Next Appointment

I now am scheduled for an appointment with the study lead of the trial I really want to do, in San Francisco!  I'm glad to have the opportunity to try different doctors and get opportunities to try different trials.  I go on Monday and it's going to be great!

Rolling the dice

Well, if you go looking for something, you're sure to find it...  I guess I've been looking for any excuse to say that this trial isn't working for me and I can go off trial and try to get on a different one.  After meeting with Dr. he was pleased with my scans, indicating that for the most part it wasn't growing, but some mets were, while others weren't and some may have even shrunk.  He went into a long explanation about how he had looked at a the iliac artery and found it to be looking better now than it had before.  He also explained that my kidney function had returned to the best it's been in over a year.  All these reasons he indicated led him to believe that it was working for me.

I told him I didn't think it was good enough, that I'd been at odds with the trial for a while, the commute was becoming too burdensome, and I was more interested in another trial.  We talked a lot about how much he believed the current trial was benefiting me and why I shouldn't leave it.  Ultimately, I chose to exit the trial and now I'm trying to get on the one I really want to.  We'll have to see how that goes, I'm hopeful that I can get on it!

Unfortunately this is really causing me some anxiety...  But, you have to roll the dice.

This past month or so...

So sorry I haven't been on top of things here, and everywhere.  I will say that I've been feeling overwhelmed with everything this last month and then some.  Maybe too many irons in the fire, but I didn't put some of them there...

Continued dissatisfaction with my Dr., so this next visit I'm asking for a referral to a different trial.  That means, no, I don't think the trial I'm on is having more of an effect on me than to stabilize the tumors and cause me to have bloody noses.  I ask my Dr. to be more aggressive and I get wait and see.  I think that's more a problem with oncology in general.

The commute is taxing...especially considering that I don't believe I'm benefiting from the chemo.  They are having trouble getting authorizations from my insurer for services, CT scans.  At the time they reach me on this, literally the afternoon before the services, I'm packed and ready to leave, not in a good place to deal with the insurer.  See what happens when we get there I guess...

Overall, I'm doing ok, still fighting, but very frustrated and feeling overwhelmed.

I think that's the best I can summarize.

Since last time I was able to get some of my appointments rescheduled so I don't have to miss such vital days at work.  That was good.  Unfortunately on those days I'm rescheduled for I see my Dr.'s resident rather than my Dr.  I don't think much of the resident...  I'm convinced that I've been lead to this trial just for some kind of benefit to my Dr.  This trial has really born out to cause me a lot of nose bleeds, run me down requiring a lot of sleep, constant night sweats, and really impact my work with the amount of time I have to take off just to participate in the trial.

As I've said, I don't think the trial is working for me and we'll get confirmation or contradiction of that on the 23rd.  Regardless I plan to ask for a referral to a trial in SF that I am really excited about, mostly because it won't require infusion, but because it will be PO(by mouth) and one of the pills has been good to me in the past.  Also, SF will be a little closer which will help.

Feelings, as my brother asked

I feel like my doc is just using me as a test subject.  I don't think I'm benefiting from the trial.  This week was a break from treatment and I've been feeling...tired.  Every morning I have a nose bleed, and not just some red in the tissue paper, a pretty bad bleed that takes about 10 minutes to get under control.  I was using some hemeostatic strips that I bought, but today I used Afrin which seemed to help.  I've had constant mild pain which amounts to discomfort, I can manage that with tylenol.  At night, I sweat through the sheets and wake up about midnight or 1, then go down and sleep in a sleeping bag so I don't freeze in my own sweat.  I sweat less then, but still eventually wake up sweaty.  I, in general, have trouble keeping warm through out the day and even with the thermostat at 70, I'm shivering.  Appetite is way down, mostly because I think this big tumor in my belly is pushing on everything.

All this crap makes me feel like things are urgent, but the state of oncology seems to be 'we'll see'.

I can't decide if I should continue the trial or not?  I found a clinic in Wisconsin that administers Coley's Toxins and I definitely want to give that a try at some point, next I guess.

Anyway, shoot, I'm sorry this all sounds so bad, I'm just so frustrated and conflicted about what to do.  Other than that I'm feeling ok.  I mean, I make it to work and do my job if that's any measure of how I'm feeling.

St. Patricks Day

I hate to miss corned beef and cabbage, so made sure to do that.  Nothing remarkable about my condition, had a small nose bleed...

Oh, I should mention that lately I've been finding it hard to keep warm.  I attribute it to the weird spring weather here, and the treatment.  Also, I've noticed alopecia is beginning to start for me...my hair is now pluckable!!!

Rest day

Yeah, right.  I slept in a bit, but was up at a decent hour and had a nice breakfast at one of the best places in town.  It was nice, but I really would have liked to get more sleep...the rest of the day was pretty lax though.

Another nose bleed

I keep getting nose bleeds and I'm managing them ok, but they are still a nuisance.  The nurse practitioner advised that I could try Afrid to constrict the blood vessels.  I haven't tried that yet, but I bought some hemeostatic nose strips which work ok...  Dr. suggests cauterization...