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So glad to hear your good news, Nannypea!Nannypea posted:Bob Vance: How you doing? Hang in there and we'll be back to normal before we know it. Had my MRI yesterday, things look to be for the most part stable or improving. The radiologist noted that there was some enhancement in the back of my right lateral ventricle, but my oncologist seems to think that that was there in the previous scan as well. So while I'm not quite out of the woods yet, things seem like they're okay for now.   UPDATE Multiple radiologists confirmed that the enhancement was in previous scans, so things are headed in the right direction! Bob Vance fucked around with this message at 05:42 on Feb 14, 2009 |
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Feb 13, 2009 00:02
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Bob Vance posted:Had my MRI yesterday, things look to be for the most part stable or improving. The radiologist noted that there was some enhancement in the back of my right lateral ventricle, but my oncologist seems to think that that was there in the previous scan as well. Bob Vance: We have to take any news that isn't bad news as good news; the stable or improving is definitely not bad news! You may not be out of the woods yet but at least you can see the clearing past the trees. BEHOLD: MY CAPE posted:I hate to be a nosy, curious student but why were you getting an abdominal MRI to see the pancreatic spot in the first place? Do you have other concurrent health problems besides your brain tumor? Updates for me: I had yet another seizure yesterday. Fortunately I already had an appointment with the neurologist today. They determined I was having break through seizures and that we needed to change medications. For the moment I'm taking Keppra, Dilantin and Carbatrol. I'm going to be slowing increasing the dosage of the Carbatrol and hopefully reducing the Dilantin. Maybe this will get the pesky little buggers under control. To make the day beautiful my husband woke me up with the stomach flu/bug. Had to make a last minute call to my Dad to have him drive me to my appointment. On 5 minutes notice! He was a trooper and we got there on a few minutes late. Hubby is sick, sick. We're dosing him with heavy amounts of Imodium AD and an Anti-nausea drug. Let's hope I don't get it.
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Feb 14, 2009 02:49
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Bob Vance posted:
How the hell did I miss this? That is awesome! A party is in order. I'm ordering the first rounds of drinks - on me. Let me know what you want and where to send them.
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Feb 18, 2009 03:09
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HAIR I'm growing hair!!! Just a few patches growing in odd spaces on my "bald" spot. I didn't realize I even cared about hair but I guess I am vain. Wonder if that song is about me? Just finished up my 2nd full course of Temodar. It wasn't that bad. Didn't want to eat and tired all the frak'n time. The new seizure meds seem to be working as well. Next MRI is scheduled for March 11. Let's keep our fingers crossed it's all clear.
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Feb 26, 2009 19:50
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I'm not sure where to go right now, so this thread seems as good as any. In November 2007, my partner began having severe headaches. He soldiered on through the holidays, headaches getting worse, but finally went for an x-ray in early January 2008. Of course, it was a brain tumor: stage 3 GBM. It was removed surgically and he went on Temodar combined with radiation. His last round of chemo was this January. He had his regularly-scheduled MRI earlier this week, where they found some "enhancement" or "spots" in the place where the tumor was. Today, his doctors basically told him that the cancer is back, and that there appears to be a tiny new tumor in a different area, behind his right eye. I'm still in a little bit of shock, as there was nothing on previous MRIs, the last in November. He's going in for a PET scan next week, we assume in preparation for a gamma knife procedure. Anyway, I'm just hoping for a small miracle and reading about other people's so-far-successful battles is good.
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Feb 27, 2009 18:17
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BuckT.Trend posted:I'm not sure where to go right now, so this thread seems as good as any. Unfortunately, GBM is more aggressive than what is being discussed in this thread. If you were surprised by this recurrence then maybe the situation was not described to you very well. The median survival period is 1 year. Having been through this with a family member, the best advice I can give you is to spend as much time with him/her as you can, and to try to prepare yourself the best you can.
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Feb 28, 2009 01:28
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BuckT.Trend posted:I'm not sure where to go right now, so this thread seems as good as any. So sorry to hear about this...  See if you can get him in on an Avastin + CPT-11 trial. It's a bit rougher than Temodar as far as chemo goes (he would need to go in for infusions every other week), but it has worked thus far for me, basically by starving the tumor of the blood that it needs.
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Feb 28, 2009 06:36
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squeakygeek posted:Unfortunately, GBM is more aggressive than what is being discussed in this thread. If you were surprised by this recurrence then maybe the situation was not described to you very well. The median survival period is 1 year. Having been through this with a family member, the best advice I can give you is to spend as much time with him/her as you can, and to try to prepare yourself the best you can. Yeah, the recurrence rate for GBM in even patients with the best prognosis is extremely high and the 5 year survival rate is probably the lowest out of any primary cancer except maybe small cell carcinoma. Obviously, there are miracle cases out there, but don't get your hopes up too high.
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Feb 28, 2009 13:17
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BuckT.Trend posted:I'm not sure where to go right now, so this thread seems as good as any. Miracles happen every day. I agree with the prior statements, GBM is difficult. I have a friend of a friend that has been successfully fighting breast cancer that has moved to her brain. She has been on the treatment I think Bob Vance was referring to. I have her contact information and would be willing to share your contact info with her. You can read more about her battle here: http://strategy.ucsf.edu/stories/aggressive-treatment-fighting-spirit-help-ucsf-cancer-patient-beat-the-odds/ All of us must accept that we will all die. Unless things radically change, those of us with brain tumors and cancers will be quicker than others. My parents have been talking with another family who's daughter died young of brain tumor. I can only suggest you find someone or a group to talk with. Find out all you can and do everything you can with your husband.  On another note; maybe we're not the best people to ask. Everyone seems to be jaded and consigned to their destiny. Fight the good fight, that's all we can do. Life, Love and Laughter are the best things you can give him. It might sound cheezy but sitting on his side of the fence, it's the best gifts.
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Feb 28, 2009 19:23
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I asked this before but I'm still curious, how is everyone doing when it comes to insurance companies and paying for the chemotherapy treatments? What about other prescription medications or procedures? All you guys keep us updated, I check this thread regularly. Don't give up hope.
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Mar 1, 2009 05:37
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Basic treatments are typically covered, like my surgery and radiation, and then the followup visits and MRIs. Some plans will not pay for followup scans which is insanity. Most plans start causing problems when you need to go beyond the basic treatments into either experimental or off-label stuff. There can also be issues with peripheral things like pain control, orthopedic stuff, etc. Having to go to a specialist can mean going out of your network, especially for HMO plans, and if you have a gatekeeper coordinating with your specialist can be a bear. Actually a real bear would be easier to work with than most HMOs.
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Mar 1, 2009 05:57
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Thankfully, I'm still covered under my parent's plan (I'm 20 and a student). Thank goodness for that, or I would be royally screwed.
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Mar 1, 2009 08:52
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I'm still covered under my employer's insurance plan. I'm on Short Term Disability and will be transitioning to Long Term next month. Even though I have insurance it's still expensive. My portion of the radiation cost about $1200 by itself. I've setup a payment plan for my hospital bill. Hopefully I'll stay insured or I'll just be screwed. *Have to agree with the prior statements, my PPO is a PIA. My insurance would cover any radiation/chemo inside the doctors office but not any medication in a Pill form. That means that Medco had to approve the request for Temodar and they denied it. After a lot of hassle, time on the phone and paperwork and a major fight it was finally approved. Nannypea fucked around with this message at 04:35 on Mar 5, 2009 |
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Mar 5, 2009 00:02
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Nannypea posted:I'm still covered under my employer's insurance plan. I'm on Short Term Disability and will be transitioning to Long Term next month. Even though I have insurance it's still expensive. My portion of the radiation cost about $1200 by itself. I've setup a payment plan for my hospital bill. Hopefully I'll stay insured or I'll just be screwed. I've heard that people have been really successful in negotiating down their bills with the hospital. A woman I know had surgery and managed to get her bill cut in half. Did you get any kind of deal?
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Mar 6, 2009 00:35
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Congratulations on your fight dudes!!
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Mar 8, 2009 03:37
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I had my first MRI after radiation yesterday afternoon. I'm hoping everything is clear, I'll get the results next week. Added another seizure drug to the mix: Carbatrol because we could not get my Dilantin levels level. OK serious. Do we have a lawyer in the house? I work for Nortel. They went into Bankruptcy protection earlier this year and are now saying they are just going to sell everything off. How would this affect me?!? I'm on Short Term Disability so I believe Nortel still owns me. Anybody have any ideas? Plate or platter posted:I've heard that people have been really successful in negotiating down their bills with the hospital. A woman I know had surgery and managed to get her bill cut in half. Did you get any kind of deal? They automatically knocked off a lot when they sent me the original bill. Had I paid the entire bill at that time they would have taken off another 15% I don't have that kind of cash so I went with paying it off monthly but I don't even think they charge interest.
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Mar 12, 2009 13:42
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Did your memory/concentration problems start as a result of treatment or the cancer? Did you have them before the seizure in your car? I've been having really horrible memory and concentration issues in addition to a severe sense of dissociation - I will read an entire paragraph and realize that I didn't take away a single word from it, in conversations I'll just blank out, I will forget things I was talking about a few minutes ago(I have pages and pages of notes that I need to take nowadays to keep track of everything going on). I thought I was just getting old(21) and this is what happens when you age after talking to a few friends, but this thread's making me really nervous.
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Mar 13, 2009 05:34
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Ashgromnies, hows your life going as far as stress? I have a lot of the same problems as you do, and its all pretty much due to stress and depression. It can have a very huge impact on your health and memory. If I am feeling good emotionally, everything is totally fine as far as my memory goes, but if i'm having an off day, its like I can't remember anything for more than a minute and its very frustrating. Its something that is worth checking out.
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Mar 13, 2009 05:42
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Nannypea posted:I had my first MRI after radiation yesterday afternoon. I'm hoping everything is clear, I'll get the results next week. Wow, that is surprising and appalling...I'm usually seen within one or two days. If you go to the hospital "library", they should be able to burn you a disc of it, including the program you need to read it. It can be daunting to learn the software, but it's pretty cool to be look at your brain on your own time.
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Mar 13, 2009 06:58
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Great News! MRI results in and they are good. No additional tumors and the rest is healing as expected. I'll have my next MRI in 3 months. In the mean time I'll continue with the monthly chemo treatments. Right now we're still trying to get my seizure meds right so there will be no more seizures!ashgromnies posted:Did your memory/concentration problems start as a result of treatment or the cancer? Did you have them before the seizure in your car? I had some concentration issues but nothing that could not be attributed to stress. I was working lots of hours (about 60 hrs a week) and under the constant threat of being laid off. Stress can have an amazing effect on your body. If you are very worried, talk to your PCP and see if you need to see a neurologist. Bob Vance posted:Wow, that is surprising and appalling...I'm usually seen within one or two days. I agree totally! I spoke with my Oncologist today and she agreed that next time it would be no more than 3 days between the MRI and my follow up. If I didn't live an hour and half away I'd already gotten a copy before today. Bob Vance How you doing? Chemo still kicking your rear end? Anything exciting going on?
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Mar 18, 2009 03:16
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Nannypea posted:Bob Vance I'm doing pretty well...had chemo today so the crappy day will likely be tomorrow. I will have an MRI near the end of April...fingers crossed! My birthday is this weekend (21!  ) so hopefully I'll be feeling well by then. I applied to spend a week at a kayaking camp for young adults this summer, I think that will be a nice experience.
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Mar 18, 2009 03:53
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Good news about the clean scans! Unfortunately on Saturday I think I found a recurrence in my drat leg. It looks so much like the original I can't believe it's anything else. Tomorrow morning I'm scheduled for an MRI and a visit with my doc but I'm convinced that I'm screwed. P.S. Have a good birthday, my man. And wear your life jacket when you go kayaking this summer.  P.P.S. HA HA screw you cancer. No recurrence. I read the MRI myself and was thinking "where the hell is the tumor?" because I definitely couldn't see it, then the doc came in and confirmed it. It will be back, but not today. 
Dick Trauma fucked around with this message at 19:40 on Mar 18, 2009 |
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Mar 18, 2009 04:51
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Woo Hoo! Looks like everyone is getting an all clear!!! Doing a little happy dance here  Go Bob Vance! Do something crazy for your Birthday. Drink one of everything and have one for all of us. The kayaking looks like loads of fun. But do remember the life jacket and a helmet. They can come in really handy. Don't know about you but since I'm home and can't drive having something to look forward to really helps. We've had a trip to Alaska planned for ever and I cannot wait for it to get here > first week in June. The kayaking sounds like a great trip, lots of fun and a chance to hang with folks like "us." I get really tired of having to watch what I say around these so called "normal" folks. And your right Dick Trauma screw cancer! No Recurrence is 2 of the most beautiful words in the world.
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Mar 18, 2009 21:07
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Ok, I'm on month 3 of 12 treatments of Temodar. Does it get better or worse as you go? Right now it's kicking my rear end.
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Mar 25, 2009 01:20
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Happy Birthday, Bob Vance
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Mar 26, 2009 22:13
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Happy Birthday Bob Vance! Hope you had an excellent birthday. We much hear stories of how the 21st went. How's everyone doing? I'm starting the fight for my Long Term Disability. I've sent off all the forms to the Insurance Company and I've scheduled an appointment with SS Disability for next week. Anyone done this yet? Edit: I ran across this while reading the news: Horrible words for Eleanor Mondale: 'The cancer is back' http://www.startribune.com/entertainment/tv/42283852.html?elr=KArksi8cyaiUjc7YUiD3aPc:_Yyc:aUU Nannypea fucked around with this message at 01:06 on Apr 3, 2009 |
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Apr 2, 2009 21:28
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I've been pretty stoked since I found out I was clear. I'm the kind that rarely celebrates anything so I keep reminding myself of how awful I felt when I thought it was back, and how good I felt when I learned it wasn't. I'd like to have that feeling more often.
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Apr 2, 2009 22:23
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The birthday was great, I had a good time with some friends that I hadn't seen in a while, which is always nice. I too am starting to apply for disability, in case my parents insurance pulls the "your son isn't in school and isn't working, so we can drop coverage" card. Another round of chemo finished--MRI on the 13th. Had kind of a break-down this past Tuesday when I got home from a road trip to see my college friends in Nashville...I've gotten rather fed up with the monotony of my schedule. I may see about getting a job some time soon. Anything to break up the monotony.
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Apr 5, 2009 07:35
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Bob Vance posted:Anything to break up the monotony. It seems with my 5/23 cycle I only have the monotony 1 week a month. The week before I start the chemo again. But yes, I understand totally. I think I've seen episode of Law & Order which I didn't think was possible. The POLLEN. It's everywhere, everything is yellow. I hope it's the pollen that's causing my headaches. You guys having problems too?
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Apr 6, 2009 21:14
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I rode my bike last weekend and I was heading into the wind up a residential street. The huge trees were releasing gusts of pollen. I could feel my head swelling shut before I got home. Someone should tell those trees they are in a city and to go easy on the pollen clouds. 
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Apr 6, 2009 21:30
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Dick Trauma posted:I rode my bike last weekend and I was heading into the wind up a residential street. The huge trees were releasing gusts of pollen. I could feel my head swelling shut before I got home. I am convinced that the trees are trying to drive the annoying upright monkeys away.
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Apr 7, 2009 11:04
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I hope everyone else is doing great! I have just finished puking up my guts. I hope the Temodar stayed down long enough to be effective (about 2 hrs). I've already emailed my Dr. I had hoped that my body would build up it's strength and the Temodar would get easier to take. Oh hell no, I was wrong.
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Apr 21, 2009 06:52
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Bah. Puking has pretty much nothing to recommend it. Are you on any antinausea stuff yet?
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Apr 21, 2009 14:18
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Dick Trauma posted:Bah. Puking has pretty much nothing to recommend it. Are you on any antinausea stuff yet? Yeppers. On Kytril 1mg twice daily and phenergan as needed. Seems I'm not doing the phenergan as much as needed. Let's see how it goes tonight. Oh yeah! I had another seizure today too. Right now I'm on 1500mg Keppra twice daily, 400mg Carbatrol twice daily and 400mg Dilantan once at night (down from 600mg). We've been reducing the amount of dilantin trying to get me just on Keppra and Carbatrol. Doesn't seem like it's working. Ok, I'm going to stop bitching now and figure out when I can take another phenergen. Minor Edit: Dick Trauma your name makes me laugh every time I read it; then I see your avatar and it scares the crap out of me. Nannypea fucked around with this message at 03:41 on Apr 22, 2009 |
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Apr 22, 2009 03:38
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You can thank Shmorky for that horror. My favorite cartoon of his featured something similar.
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Apr 22, 2009 04:26
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Yay I got a job working at a mini-golf/go-carts/bumper-boats/video arcade/laser tag/restaurant establishment! Also my MRI from a few weeks ago was looking good (though they didn't give many details). I'll think that means "it's stable"... V VIf your anti-nausea med isn't working see if they can get you on a different one. I'm on Zofran and Emend on the day of chemo and 2 days after. I imagine they could do something similar for you?
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Apr 26, 2009 09:20
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Nannypea posted:Don't know about you but since I'm home and can't drive having something to look forward to really helps. We've had a trip to Alaska planned for ever and I cannot wait for it to get here > first week in June. Are you by chance stopping in Juneau? I might be able to show you around
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May 3, 2009 09:17
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Original.Evil posted:A girl I knew had one ~10 years of age and remembered nothing, I don't think many people do. She also lost a lot of her long-term memories from before the seizure but still developed new long term memories, i.e. now she's 18 and remembers being 13 but doesn't remember things from 9 years old very well. I had 7 grand mals in high school, and I remember each of them in detail. For me, all but one happened at night. I'd wake up with my eyelids twitching, then my head would twist backward and I'd lose my sight. The only things I could feel were convulsing and severe pain in my neck from my head turning back so far. After about an eternity, I'd finally black out. Only once did my family witness this, every other time I was alone. I couldn't sleep for a month out of fear of waking up into another seizure. Edit: Finished reading the thread. Seriously, gently caress cancer. Just gently caress it. TheAmbassador fucked around with this message at 12:08 on May 6, 2009 |
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May 6, 2009 11:55
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Advent Horizon posted:Are you by chance stopping in Juneau? I might be able to show you around As a matter of fact, Juneau is our first stop. We're thinking of doing a Helicopter tour. I need all the advice I can get! We have not scheduled anything and are being very fluid as to what we doing to see how I'm feeling/what I can do. TheAmbassador posted:Edit: Finished reading the thread. Seriously, gently caress cancer. Just gently caress it. I agree - gently caress IT! I'm spazzing because the next MRI is right after we get back from Alaska. This one should show if the radiation/chemo is working or not. The bastard is still there but I'm fighting it tooth and nail. Hopefully it's retreating.
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May 8, 2009 03:01
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What's up with everyone? Bob Vance what's going on with the job and the camp this summer? Dick Trauma anything with you? As for me, I'm heading off to Alaska in a couple weeks. Just realizing how lovely I've felt during chemo. I've been off the cycle for a couple weeks and I'm starting to feel like doing SOMETHING. My speech is getting better and I can find words easier. Still having issues with nausea and upset stomach; trying to figure out how to control them on the cruise. Can't be wandering around an Iceberg and have to go to the bathroom right now. As for the seizures, I've not had one in a couple weeks. I'm bummed because I reread my last MRI report and figured out that it looked exactly like it did right after surgery. Weeks of radiation and months of chemo with no change. That's depressing. My next one is scheduled right after we get back. To top that off, I got an email from a friend with GBM and he's going down hill fast. drat I need to get out and have some fun. Seems like it's easier to deal with when you feel like poo poo and don't realize what is really going on. My mind has been mush for the past 7 months and I'm just realizing it. Worse is that I'm going to go right back to mush when I get back. Reality sucks! Bright side is that my LTD was approved and then approved through 2011 because they determined I couldn't do my job or any other job. It's good to know I have the benefit available but drat give a girl a little hope.
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May 19, 2009 04:10
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