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Last Tuesday (the 7th), I driving down the road having a normal day, going to have some margaritas with friends. I had just left the hospital visiting my aunt in ICU for a brain tumor on her cerebellum. Suddenly something strange happened, I couldn't talk. Then I couldn't move my right side. I pulled off the road and had a seizure. The EMS showed up and took me over to the local ER. After they ask me which one I wanted to go to; like I cared. The Dr was sure I was having a drug interaction. He kept asking over and over if I was a recreational drug user. Had I taken anything different today. My family showed up and he told them he was sure it was some type of drug interaction but he was going to do blood test and a cat scan just to make sure. The Dr came back acting very strange. He pulled up a stool and sat down. He says that he has good news! My blood test come back great. But my cat scan shows a tumor. He is going to transfer me to a better hospital. Now I have a neurosurgeon and ping pong ball size cancer mass in left lobe. He took it out on Thu and just got home today. Once the incision heals I will radiation for a while. Any information on cancer or radiation or brain tumors would be helpful. I have get off the PC because makes me tired and causes little seizures. *sorry bad English - I have brain cancer!
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Oct 17, 2008 02:03
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Ok, here is what I know so far. Sorry this is disjointed but my speech and motor skills are affected (right side). The tumor is primary brain cancer that hasn't spread anywhere else and most likely not too. I have a small "spot" on my pancreas but doesn't appear to be anything but a cyst. The tumor was bigger than a ping pong ball on the front left temporal lobe and was mostly no symptoms. Other than the initial seizure I had not had head aches or any other symptoms. Since the surgery I have trouble talking, my right side of my face has some numbness and lose of dexterity in my right hand. I continue to have smaller seizures that are getting better. The preliminary test show that is Type 2 and has been growing a while. I will start radiation therapy once the incision heals more. It is about 10 inches long from the top of my ear to the middle of my head and has lots of staples. Radiation should last about 6 weeks for 5 days a week. OK, have to get off the computer again  More to come later when I can type/think more.
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Oct 17, 2008 18:11
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I am a 37 yr old female. Family history is very interesting. My paternal grandfather had a brain tumor, type 4 in the same approximate place. 2-3 months after he was diagnosed he was totally crazy and a few more months dead. My maternal grandfather had a brain tumor at the base of his brain but it was 30+ years ago; he died shortly after as well. Family gets really interesting now. I have about same thing as my paternal grandfather. My mother's youngest sister, 47 yrs old, has one at same place as her dad, my maternal grandfather. She had surgery on Wed and me on Thu. Hers is much worse because it's a 4 and started in her lungs and moved to her brain. She's still in ICU and hasn't really woke up. Her prognosis is not looking good. My prognosis looks pretty good. They got all the tumor out and should be able to get anything else with radiation. My life span should be about normal which is better than the 10 yrs I was originally told. As for the Dr's & nurses, they were all very good. They told me too much information at one time. It's hard to hear you have a brain tumor and that's it's cancer and then remember anything else they say. Yes the ER Dr did say he had good news. Talk about an idiot. I have 2 oncologist, one for radiation and another chemo. I should not need any chemo but he is following just in case. I see the Radiation oncologist on the 28th to form a treatment plan. I can tell I am doing better every day. I can talk better and concentrate longer. I get very tired easily and sleep a lot. I get up at 8am, take about a dozen pills and then go back to bed. Something is making me sleepy. I can take percocet every 4 hrs as needed but it's not been too bad. I normally just take them in the afternoon and at night so I can sleep. To make things more complicated my husband had his cancerous prostrate removed this week as well. Right now we have family staying with us. OH yeah, the bad part. I have no idea when I will ever be able to drive again Thank you for the Cancer website, I'm checking it out now.
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Oct 18, 2008 18:56
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Hopefully the guys will get better at telling people this stuff as we go forward. The only other interesting experience I had was with the neurosurgeon. He came by to see me before surgery and just mentioned that he was going to get all the tumor so I could then start chemo & radiation. He had not mentioned this before so I totally freaked out. So bad they got my husband to come back to calm me down. A happy shot took care of all shortly thereafter. Todays update: I got my staples out! I no longer look like I have train tracks across my head. The Dr is being very vague about my tumor but did say it was a Astrocytoma (grade II). The tumor is currently in Boston being examined by another pathologist. I'll keep you guys updated as I know more. So far it's just slow waiting now.
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Oct 23, 2008 00:58
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Small update. I visited the Radiation Oncologist on Tuesday - I love her! She's beautiful, smart and takes loads of time to explain everything and answer all my questions. We did the face mask to get ready for radiation but my final pathology report still is not back. It was sent to Boston for further review. She said I must be "special" to have it sent around this much. Anyone familiar with might be going on? We cannot start any treatments until the final report is in. Any goons work with tumor pathology in Boston? Anyone working on my case? Think you might could take it out drinking and take pictures? Kinda have it take a little tour of the town? At least then one of us would be having fun.
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Oct 30, 2008 19:51
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Woo Hoo! First day of Radiation Treatment DONE! It wasn't that bad, just uncomfortable with the "face mask" on. Here's what it looks like but just covers the face/neck not the rest of the body:  It only took about 5 mins for the total treatment. Now just 6 more weeks and I'm done. The final pathology report is still not finished. We decided to begin the radiation treatment anyway since it was going to be required either way. We meet with the neurosurgeon again today and found out the last MRI looked great. I had an appointment with the Internal Medicine Consultants/Gastroenterology on Tuesday and he has no idea where to start until he gets copies of all my records. Working on getting that to him now. *FYI I have a "spot" on my pancreas that was found in the full body CT Scan My aunt passed away this past weekend and her funeral was today. We determine it was not in my best interest to attend as emotions - especially down/sadness - kicks in my seizures.
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Nov 6, 2008 00:44
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Bob Vance posted:I'm glad it went well for you! It was 5 minutes for the treatment itself. Took a few more mins to get everything setup. I hope your last treatment went well and your year of hell will end on a happy note. Please let me know how things are going Der Meister posted:If I may be so bold, can I inquire about how you're affording all of this treatment? Do you just have regular insurance? How has it been dealing with them? I am just curious. Be bold! I do have health insurance and short/long term disability thru work. Even with the insurance it's going to cost a fortune. Just found out today that insurance covers 100% of my radiation treatment, I just have to pay the copay - every time I walk into the office! That's $30 a visit - $900 just for the radiation visits alone. I got my first official bill from the hospital, just a small list of items for $79K. I'm going to be very very broke but hopefully healthy.
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Nov 7, 2008 18:30
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Der Meister posted:What a stupid loving system we have. You have no idea! The pathology report finally came back, I have a Left Frontal Brain Tumor: Astrocytoma, WHO Grade II-III/IV. Since there are Grade III cells the oncologist recommend chemo - Temodar. This only comes in pill form so health insurance doesn't cover it rather it falls under the prescription plan. gently caress Medco!! They have denied the request for the chemo drugs. We've now appealed and are awaiting their decision. The prescription also included anti nausea meds and a low dose antibiotic. They filled the expensive anti nausea and antibiotic but didn't fill the Temodar. Hello~! I don't need those 2 if I don't have the chemo drugs. I do have copies of the final path report,MRIs, and CT Scans if anyone is interested. So far the radiation treatments are going well. Wednesday will officially be 2 weeks and I'm well so far. My head/scalp is starting to get irritated, some dry mouth, floaters and fatigue. It seems by the end of the week I'm really tired but I get some energy back over the weekend. Also, the neurologist called. I'm taking 400mg of Dilantin and my blood level is still at 6; it should be between 10-20. I now get to take 5 pills a night to make 500 mg and get my blood tested again on Friday. Wooo Hoooo!
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Nov 17, 2008 22:41
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The appeal worked! I've started taking the pill chemo Temodar. This stuff is expensive. So far nothing too bad other than lots of fatigue. The Radiation is screwing up my hair; the left side of my head is pretty much bald. I'm trying to decide if I want to shave it or not. I thought about doing a Mohawk but my husband squished it and now the hair is falling out the top of my head as well. I kid that I leave a trail of hair wherever I go. I'm going to Duke for genetic testing/research after I finish radiation and chemo. With my family history they want to find out what I got going on. 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. Anyone have any experience with seizures and meds?
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Nov 27, 2008 02:45
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Woo Hoo! I'll be finished with Radiation and Chemo in another couple weeks. That means I get Christmas, New Years and my Bday off!!! Of course I'll start another round of chemo right after but I'll get some time off to have fun over the holidays. So far everything is going - OK. I get tired real easy and am tired/sleep a lot. My stomach is questionable all the time. Whether I can eat or not is not determined until I try. Oddly enough I'm not losing weight. drat those steroids! I am finally starting to reduce the steroids so that will help. I've lost the hair on the left side of my head - just the side where I'm getting radiation. I thought about doing a Mohawk but I don't have enough hair on the top of my head. Right now I can kinda do a sad comb-over. I decided a hat is the way to go WHEN I have to do it. When I'm at home I just walk around 1/2 bald. 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. For those asking about the medical bills you were right. Even with insurance they are crazy. Fortunately my disability has been approved for extension thru Feb 1. Not sure I had mentioned it before but I do have a "spot" on my pancreas as well. We're not even going do any further test on it until the end of January when I've had a chance to get some energy back. I couldn't do an endoscopy right now if I wanted to. No way I could go that long without drinking any water.
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Dec 6, 2008 17:13
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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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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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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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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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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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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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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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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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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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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'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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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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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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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! 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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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 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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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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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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Bob Vance Awesome news on the camp! And the job. Having fun is more important than making money. I've learned that the hard way. <not that I'm rich or close to it but I worked 24/7 and realized it's really not worth it> FlyWhiteBoy I will keep you my thoughts, please update this thread as soon as you know something. And keep pushing to get that MRI done quicker if for nothing but for peace of mind. Good thoughts, wishes and prayers headed your way. Dick Trauma You really sound like you got it going on. Keep working those muscles and you'll be all beefed up before you know it. You are right, there is not much entertainment in the seizures. Thanks for all the support. I think I just had a mini panic attack. I'm back to being positive and ready for Alaska. We're stopping a couple days in Canada, need me to pick up anything? So far the list consist of Zovirax and Tylenol III (Tylenol w/Codeine). 
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May 20, 2009 03:16
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FlyWhiteBoy posted:Thank you very much, had my MRI and EEG done today. Hopefully the results will be in in time for my Doctors appointment tomorrow. As of now they have me on 1000mg daily of Keppra. I was wondering if anyone has any experience with using cannabis to prevent seizures. I live in California and already have a medical recommendation for it. I have been wondering the same thing but add chemo into that. I live in NC and you cannot get any legal cannabis period. Treating Seizures would be great. I'm on 1500mg Keppra & 500mg Carbatrol both in the AM and PM with 500mg Dilantin in the evening. Getting rid of some of those would be awesome.
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May 20, 2009 18:21
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I've only been on Dilantin since October and so far no issues. My only problem is keep the levels at the right level. It will just dip for no apparent reason. Since I'm having that problem we're trying to convert me over to Carbatrol. We've been increasing Carbatrol and decreasing the Dilantin. Right now we're still having issues with the Dilantin where if it gets too low (less than say 6 <should be between 10-20) I have a seizure. Everyone I know that has been on seizure meds for a long time say that it's very hard getting the prescription right for you. Once you get it all figured out your good to go but getting there is a pain in the rear end.
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May 22, 2009 03:36
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I'm back! Had a great time and not too many issues. Slept a lot but still enjoyed everything. The biggie is that my next MRI tomorrow and that will be that one will let me know what's really going on. Ready to get it done and find out the results. Interesting note from the trip: I had not realized how my right hand was really working. My thumb and pointer finger really suck! Well they all do but it's really noticeable in those 2. No can do with thongs at the salad bar and trying to use chopsticks was just laughable. OK - enough about me! How's everyone else doing?
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Jun 10, 2009 22:13
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Dick Trauma What is important is that we will found our way back. And we're still here kicking it's rear end! I got my MRI results today and the bastard is finally starting to shrink! I've been doing the all afternoon and lots of going on. Only downside is that I'm still starting chemo tonight.
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Jun 13, 2009 00:07
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Bob Vance Stable is not a bad thing. Which beach you hitting? Dick Trauma Hang in there buddy Lt. Tanaka I appreciate the well wishes. I'll take all the good karma coming my way I can. And the clean air was marvelous! As for me I have a couple interesting points. I reviewed the MRI with my radiation oncologist and she believes everything is stable and not shrinking  BUT I have an appointment at the Duke Brain Tumor Center next week. Anyone been there? I'm fortunate that I live right down the road. On the very bright side I'm listening to the news and they are talking about NC approving medicinal marijuana. My husband, former NC Highway Patrol employee is having a fit. He tells me it's horrible for my lungs etc. Didn't go over well when I pointed out it was better for you than the alcohol he had in his hand.
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Jun 19, 2009 01:09
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