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Bob Vance posted:1 Month Follow-Up MRI was today: poo poo, sorry to hear this Bob Vance. Is there any plan to put an Ommaya reservoir (port giving access to the cerebrospinal fluid) to give your chemo directly to the central nervous system? Good luck, buddy. 
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Dec 10, 2008 04:12
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Oh man, that's terrible. I'll say a prayer for you and your brain tumor buddy Nannypea 
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Dec 10, 2008 04:37
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For now the plan is to start on Avastin (inhibits tumor growth by blocking the formation of new blood vessels ) and CPT-11 (a chemotherapy agent). As far as I know there is no plan for a second port (I currently have one in my chest from when I was treated for the first half of this year). P.S. Great choice of avatar--hopefully I'll get to see the AD movie. 
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Dec 10, 2008 05:19
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Man, Bob Vance. I've been thinking about you and hoping everything was going great. You're my "see, it can all work out great" buddy. And you still ARE! You're right though, that SUX. Please keep us updated on the Spinal MRI and how the chemo is going. I hate you're not going back to school and getting back to normal. I understand that normal is a big deal now. I'll keep you in my thoughts and prayers.
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Dec 11, 2008 01:33
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Hang in there Bob Vance, you too Nannypea. Your goon family loves you very much. 
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Dec 12, 2008 00:31
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Bob Vance posted:1 Month Follow-Up MRI was today: Oh man, I'm so sorry. That sucks big time. The powers of chemo will fix it!! My thoughts are with you
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Dec 14, 2008 00:02
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The good news is that the spinal MRI showed that I have no tumor along my spine. Bad news is that my chemo still begins next week. Apparently it takes about 3 hours to get the infusion done for this particular drug cocktail. Thank goodness for Netflix's Watch Instantly and WiFi availability at the day hospital. 
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Dec 14, 2008 04:23
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Bob Vance posted:The good news is that the spinal MRI showed that I have no tumor along my spine. It's stuff like this whole thing that makes me almost want to have some sort of MRI just for peace of mine so that I don't end up letting something go on unnoticed for so long that it gets even worse. Good luck both of you!
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Dec 19, 2008 21:37
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Bob Vance > Any updates? How are you doing? Did you have a good Holiday? How's the Chemo going? I finished up Radiation and this round of Chemo. I'm going to be doing a few more rounds starting in January. I did get my radiation mask but cannot decide what to do with it. My holiday was interesting. I had a small seizure on Christmas Eve and have not recovered completely. It's like I reverted back a month or so. We're now tweaking my steroids and dilantin meds. Hopefully we'll get everything straight.
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Dec 31, 2008 02:37
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Solaron posted:It's stuff like this whole thing that makes me almost want to have some sort of MRI just for peace of mine so that I don't end up letting something go on unnoticed for so long that it gets even worse. The thing about these cancers is that they generally develop so rapidly that you'd have a clean scan a month or two before you suddenly had a large and invasive tumor, so there's really no point in screening for them with imaging.
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Dec 31, 2008 04:17
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Nannypea posted:I did get my radiation mask but cannot decide what to do with it. Could it be turned into a really cool lamp? Could a football helmet and pads be put on it? Or have it become the nucleus of some kind of Halloween costume?
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Dec 31, 2008 05:40
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Nannypea posted:My holiday was interesting. I had a small seizure on Christmas Eve and have not recovered completely. It's like I reverted back a month or so. We're now tweaking my steroids and dilantin meds. Hopefully we'll get everything straight. What does it feel like to have a seizure, if you don't mind my asking?
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Dec 31, 2008 07:41
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Big City Drinkin posted:What does it feel like to have a seizure, if you don't mind my asking? 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. Also, Nannypea: are they grand mal seizures, or (forgive my lack of medical terminology) the sort where you sort of space out and possibly fall over?
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Dec 31, 2008 08:05
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I'm doing pretty good overall. I spent this Sunday and Monday night in the hospital after what was either a seizure or a fainting spell, that gave me lasting nausea and vomiting. They couldn't ID what it was so I'll be going in for an sleep-deprived seizure study next Wednesday. Fortunately, the MRI they did while I was in the hospital showed that there is marked regression and shrinkage for my tumor(s) [which gave them the impression that it wasn't a seizure]. They put me on Keppra until they can determine what it was. Granted, it could be the type of seizure that Original.Evil is talking about, so there's no telling what this was. I am tolerating the chemo fairly well and am able to manage most of the symptoms until they pass. I had the infusion on the 16th and was feeling better by the evening of the 18th. Next chemo day will be next Monday. Overall I had a pretty great holiday though.
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Dec 31, 2008 08:44
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I see you mentioning Temodar and Keppra and that is pretty much standard treatment even in Europe. If there is a need for more chemo, Avastin (bevacizumab) is included in several clinical studies with good prelimiary results. Cases of complete regression (tumor shrinkage to the point of it's not there) has been observed. So if any of you are unlucky you should discuss this with a medical oncologist. Sorry folks, I'm in my oncology specialty training but not in this field so I can't really supply detailed info. My knowledge of astrocytoma/glioblastoma is simply not good enough yet. rasser fucked around with this message at 15:44 on Dec 31, 2008 |
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Dec 31, 2008 15:38
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Yeah Bob Vance! Glad you had a great Holiday and are tolerating the Chemo so far. Even more awesome that the tumor is shrinking away. Here's to hoping the New Year will be great for you.Big City Drinkin posted:What does it feel like to have a seizure, if you don't mind my asking? Original.Evil posted:Also, Nannypea: are they grand mal seizures, or (forgive my lack of medical terminology) the sort where you sort of space out and possibly fall over? I have partial seizures, so not gran mal aka Tonic-clonic seizures. That means I do not lose total control of my body but just a part. Don't get me wrong, once it's starts I can't really control anything but I don't have uncontrollable movement all over. For me, since the left side of my brain is affected I lose control of the right side. Specifically the right side of my face, arm and hand. Generally I can tell it's going to happen and it's starts in my mouth with either my teeth chattering uncontrollably or my tongue contracting. Here's the scary part: I know everything that is happening but can't communicate with anyone. That is one of the first things I made sure my family knew. I know what's happening but I'm unable to do anything to stop it. We have a sign we use that I let them know it's coming/going to happen. How does it feel? Imagine your teeth start chattering and you have uncontrollable facial and arm movements. You know it's moving but you cannot stop it. Once it finally quits - usually about a minute or so then you're speech part of your brain is all screwed up and you cannot speak real words, just gibberish. That's how it feels for me but I'm sure everyone is different. I'm currently taking Keppra and Dilantin to control the seizures.
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Dec 31, 2008 18:05
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Nannypea posted:
Nannypea, aside from being unable to speak, what is the "post-ictal" period after the seizure like for you? How long does it last? Do you feel relatively normal or just exhausted? I'd imagine any kind of seizure is an enormous expenditure of electrical and chemical energy by the brain and would leave you pretty drained. Bob Vance, I'm also glad things are going well for you, we're pulling for you in this thread!
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Dec 31, 2008 23:20
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The Enforcer posted:Hey fellow cancer survivor! Ugh that's criminal. I feel so bad for you. I hope that will change with the new government. Nannypea posted:I haven't had a seizure in a couple weeks. My dilantin levels are still a little low but the Dr decided not to increase the meds and to continue checking. I have chronic pain and it's triggered a grand mal. I wasn't put on dilantin or anything though but I'm supposed to take novo bromazepam when I my pain gets that I feel seizurish. Nannypea posted:Oh yeah - short term memory? What is that because I don't have any. I didn't realize how bad it was until I was watching TV and didn't realize what I was watching after the commercials finished. Haha that happens to me a lot, you are lucky you have good family. I can't function because of the combination of pain and the memory loss + having untreated dyslexia. I wish the best for you.
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Jan 3, 2009 18:33
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Bob Vance - how's the Chemo going? Kicking your rear end? You hanging in there? Wishing you the best and keeping you in my thoughts & prayers. I start my next round of Temodar next week. Double the dose I was taking during radiation but for only 5 days. Hope it won't be too bad. Zwabu posted:Nannypea, aside from being unable to speak, what is the "post-ictal" period after the seizure like for you? How long does it last? Do you feel relatively normal or just exhausted? I'd imagine any kind of seizure is an enormous expenditure of electrical and chemical energy by the brain and would leave you pretty drained. The seizure itself normally last from 1-2 minutes. My inability to speak kicks in before the seizure itself, kinda like a built in self warning system. Once it's over it's normally 15 mins to an hour before I can speak again. Then it's a good nights sleep before I"m back to "normal" or rather pre-seizure self. In the mean time I have very slurred speech and am very tired. You are right, it does leave you totally drained.
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Jan 11, 2009 21:27
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Chemo kicks my rear end for about 2 or 3 days after treatment. With it being only every other week, it's been pretty tolerable, I suppose. Thank God for anti-nausea meds though. The real problem has been the Keppra and Ceptra (seizure drug and antibiotic), which have kicked my rear end when it comes to energy level. I'm trying to make a conscious effort to get to the gym or pool every other day or so, but actually making it happen is a different story. I did Temodar over the summer, but it was a 21 days on--7 days off schedule (lower dose over longer period) it was fairly tolerable, but it can obviously vary from person to person. Keep it up cancer buddy... 
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Jan 12, 2009 05:13
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Hey OP, I skipped the entire thread after I read your post. Just wanted to say that I hope you get well. 
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Jan 13, 2009 12:55
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Bob Vance posted:Keppra Glad to hear you're hanging in there and it's not too bad. How much Keppra are you taking? Since I've had multiple seizures I'm on 1500mg Keppra in the AM and another 1500mg in the PM with an additional 600mg Dilantin. You're right, it knocks you down and slows you down a lot. I'm starting my next round of Temador tonight for a 5 days on and 3 weeks off. The Oncologist was not specific with the dates. The one thing he was specific about was that I'd probably be following this regimen for about a year. Next MRI is scheduled for another couple of months - 3 months after the last dose of Radiation. Unless my neurosurgeon wants another before that, I'm seeing him the first of February. I get to start working on the "spot" on my pancreas next week. We had thought about pushing out the date until I finished chemo but if it's going to be a year, I cannot wait that long. Let's Keep it going cancer buddy... StoreManager posted:Hey OP, I skipped the entire thread after I read your post. Thanks StoreManager. We need all the positive energy we can get.
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Jan 16, 2009 01:18
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Nannypea posted:Glad to hear you're hanging in there and it's not too bad. How much Keppra are you taking? Since I've had multiple seizures I'm on 1500mg Keppra in the AM and another 1500mg in the PM with an additional 600mg Dilantin. You're right, it knocks you down and slows you down a lot.  1500mg x 2 times a day? drat. Makes me feel like an rear end complaining about it knowing I'm only having to take 500mg x 2 times a day.They also added something to stimulate my appetite, so I finally feel like I can eat 3 meals a day. Yay!
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Jan 16, 2009 06:14
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Bob Vance posted:They also added something to stimulate my appetite, so I finally feel like I can eat 3 meals a day. Yay! OMG You can eat! Food is not high on my priority list at the moment. I am eating a lot of fruits, veggies and cereals. I could care less about meat. I am on my last day of temador, looks like it's going to be a 5/23 cycle. I'm not sure how it's going because I've got a horrible cold. That same crud that has been going around. All I've done is sleep, cough, and force myself to eat so I can take meds. Question for you: Did you notice that your smell was greatly enhanced? Mine is like my super spidey sense. I can hardly stand to be anyone that smokes. All I can smell on my husband was gas after we stopped at the gas station. This isn't helping my appetite at all. The exciting news is that I meet the Gastroenterologist today. He's going to schedule an MRI to check out the 1 inch spot on my pancreas. There's always more fun just waiting around the corner.
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Jan 20, 2009 02:24
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Here's hoping that spot is just because the tech sneezed during your scan. I remember a Woody Allen movie where he was freaked out because there was a spot on his lung and someone corrected him because the spot was on his shirt. I'm getting yearly MRI checkups now so someone else must carry the magnetic burden. Fly the flag with pride, nannypea.
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Jan 20, 2009 05:01
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Nannypea posted:OMG You can eat! Food is not high on my priority list at the moment. I am eating a lot of fruits, veggies and cereals. I could care less about meat. This is a pretty good sign by the way. When my mom was going through all of this (breast cancer) she couldn't eat at all and didn't have a taste for food. Trying to eat, she would just vomit. Not eating good made things worst for her. This thread really interests me. I've been around a lot of cancer patients. My mom, and my moms sister, and I use to get remicade infusions once a month at a hospital and it was done at the cancer center. So I met a lot of cancer patients that way. Those places are depressing as gently caress. I said come in! fucked around with this message at 10:00 on Jan 20, 2009 |
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Jan 20, 2009 09:56
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Nannypea posted:Question for you: Did you notice that your smell was greatly enhanced? Mine is like my super spidey sense. I don't remember having that happen, but it is listed as a possible side effect here as "change in sense of smell". http://www.emea.europa.eu/humandocs/PDFs/EPAR/Temodal/H-229-PI-en.pdf Bob Vance fucked around with this message at 21:56 on Jan 21, 2009 |
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Jan 21, 2009 17:44
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Bob Vance: You still doing OK? Had any more seizures? You still doing OK on Chemo? Seizures Ahoy! I'm rocking all my seizure meds and all of sudden outta no where BAM - seizure time. Normally this will happen if I'm too tired or emotional, something. This came out of no where. Called the Dr, had blood drawn and determined my dilantin level was way low. After loads of questions, no idea why it suddenly dropped so I've upped it another 100mg per day and getting tested every week. I have my next MRI scheduled for next week. This one is for my pancreas not my head. The last MRI indicated it was difficult to tell what was really going on because I had not been able to hold my breath while they were doing the test. I check the date. It was the loving day after I had my tumor removed. Hello! I had just had my head cut open and my brain hosed with. I was on so much morphine and percocet I'm amazed they got anything decent at all. Hopefully this little 1 incher isn't anything. Keep your fingers crossed. On the drug front I'm finally getting off the steroids. Should be totally off in another week. Finally! Maybe I'll be able to lose all the weight they made me gain. I've started working out - slowly. Doing some Wii Fit and trying to build up my endurance. This fatigue is a PIA and I'm ready to be able to do more than shower without getting tired. Question: Will or will not the hair on my head grow back? It came out due to radiation and I'm getting conflicting reports as to whether I'm going to be half bald the rest of my life or not.
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Jan 31, 2009 21:58
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How are you doing with the copays NannyPea? Have you met with the hospital social worker to try and get charity care (where they knock off large parts of your bills or waive copays)? I know you're on disability, but you might be able to get some SSI benefits (if you don't already have them) around a year from diagnosis with doctor's support (especially since you'll still be on chemo then!) My mom is a Acute Lymphoblastic Leukemia survivor, and was able to get this done and it helped her finances quite a bit. I can't imagine how getting radiation to your head must suck, but I watched my mom go through CNS chemo (vincristine is an evil and wondrous drug) along with the full body stuff and it was absolutely horrid. Have you gotten any cool hats or headscarves?
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Jan 31, 2009 22:22
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Nannypea posted:Question: Will or will not the hair on my head grow back? It came out due to radiation and I'm getting conflicting reports as to whether I'm going to be half bald the rest of my life or not. Your hair wont come back the same as it was before. If you really liked the look of your hair before, be prepared for disappointment.
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Feb 1, 2009 18:13
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Nannypea posted:Bob Vance: You still doing OK? Had any more seizures? You still doing OK on Chemo? No more seizures here...they said that my keppra levels were sub-therapeutic, but it seems to be doing it's job. One more round of chemo tomorrow before MRI next week! Your hair should grow back, though for me it did in phases, so I now have 3 different lengths of my buzzed haircut. Seems to be the same color/texture to me. Prepare for disappointment, but hope for the best.
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Feb 3, 2009 09:32
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Aika posted:How are you doing with the copays NannyPea? Sorry to hear about your Mom but very glad she is a survivor. So far I've been very lucky that the Radiation wasn't *that* bad nor the Chemo. Fortunately the chemo I'm doing is in a pill form. I'm doing OK with copays, so far. I'm going to LTD and SSI in another month or so. I'll have to really start checking things out then. I have been doing lots of cool hats. No headscarves. I've been buying from Etsy and getting cool stuff and not the typical "cancer hats." I have a knitted hat with bunny ears. It's pink with white ears and everyone loves/wants it. I said come in! posted:Your hair wont come back the same as it was before. If you really liked the look of your hair before, be prepared for disappointment. Bob Vance posted:Your hair should grow back, though for me it did in phases, so I now have 3 different lengths of my buzzed haircut. Seems to be the same color/texture to me. I'll take hair. It will be nice to get my scar covered and not have to wear hats. I don't mind if it's different, I can always do a weave. But you still got to have something to weave to. Right now I'm totally bald on the left side and very thin on the right so I cannot even do a comb over. Oh well! I'm still here and that's all that really matters. Bob Vance posted:No more seizures here...they said that my keppra levels were sub-therapeutic, but it seems to be doing it's job. One more round of chemo tomorrow before MRI next week! Yeah no seizures!!! We are working on getting my dilantin levels correct and it's driving me crazy. My joints and muscles are aching, I slept all day, sick on my stomach - signs of toxicity. I'm cutting back tonight and we'll see how the blood work looks Friday. Just a note: It's kinda sad we're excited about having MRI's. Most people hate them and we're all about getting them and finding out what's going on.
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Feb 4, 2009 02:41
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 Great News The MRI of my pancreas showed no evidence of disease!  I don't think I have ever gotten such good news in my life. People live with Brain cancer but that pancreatic is pretty nasty. Both my dilantin and keppra levels are now at therapeutic levels. No one can figure out why the levels dropped but they are guessing Mucinex D. I start my next round of Temodar next week. Somewhat bummed because I'm just starting to feel normal again. Trying to get my next MRI scheduled. Ready to see how the radiation treatment worked and what my brain looks like. Bob Vance: How you doing? Hang in there and we'll be back to normal before we know it. 
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Feb 12, 2009 00:02
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Sweet!!! That's great news. I said a prayer for you and Bob Vance the other day.
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Feb 12, 2009 01:26
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NED is great and all cancer patients should get to know him.
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Feb 12, 2009 03:09
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I'm so relieved for you...I was worried about that spot! Pancreatic cancer is horrific
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Feb 12, 2009 03:36
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Nannypea posted:
This is wonderful news, i'm very happy for you!
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Feb 12, 2009 04:13
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Nannypea 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? Great to hear that the scan was negative, though!
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Feb 12, 2009 17:38
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congrats
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Feb 12, 2009 17:45
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Nannypea posted:
Congratulations!
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Feb 12, 2009 22:05
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