Quantity vs. Quality

I read an article in the April/May 2012 edition of the magazine Neurology Now titled Antiepileptic Drugs for Treating Brain Tumors? by Andrea King Collier (pg. 13-15).

According to the article, a study done in Switzerland determined that Glioblastoma patients who took valproic acid (a common anti-epileptic drug) while taking chemo treatments fared better than patients who took other types of epileptic drugs or who did not take any type of epileptic drug at all.

I found this article very interesting because Ed, my step dad, took the drug Lyrica and Dilantin to control his seizures caused by his glioblastoma (brain tumor). To the best of my knowledge, Lyrica nor Dilantin do not contain valproic acid. I wonder, if he had taken valporic acid to help control his seizures, would he have lived a few months longer?

This article states that the average survival rate for glioblastoma patients is 15 months.  Ed found out he had the brain tumor in November, 2008. He lived till April, 2010. So he lived about 16 months after diagnosis. Did his anti-seizure medications help him live longer? 

I don't know the answer to any of my questions. But I know that even though he lived a bit longer than expected, his last month of life was not a high quality of living. His last month consisted of him being totally bed-ridden, totally depending on others for his toileting, eating, bathing, everything. I think he had his mind till the end, but he was trapped in a body that didn't respond to his needs or his wants. He couldn't sit up. He couldn't feed himself. He had to have a catheter and wear depends, and someone else had to change him, bathe and dress him.

If you or your loved one has Glioblastoma, I promise you, you will do whatever you can to make your symptoms or your loved one's symptoms less painful, and more endurable. Ed had seizures, so of course he was prescribed anti-seizure medications. Had we known this other drug was available and might extend his life, we more than likely would have asked for it. It may have helped him live a few more weeks or months longer. But I am not sure that would have been as ideal as it sounds.

'"If you are talking about a better quality of life for the time you have versus using a therapy that may prolong life for a month but decrease the quality of life, most patients choose quality of life, " Dr. Taylor says.' , states the article in Neurology Now. I must say, if I could live a month longer with increased mobility, clarity of mind, ability to communicate, etc., I believe it would be well worth taking the drug. Or even if my quality of life stayed the same with the drug while causing me to live longer, I would be happy with that. But if living a few weeks longer as a person in pain or frustration, it may not be worth it.

It's hard to know what I, or anyone, would choose in that situation. But at least the drug is out there, and the option is there if one chooses to take it. Perhaps with more research and testing, doctors will know more about the effects of valporic acid on the survival of Glioblastoma patients and will be able to offer that drug as another way to extend life, and hopefully improve quality of life.

One Doctor's Opinion...It's a Miracle

Ed had an appointment with his neurologist, Dr. Mitchell, today. This was a regular office visit to check up on his progress and Dr. Mitchell had not seen Ed in probably four or five months as we had to cancel his last appointment due to not feeling well and not needing to be out in the pouring rain.

(Picture: What a Glioblastoma Multiforme tumor looks like. Lots of 'branches' come off of the main 'body' of the tumor and grow outwards into surrounding brain tissue. When the tumor is is cut out, the little strand like projections are so small they cannot all be removed. Therefore, a new tumor can start from a tiny strand left behind. The drug Avastin cuts off the blood supply to the tumor (and hopefully the strands) and the drug Irenotrecan stops, or at least inhibits, cell division...preventing cancer from growing at all or not as fast.)


Dr. Mitchell had not seen the results of Ed's last MRI, done August 3rd of this year. I loved the look on his face as he read it. He looked puzzled, then shocked, then just amazed. He read part of it aloud, then starting reading to himself, his mouth moving. He finally looked up and said, this is amazing. I've never seen a GBM patient have a reduction in tumor size before. It is unheard of. I have never seen this happen with a patient.l It is what you would call, a miracle. During our conversation, he said the word 'Miracle' two or three times. Me and Ed were smiling. You rarely get this type of reaction from a doctor.

Next, down to business. I told Dr. M of my concerns that the dosage of Lyrica Ed was taking was making him weaker, more confused, less able to speak. Dr. M reassured me that Ed has not 'topped out' on the dosage tolerable for Lyrica. He said yes, the symptoms do sound like common side effects resulting from taking Lyrica. However, he feels that Ed needs to stay on this drug and on this dosage. He said that with time, the side effects will lessen and the good effects (no pain, no seizures) out weigh the bad effects. He said there are other drugs used to control seizures, but they would have the same side effects as Lyrica. Also, Ed is approved to receive patient assistance with the drug Lyrica. Applying for patient assistance for other drugs could be time consuming and perhaps frustrating. He strongly urged we go with his recommendation to stay with Lyrica and wait for the side effects to lessen and/or subside. We agreed.

Other highlights of the visit; Ed's blood pressure was good, his blood work good, and Dr. M put him through several little 'tests' (raising his arms shoulder level, holding his arms up with his eyes closed, I noticed Ed's right arm would lower while doing this test...wish I had asked what that meant), touching his nose with his index finger and then touching Dr. M's finger. Some type of neurological assessments, maybe to determine presence of stroke? I am not sure. I should have asked.

Dr. M is a good man. In the past, he has told us he prays for Ed and also his statement. . .' this is a miracle', shows he is a good Christian man. I trust his judgement and treatment decisions. He shook our hands and told Ed to come back in six months. That tickled Ed. So me and the 'Miracle Man' took off...cruising down Hwy 316 towards home, happy once again to have received a 'good report'.


P.S. It is a miracle that Ed's brain tumor has been reduced. We can say it is because of the chemo drugs Avastin and Irinotecan and the care he receives from his doctors, family and friends. I know though, that this miracle is a result of God's grace. He has listened to Ed's prayers and everyone who has prayed for him. God is the only person who can bring about a miracle. All the glory goes to God!

Chemo Treatment No. 10

My brother, B2, took Ed for his chemo treatment this past Wednesday, October 7, 2009. This was a Dr. Splichal appointment, and fortunately, another 'uneventful' visit.

Ed had gained one pound since his last visit two weeks ago, and is now back up to 189 pounds. His blood pressure was good...130/80. His blood work numbers were good, but his blood was a little thin so they dropped his Coumidin dosage from one and a half a day to one a day. My mom had wanted to know if Ed could take a magnesium supplement for leg weakness and pain and Dr. S said yes. Very routine.

Chemo went well and uneventful as well.

Because of the return of the seizures, Ed is taking a higher dosage of the drug Lyrica now. His dosage went from 300 mg to 375 mg about four weeks ago, and then two weeks ago went to 450 mg. Lyrica is a drug used to treat fibromyalgia and seizures. There is quite a list of possible side effects from this drug, and feel that Ed being on the high end of the maximum daily dosage allowed, he is beginning to get some of the more serious side effects; mainly muscle weakness and the loss of cognitive ability. His speech has worsened notably and he really has to struggle to maintain a single train of thought and get out anything he is trying to say.

Next week I will be going with Ed to see the neurologist, Dr. Mitchell, and I have a lot of questions to ask him about this drug, Lyrica, and the dosage Ed is taking. He had mentioned earlier in Ed's illness that there is a third drug he can prescribed to try to get Ed's seizures under control. I want to know what that drug is and if it could possibly be an alternative to Lyrica, or if a lower dose of Lyrica could be taken in conjunction with that drug. I feel that a lot of the symptoms Ed has...difficulty speaking, thinking, walking, bruising, muscle weakness and fatique could all be side effects of Lyrica. I want answers and he needs help. I put faith in Dr. M that he will work to get Ed to a better place. I have to believe this, for I feel Ed may now feel the worse he has in a very long time.

November will bring about a new MRI. We pray for God to show the doctors, us, and Ed, that the chemo cocktail he gets every other Wednesday continues to work and that the brain tumor will be even smaller than a few months ago. Maybe it will even be gone.

One can believe and have hope.