Saturday, May 19, 2012

So? How did it go?!?

Before I answer that, I need to explain the ground rules I was following. Understand that even though I am generally known as a more "traditional" scientist, most of the "alternative" medicines I looked into were things not generally pushed by my standard oncologist. However, as a more traditional scientist, I resisted adding those "alternatives" that would potentially conflict with the "standard" medical drugs or otherwise compete with any of my daily passions, pulling me away from any of the people or activities that bring joy to my life. So, how did it go? First the approach.

WARNING: This might feel a little gross, so read at your own risk!

Alternatives that are now taken daily with the intent to improve energy and resist infection:
Turmeric: Morning, 2 pills, 395 mg/pill
AHCC: Morning and Eve, 1 pill each, 500 mg/pill
Energy Vitality:  Morning and Eve, 1 pill each (mainly ginseng)
Vitamins: Morning and sometimes evening depending on my "mood" and what else I ate

Required medications:
Zofran: 5 days, 1 hour before Temodar
Temodar: 5 days, scheduled right before going to sleep

Laxatives and stool softeners:
Polyethylene Glycol: Mixed with smoothies every morning and water every night
Docusate Sodium: Pills taken most mornings

Choices for eating:
I tried to eat things containing lots of iron and/or things with high fiber. These included: burritos with beans and broccoli, hamburgers or other meats, spinach salads, salmon, and smoothies with lots of blueberries. Things that didn’t go very far included: dried fruits, nuts, and a liquid iron, all things rejected by my taste buds.

After Day 1 of the Temodar,  I was given my first dose of Avastin. Amazingly I never noticed any real side effects from that. The plan is to hold off until after the next MRI to see if more needs to be added. Continuing with the Temodar, after Day 3 I definitely noticed some fatigue, but still pushed through a normal day. By Day 4 I definitely noticed a decrease in energy. However, for the next 3 days, the energy was never completely lost, and often returned to some degree after a nap or an "irony" meal. The "alternative" medicines also might have helped to fight that sleepiness. The stool softeners in general seemed to work, but I also think that Metamucil might actually work as well, and is a little more "natural" over all. Either way, this was less of a worry since most of this was easily controlled in the "old days".

Compared to the first go-around, this was definitely a successful experiment with respect to energy, evidenced by the fact that I managed to go to work part-time every day that week. I think there is a fundamental limit for maintaining energy, since iron is indirectly depleted through reduction of the blood cells (the reverse of "iron deficiency anemia"), so adding iron externally cannot sufficiently compensate. Interestingly enough, there are still some other problems to solve. My emotional attitude certainly dropped significantly during the Temodar, as happened before. Whether that is my own attitude or an actual chemical reaction from the drugs or the diet remains to be seen. That said, overall it seems like I'm on the right path. We'll know more for sure when I have the next MRI in June.

Thursday, May 10, 2012

It makes sense. It's gotta make sense.

Tonight I take my first pill of Temodar for the second time. The long story short? Sorry, not possible.

I had my oncologist Dr. B look into all sorts of other options, but the options were limited. First off, the growing tumors are in several different places, and so even the most aggressive surgeon, Dr. Berger, said that only about 50% of the new growth can be removed. On top of that, there didn't happen to be many effective clinical trials for which I could qualify. Those I would qualify for are Phase I trials, but it did not seem like the smartest approach. So it was essentially suggested that I turn back to the Temodar treatment with one small difference. Tomorrow I will also be getting a dose of Avastin for the first time. This is the substitution to surgery, with the belief (hope?) that what is showing up now will be starved to weakness, and will no longer rear its ugly face as long as I'm taking Temodar.

Now my biggest goal, outside of this actually working, is to find ways to maintain some level of energy throughout the treatment. Others have found ways to manage it, so why can't I? I've pulled in lots of extra methods to fight the battles I'm facing, and hopefully down the line this will just be a minor side-treatment that will keep me going for a long, long time....

Wednesday, May 2, 2012

When will things turn around?

Today was my MRI day. I was hopefully optimistic, especially given how well the current chemo had been bleaching all of my hair. I assumed that if it was doing that, it must be doing what it's supposed to be doing.

Turns out I was wrong. The MRI showed a lot of different locations showing either growth or what appears to be growth. It is unconfirmed, but likely most of it is tumor. Confirmation would require biopsies, but at this point, it's not clear it's worth questioning. All of which will likely lead to stopping the clinical trial and considering the next steps.

The only problem is, there's not a lot of choices left, especially given the current spread of what appears to be tumor. I might be hitting what I've always considered the final frontier, the end of the line, Avastin (possibly with Temodar or another old school chemo).

Tomorrow I will hear back from Dr. B to see if there are any other options. I've also asked him to chat with some other researchers to see if I qualify for some of the more radical trials, though I'm not optimistic given the latest appearance.

In the meantime, take a good luck. This is the whitest you will see my hair under the current chemo treatment. Since I'm likely to be ending this trial, the only positive about all of this is that my hair should grow back to its natural, wonderful dark color....