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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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I know this is probably not what you want to hear right now, but where exactly on the lobe was it? you say ping pong ball, so I wonder if you had been having headaches for a time before you found out. Unfortunately I'm not so good with the brain tumor thingys my Uncle died of one somewhat recently, though he did get better for a time. His was pretty aggressive, so Once you go in for your next check up, I suppose you'll find out what's likely to happen. Sorry to hear about this man, it's pretty rough. :/
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Oct 17, 2008 02:23
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Sorry to hear about this. Do you know anything about the grade or type of cancer? My uncle had GBM (glioblastoma multiforme) and it is unfortunately both the most common type and the most aggressive. I imagine your doctors will be giving you plenty of information.
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Oct 17, 2008 04:39
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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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Is there any other family history of these types of cancer? I'm assuming you are a pretty young guy. Something to consider bringing up with your oncologist. You will want to know if there is any chance it is an inherited issue. Best of luck in your recovery.
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Oct 17, 2008 20:32
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Did the ER doctor really say he had good news?
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Oct 17, 2008 22:33
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I don't have much to add except that I would like to hear updates as long as it's not a bother. I'm curious to hear how this sort of thing plays out from a patient's perspective: what they're telling you, what you're going through, that sort of thing.
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Oct 17, 2008 23:26
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I have a non cancerous brain tumour myself. I am sorry to hear that it came on like that. There is some really really good help though. Searching for cancer stuff is hard because to get real help you have to filter out a lot of stuff. If you need a question answered almost all day the staff on this site has live chat and a HUGE database. They helped me figure out a few things. http://www.cancer.gov/ my doctors gave me a ton of info but the person chatting with me helped me figure things out I was too embarrassed to ask (I am too proud sometimes since I work in biology fields). Radiation on your head is quite something, they were going to do it to me if my tumour grew and interfered with vision which it did not (I take medicine instead). They let you know what you need to do before (like dental work) and after to make sure you recover properly. Keep in touch and more importantly as hard as it sounds, keep positive it changes everything, I have lots of cancer survivors in my family and it seems to make a difference.
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Oct 18, 2008 00:36
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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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Nannypea posted:Yes the ER Dr did say he had good news. Talk about an idiot. Good luck with your brain cancer. I bet the whole thing is very surreal.
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Oct 18, 2008 19:50
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Nannypea posted:My paternal grandfather had a brain tumor, It's great news that they got almost all of the tumour, here's hoping the radiation gets the rest  Keep us updated!
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Oct 19, 2008 11:14
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anaphylaxis posted:I wonder if he was as nervous as it sounds like. If so, I can picture him saying "Good news!" and then when it's over he thinks, "poo poo! I sounded like an idiot!" My specialist read his sheet and then told his note recorder that I had a tumour before he told me. It wasn't cancerous, but still the  look from me and my mom was probably quite something.
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Oct 19, 2008 18:19
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If it's any consolation, that's the kind of stupid poo poo that medical schools these days are strongly training students to avoid.
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Oct 19, 2008 18:49
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I'm glad to hear that your prognosis is good. Keep strong, and keep us updated if it's not a bother.
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Oct 19, 2008 18:50
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DocPsychosis posted:If it's any consolation, that's the kind of stupid poo poo that medical schools these days are strongly training students to avoid. But you're certain to do it at some point nonetheless
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Oct 19, 2008 23:27
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BEHOLD: MY CAPE posted:But you're certain to do it at some point nonetheless Probably, but it's still the kind of thing people are thinking about now much more than they were a couple of decades ago, and the training reflecting that should help in the long run.
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Oct 20, 2008 02:10
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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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Nannypea posted: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. Grade II is good news. Survival is much higher than with the more common grade IV. I hope your post-op symptoms improve. I don't know much about whether or not they will.
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Oct 23, 2008 02:53
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Nannypea posted: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.  What in the gently caress is wrong with these people? You shouldn't need Ativan after discussing a procedure with a doctor. Unbelievable.And yet among the people in my class who want to be surgeons, I can definitely see some of them doing the same kind of poo poo someday.
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Oct 26, 2008 15:55
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^^^However, most neurosurgeons are unbelievably busy, and some assume the primary care doctor or the neurooncologist had already discussed resection with the patient. BTW, I hope the rest of your treatment goes well, OP.
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Oct 29, 2008 02:02
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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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Sometimes "special" just means they are arguing about exactly what level it is, and that doesn't mean it might be a higher level. It can be a lower level as well, so it might come back with grade I as the final assessment, not grade III. A few weeks after my surgery I get a call from my doctor: "It wasn't cancer. You're all clear!" Yay. I tell my parents and all my friends. Two weeks later: "Um... yeah... we examined it further and it is cancer, but low grade. Sorry about that."
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Oct 30, 2008 20:16
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Nannypea posted: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. Well, in veterinary medicine sending a sample around usually means a few things. Sometimes it is very difficult to determine the level as stated, and other times they want to be sure because they are mostly sure, but want to either try it with a deeper sample (from what they have been given) so they can have a very accurate report so that you and your doctor know what exactly you're dealing with and how to treat it properly. An example with tumour analysis would be receiving a report for a nasal tumour that says "I'm seeing a lot of___ cells and it looks ___way but I cannot be 100%" Then a few hours later we will receive an update report where the pathologist says that they looked further and found exactly what it was with a full prognosis. It's a matter of the sample, what your doctor gave them and how far they go to be sure of what is what. Being "special" isn't always bad either.
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Oct 30, 2008 21:59
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Hey there left brain astrocytoma buddy. I had a second surgery for mine back at the end of August after extreme headaches and nausea, and what began 2 years ago as a grade I had become a grade III. They too were able to get "all" of the tumor. I am currently on day 29 of a 33 day (6 + 1/2 weeks) proton radiation treatment in Jacksonville, FL, and then *hopefully* this poo poo-tastic year of my life can have a happy ending. I hope your treatment goes well! Bob Vance fucked around with this message at 17:59 on Nov 1, 2008 |
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Nov 1, 2008 17:54
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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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I'm glad it went well for you! So was it 5 minutes TOTAL or 5 minutes for the treatment itself. For me, each of the 3 radiation beams took about 2-3 minutes (depends on how busy the place is), but there is an additional 10-15 minutes of preparation (x-rays to ensure proper positioning and what not...) before they can start sending in the treatment beam... Tomorrow is my last day of treatment! Here's to hoping this can be an end to whats been a year from hell...
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Nov 6, 2008 06:53
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I'm happy your treatment is running along smoothly. Sorry to hear about your aunt. 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.
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Nov 6, 2008 18:49
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Bob Vance posted:Hey there left brain astrocytoma buddy. Out of curiosity, who's your radiation oncologist?
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Nov 7, 2008 17:03
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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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friendship waffle posted:Out of curiosity, who's your radiation oncologist? Dr Sameer Keole...he works at UF Gainevile as a teacher and at the Jacksonville Proton center the rest of the week, I believe.
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Nov 9, 2008 04:01
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Nannypea posted:It was 5 minutes for the treatment itself. Took a few more mins to get everything setup. Hey fellow cancer survivor! I had Non-Hodgkins Lymphoma I'm pulling for you to recover! About the finances, after my treatment I had about, poo poo I don't know 350-500k in debt even with my insurance. Bankruptcy my friend, nobody looks at you bad when you tell them it's cause you had cancer. That was a pretty lovely way to break the news to you, but it's not uncommon, when my doctor came in to break the news he turned on the x-ray viewer thing and you could see this huge mass right in the middle of my chest and I saw that and said slowly "...........cancer" and the doctor went "Well, we don't KNOW that for sure, tests still haven't come back" and I got kinda pissed and said "Look, if you don't KNOW what it is then why are you showing me this and if it's NOT cancer then can you explain to me what else might cause a huge loving ball to spontaneously appear in the middle of my chest?!" Looking back on it, it was kinda funny cause I totally tossed it back in his face with the "OHHH WELL CAN YOU EXPLAIN THIS TO ME MISTER SCIENCE!" Doctor just kinda got up and let me be with my family. The Enforcer fucked around with this message at 01:53 on Nov 11, 2008 |
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Nov 11, 2008 01:34
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The Enforcer posted:I had Non-Hodgkins Lymphoma I'm pulling for you to recover! About the finances, after my treatment I had about, poo poo I don't know 350-500k in debt even with my insurance.
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Nov 11, 2008 20:11
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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 Enforcer posted:Hey fellow cancer survivor! Makes you wonder what the point of having insurance in the first place was, doesn't it?
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Nov 17, 2008 23:39
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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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My father has had epilepsy for fifty years or so. He's been on dilantin the whole time. The trickiest thing about seizure meds is keeping a steady blood level of the drug. There are interactions that can raise it and lower it. Changing altitude (he lived in the Rockies for a few years) can affect it. If there is any question of the consistency of the blood level it needs to be checked fairly regularly until you can be sure that you aren't close to dipping below the minimum point of efficacy. You'll know when that happens. As for rads... shave it off! It's probably all going to go, or at least enough to be all spotty. I had it on my leg and at first I said "Oh that's not bad" and then it all started coming out. The beam was aimed a little bit off so my skin really got fried on one side and even five years later that part is smooth as a baby's butt. The rest of that leg is still only partially hairy as bit by bit it makes a comeback.
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Nov 27, 2008 03:13
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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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Good to hear you'll be done soon. Don't bother hanging on to that hair, buddy. You must shave it all off, now! A pre-emptive strike is the only way.  I saw my old "radiation buddy" again today. She and I had our radiation appointments at the same time so we used to chat a bit. After we were done I saw her again months later in of all places a health club. I thought that was great that two cancer survivors who met thanks to the power of rads would meet up again while working out and staying healthy. I see her at least once a month now at my local grocery store. As dire as things look sometime you can never really predict how things will end up.
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Dec 6, 2008 17:58
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Nannypea posted: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. I assume you were prescribed Zofran for the nausea? Glad to hear you're almost finished with the radiation, for me it only took a few weeks before I felt like me fatigue had worn off. When I was taking Temodar I honestly didn't have much fatigue (granted, I had been on carboplatin and vincristine before that, so it's all relative). I also was on a 21 days on/7 days off schedule, and I assume you're on the 5 days on/23 days off schedule. Hope this last week goes great for you. See if you can keep your mask as a "souvenir" of your journey.
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Dec 7, 2008 08:10
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1 Month Follow-Up MRI was today: I have enhancement in the radiated area (which was to be expected and is not unusual at all). I also, unfortunately have enhancement (tumor) in the ventricles--and as a result may have tumor in my spinal cord. Spinal MRI is Thursday... I was so ready to go back to school, and now it's gonna be more chemo for me.  gently caress this
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Dec 10, 2008 03:36
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