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!
Showing posts with label mapping. Show all posts
Showing posts with label mapping. Show all posts
Monday, August 11, 2014
Sunday, August 3, 2014
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.
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.
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