So What's This New Treatment?

It's time I provided a bit more information to you about Steve's new tumor treatment with the Novocure TTF. The TTF stands for Tumor Treating Fields and it has electrodes, taped on Steve's head in which the currents alternate directions. It "uses electric fields within the human body that disrupt the rapid cell division exhibited by cancer cells.  These results demonstrate both disruption of cancer cell division up to complete cessation of the process, as well as complete destruction of the dividing cancer cells."  
There is a video on their website that shows how cell replication is interrupted by the alternating tumor treating fields:  http://www.novocure.com/ttf_therapy.php?ID=16  It uses some technical jargon but only lasts a minute and a half, and the picture shows how the cells have trouble replicating. Since cancer cells replicate much faster than normal cells, they are more sensitive to the TTF than normal cells, and therefore able to die off more quickly.

On Thursday, 10/25/14, they had a Novocure representative at their house who spent about 3 hours training them in their new equipment. Dr. Hu made a map of where to place the electrode arrays on Steve's head. We understand the location often changes after MRIs based on changes in the tumor.

Electode array

There are 3 electrodes arrayed together under one piece of tape and 4 arrays taped to his head.  His head is shaved with an electric razor every few days. They have extra tape to use when the edges start to come off. There is only about a half inch of skin showing between each array. There is a wire coming off each array long enough to reach his hip. These are braided together and plugged in to the main device. It's the size of laptop with a front panel display, power button, error alarm and lo battery light. It records an Excel-type spread sheet of Steve's actual use and what error alarms occur at what times. The Novocure representative comes out weekly to download the information and provide supplies.

The whole shebang

The back pack provided has side vents and a hole on the side for the wires to go through. It doesn't fit over both shoulders so he uses one long strap over one shoulder instead. There are 2 main devices. One uses rechargeable batteries and has a base unit for the 4 large batteries. Each battery only lasts about 3 hours. He has 2 complete sets of charging units: one for home and one he keeps at work. He also has a second device he uses at  home which plugs in to the wall. He uses it near his favorite chair in the family room and then he has to carry it upstairs for bed every night. It is a bit cumbersome to haul his  stuff every time he wants to get up from his chair. I understand it's kind of heavy, too.

Steve said he initially felt a warm tingling sensation when the unit was first put on, but now he does not feel anything. The doctor wants Steve to wear the device on average 20 hours per day, or 80% of the day. Steve's first week averaged 85%.  There is always some time when the unit is off every day:  showers, head re-shaving, when the electrodes are not making good contact or are being replaced every 3-4 days.

Our sister, Lesley told me Steve's personal goal is to wear the machine 95% of the time. She said he has an excellent outlook on the whole thing since he said "this machine is keeping me alive so I'm just going to live with it". And then he picks up all the cumbersome equipment and carries it around with him, even a million times to answer the door for trick or treaters, or to get on the treadmill. They have learned to braid the wires on the right side of his head so they don't tangle when the bag is on the passenger seat of the car. Steve wears a baseball cap most of the time to cover the arrays.

So far, Steve has not had any side effects. The typical side effect is irritation of the skin under the electrodes. He has a cortisone cream for when that happens. It would be applied for 10 minutes, then wiped off with alcohol so the arrays would re-stick to his head. He's not even had any pain when the tape is pulled off or when being shaved down to bare skin :)

Compared to chemotherapy the side effects are nearly inconsequential. With Temodar, he had nausea, needing meds, constipation, needing meds, serious kidney problems and then he had to stop taking it in August because his blood platelets got too low. With Avastin, he had a life-threatening blood clot with leg pain, now needing twice a day shots in his stomach and he gets diarrhea and feels cold very easily.
There are lots of other side effects which could be serious, too and we worry about "chemo brain" over time. Lesley said Steve's stomach looks horrible from all the bruising from the blood thinner shots. He looks like got beat up and lost. Terry does that to him, LOL.

So that's the current news on the Novocure device. I'm looking forward to seeing a picture of Steve with it on and will pass it on to you when I do.

Novocure TTF Device

Steve started a new treatment for his tumors Thursday. I will provide more details soon, but here's the short version.

http://www.novottftherapy.com

This is a photo from the Novocure website of someone wearing the device. Terry says Steve's looks just like that, but that he can't fit into the straps of the back pack and so carries the bag like a man purse with a single shoulder strap.

Steve says he is now "hair impaired" :)

A Rough Patch

Steve and his family have been going through a bit of a rough patch. We already talked about the flu and how that affected Steve's driving temporarily. Then there was the low platelet problem which has prevented Steve from taking Temodar.  Unfortunately, his platelets have continued too low to resume his Temodar. We are a bit unhappy about this because we have heard from Dr. Hu that Temodar is the first line defense against glioblastoma and the most effective drug they have to fight recurrent tumors.

Blood lab results from 9/12/14 showing, once again platelets below 100,000, and therefore, too low for Temodar:

WBC 5.1 RBC 4.85 Hemoglobin 15.8 Hematocrit 46.1 Platelets 94,000

Creatinine 1.1

Then Steve got to have blood drawn again on 9/26 just prior to his Avastin treatment and just after his scheduled MRI: WBC 7.8 RBC 4.84 Hemoglobin 15.9 Hematocrit 46.1 Platelet 68,000

Creatinine 1.1

Like.Creatinine 1.1 .Creatinine 1.1

This was his first MRI since starting his new Avastin treatments. Steve was feeling quite anxious about this appointment, fearing an increase in the tumor size because of his flu symptoms. 

Terry let us know the results with this information: "Hi Everyone! Steve's MRI showed NO NEW GROWTH!!!!!! Yeah!!!!!!!!! Thanks for the good thoughts, prayers, and love!!!!!!! Long day for my love...MRI;blood work; Chemist infusion ; all while dealing with the end of a chest cold and a sore right knee muscle....Been a long month... Many Thanks Love Terry".

She later gave us more details: "the Avastin did it job the MRI showed no new growth!  Dr. Hu was very happy with the results, Next treatment October 10th, and next MRI in Early November. Steve’s platelets  have been taking a beating as a residual effect from the Temodar, so we are discussing different treatment options to allow he platelets to recover.

One option is to do the Avastin alone, the next option is for Steve to wear the NovoTTF device, and the third is to do both, this is the option Dr. Hu is recommending. I have attached links to both websites for your information.The  NovoTTF  is a device Steve would have to wear at least 18 hours a day for it to be effective. Plus he figures he needs to get clearance from work.  It would be a real lifestyle change. so we have a great deal of thinking and due diligence to do over the next week or so."

http://www.novottftherapy.com

http://www.avastin.com

Steve had blood work on Thursday, 10/2 "Only a CBC...and his platelets were 106,000 Yeah!"

Terry had mentioned a sore right knee muscle above. When it didn't get better, Steve went to his regular doctor's office and was diagnosed with a strain. Because the pain was now closer to the ankle, he was given a boot to keep the ankle from moving when he walked.

Now we are up to Friday, 10/10/14 when Steve had his Avastin infusion treatment. He went wearing his boot like he was supposed to do. Dr. Hu questioned Steve about the boot, seemed to develop some concern and, at the end of the IV treatment, sent Steve to have a venous doppler ultrasound to the calf and leg, which showed…… A HUGE BLOOD CLOT covering the whole leg from hip to ankle. Steve was sent right to the emergency department and then stayed overnight in a nice, private room. He got IV heparin blood thinner to stop the clot from forming and to help decrease the risk of part of the clot breaking off and killing him. Saturday morning, Terry showed the nurse she knew how to give shots and now Steve gets twice a day Lovanox blood thinner shots at home for at least the next month and  probably once a day thereafter for the foreseeable future. They got to go home Saturday afternoon.

So, two rumor recurrences this year, the flu with visual problems, a cold, low platelets with interruption of chemotherapy, sore leg now diagnosed with a serious blood clot which luckily wasn't any worse and now a new decision to start the NovaTTF which we will talk about in a new post to come.  

It's been a bit of a trial for them. Steve doesn't like being sick so has not been pleased with these complications. On the other hand, he's been so lucky that he has been able to continue working, except when his cold was too bad, and he's been lucky that the blood clot didn't cause any serious problems.

Let's hope the rough patch is over.

Holding Temodar Treatments

Steve's blood platelet levels have been too low to take his Temodar. His first round of labs had platelets even lower at 81,000. Terry sent me the following:

Here you go 9/4/14 Blood work for Steve WBC 4.9 RBC 4.75 Hemoglobin 15.7 Hematocrit 45 Platelets 88,000 Creatinine 1.1 BUN 16 Next Appointment, Avastin and blood work 9/12

He had his Avastin treatment about a week ago. It went well without any side effects, just taking up the morning. They saw a substitute doctor instead of Dr. Hu who was very optimistic about how much longer folks are living with glioblastoma and how many new treatments and options are available.

I got to spend last weekend with them. It's always great to see them and enjoy their home and hospitality. We had planned a quiet day since we didn't know how well Steve would feel right after his second Avastin treatment. We talked and relaxed and barbecued. I noticed more word-finding problems than when I had last seen him. I wonder if that was left over from when he had the flu. Terry was going to mention it to Dr. Hu when he came back from his vacation and will see them on the twelfth.

Terry and our sister Lesley spent yesterday at a seminar on Outsmarting Brain Tumors at Cedars-Sinai. They found some of it basic but they also learned some new information, especially about immuno-therapies and vaccines. Cedars has made the information available to all of us via the magic of the internet, for those of you who may want more information :)

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurosurgery/Conferences/2015-Outsmarting-Brain-Tumors-Presentations.aspx

A talk about nutrition:

http://maryhardy.com/

And another link they liked about someone named Chad at Chad's Blog is http://thebrainchancery.com

All Better

Hi Lisa......Sorry crazy week.....Steve had his ophthalmologist on Tuesday, All his test, including a Visual Fields test came out normal. Emailed Dr. Hu with results, and he cleared him to drive. Conclusion the flu Steve had last week intensified the symptoms of his active tumor. He over the flu, and not list to the right any longer. YEAH! Love you bunches.

New Onset of a Possible Visual Field Deficit

Steve and Terry weren't too alarmed on Sunday evening when Steve developed a mild headache. After all, Steve's body received a lot of chemotherapy last week when he finished his normal round of 300mg Temodar on Wednesday and then began his first round of Avastin on Friday. It was bound to be hard for him and some residual discomfort would be normal, right?

As the next few days progressed, however, so did Steve's headaches and Monday night, Steve began feeling chilled. He had spent his work day in a cool, air conditioned room designed to keep some supercomputers cool so it was understandable. Tuesday, his headache felt worse and he was even more chilled so maybe he would feel better after spending some time under the blankets, which he did after dinner, going to bed early.

Now, unbeknown to us, Steve had been out to lunch with his work buddy, Steve Cox (the same friend who had encouraged Steve to see his doctor about his original word finding problem which led to the discovery of his cancer) and Steve Cox noticed that our Steve was driving too far to the right of the road, actually sometimes hitting the weeds on the shoulder, and our Steve was not aware that he was driving off center. Thursday, Steve Cox let us know about his concern.

On Wednesday, Steve's headache was getting bad and by the end of the day he began to have mild diarrhea. That evening, he misjudged the distance to drive around a stopped vehicle on the road and hit his passenger side mirror, damaging it.  Uh oh, a second event involving vision on the right.

Thursday, he stayed home from work and had a fever. Tylenol helped with the fever.

Terry called Dr. Hu who said Steve's symptoms were likely a viral flu bug. He explained that Steve is more prone to get sick due the chemotherapy lowering his immunity and any infection will exacerbate symptoms from the tumor. He ordered a CBC blood test for Friday and wants Steve to see an ophthalmologist. There is a neuro-opthalmologist at Cedars-Sinai he could see but any one closer can test for visual field and save them the time and trouble of driving in to the city. Terry plans to call Monday morning to make an appointment for Steve.

Steve and Terry agreed that Steve won't drive again until he is tested and cleared by both the ophthalmologist and Dr. Hu. He can carpool with his colleagues to work until then with just a little inconvenience due to differing schedules.

Friday, Steve's blood test results indicated that Steve was fighting an infection with his white blood cell count at 5.8. That is high for a chemotherapy patient and high for Steve. It shows his body is fighting an infection. Today, Steve is starting to feel better. He no longer has chills and his headache is mild.

It's interesting that even with the knowledge that Steve did not see objects on the right side (at least twice) that neither Steve nor Terry have noticed any visual field deficits. It's possibly transitory or perceptual or improved or they aren't observant enough to find it. It will be interesting to know the results of the eye testing.

We hope the testing is done quickly to determine if Steve can safely drive to work again soon.

Steve's next routine lab tests are scheduled for August 21st and his next Avastin treatment for August 29th followed by another doctor's office visit.

New Chemotherapy Drug, Avastin, Begins

The Tumor Board of multiple oncologists met at Cedars-Sinai this week and confirmed what Steve and Terry believed: there can be no gamma knife or surgery on this new tumor. They hadn't held much hope for it, but now it's a confirmed "no".  Onwards to the new chemotherapy drug.

They felt fortunate to get an earlier than expected appointment for Friday, August 8th. They went at 7:30 to start the blood and new urine tests and registration paperwork, then received the Avastin and then saw Dr. Hu at 1:00.  Our sister, Lesley, spent the day with them. She said it went very well and Steve had no side effects. Steve received an IV in his left arm and the Avastin flowed for about 90 minutes.  It went uneventfully and then they went out for pizza until their 1:00 appointment.

Lesley said Dr. Hu was interesting to talk with. He explained everything and allowed time for questions. You remember that they had sent out pieces of Steve's original, frozen, tumor which was removed a couple of  years ago? They sent it to two different labs and have received results from one lab already.  If I understand correctly, Caris Lab tests for genetic and protein markers, and provides information about what drugs cause the most reactivity, that is, which drugs are most likely to work on Steve's tumor. This lab specifically tests on glioblastoma multiforme tumors  like Steve's.  It showed that Temodar was better than the other drugs they tried, therefore, Dr. Hu wants to continue using Temodar as the first-line chemotherapy drug. We had read about a study which showed good results with another drug, I believe it was Carboplatin or isoblanketyblank (my wifi is down and I can't look it up) but Steve's tumor showed no reaction to it.

The second lab, Foundation Health, runs tests on general broad-based cancer tumors, not specifically GBM, and we're awaiting their results. It should be a couple of weeks still. Dr. Hu will take that information and continue to customize the best treatment for Steve's specific tumor. We're pleased to have this information. Medical science is moving forward all the time, and this testing is brand new and was not available before when Steve's tumor was removed.

Lesley then got to see Steve's MRIs and Dr. Hu explained what she was seeing. She says the old, surgically removed tumor was a black void and is likely fluid. The tumor area which was gamma knifed is a void and there is a bright spot in the shape of a brine shrimp (who knew?) which is the new tumor.  Dr. Hu showed them how hard it is to interpret what is scarring or swelling versus what might be active tumor. The new drug, Avastin, works by slowing the growth of new blood supply to the tumor which may make new tumors harder to see but it also takes away the "radiation look" around the gamma knifed tumor so details of this brine shrimp feature on future MRIs may be more accurate.

Dr. Hu says there is no set standard of treatment for recurrent glioblastoma tumors because it's all too new. Studies start and stop all the time and new information is always coming. He says at every appointment they will reevaluate how Steve is doing and adjust as they need to. He showed Steve a NovaCure cap which has shown some success. You wear it on your head and it disrupts cell division by electric currents. The more it is worn the better, 18 hours a day minimum. It was not as bad looking as Steve thought it would be, as he thought it would make him look like Darth Vader. It really fits under a baseball cap. It may be an option for him in the future.  For right now, they will continue Temodar pills every 4 weeks and do IV Avastin every two weeks. The nurse at the IV infusion center said she has patients who have been on Avastin for years. Dr. Hu says they will do it for as long as it works. The parameters for being able to have an Avastin treatment are: blood platelets  >100,000, creatinine <1.5 and no protein in the urine.

Most of you know that Steve works on a two week schedule which gives him every other Friday off. This Avastin appointment happened to be on his working Friday. They can't give another Avastin dose early but they can give it late, so Steve's next appointment is scheduled for three weeks from now. Before every appointment they will take blood to check all his lab values and they will check his urine for proteins, then the Avastin will be delivered by IV. It should be even faster than this first time, expecting to be done in a half an hour, then followed by an appointment with Dr. Hu.  Steve will spend more time driving to and from his appointment than receiving his chemo.  The joys of living in the big city :)

Dr. Hu invited Terry and Steve to a conference for patients and their families, "Outsmarting Brain Tumors"  September 6th, at Cedars. Dr. Keith Black a well known oncologist and Dr. Hu will be speaking, among others. Terry plans to go and I would like to, if possible. It sounds approachable and informative.

Having a second new tumor this year hit Steve and Terry pretty hard. Terry said reality has hit home and last week was tough emotionally for obvious reasons. Steve was starting to second guess himself wondering if every little lapse of forgetfulness was the tumor. He says, "don't feel sorry for me, I've had a good life", but he is concerned about his boys and possibly missing major milestones in their lives. They have plans to meet with the Human Resources Department at Steve's work to find out what is available in the worst case scenario, what options there are for early retirement or disability and for pension benefits.

When I talked to Terry  Sunday, she said she had observed an increase in fatigue in Steve but wasn't sure if it was related to the Avastin or the end of the Temodar. In other news, she is registered for computer classes starting in a few weeks and Adam and Nathan start high school Thursday. Nathan is a senior this year. Nathan should have his learner's permit next week and will use his Mom's car to practice driving. Look out, world!

Bad News!

On a regular Friday MRI appointment, Steve and Terry went early for the actual MRI, followed by their appointment with the oncologist, Dr. Hu. This time, however, it was 10:20 before Dr Hu came in. They could tell by the look on his face that there was bad news: Steve has new tumor growth.

The new area has too much growth to just be scarring from the previous gamma knife radiation. Now they believe there is a 1 cm x 1 1/2 cm white, wormy shaped, (kind-of like a letter "J") tumor curved towards the old gamma knife tumor. The old tumor which was gamma knifed was 0.7 cm in size. Where it started they don't know,  possibly a hair of tumor that was missed by the gamma knife or maybe the dot that was seen the month before, or just an unrelated spot. When Steve asked what symptoms he might experience from this new tumor, he was told he might lose his balance and he might have trouble reading, that is, not comprehending vocabulary properly. So far, he has no symptoms.

Options for this tumor:

Dr. Hakimian had already looked at the MRI and said they can't re-do gamma knife as it's too close to his prior location. There is a meeting of the Cedars-Sinai Tumor Board this Wednesday where many doctors will discuss what the best options will be for Steve.

One possible trial is a "gamble", from Terry's description. It's an anti-PDL1 antibody
1B trial at Angeles Clinic  but one can't do normal chemotherapy so Steve ruled this trial out.

Another option is the NovaCure helmet but it is secondary to others, according to Dr. Hu. There are thousands of options but the goal will not be to eliminate the tumor, just slow the growth of this aggressive tumor which showed up quickly between monthly MRIs. Terry says this is a different mindset now. Scary stuff.

In addition, they are planning to send out a piece from his old, frozen, tumor which has been in storage at Cedars to map his tumor. Something about a y chromosome and to look for some hormone.  She was going to get more details for us about this.

Terry says they discussed the options and chose the established practice of Avastin with Temodar, preferred by Dr. Hu. Avastin is a drug that inhibits blood flow to the growing tumor. They hope to be scheduled in 1 to 1 1/2 weeks to start the Avastin process. The appointments will be every 2 weeks and given by IV at Cedars hospital. The first appointment will be a 1/2 day session. The second appointment will not be as lengthy, and by the 3rd session onward, they will only take 90 minutes each time. The side effects are expected to be low to Avastin, and one small complication is the smaller blood vessel effect makes the contrast dye injected for MRIs harder to get in to tumor areas, possibly masking new tumor growth. They expect to search harder for new tumors in future MRIs.

Terry says Dr. Hu is very positive and that they were expecting tumors to occur in new places and to have other recurrences. She says he gives us all the options, he's always positive, he says "let's try this first" and he walks it thru for them.

Steve has no symptoms and is going to work every day. Earlier in the week he had a 10 minute bloody nose. It was week 4 after his last round of chemotherapy when his platelets were low, so he was slower clotting. Speaking of labs, the last two results were on the usual side for a person on chemotherapy:

                7/23/14         7/30/14
wbc            4.3               4.7
rbc             4.68               4.8
hemoglobin 15.2           15.6
hematocrit    45.1           45.3
platelets    145,000     123,000
creatinine     1.2              1.2
BUN           20.2             15.5

Steve starts his normal Temodar dose at 300 mg as before this week. The next MRI is planned for October first.

Terry is planning to fill out an application from the Jack and Jill Foundation. She says Dr. Hu gave it to her  a few appointments ago when Steve had his recurrence before the gamma knife. She says it's like the Make-a-Wish Foundation, only for adults. She didn't fill it out before because they were going to be healed after the gamma knife. Now, she'll see if they can request a trip to Kauai as Steve has been wanting to go for years but it was a bit too pricey for their young family.

MRI Results #2 After Gamma Knife and DisneyWorld!

Steve had his MRI scheduled on a Thursday instead of his usual Friday this month because of the July Fourth holiday.  They went very early, as usual, for a 7:30 MRI appointment, followed by a 9:30 Dr. Hu appointment. When they arrived, for the first time, the MRI folks had Steve and Terry sign a liability for payment form. That was a little bit scary because MRI's are ridiculously expensive and it was so early, they couldn't reach the insurance company. So they signed the form. A little while later, after some annoying phone calls, they received their authorization numbers for payment and all was well. I always hate dealing with medical bills and insurance forms  so I'm glad this falls to Terry and not me.
Anyway, Terry says everything is fine:
Dr. Hu says the MRI hasn't changed and it looks exactly same as June's MRI. There is no new growth.
He is concluding what is remaining in the tumor location is dead tumor tissue, including that white concerning spot next to the original tumor. They are assuming gamma knife got it all since it has not changed in the last month and to expect these areas will always be there as spots of dead tissue in all forthcoming MRIs.

Steve wondered if they can do gamma knife again in the future if any new tumors develop. Dr. Hu says yes, if the new tumor is in a different part of the brain. They cannot radiate the same space again.

Steve was happier walking out than he had been walking in to his morning appointment.

Then they went to receive full body massages, a gift from a friend of theirs. They said it was wonderfully done and Terry, especially, loved it!

But before yesterday's appointment, they went to DisneyWorld!

Add caption

They went to the Magic Kingdom the first day. It's similar to our Disneyland,  so they spent more time on the extra activities like Country Bear Jamboree and many of the shows. The next day, Friday, they went to Animal Kingdom and really enjoyed the safari. It was so much fun, a giraffe even stuck his head into the tram they were in.
Now, Steve had started his chemotherapy just as they started their trip. By Friday night, he was having the pain and discomfort from constipation, a miserable side effect of the chemo. Since the routine they usually use wasn't working, Terry telephoned Dr. Hu and had a prescription medication sent to a local pharmacy. When she contacted the hotel concierge, DisneyWorld really went above and beyond to help. They paid for the cab to and from the pharmacy and canceled their nice restaurant reservation for the evening, waiving the cancellation fees for them. Fortunately, Steve was feeling better a little while later.

Saturday, they had planned the day off from the parks, knowing Steve and they would likely be tired. They sat by the pool, read books and did laundry and enjoyed themselves. 

Sunday they went to Epcot. They stayed together as a family for a while, then the boys took the bus back to the Magic Kingdom to go on more rides and Steve and Terry stayed at Epcot and walked around the Festival of Countries alone at a nice, relaxed pace.
Monday, they spent the day at the Hollywood Studios park. For dinner, they ate at the Brown Derby restaurant. They had purchased the Disney Dining Plan and thought it was remarkable to price compare the $400 retail dinner price to the 2 meal tickets each for a nice sit down meal.
The weather was as expected in Florida in the summer. Hot, humid, muggy and with  afternoon thunderstorms and lightening. They had a great time and loved spending time together.

Adam has started summer school. Nathan  plans to volunteer at the library.
Terry is back working as a temp at the same company she has been at before, this time for 6 weeks working full time.

They are looking forward to spending an upcoming weekend with 4 other long-time friends and their families.

Steve's next MRI is scheduled for Aug 1st, in one month.
He starts chemo again this Saturday with Temodar at his same dose. We wish him good luck and good health!

Happy 4th of July to all!

How was the First MRI after the Gamma Knife?

Hi everybody,

First things first. Steve always has to get his blood levels checked the week before chemotherapy is scheduled so the doctor can be sure Steve's body can safely handle it. Here are the results from the latest work up:
red blood cells 4.75
white blood cells 5.0
hemoglobin 15.6
hematocrit 45.1
platelets 114,000
creatinine 1.1
BUN 20

These are normal results overall for Steve and were not cause for concern.

This morning, Steve and Terry went back to Cedars for Steve's regularly scheduled MRI. Terry tells me the results looked just as expected and that there wasn't bad news and that Dr. Hu was optimistic. However, the tumor area in the Splenium looked worse than it had before the gamma knife procedure. It was larger and whiter looking as expected from the swelling and tumor cells dying from the radiation. There was also a small dot of white next to the original area which is probably also related to the radiation, according to Dr. Hu. We are going to believe Dr. Hu and not assume it could be a second tumor starting up, right?

Terry describes Dr. Hu as exceedingly cautious. Dr. Hu moved up the next MRI to Thursday, July 3rd at one month instead of the usual 2 months. He also won't let Steve delay chemotherapy so he will likely have to take it during their Disney World trip this summer.

Steve asked the doctor if the gamma knife didn't work or if the adjacent fuzzy spot is a new tumor, what options would they have? Dr. Hu said, they could change to a different chemotherapy medication or look into clinical trials or experimental research in the future. There is also the possibility to try an electrode therapy that had some initial good luck. These aren't needed yet, just possibilities if the future isn't as good as we expect.

Steve will continue his monthly chemotherapy schedule, the next round starts tomorrow. It will be Temodar 300mg Saturday thru Wednesday.

Their boys finished the school semester today. Nathan's choir will be singing at the high school graduation ceremony tonight. His summer plan is to work a couple of days a week at the senior center where his grandma works, and to study for his driving permit. Adam has plans to go to summer school.
Terry has had two job interviews for office work part time in a local optometrist's office. She won't know if she will be offered the job for a couple of weeks.

Let the summer begin!

Mild Chemotherapy Problems

Since Steve's gamma knife procedure, he's been doing very well. He did not miss any work. He has had no significant headaches or visual deficits or trouble thinking or driving. All in all, it was a much easier procedure than any conventional surgery.The only problem is Terry says they are experiencing a bit of an emotional roller coaster knowing the the tumor is still there and knowing they have to be patient for it to be gone. The results now aren't as clear cut Steve's original surgical procedure when, immediately afterwards, they knew the whole visible tumor was gone and they could relax about it's existence.


Steve is having some trouble from his chemotherapy. He learned from his visit with Dr. Hu last week that his blood platelets were too low. It is not unexpected because the chemotherapy causes it and Steve's chemo is at the highest dose it's ever been. Dr. Hu wanted Steve to wait before taking his next round of chemo. He needs to get his platelet level above 100,000 before he can continue. For those that know about blood lab values, here are Steve's numbers, first from a couple of weeks ago, before the chemo really hit his system, then the low week one:

4/18/14 WBC 4.8 RBC 4.9 hemoglobin 15.8, hematocrit 44.9 platelets, 108,000 (pretty low), creatinine 1.2 (highish, but not as bad as it used to be), BUN 22 (high)
4/25/14 WBC 5.0, RBC 4.74, hemoglobin 15.3, hematocrit 44.2, platelets 90,000, (too Low) , creatinine 1.2, BUN 17.
So, Dr. Hu scheduled more frequent blood tests while they wait for Steve's platelets to rise. Steve gave blood again on Wednesday night, after work 4/30/14 and his platelets improved to 97,000. Still too low to start chemotherapy, so Steve gets to give blood again on Monday. By the way, he has no symptoms from the low platelets, but he could (from the Mayo clinic website):

If for any reason your blood platelet count falls below normal, the condition is called thrombocytopenia. Normally, you have anywhere from 150,000 to 450,000 platelets per microliter of circulating blood. Because each platelet lives only about 10 days, your body continually renews your platelet supply by producing new platelets in your bone marrow.

Dangerous internal bleeding can occur when your platelet count falls below 10,000 platelets per microliter. Though rare, severe thrombocytopenia can cause bleeding into the brain or intestines, which can be fatal.

So, we wait for Steve's body to make new platelets so he can resume chemotherapy to kill cancer cells in his head.

In the meantime, they are making plans for their summer family vacation. They hope to go to DisneyWorld :) Terry's temporary job was supposed to end after 8 weeks on Friday, but the company has asked her to stay an extra two weeks. She feels very busy working and taking care of the family.

Steve's a BleederHead

Steve says the gamma knife was very anti-climatic. There was no sound, no visuals. Totally painless. All he did was lie there until they let him out. They repositioned him once.

Afterwards, shortly after he returned to our prep room, they went to remove his halo. We were sent out of the room because most families don't do well seeing blood. However, Steve is a bit special. The nurse told us, as they removed one of the screws, blood spurt across the room. Steve said they got serious very quickly. By the time we saw him, he had this gorgeous compression bandage on his head. He had to wait for an hour before they let him leave. We were finished at 1:15, a little earlier than expected. Steve took 1 Keppra pill, for seizure prevention, 1 steroid, to help with swelling and then Tylenol for headache. 

Then we went out for lunch :)

At Bob's Big Boy. Steve still has his appetite. It's funny nobody looked twice at this man walking around with a bandage on his head.

Hi everyone!

More Photos: Entering the Gamma Knife Machine

This is what's happening now. It's 11:30 am and Steve is lying down on this machine. We are waiting for him to finish.

Steve with Dr. Hakimian and the PhD gamma knife technician looking at his set up.

Steve will lie down here. The procedure will take 45-50 minutes. There is music playing and they were discussing what  concerts they have seen.

Look at the size holes in the center of each green circle. This metal head piece was selected for Steve.

This head piece with red circles has larger holes and is used to deliver a different amount of radiation to other patients.

Part of the computer area where the doctor sits just outside the gamma knife  room. We can hear Steve talking and see two monitors showing the machine and Steve.

Today is Gamma Knife Day

I traveled down to Southern California to spend the day with Steve and Terry for Steve's Gamma Knife procedure. We left the house about 5:30 am and traveled down to Cedars-Sinai radiation center. We are  in the process of it right now. There is a lot of waiting time while the doctor's do their preparations. We just had breakfast. Steve had to wait until after this MRI to eat and it was hard to eat with the halo frame blocking his mouth.
These pictures were taken with PhotoBooth from my laptop. It looks like it reverses images so I hope you can decipher what's what.

This really says Cedars-Sinai Medical Center

Lesley and Terry in the waiting room while Steve has his halo attached.

Cool looking science fiction helmet. This was placed over the metal halo frame. They then used the black measurer and placed it in each hole along this plastic helmet and called out the distance to his scalp.

Here's a picture of the back of Steve's head and a bad picture of his nice nurse. The beverage area is right outside our door.

Screw sizes and Iodine swab used when the halo was placed.

Other pieces used by the doctor to measure where to place the halo. First, they used a topical anesthetic at 4 locations around Steve's head, then swabbed each area with iodine, then they injected local anesthetic at each screw site.

Isn't he handsome? Kind of like Iron Man or a Transformer or a Cyborg :)

Side Effects of Chemotherapy

Steve had to miss work today because of nausea and vomiting and an upset stomach. Terry had to go to work and both boys were at school so Steve was home alone part of the day. Terry brought him stomach medicine at lunch time and by dinnertime he was a bit better. He was able to keep some little food down. We hope he'll be better tomorrow.  It must be the higher dose of chemotherapy since this hit him harder than previous chemotherapy.

Poor boy :(

Planning for the Gamma Knife Procedure

Today Steve and Terry had appointments to prepare for the next step in dealing with this new tumor.

First, they met with Dr. Patil who was the neurosurgeon who removed Steve's big tumor just over two years ago. He coordinates Steve's care at Cedars-Sinai. He will be the one this time to place the halo on Steve's head with screws to the skull which prevents Steve's head from moving for the precision work of the radiation beams.

Then they met with the radiation oncologist, Dr. Hakimian.  They had met him before when Steve had radiation therapy and he directed Steve's previous radiation treatment, coordinating with the closer facility to home. This time, radiation will only last one session so it will occur at the Cedars facility. Dr. Hakimian had a Resident, Dr. Resnick who talked to them about what to expect.  He also said he had to look at Steve's MRI several times to find the tumor since it is so tiny. (Yay! tiny!). Steve's neurological exam came out perfectly fine. He has no deficits from this tumor. He doesn't have any vision problems and drives and reads the same as always.

 After the appointments, they felt better about the future. Every doctor was optimistic. They felt reassured by how often they heard "very small" or "tiny" or the gamma knife "should do the job" to stop the tumor. They liked their doctors and staff and they said the day was as pleasant as it could have been.

The plan will go something like this:

Prior to the procedure, Steve will start taking steroids to control swelling.

It will probably be on April 11th, a Friday, pending pre-authorization from the insurance company.

They will go to Cedars at 6:30 am and plan to stay until 2:00 pm.

First, Dr. Patil will attach the halo.

Then, Steve will be taken for an MRI with contrast and they will map the brain and make the final decisions on the radiation settings.

Steve will receive radiation from 201 sources (where did that number come from?) targeting the tumor site in the splenium. The gamma knife procedure will take between 15 minutes to 2 hours, but will likely  be on the shorter side since this new tumor is so small. The total radiation dose is expected to be larger than he received last time.

They remove the halo and Steve can go home.

Probable side effects are only headache lasting several days and that is from the pressure of the halo, not the actual radiation dose. There is a 5% chance of necrosis but steroids help prevent that (I'm not clear here about what is necrosing. Necrosis is a fancy word for dead tissue and I thought the tumor is supposed to necrose or die. Maybe this 5% chance is for surrounding healthy tissue dying? I guess we'll find out later if it becomes a problem.)  He is planning to be back at work on Monday.

In the meantime, tonight Steve takes his last of 5 chemotherapy pills for this round. So far, he is not feeling sick. Terry says his mood is good and all is as well as can be expected. The worst part is dealing with the insurance company and the pharmacy. Last Friday, Terry spent hours on the phone getting Steve's chemo pills shipped overnight. The company was going to take 5-8 days to process the order before shipping them. Ugh! Terry's really good at dealing with that. Tomorrow she plans to call the insurance company to expedite the pre-authrization process for the gamma knife procedure.  Way to go, Terry!

Where is this new Tumor?

Terry called me this morning to tell me where this new tumor is located. She had called me Friday from her cell phone while I was at work and I got it wrong. It's not the stelium, it's the splenium! You know where that is, right? It's the back section of the corpus callosum, and it does look like a butterfly. Steve's small, 7 mm, tumor is located on the left lobe of the splenium, significantly far away from the first tumor. Steve's first, big tumor, was lower in the left parietal lobe near the speech area of the brain. This new one is up and to the right from there. What does a splenium do? What harm can it do to Steve? I've been trying to sort that out. As nearly as I can tell:

The diverse structural properties of the splenial fibers across brain areas suggest that they are involved in a variety of functions, while there are considerable variations between subjects, it implies a contribution of the splenium to plastic changes in the course of human development.  One such function is figure-ground segregation, which refers to the ability of the visual system to segment images of the external world into objects and background. 

Another source says, if you have a stroke which takes out the Whole splenium (a much bigger area than would affect Steve):
The resulting deficit will be pure alexia - i.e., the patient can write but cannot read (even what they have just written). Isn't that a crazy thought?

Last night, Steve took an anti-nausea pill 30 minutes before his 350mg Temodar chemotherapy pill, along with medicine for constipation prevention. So far he is feeling fine this morning. If we remember back to his prior experience with chemotherapy, usually the 3rd week was the worst out of every cycle when he had the most fatigue or nausea. We anticipate that will be the case this time, too.

Their dinner last night was wonderful and they said it was really great to see their friends.

Tumor Recurrence

2014 started off well. Steve wasn't on any unusual medication. He went to work. He hung out with his wife and kids and worked around the house. He had an MRI at the end of January which was uneventful and had his routine blood work and doctor's appointments. His latest MRI was done yesterday, as usual every other month, followed by an appointment with his oncologist, Dr. Hu.

The news we feared was delivered by Dr. Hu. Steve has a recurrence of his glioblastoma tumor. It is 7 millimeters in diameter and located somewhere deep in the brain. Terry said she had the doctor spell the location and told me the left stelium. Unfortunately, I can't find out where that is. Terry described it as, if you picture a butterfly, the tumor is located where the spine of the butterfly would be. So, maybe that makes it somewhere along the corpus callosum? near the ventricles? I'm not sure. Anyway, there will be no surgery on this tumor. The plan is to radiate it with what is called a gamma knife.

From Wikipedia:
 A Gamma Knife typically contains 201 cobalt-60 sources of approximately 30 curies (1.1 TBq), each placed in a circular array in a heavily shielded assembly. The device aims gamma radiation through a target point in the patient's brain. The patient wears a specialized helmet that is surgically fixed to the skull, so that the brain tumor remains stationary at the target point of the gamma rays. An ablative dose of radiation is thereby sent through the tumor in one treatment session, while surrounding brain tissues are relatively spared. The risks of gamma knife radiosurgery treatment are very low,^[29] and complications are related to the condition being treated.

The Gamma Knife (also known as the Leksell Gamma Knife) 

From the Cedars-Sinai website:  

Radiation distorts the DNA in cancer cells. The cells then lose their ability to reproduce. Conventional radiotherapy usually involves the delivery of large volumes of radiation, which may affect normal brain tissue as well as cancer tissue. Gamma Knife technology allows radiation to only touch very small tumors or lesions deep within the brain, leaving healthy brain cells alone. This treatment is safe, accurate and effective. There is no “knife” in Gamma Knife: because no incisions are made, it avoids the risks and complications associated with traditional surgery. The treatment is performed in one day and usually does not require an overnight stay in the hospital.

Steve is awaiting the date of his appointment to have this gamma knife radiation procedure. They expect it within the next week or two. In the meantime, Dr. Hu put Steve back on chemotherapy. Tonight he starts Temodar again, for the first time in five months. The dose will be higher, 350 mg, 5 days on, 23 days off, the same as before. They made sure he had his Zofran, anti-nausea medication ready to go, as well.

Right after the bombshell news of the new tumor happened, Steve had a work friend stop by at lunchtime without knowing about the new diagnosis. The distraction was welcome. Tonight they have good friends stopping by for dinner so they are cleaning house and cooking and looking forward to the visit. They like concentrating on their friends and family and not feeling ill. 

I'll try to post current information to you on this blog when I get it. I had stopped posting last year because there wasn't anything special to say…. Steve was just living life everyday with the addition of some extra appointments which were going well. I didn't think just posting lab work was informative to most of you. Let's hope this tumor treatment goes quickly and smoothly so I run out of things to say again soon.

A Good Year

Hi everyone!
It's been a while since I posted because there wasn't much news to report to you. Since I last posted a year ago, Steve has been doing quite well.

He continued his Temodar chemotherapy monthly with minimal side effects. April was his one year anniversary of taking monthly maintenance chemotherapy. He and Terry had a discussion with Dr. Hu and decided that, since Steve was doing well and his blood work looked good that they would continue at a lower dose of Temodar, just to provide some extra insurance against a recurrence. He had monthly blood draws, doctor's appointments and MRIs, all with good news afterwards. He was doing so well that, in October, Dr. Hu said he didn't need any more chemotherapy. Dr. Hu wanted to allow his body to fully recover it's strength and let his kidneys and blood work to get fully back to normal so he would be strong enough to fight the inevitable next tumor. October 2013 was his last Temodar dose. Then, blood work and routine appointments spread out from every month to every two months.

Throughout the year, he went to work and enjoyed his family. In July, the family traveled to Mendocino for my daughter's wedding.  This is one of my favorite pictures of Steve and Terry.

This is the Ravenscroft siblings, Greg, Lisa, Lesley and Steve at Katie and Nick's wedding.

Christmas was at Steve and Terry's home. They have been redecorating and fixing up the house and it was nice to see the improvements. We had a lots of busy fun with everyone around. Steve was healthy and kept busy with all of the activity.