5 Down, 25 To Go

Radiation is in full swing in spite of the fact that the machine had been broken last weekend (just as we were starting). Yikes. At the beginning of the week, the team was still working on getting the positioning down - that meant they were holding Keith on the table for an hour at a time and taking quite a few pictures during and after the treatments. By Thursday, everything was aligned to their satisfaction. Our appointments are at 8 am and Keith is in and out in 10 minutes or less.

What is it like? Not too different from getting an X-Ray. Keith is positioned on a hard flat surface. The mask we had custom-made last week is placed over his face and "bolted" to the table so that his head is held very steady. Since Keith's right arm/hand continue to have a "life of their own", that arm is also strapped to the table to prevent any unwanted movement. The radiation is administered from two positions - one just above the tumor (left fronto-parietal area) and another from the side, just above his left ear. The machine flies around him and the positioning is all guided by a computer. There is generally a team of 3 attending to the procedure.

Radiation is cumulative and Keith noticed no particular side effects this week. We have been advised however that he will start to feel very tired as the treatments continue. We are also monitoring his blood as both the radiation and the chemotherapy will adversely impact his immune system.

On Thursday we met with an alternative/complementary therapist. Our surgeon recommended us to B. Evan Ross who is himself an 8 year survivor of Glioblastoma Multiforme. Ross' journey is remarkable: having embraced alternative/complementary therapies during his own treatment, he subsequently transitioned from a music career to train in Oriental medicine and acupuncture. Ross' practice is associated with the cancer program at Cedars-Sinai and Keith will be working with one of his associates starting with acupuncture this coming week. Among our goals we hope to help Keith regain strength and control over his right arm as well as better withstand the fatigue that will grow over the next few weeks with the radiation.

Also this week we began adding in some supplements. The most notable is an extract from the mushroom Coriolus Versicolor. For those who like to hike, you may know this mushroom as "turkey tail" - it is quite common on tree stumps and fallen trunks in the woods of North America and Europe.

Coriolus versicolor contains two proteoglycans (PSP and PSK) that have been shown in studies to boost immune cell production, mitigate chemotherapy symptoms, and promote anti-tumor activity. It is used extensively in both Chinese and Japanese medicine.

We are also incorporating shitake mushrooms into our meal plans every day. They show up in every vegetable dish and Sammy makes a nice tea by soaking the dried mushrooms. Mushrooms are used extensively in Chinese medicine - these are two of the more important ones used to boost immunity and reduce tumors.

Radiation to start on Monday

The week is ending quietly and radiation treatments are confirmed to begin bright and early Monday morning.

Keith's seizure activity has receded and for now we seem to have the meds aligned. His surgery scar has practically disappeared and he is looking more handsome than ever!

We are now turning our attention to fleshing out a "Survival Plan". In the near term, that means consulting with the UCLA team (they are reviewing our biopsy samples) and seeking advice from one of the few leading doctors in the US who has looked at the efficacy of "alternative and complementary medicine" options -- these are things we would consider adding to the current treatment program (i.e. chinese herbals, Celebrex, Supplements - melatonin, lycopene, etc.)

For the longer term, we are reviewing clinical trials as well as cutting edge work that is currently being done in China and India. Knowledge on this front will help provide us with options to consider later on if we are not getting satisfactory results from the current protocol.

Many people have asked if Keith is following a special diet. Yes, he is. We are currently adhering to the guidelines posted on the web pages of the Brain Tumor Society. If you are curious, here is a link to their article on nutrition for brain tumor patients: http://www.tbts.org/assets/files/Fact%20Sheets/Nutrition_and_Brain_Tumors.pdf

A bit shakey

OK, bad pun.

The last few days Keith has experienced a few "tremors" while we work on adjusting the doseage of the new anti-seizure medications. It has been a bit tough - because we know intellectually that these little seizures are related to calibrating the medications - but emotionally it is certainly a bit frightening.

On a more positive note, we met with the surgeon this morning and he was very pleased with how fast and well Keith is recovering from the surgery. We will meet with him again at the end of December when radiation is completed.

Finally, Keith has completed the first full week of Temodar and has had no side effects whatsoever.

Dilantin is history!

We have spent the last two days meeting with doctors and getting Keith's treatment plan in place.

First, we have swapped out a lot of medications - all theoretically for the good. The headline news is that Keith has been able to replace Dilantin - an anti-seizure medication - with a newer medication - Keppra - hopefully eliminating a few very unwanted side effects. Those of you who have had a chance to see him over the last few weeks know that he has been very unsteady on his feet. This was not a byproduct of the tumor, but rather a side effect of Dilantin. He should now be able to pass the "walk the line" portion of the sobriety test....

Second, we are preparing for the radiation treatments. The process involves creating a "mask" which is customized for Keith and his tumor. This mask will help position Keith so that the beam can be localized to the tumor area. Our radiation course will be 5 minutes each day for 5 days a week for 6 weeks (30 treatments). We will probably start the week of the 23rd as they prefer to give the surgical site a good amount of time to heal before they start irritating it again.

Third, we have sent a sample of the tumor to UCLA for a pathology review. They may (or may not) be able to give us more insight into the specifics of Keith's glioblastoma.

Finally, Keith has had no side effects to date from the Temodar. His scar is healing nicely and he was finally able to wash his hair today. (Another Halloween possibilty down the tubes. With a comb forward, he had potential as Napoleon Bonaparte.)

Staples are out!

Keith must give up his plan to be Frankenstein for Halloween. Seemed like a good idea at the time.

Keith started chemotherapy today. He will be taking Temodar once daily for the next 42 days. Temodar is administered orally (at home) and has relatively modest side effects - sometimes nausea and usually hair loss. (Keith has also been given one of the new anti-nausea drugs to take in combination. We are told that most patients do not notice any nausea with this regimen.)

Temodar is a relatively new part of the protocol - and has only recently begun to be prescribed for patients with newly diagnosed glioblastomas. It was orginally used only for patients with re-emerging tumors - i.e. those who had already completed radiation treatment. It's effectiveness for newly diagnosed tumors was confirmed by studies over the last year. Keith will take the drug during his course of radiation and may even continue to take it after radiation.

Temodar has a web site if you want to read more - and there are many articles if you google the name. Temodar is at: http://www.temodar.com/temodar/application.

In a nutshell, the drug interferes with the DNA in fast growing cells - tumor cells - and prevents them from reproducing. It has little effect on slow growing cells. (The reason patients undergoing chemo lose their hair is because hair is comprised of fast growing cells.) Temodar will not eliminate the tumor - but may help slow it down or shrink it.

Tomorrow: staples come out!

No, they don't use Bondo

OK, this one is for the architects (and other geeks). Those who faint at the sight of blood may want to skip...

Here's how it all works. They shaved a 1/2" strip of hair across the top of Keith's head - ear to ear. This is where the incision was made - creating a "flap" for access. (The brain surgery version of the bikini cut.) No, they don't shave the head anymore because they have found that shaving creates little nicks and cuts which invite infection.

Working under the flap, a "door" into the brain is created by cutting a roughly 3" x 3" square into the skull bone. The sides are very slightly angled - 10 years ago they would have been fully angled. Yes, a small amount of bone is lost - but today's instruments are very fine as opposed to the "saws" we used to see in movies when we were kids. Nobody ever gave us an answer to "where did the bone dust go?"...sorry.

When the surgeon is ready to close, he places a series of 3 titanium bridges each about the size of a quarter on 3 of the edges. These provide support and help lock the bone back into place. In patients who are 40 or younger, the bone will eventually fuse/grow back together. For those of us alta kaka's the skull bones no longer grow back and we rely on the bridging and general mending of tissue and skin to hold it all together. (Come to think of it, I wonder if we should tell them about bondo???)

The incision is closed up with staples and intially topped off with a pressure dressing to keep everything in place.

So..the titanium bridge technology is only about 10 years old. In the old days they relied on angled edges to support the bone flap. Yikes. Sometimes it actually sank down into the hole creating a funny indentation on the patient's head. (A familiar problem we have all encounted in model building.)

Our surgeon says the titanium bridges make everyone look like a pro...

Keith's recovery from the surgery is progressing very well. Not only was he moved out of the ICU last night and into a "regular" room -- (yeah no more catheter!) -- but he was released to come home this afternoon.

This morning he walked around a bit and did some physical therapy to begin to retrain the way his brain communicates with his right arm. The way to think about it is that he used to drive from here to there by going 1 block and turning right. Now he will revise the route and make 3 lefts to end in the same spot. It is very doable - but takes some practice to get the brain to "run the plays" a little differently...and who said you can't teach an old dog new tricks!

The pressure dressing is now gone and the staples will be removed on Monday. Radiation could begin as early as next week.

Keith is still very tired and will be a bit unsteady over the next few days until the swelling reduces. He does not have much pain at this point - and what he does have has been easily controlled with medication.

Keith is recovering from the surgery at Kaiser Sunset - everything went smoothly. Based on the preliminary assessment, we have confirmed the tumor as a high grade "glioma".

The team spent 6 1/2 hours working through the biopsy. They were able to get us 6 samples, 5 of which are in pathology for analysis. We had hoped to get a somewhat larger "chunk" for genetic assessment (at UCLA) - that was not possible - but we have sent the 6th (largest) sample to UCLA in the hope that they will be able to work with it.

The tumor is entirely positioned in Keith's motor area. As a result, they were unable to resect (remove) any of the tissue - so we will be relying on radiation and chemo from here on.

Part of the reason the surgery went so long is that they painstakingly mapped each portion of the tumor to each part of the body it "controls". The objective was to take the small samples from areas which would result in the least noticeable "loss" - i.e. the movement you wouldn't "miss." From that perspective, it appears that we did well. Keith was still able to move his arm and wiggle his fingers right out of the surgery - - the surgeon was visibly pleased. The weakness/loss he has sustained to date, however, probably will not be recovered.

Keith was awake and very alert last night - in some ways more his "old self" than I have seen in the last 3 weeks. His first words were "I'm still alive?" followed later by, "Let the fight begin." The girls are working through it - they are still in tough shape and I am working on some counseling. Like Keith, I feel ready to move on and get into the fight.

He will be in the ICU for the next 24 hours, then on to a regular ward. If all goes smoothly, he will be released in a few days and we expect to start radiation next week or the week after. For those of you who are local, he would welcome calls and visits.

Keith will check in for surgery at 6 am this morning with the procedure beginning about 8:30.