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Jenny G


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Hi Jenny,

Do you know when you're brain radiation will start? My radiology oncologist wants a bone scan and chest scan before I start. She says it will take a couple of weeks to get me in and 2-3 days for her to get results. So I'm back in waiting mode. Apparently my brain scan and chest x-ray were clean.

Please let me know how it goes with the radiation, I'm really quite anxious about it, so would appreciate any input you have. Thanks!!

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Hi Janis,

Your doctors are even driving me crazy. This waiting is just too much. Great news about the other scans though. I met with the radiologist on Wednesday. We discussed the dosages since it seems to me no one has decided the best way to go as far as how much for how long. He wants to do 10 treatments of 2.5 Gy each, but there is a range of variations. They did a "simulation" that involves a scan then they took a piece of plastic that looks like plastic canvas with the holes in it and they got it wet and warm and stretched it over my face to make a mask. I totally didn't expect that and it was strange, but you can breathe just fine (the holes get bigger) and it molds to your shape. I guess I will put this on each time to keep me still and in the right position. I confirmed that I will indeed lose my hair again, but when I asked about the 10% that I've heard never grow back, he said he'd never seen that happen. My first treatment will be on Tues. the 26th. He said it will take about 1/2 hour because they will do some xrays then I will go for the next 9 business days (Labor Day off) and it will only take about 5 minutes each time. I really like my doctor and I feel pretty good about this even though it is a mixed blessing. I had found a study that suggested 18 treatments of 2 Gy was most effective, but he said he finds people get tired with that many, He also mentioned something about financial incentives to do so many... but what he suggested seemed like a good compromise to me, I really didn't want to do 18. The recommendation is 25-36 Gy given in 2-3 Gy daily fractions. As far as timing, it is best to do it soon after completion of chemo and radiaiton and best not to wait more than 6 months. I hope you can find something to distract you while you wait for results. I'll be thinking of you.

Jenny

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Thanks for your reply Jenny. You're always so informative, it's wonderful. Anyway the dr said after my last visit she took another look at the CT scan report and wants to review the scan with the radiologist. There was a shadow on the brain that the radiologist thought was dead brain cells, apparently quite common in older people (like me). That according to my gp. She may decide I need an MRI so now I'm all freaked out again. What is the treatment if there is something there, do you know? I should have asked her but my mind was kind of racing, so I missed my opportunity. She is supposed to call me on Monday, so I guess I can ask her then.

Thanks again for your info.

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I think if there is something there they would probably do the same thing anyway. I don't know much about gamma knife, but that is something else that can be used for brain tumors. I don't think we should go there though. It's strange that I also had a "spot" that was not cancer. Never thought about it being dead brain cells, but that makes sense. They said they thought it was from an old trauma. Well, I'm thinking of all the times I've been hit in the head in childhood and things like that, but when I talked to the radiologist, he said no, not that old. He said possibly a mini-stroke and that if I hadn't had the MRI I probably never would have known about it. This has me freaked out too and not knowing what to do about it. The person that read the MRI and noted the spot said it should be followed up on in 3 months. My medical oncologist didn't even talk to me about it and I only know as much as I do from quizzing the radiologist. They were supposed to order a comparison to my original MRI from when I first started treatment to see if it was there then. This was at my request. I was so focused on the cancer that I didn't give this spot much thought until later. I don't have much faith in my gp and don't know whether to find another gp or go to a neurologist, then I think I'm just over reacting and being paranoid, but I am curious. Anyone else had anything like this? I think we have enough to worry about and I don't think we need to worry about this too, but I would like more information.

Jenny

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They would do the same thing if any brain mets are found- at least that's what my dad's Radiologist said. He has one small spot on this left lobe..(Got the mask, like Jenny) and has had I think 10 of 18 treatments. He is completely wiped out as far as being extremely weak and tired and his hair began falling out two days ago. We were told Gamma Knife would be an option if anything ever came back.

Jenny, I think it is wise to have only 10 treatments. Compound that with the fact that you are young and pretty strong as you start this, you are going to SAIL through this. I know it!

Newbie, Keep us updated.. We are praying for you.

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Katie,

Thank you for the feedback. Probably the main difference is that if something is there then they have something to aim at and may do a higher dosage. I hate that your dad still has so many more to go, but it will very likely get rid of it. Add this to the chemo and no wonder he's so weak and tired. I think my treatments will go by quickly and I've already planned to work shortened days to get more rest. Thank God for an understanding boss. Katie, I hope you're getting enough rest too, I know how worried you are.

Jenny

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Jenny!!!!!! How wonderful yu going to be in remision!!!!!!!!!! WOWWY!!! I am thrilled for you!! I too would make sure that the spot was on the old scan as well, just to definitvely rule out the "c' word. I am sure it is nothing, but better to be safe than sorry.

Jonathan

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