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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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| # ¿ Apr 25, 2024 05:47 |
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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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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: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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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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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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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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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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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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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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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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So glad to hear your good news, Nannypea!Nannypea posted:Bob Vance: How you doing? Hang in there and we'll be back to normal before we know it. Had my MRI yesterday, things look to be for the most part stable or improving. The radiologist noted that there was some enhancement in the back of my right lateral ventricle, but my oncologist seems to think that that was there in the previous scan as well. So while I'm not quite out of the woods yet, things seem like they're okay for now.  UPDATE Multiple radiologists confirmed that the enhancement was in previous scans, so things are headed in the right direction! Bob Vance fucked around with this message at 05:42 on Feb 14, 2009 |
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Feb 13, 2009 00:02
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BuckT.Trend posted:I'm not sure where to go right now, so this thread seems as good as any. So sorry to hear about this...  See if you can get him in on an Avastin + CPT-11 trial. It's a bit rougher than Temodar as far as chemo goes (he would need to go in for infusions every other week), but it has worked thus far for me, basically by starving the tumor of the blood that it needs.
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Feb 28, 2009 06:36
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Thankfully, I'm still covered under my parent's plan (I'm 20 and a student). Thank goodness for that, or I would be royally screwed.
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Mar 1, 2009 08:52
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Nannypea posted:I had my first MRI after radiation yesterday afternoon. I'm hoping everything is clear, I'll get the results next week. Wow, that is surprising and appalling...I'm usually seen within one or two days. If you go to the hospital "library", they should be able to burn you a disc of it, including the program you need to read it. It can be daunting to learn the software, but it's pretty cool to be look at your brain on your own time.
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Mar 13, 2009 06:58
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Nannypea posted:Bob Vance I'm doing pretty well...had chemo today so the crappy day will likely be tomorrow. I will have an MRI near the end of April...fingers crossed! My birthday is this weekend (21!  ) so hopefully I'll be feeling well by then. I applied to spend a week at a kayaking camp for young adults this summer, I think that will be a nice experience.
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Mar 18, 2009 03:53
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The birthday was great, I had a good time with some friends that I hadn't seen in a while, which is always nice. I too am starting to apply for disability, in case my parents insurance pulls the "your son isn't in school and isn't working, so we can drop coverage" card. Another round of chemo finished--MRI on the 13th. Had kind of a break-down this past Tuesday when I got home from a road trip to see my college friends in Nashville...I've gotten rather fed up with the monotony of my schedule. I may see about getting a job some time soon. Anything to break up the monotony.
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Apr 5, 2009 07:35
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Yay I got a job working at a mini-golf/go-carts/bumper-boats/video arcade/laser tag/restaurant establishment!  Also my MRI from a few weeks ago was looking good (though they didn't give many details). I'll think that means "it's stable"... V VIf your anti-nausea med isn't working see if they can get you on a different one. I'm on Zofran and Emend on the day of chemo and 2 days after. I imagine they could do something similar for you?
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Apr 26, 2009 09:20
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I'm loving my job, despite the measly $8/hr I'm being paid. Just the chance to get out of the house, away from anything else, is nice. I got accepted to the kayaking camp and they sent a letter saying that they would be covering me for everything, including airfare!! What a blessing! When I get out of this mess I'm in and start making real money, I'll be supporting their charity for sure. Amazing, amazing people.For chemotherapy (especially with Temodar, from what I understand about it), "no growth" isn't unusual. What could be happening is a survival of the fittest battle in the brain. Some tumor cells are going to naturally be more resistant than others. In order to attack the tumor from all sides, other chemo mixes might need to be introduced. I hope your trip is wonderful, try to relax and enjoy yourself.
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May 19, 2009 06:18
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Nannypea posted:I have been wondering the same thing but add chemo into that. I live in NC and you cannot get any legal cannabis period. I think on the news a while back that there's actually a bill in the NC house trying to legalize medical marijuana...
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May 21, 2009 02:39
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I had my MRI on Tuesday! The scan showed neither growth nor shrinkage for the little bugger in my brain. I can't help but feel a little disappointed by this, but I suppose that stability is much better than seeing growth.  Very much looking forward to going to the beach next weekend for my family reunion--it will be so good just to get away and relax for a week. Congrats for the great news, Nannypea!
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Jun 13, 2009 06:30
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Nannypea posted:Bob Vance Stable is not a bad thing. Which beach you hitting? I'll be at Topsail Beach, right on the NC coast. Nannypea posted: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. Duke buddies!
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Jun 19, 2009 06:41
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Goodness I haven't been on here in forever...I've got my last MRI on Tuesday(in North Carolina, at least), and then I'll be heading back to college! It's been nearly 2 years but it's finally time to head back to Nashville--christ, it doesn't feel that long... Frankly I don't care what the results say, I'm going back to school and if that means I have to continue on chemo or upgrade to a stronger chemo, I don't care. I just can't bear to spend another semester away. I'm down to one chemotherapy medicine (Avastin) and it seems to have been working so we'll see!
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Aug 17, 2009 06:09
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drat it, this wasn't what I wanted...
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Aug 19, 2009 06:08
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Pretty much that the chemotherapy is no longer proving effective, and the cancer is looking somewhat more invasive. That's all I know...I might be getting a PET scan to identify the most active tissue, but that likely will not alter the next step that we're taking.
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Aug 19, 2009 23:33
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Sorry for no being on here for a while... I went back to school in Nashville at the end of August and was having chemotherapy every Friday. Last Sunday I started having headaches and major nausea again, so I went to the ER and the MRI/CT scans shot more recurrence. Needless to say, I left school and now I'm back home. gently caress. My vision is wonky as hell and my hunger is pretty much gone; this is not fun. I'll be starting a new chemotherapy later this week sometime. i can't win this drat fight!
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Oct 1, 2009 13:33
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I'm on day 2 of 14 for the first round of the new chemo meds that I'm on: Tarceva/Rapamycin. So far no nausea, but hunger is still down from the usual (it's getting better though). It's supposed to be good for patients with NF-1, which I have, so we'll see at the end of the month! I got a prescription for Zoloft, so hopefully that can get in my system and make me a bit happier.
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Oct 9, 2009 18:42
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Yesterday was my last day of oral chemo this month! Hurrah! 
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Oct 23, 2009 05:54
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| # ¿ Apr 25, 2024 05:47 |
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MRI DAY!
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Nov 4, 2009 19:45
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