Tonight Starts Chemotherapy Again

Time flies when you're having fun and Steve's break from treatment is now officially over. Tonight, he takes his first maintenance dose of Temodar of 140 mg. He will take his anti-nausea medication a half an hour before and he is being very dutiful with his fiber pills, prune juice and other medications for constipation in an attempt to minimize any unwanted side effects from the chemotherapy drug. He will take one Temodar pill in the evening for five evenings and then stop for twenty-three days. We wish him well and hope nothing will keep him from work or from feeling good enough to love life.

He had his blood drawn again the end of last week with a slow improvement in his kidney function. His creatinine is down from 1.8 to 1.7, on it's way towards a normal 1.5 and much improved from numbers over two. He is still drinking lots of fluids and he sees the nephrologist about June 15 for his next appointment.

He hasn't been able to completely stop the anti-nausea pills despite not having had any active treatment for a while. We don't know if it is the residual from radiation, chemotherapy, kidney failure or battling constipation or a combination of the above, but he would have an upset, gassy-feeling when he tried to stop his Zofran previously. We hope he won't become more nauseated with the Temodar because the anti-nausea pills really cause constipation, which causes a very upset stomach. It's a vicious cycle. What can you do?

On a happier front, Adam turns 12 years old next week and is graduating elementary school. The kids grow ever bigger at a rapid pace!

Maintenance Chemotherapy Scheduled

They had another appointment with Dr. Hu today and maintenance chemotherapy is now scheduled for May 28th, barring unforeseen problems with the next lab test on May 22nd. Maintenance chemo will involve 140 mg of Temodar a day for five days, followed by 23 days off. The number of rounds is not yet known, but we understand some people stay on this type of schedule for years. The 140 is a lower dose than the 180 Steve took daily for six weeks before and it is lower than the standard maintenance dose. If he tolerates it well, they will increase the dose for the next round. They are starting with the lower dose because Steve had so much nausea and kidney and platelet involvement before, they are trying to keep the maintenance schedule from being so hard on him.

In anticipation of Steve's body's reactions to the chemo, they have a plan to help. He is going to double the Zofran and resume Compazine and add a third anti-nausea medication (Terry didn't remember the name during our conversation).  Then because all of this causes bad constipation, Steve will also be increasing his medications and fiber to try to help that end of things.

Terry had a list of questions to ask Dr. Hu about clinical trials that might help Steve fight this battle. Dr. Hu explained that there currently are not any trials accepting patients in his situation.... either they are full or are not for his stage of treatment. There are several trials for when the tumor recurs since, unfortunately, they almost always recur. They discussed one trial at USC (boo, hisss because it's rival to our UCLA, hehe) that is for glioblastoma tumors with a specific genetic makeup, called epidermal growth factor variant 111. They plan to send 4 microns of Steve's tumor to USC to see if it is one of the 30% of tumors with this EDGFv111. If Steve's tumor has this makeup then he can participate in the trial whenever he has a new tumor growth discovered. It's planning ahead just in case it's needed and his tumor qualifies. For any of you interested: http://clinicaltrials.gov/ct2/show/NCT01498328?term=usc+and+gbm&rank=5

Steve seems to be doing well and feeling good. He still takes Zofran twice a day because of nausea and also has to take 200 mg Colace and 3 Citricel tables twice a day to help keep his system moving. He continues to work full time and he has resumed some family activities like driving the boys to their friends' houses. He's still not 100% due to some fatigue but he's glad to be able to be involved again.  Let's hope the maintenance chemo doesn't knock him back much.

Nearly Normal

This just in from Terry via Facebook:


Hi....Good news, steve's creatinine continues to fall...results from friday's bloodwork...1.8 YEAH!!!!!!!! Have a llovely day! 


Whoopee!

My Pleasant Weekend

I spent the weekend visiting Steve and his family. Steve was feeling well and we had a lovely, quiet weekend at his home.

In the backyard on a sunny Sunday morning,  May 6, 2012

Lesley joins us for dinner, Cinco de Mayo, 2012

Relaxing after dinner. I love the Mickey pirate shirt.

Walking on his treadmill both mornings I was there for fifteen minutes, twice.

Happy family in the backyard.

Healing at a Turtle's Pace

Steve and Terry went to the nephrologist's tonight to get the results of Steve's tests. They received good news and are doing happy dances as I type. Steve's 24 hour urine test and kidney ultrasound were fine and normal. Measures of Vitamin D and parathyroid functions were also normal.

They said Steve has Acute Tubular Necrosis, also called ATN, which is a problem with the small tubular structures inside the kidney (it is a precursor to acute renal failure). They were collapsing because of the chemo and dehydration and it is expected to only be temporary. Dr. Ayuste talked to Dr. Hu and discovered Steve had been sick longer than he originally thought, for the greater part of the eight weeks prior to their meeting, not just the last week of chemotherapy. That accounts for the slower recovery than he originally expected.

Kidney function is related to blood pressure. Dr. Ayuste took Steve off his Losartin medication back when this kidney problem started. Today, Steve's BP was slightly elevated at 160/97 (of course, he was stressed at the doctor's office and had just rushed there after a nine hour work day). He is starting Steve on Norvasc instead of Losartin to lower blood pressure since it is more gentle on the kidneys.  Terry has to buy a blood pressure cuff and check Steve's BP regularly while they adjust the dosage.  They don't have to see Dr. Ayuste for six more weeks. They already have lab work done every two weeks for Dr. Hu and a copy of the results will be sent to Dr. Ayuste so he can continue to monitor Steve's labs.

Constipation continues to be a problem. Apparently, it is a side effect of anti-nausea medications as well as the previous chemo itself.  Steve has continued taking the Zofran to help settle his stomach. He has other medications to help mediate the symptoms but it has not been enough. They have telephoned Dr. Hu and Dr. Cox at different times to help find something that works and they have doubled the dose of Colace recently. They also have to change from Citracel to Metamucil and he has Miralax available. They all work in slightly different ways to achieve the same end results :) Dr. Ayuste suggested they ask Dr. Cox about using Reglan instead of Zofran to see if it works on the nausea with fewer side effects. When I read about Reglan online, however, I see some pretty serious side effects (tremors and involuntary muscle movements) that seem much worse than constipation. We will see what Dr. Cox says.

Speaking of nausea.... Steve still is losing weight. The last I reported, I believe he weighed 257. That was monumental as the first time he reached the 250's since he was young. But, he told me he is now down to 247 pounds. That's just unheard of for my little brother. We're going to have to bulk him up with some muscles and enticing food. Wish us luck.

Steve's next appointment is May 18th with Dr. Hu with blood work scheduled several days before. Let's hope for some nice, lower kidney numbers.