep)

-- Dry mouth (yep)

Some of the worst side effects:

-- uncontrollable shaking of a part of the body (you becha)

-- shortness of breath (yep)

-- chest pain (yep)

Symptoms of overdose can include: (remember... I took only 1/2 of what was prescribed)

- vomiting (very nearly)

- difficulty breathing (yep)

- Seizures (I didin't exactly have them, but: scary!)

So, no more Trazodone for me. I'll talk to my doc and tell him what I experienced, and I'm guessing he'll agree with my assessment that its a bad one for me that I appear to be particularly reactive to.

Looking into it further, I don't like that I was essentially given an off-label usage for a medicine that is intended as an SSRI antidepressant. I know they're convinced over there that I'm depressed (and surely, I'm not crapping rainbows over here) but their little 2-minue Depression test that they run you through doesn't take into account the idea of chronic pain. I feel like if we get that addressed, I'll be a lot less "depressed". 

My doc is good and I don't think this was anything sneaky on his part. I've been working with him for years. But I'll certainly ask for clarification.

There is an option at the the NIH site that has the option to send a report after a particularly strong reaction. If my doctor doesn't, I'll do one myself.

Right now I still feel wrung out: I can't inhale all the way comfortably, and I am sore all over. This is not the back pain per se -- more like how you feel the day after slipping and falling on the ice. Everything is just a little sore.

Whether from dehydration or Trazodone or both, I don't know.

Here at 10 am I'm still basically doing OK on the back pain, so I'll plan to go until 2pm for the 20mg tablet. This is once every 12 hours, for 40 mg a day -- a fairly low dose option.

Anyhow, more naps may be in order today.

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.