Saturday, November 1, 2014

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:  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.

Saturday, October 25, 2014

Novocure TTF Device

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

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" :)

Sunday, October 12, 2014

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."

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.

Sunday, September 7, 2014

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 :)

A talk about nutrition:

And another link they liked about someone named Chad at Chad's Blog is

Thursday, August 21, 2014

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.

Saturday, August 16, 2014

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.

Monday, August 11, 2014

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!