Chemo Treatment No. 11

We arrived early at Northeast Georgia Cancer Center this past Wednesday morning. We were seen almost immediately by Meredith, the Physician's Assistant. Ed's visit was very quick and routine. The hi-lites are as follows:

* Ed gained two pounds since last visit. He is at 191 now.
* His blood pressure had dropped to 120-something over 70-something. (don't have notes with me at this time).
* His blood work was great, but his blood was a bit thick, so his coumidin dosage was adjusted again. One day he takes one 2.5 milligram caplet, and the next day take one and half 2.5 mg caplet, and the next day back to one caplet, back and forth.
* Meredith said Ed is doing good.

On over in the treatment center, Ed settled into a recliner and soon a nurse had his I.V. started and his toxic cocktail began dripping into his vein. This week, Ed chose to have his I.V. in his right arm. He usually gets it in his left arm. He never complains, but I wondered if maybe the left arm is beginning to get tired of getting all the needle action.

This visit we got to know an older couple who were there for chemo for the husband's lung cancer. After talking for a few minutes, we learned that they lived just a few miles from where Ed and Mama live in Winder, and that they also lived in Lilburn, near where we lived, way back in the 70's and 80's. They were both retired school teachers and very nice. The wife was so attentive to her husband, holding his hand while his I.V. was being inserted, and making sure he got snacks and drinks. There was also an older gentleman seated on the other side of Ed, but we didn't get much out of him, except when I said I was going to the snack machine, he gave me change and asked me to get him some peanut butter cookies.

When Ed's chemo treatment was finished, we said our good bye's and headed home. It is interesting the different types of people you meet in the chemo treatment rooms, and what types of cancers they have. So far we have not met another GBM (Glioblastoma Multiforme) patient. We may not, as I believe Dr. Splichal said he treated 8 patients with the disease last year. Compared to other types of cancers, I don't think it very common. But no matter what type of cancer, I guess everyone in the chemo treatment rooms feels a 'kinship' in a way, that everyone is there for the same reason, fighting to live.

In two weeks we will be back for Chemo #12 and should learn when Ed will get his new MRI. Both Meredith and Dr. Splichal have said it should come about in November.

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.

Chemo Treatment No. 9

Ed's doctor visit and chemo treatment no. 9 was mostly uneventful. Every other visit Ed sees Meredith, the P.A. (Physician's Assistant), instead of the oncologist, and this visit was with Meredith. Here are the hi-lites of the visit: * His weight remained the same - 188 lbs. * His blood pressure was good. * All his blood work came back with normal/good levels. * All medications levels remain the same.

Meredith noted in her portable computer that Ed got a flu shot since his last visit and that headaches continue, he'd had a seizure since the last visit, his appetite is still at a loss and he still has the strange sensation of water trickling down his forearms. All in all, Meredith, like Dr. Splichal, feels Ed is doing quite well to be a brain tumor/cancer patient. Ed's seizures had been under control for four months, but now he has had three seizures in the past month. One on August 30, the next one approximately two weeks later, and then the most recent one was yesterday. About the same severity and endurance; no loss of consciousness, eyes rolling, mouth moving and saliva from the mouth, head and body jerking. Luckily, Ed has never fell or injured himself or anyone during one of these seizures that last just a few minutes. As always, he is left weak and briefly disoriented, but recovers relatively quickly.

At the time of the second seizure during this new round of seizures Dr. Mitchell (neurologist) decided to up Ed's Lyrica dosage from (4) 75mg capsules to (5) 75mg capsules. After I reported the latest seizure, he upped it one more capsule starting tonight. Ed now takes a total of 450mg of Lyrica and 500mg of Dilantin and 1 mg of steroids (Decadron). Dr. Mitchell doesn't seem sure why his seizures have returned. He said perhaps since Dr. S is slowly weaning Ed off Decadron (over past few months has gone from 12mg a day to 1 mg a day), that his brain could be swelling again. Or perhaps he is just having 'break-through' seizures. We are hoping the increase of Lyrica will have the desired effect.

Ed continues to get about with his walker, unassisted. Dr. S stated in at Chemo Treatment no. 8 that he wanted Ed to wean himself off the walker. Ed is scared he will fall and has not attempted to give it up yet. He is still assisting mama with making breakfast. He gets everything out that is needed to make breakfast, flips sausage as it cooks in the frying pan, and other things that Mama says are a big help to her.

He still has a non-complaining attitude and is still very pleasant and never seems to question his lot in life. He does seem to be more 'down' lately than he has been all summer. His speech is still hard to understand. I have helped him apply for assistance to help pay for speech therapy, but it's a lot of paperwork and really gets into your business. I don't know if we will ever get anywhere with it.

The strangest thing that has come about late summer and early fall, is the cat Mama and Ed have has begun having seizures. The first one happened approximately a month and half ago. This past Sunday he was sitting on the rail by the front porch and he dove off into the bushes. Mama thought he was after a lizard; I thought he fell off with a seizure because when I looked in the bushes for him he was laying still on the ground, then slowly got up. Today, Mama reported that the cat had a seizure right in front of them. Like the first one, he was laying in a chair on the front porch when he began seizing. He then fell off the chair on the floor and then lay stretched and taught, like he was paralyzed, with eyes wide open. Afterwards, he slowly came back to himself and acted normally. Mama and I have speculated as to why the cat could be having seizures. Mama did put TWO Frontline capsules on his fur a week before the first seizure. She thought it would keep him more 'flea-free' and not hurt him. Could he have gotten into some other type of poison? We just don't know. My Aunt Judy wonders if he picks up on Ed's seizure activity and responds to it. We just don't know. Ed still needs your prayers. Please pray that his seizures will get under control once again, and that his body will continue to tolerate chemo.

Please pray for Mama's health and her ability to take care of both herself and Ed. Please pray for his doctors that they will know how to treat him.