Saw Dr Cloughesy (neurooncologist) today. Blood tests are fine so cleared for another round of chemo starting this weekend. He was ok with my adjustment in anti-seizure meds (halfed them again end of August to 25mg topamax 1xday, 500mg keppra 1xday). Now taking 100mg Provigil 2xday once first thing in the morning and once at noon. Found that I was getting tired around 4:30pm, so Dr Kaleita said I needed more. Started that today and seemed to do much better. Usually exhausted after being at UCLA but today was able to come to work with Jim. I think Provigil is my ticket back to work. Now if I can just convince my boss...

http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-20060607-16162700-bc-us-cancer-brain-analysis.xml

The neuropsychologist and neurooncologist agreed that I should try provigil and see if it improves things for me. I picked it up today even though my insurance denied it - they only cover it for narcolepsy and ADD. Cost me $291.09 for 30 pills, but it may be well worth it. I took it at 2:30 today. It seems to make each task a little easier which means I am expending less energy in order to get things done so I get less tired. Nice. Hope it continues to work through the next round of chemo. That would be extremely helpful. My dr's are trying to educate my insurance company on the benefits of progivil for people with brain cancer. As a friend of mine put it - it might be easier and/or faster to run out and get diagnosed with ADD.

I'm looking forward to finding out what affect it has this weekend with dancing at Casa Faire. Maybe I won't have to take a nap on Saturday.

Got notice today that I have to go 3months without a seizure in order to retest for my license. My dr was very specific about my seizures being facial twitiching only so I called them. They needed him to be even more specific and say that my seizures would not cause me to lose control of a motor vehicle. So I have to get them new paperwork to fill out again so I can retest and get my license back. What a pain! Why does an $8/hr person get to decide my fate? GRRRRR. How does facial twitching make it unsafe to operate a motor vehicle? And their own guidelines suggest that my license should never have been revoked. "Revocation: Condition not ikely to ever be brought under control" No doctor ever suggested that so some other $8/hr person made that bogus decision. GRRRRRRRRRRR. They are all FIRED!

Went to Casa de Fruita this weekend all last minute like. My packing skills have returned - I had everything I needed even though the Faire didn't like my pirate costume. Oh well too bad for them it's all that fits me right now. I am still losing weight, but very slowly. At least that means it will stay off. Had a seizure on my way up the 5, but none the rest of the weekend. Got to dance, hang out with my friends, get some time in the sun, it was great. Found out a friend of mine has been on Provigil for 1/5 years. This is a drug that my neuro psych has mentioned putting me on to combat fatigue and depression and increase my cognitive skills. I see him tomorrow and am thinking about giving it a try. It certainly can't hurt. Hal says it works pretty well for him. He has MS and fatigue is a big issue with him.

It's nice to know that the dances are still in there along with the muscle memory. Felt good to move around and be of some use to someone. I feel like such a liability lately with no income and having to be driven around and all that. Phoey.

Had a seizure today, but my last one was 21 days ago. That's a new record for me! COOL!

No rash, very little nauea - the drug cocktail seems to have worked out well for me this time. I am more tired than before, but the nurse warned me that the anti-nausea drugs might have that affect. Not having to deal with nausea is a huge plus with this round. I don't think I could have stood another 30 days of that. Today is my last day of steroids. I have my compazine just in case the nausea decides to rear it's ugly head, but I am pretty confident that it won't at this late stage in the game. Woo hoo. Here's to more shrinkage of that damned tumor.

Today the neuro-oncologist put June's MRI up next to last week's MRI to show us that the tumor had indeed gotten smaller in a few places. So much for me deciding not to do chemo anymore since it's working. Armed with a new plan of attack for the nausea and the rash, we start cycle III of temodar Friday night. It was either that or try a different oral chemo or radiation, both of which have permanent side effects which just don't sound like a good idea. Since I already know what temodar does and now have new tools to combat the side effects, I am more willing to try that again than start anew with something else. Doing nothing was ruled out since the chemo is formulated to attack fast growing cells first and it had attacked part of the tumor which had not been biopsied. We really have no idea what that 40% of the remaining tumor is made up of so best to get rid of it now that we've found something that is working.

Also saw an alternate Neuro psych doctor. Interesting fellow, but he had some new insights and some good ideas. Wants to do some additional testing for some benchmarks that we can retest later to check my progress. Sounds good. Will see both docs in a month. He exhausted me today just by talking at me for 2 hours and 45 minutes so we couldn't do any testing today.

 

I lost 10 pounds - yay!

I have a nasty rash from the chemo from my thighs to my toes that itches uncontrollably - boo! The pharmacist says I won't be able to take this type of chemo again because the next reaction will be much worse and I could end up not breathing because of it. As far as I know, this is the only chemo for brain tumors, so...

So now my legs look like I tried to shave them when I had goose bumps. And the benadryl is not helping at all. Oh, and the other anti-nausea med isn't working either. So much for change.

Happy Summer...

Dr Cloughesy's office called this morning (neuro oncologist) and said I'm good to start cycle 2 of temodar chemo tonight. one liver test was lower, one was higher, but everthing else looks good. Here's hoping the alternate nausea med works - keep your fingers crossed.

I try not to write when I'm feeling so negative, but people keep asking me what's up so, here goes....  I weigh almost 200 lbs and in spite of going off the steroids, I have gained weight becuase the chemo has made my liver very unhappy and is causing me to retain water. I have hideous stretch marks on my hips from the steroids. I am growing my hair back, but more slowly than I'd prefer (what else is new?) Looking forward to Casa Faire where I can dress like a pirate and be ornry. ARRRRRRR. Just remember - I was dressing pirate long before all of these movies started being produced. I am in no way to be confused with being trendy.