The FDA granted breakthrough status to a GBM treatment which we are super excited about. This is really big news for us, but we’re keeping our expectations in check:
So the scan this month came back still showing the same spot but with no growth. So the odds that it’s just radiation necrosis is higher (I know it still sounds like a bad thing but it’s better than a growing tumor). We were happy with this news, but the doc is still going to get me another MRI in a couple weeks to still see if it’s stagnant. Fingers crossed.
Regarding some of the treatment I mentioned in an earlier post, a wrench was thrown into some of what I was expecting 1) I was not approved for the UF GBM research study…I didn’t have the right protein in my blood 2) The doc suggested I hold off on using the Optune device for now since there wasn’t apparent growth. The logic the doc had was that the more I throw at GBM the less likely I’ll be approved for future studies. He feels that if the chemo is working (verified by no growth) then I might just be burning bridges using anything more at the moment. Basically he wants to have as many doors open for me as possible once the cancer begins growing again. It’s difficult because part of me wants to throw everything at preventing growth, but the strategic part of me thinks what the doc suggested is a good idea. It’s even more difficult for me because family can understandably feel different about these decisions.
The chemo round this month went backwards to how it used to feel when I was first starting on it. Hey, at least I lost some weight ^_^ — but just celebrated now feeling better by a big meal at Beque Holic last night.
In this post I’ve tried to condense how I post health updates with the goal of making these posts shorter and thus likely to get posted more often in the future.
Things went pretty well through Oct. and Nov. with the good Oct. 7 scan under my belt. October’s chemo was another ass kicker, but November’s was a little better because my doc let me know I could take more anti-nausea meds than were originally recommended. This past Monday (Dec. 7) I had my next scan, but the results are iffy. A roughly 1/2cm x 1/2cm spot showed up near the surgical site in my brain. This spot could be one of two things. It could be a lovecraftian tumor progression that GBM is known for. However, it could just be radiation necrosis, which is much preferable. My doc has me scheduled for another MRI in 4 weeks instead of the standard 8 week interval. This upcoming scan will show if there is any tumor progression. Even though we’re worried, right now we’re trying our best to not stress out so much. I also have started chemo round 5 as of yesterday.
Due to a very new approval from the FDA, I’m most likely going to be able to use a medical device called Optune, which is something I’ve wanted to do from the start. Optune is a device that GBM patients wear on their heads as much of the time as possible. The device emits an electrical field that disrupts cancer cell division without harming healthy brain tissue. A large clinical trial has shown that using Optune is as effective as chemo for GBM patients with the added benefit of no horrible side effects. When I was diagnosed with GBM, Optune was only approved for use on recurrent GBM patients. Since I didn’t have a recurrent tumor yet, I didn’t have access to the device for treatment of my GBM. And without insurance the device costs about $17,000 per month. Now that a) I may have recurrent tumor growth and b) the FDA approved Optune for new, non-recurrent GBM treatment, I will soon get to look like a character from a sci-fi flick (which I’m totally down with and excited about) on my insurance company’s dime.
Here’s the gear:
Here’s someone with it on:
This is how I’d really like to look ^_^:
I’ve also begun the enrollment process for a 3 year UF research study focusing on a drug treatment for GBM. The study will be conducted in the UF building where Alex works :). I have to have some kind of special protein in my blood to be admitted to the study, so I gave a blood sample last Monday and will find out if I can participate in the study in a week or so. I’ll post an update once I hear back from them.
Well, that wasn’t short. But hey, I got a post up! Hope you all are doing well! One thing that continues to be very important for me is finding new music. Music is something I’ve always turned to in order to feel good. Each month I try to research new musicians so I’m not stuck too long on a single act. Recently I have been bad about posting up my mixes, which you may or may not listen to. My goal is that before Christmas I will put up a hefty one that contains the mixes I’ve made for Aug., Sept., Oct., Nov., and Dec. A couple of those months had more of a theme instead of the traditional mixed bag of new finds. Hope to talk music with you guys soon.
First, I’d like to apologize for my bad and often delayed communications. If I’ve not responded to any email, returned a call or text, it usually means I’m sleeping too much and it’s nothing personal.
I could not wait to get this past week over with. On Wednesday I finally got my first MRI since I was initially brought into the ER back in May. Had things been done properly, I would have had an MRI months earlier, so thanks, UF Health, for those extra months of stress caused by not knowing if the cancer had sprung back yet. With my new doc I’ll be going in the tube for a brain scan every two months now so we can see if they need to get back into my skull to extract any unwanted creatures. So new doc = yeah! while UF Health = screw you.
So on Wednesday I was able to get my scan, which took around 45 min in the tube listening to 80’s Pandora. Safe way to always get “Take on Me.” I wish you could sing while getting your head scanned. After that was finished, we had to wait about two hours for the scans to be processed and sent to the doc. Since I was on Xanax (needles and I don’t have a good relationship), I just remember waiting and taking this picture for blog documentation.
Once we were called back I was happy to find that I lost some weight. The doc and nurse were fairly quick to come in, and we went over how chemo round 3 went. I told them that for 3 weeks out of the month I was nauseous. Round 3 was bad enough to make me start weighing quality of life vs. the benefits of the chemo. It turns out I can take more of my anti-nausea meds than my last doc said I could. Hopefully round 4, which starts this week, won’t be as bad. The heightened chemo also affected my taste buds. One benefit was that I finally stopped drinking soda, but the drawback was that even water tasted bad to me.
At the end of the appointment, he pulled up the scans, which didn’t show any new tumor growth. Heeeeyyyyyyy great news ^_^. I know these scans will not always bear good news, but I’ll sure enjoy the ones that are like this. I appreciate the support, prayers, positive love beams, and everything else you all have provided. To fit my mood and the month of October, please enjoy “Over At The Frankenstein Place.”
A little catch-up first
- While I was going through my second round of chemo, which was a doubled dose version, the nausea was stronger as well the feeling of weakness. It was still very manageable though.
- Belmont had her surgery and has since had all her stitches removed. She’s doing okay, although she’s supposed to take anti-histamines for life to help prevent the growth of mast cell tumors.
- Got a sweet hair tattoo shaver and had been working on some designs (which were pretty bad).
During the past month Alex was doing some investigating on the differences between the Davis Center where I was seeing my docs and the UF Health Cancer Center which is right down the street from it. There was no clarity to be found through the websites, and of course the doctors never discussed with us the differences and why we might want to choose one over the other. Luckily Alex works in the communications realm at UF Health, and she asked some colleagues what the differences were, since there didn’t see any public information about them. The differences were explained (a normal patient would never know), and her colleagues went as far to find a specialist outside the Davis Center that we have now started to see. I’m very thankful for that intervention, but it still highlights glaring problems with patient communications, all the way from content on their websites down to how doctors communication to you. One day we may end up moving over to Mayo Clinic in Jax…UF Health is walking on a tight rope with us at this point.
With the help from Alex’s colleagues I met with a new neuro-oncologist who specializes in the kind of cancer I have. He spent a good amount of time explaining things to me and before me asking questions he had answered them. Main points:
- He said I should think in terms of year(s) not months. This was said with a straight face and very quickly so it took a little bit to sink in. This is obviously the best news and most optimistic I’ve received from a doc.
- Apparently the 3rd round of chemo I was going to be getting was not enough for my condition. So that was caught and I’m now taking even more chemo. Yummy!
- My original docs said I’d get scanned every 6 months for tumors which I was very worried about since they said the tumor they removed looked like it had grown in just 2 months. Most hospitals that treat Glioblastoma run scans every 2 months, and the doc just stated that he’d want scans every two months.
- UF in the near future will be running some studies on Glioblastoma, but there’s not enough info to know when and if I’d even be able to apply.
So at this moment I’m on my 3rd day out of 5 for the month taking this increased chemo. I’m feeling much more nauseous this time and am feeling like eating just about one meal a day. Thinking about drinking water is even making me feel sick, which isn’t good for my GI probs. I’ve been told that the meds for nausea that I’m taking are some of the best, but if that’s so I’m unhappy it and will be exploring other alternatives. How much I’ve been sleeping has also increased while taking this stuff. I’ve been sleeping almost to 4pm on some days.
Wow, that’s a long title for this. That’s what I get for not posting recently. 1st and most importantly is a track to listen to while you’re reading (some summer synthwave). Not that it has anything to do with anything I’m writing.
Last week we were able to finally push aside the things that were keeping us from getting out of town for a bit. We went on a family beach vacation down to New Smyrna. The condo that we stayed in was dog friendly, which meant the whole family was able to come along ^_^. The only problem we had is that Volusia county doesn’t allow dogs on the beaches. You have to find a state park that allows dogs on the beach, which for us was New Smyrna Dunes. Seeing the dogs play in the water was my favorite part of vacation. Belmont got better at balancing on a boogie board. On our attempts to let her catch small waves, she was wagging. Wicket finally braved up and did some swimming around…I think he was trying to impress the other dogs on the beach.
Not too long ago, Alex noticed that Belmont had a lump on her side, and we recently had the vet look at her. It is a mast cell tumor and isn’t really anything to worry about too greatly. A few years ago she had one on her noggin, which we had surgically removed (the tumor, not her noggin). Her little mohawk remained intact. Tomorrow she goes in for surgery for this one. The doc already did blood work on her, gave her a good inspection, and said she was healthy enough for the anesthesia and surgery. I’m more nervous about the anesthesia than the surgery.
Since all this started with my health I have felt very strange about work. As soon as I got out of the hospital I was thinking about how I was slowing down things at work and how that was affecting my colleagues. I only stopped worrying after family members told me that I needed to focus on working through my health issues. I followed their advice but have continued to have a sense of guilt about leaving the people at work, many of whom came to feel like family. I was never quite sure how things were going to pan out for me, and I wasn’t sure who at work expected me to come back and who expected me not to. It all felt very strange, especially when I was on pain killers. It was nice that the company held my position open to me, but my health issues (and frankly the amount of time I may have left) led us to decide I shouldn’t return to work. I’m hoping they find a great new employee that will help them out, and wish all my friends at work the best.
So I finished my radiation and chemo about a month ago. It took a couple of weeks to recover from the wave of symptoms that hits patients after their treatment stops. I met with my medical oncologist this week to go over my blood work and to talk about the next, and ongoing, course of treatment, which is monthly chemo. For five days a month I’ll be doing double dosage, and I just started this new wave last night. My biggest concern is that the monthly chemo will have a similar wave effect and cause me to feel bad for an additional week, or two, or three. The bottom line is that I hate this chemo shit but I’d absolutely love it to work and slow down the advance of the cancer.
Pre-reading warning: This isn’t the happiest post you’ll find on this blog, but don’t worry there will be a good video at the end that should make you smile especially if you’re a Jean Claude Van Damme (JCVD for short) fan.
I finally was able to meet with a neurologist this week. Apparently I should have been going to see one since my surgery, but since I didn’t pick up their appointment call (umm I was drugged and sleeping after surgery) they didn’t bother with another call nor did one of my regular docs tell me I should be seeing one until last week. I could bitch about many scheduling and patient care issues I’ve had (been trying to focus only on the positive), but I’ll end that here for the moment.
All that being said the meeting with the neurologist was for me one of the most helpful and informative meetings with a doctor I’ve had since all this began. You think when being diagnosed with a terminal illness the docs would give you more information than just an estimate on how long you have left to live. I’ve spent the last couple months trying to figure out, and to be honest scared shitless, about what would happen to me as I got closer to death. I’ve not been scared of actually dying (a lot of other emotions about it, but not scared), but I have been scared about the cancer growing back in my brain and what it might do to me while I’m alive. Would it change my personality, would I become angry and aggressive, would I go blind, would I forget about the ones I love? The list of such questions has been growing and growing and driving me nuts.
So what I was told is that the area of the brain where that piece of shit tumor will most likely re-emerge will mainly affect my short term memory, ability to use correct words/phrases, and it will make me more tired. He said that for most people who have the tumor in a state where it can’t be surgically removed, or if the patient doesn’t want another surgery, they keep sleeping more and more, and generally pass away in their sleep. I know that sounds depressing, but for me hearing that I felt a ton of weight lifted off my shoulders. Having someone tell you you most likely won’t suffer some terrible pain from death is to me a welcome thing to hear.
Friends and family have been hoping that the cancer takes its time to come back, long enough for some kind of cure for it to come out. I’m wishful for that as well, but it’s not something I can be blindly hopeful about and not deal with what has a higher chance of actually happening. I’m not giving up, but I am preparing for best and worst case scenarios.
Okay, so here’s JCVD dancing to a good tune. Close the annoying ads.
Don’t know why I find this song fitting for this post but I do. Hope you guys can enjoy the random tunes that are showing up on the blog.
I had been looking forward to being through with all the chemo and radiation and am glad it’s all complete now. However I’ll miss the great radiation techs that I’ve seen the last M-F’s for the last six weeks. They were so fast and efficient at their jobs due to how many patients they have to treat, but that didn’t keep them from being such kind and supportive folks. I’ll miss seeing them, but I’m glad to be done.
Having sat in the waiting room all those days for radiation, I met a few people who seemed outwardly positive about their treatment, but most needing treatment were old, had a hard time moving, and a lot seemed to a hard time even talking…it was just super rough for them. One of my favorite patients who I would see sometimes before or after my appointment was an elderly man who couldn’t talk but would do a hand motion over his head showing that he really liked my mohawk as he walked past me. I always felt better after seeing him. He did that hand motion everytime I saw him. The last time I saw him we both gave each other a firm hand shake and a pat on the back.
In the Davis Center they made a bell out of a scuba tank, which each patient who finished up treatment goes out and bangs. The sonic quality of it isn’t something that would put you to sleep at night, but it’s loud enough that everyone in the waiting room of the first floor can hear it. Some days when you hear a bang people give an applause. There was one day were there was so much banging and applause, I swore it must have been a small kid having a great time getting rid of energy and being praised for it.
So after hitting the bell we headed home. Originally we were thinking about a trip to Costa Rica soon after all this ended, but the feelings of sickness got us to change our minds. We’ve still got some travel plans but I need to glide through the post chemo/radiation sickness first.
One thing about the brain surgery I had, was that they had to cut one of my jaw muscles to get in there. The way it’s healed back, I am unable to open my mouth as wide as the normal person. They did the measurements and technically I have a reduction in my mouth opening by 50%. I finally got to meet with my surgeon this past week, and he gave approval for me to start on physical therapy, lifting again, and other physical activities. Apparently my jaw muscle was so ripped I probably had a stronger one than Arnold. He asked how my muscle was so strong, and I told him that unfortunately the stress makes the most inconvenient muscle in my body get super strong. Too much teeth grinding and clinching.
I get to start my physical therapy sessions soon which will involved someone sticking their fingers all up in my mouth and causing me to take those pain killers. For now I’ve been instructed to do some stretching exercises using tongue depressors. Every two days I add another tongue depressor to increase the stretch.
The biggest disadvantage of all this is I haven’t been able to eat any subs or larger sandwiches in the past couple months. Eating a sub is now the highlight of this work for me. Jimmy Johns, I’ll be visiting you soon.
Here’s an old school tune to help with the jaw stretchin’: Whodini – Big Mouth
Before starting the radiation, the doc was telling us about all the side effects and what not. He left the room and then popped his head back in and asked if we were trying to have kids. It was apparent that most of his patients were at the age where kids were no longer discussed. He said that one should avoid trying to have kids while going through treatment because they can be deformed. We told him we were not planning on having children, even before all this cancer stuff hit the fan. I then told Alex we were going to avoid having Godzilla babies.
On the first day of radiation, when they had me strapped in and I closed my eyes, I could hear the machine gear up getting reading to shoot its beam, and when the beam started shooting I pictured a small Godzilla in the machine doing his signature radioactive attack. It was a silly thought, but I felt more comfortable in the machine thinking that Godzilla was in there trying to harness his radioactive power to try and kill the cancer cells I have.
After that day of treatment I did an instant order of five Godzilla shirts in the waiting room, and have since ordered a few more. Each day I go in for treatment I wear a Godzilla shirt. Choosing a mascot or spirit animal for myself seemed silly and fun, and its been making things a little easier and fun for myself. Alex knowing that I’ve been feeling the need for support from family, she arranged for a viewing of the latest Godzilla film which is happening this weekend. I felt like I needed some family rallying, and am glad that most of my family will be there for me watching a silly movie for support.