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Thread: 5/28 Temodar How bad does it get

  1. #11
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    Sorry, I just reread your post-- I had missed you said that her surgery was in August. So yeah, it seems like a long time for this trouble to be related to the surgery.

  2. #12
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    Thanks for the replys, we did find tonight that she can indeed drink Ginger Ale. Now to see how it affects her stomach. Today so far she has had two sausage patties (no idea why she can tolerate these), a few almonds and some orange juice. The doc called in a script for prilosec so perhaps it will help in the next few days and she has the Pepto Bismo tablets for now. She is a bit less lethargic today and her speech is stronger. She has an appointment with the doc next week perhaps more can be done then. She tolerated the Temodar during the six weeks with radiation pretty well and ate decent for most of it. I'm wondering if the N.O. didn't just give her too high of a dose this time or if she needs the steroids to keep some of the side effects down.

    Also Knightly she does have Xanax but only takes a half of an mg at bedtime and it knocks her right out. Before the Temodar she could take the full 1mg and still not sleep well, I think it is affecting her more because she is not eating and she is already experiencing fatigue.

  3. #13
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    Glad to hear she can tolerate the ginger ale. No idea why she can handle the sausage but hey, why question a good thing? It's a good source of protein. I'm glad to hear she's doing better. The Temodar may be hitting her harder this time around because they tend to significantly up the dosage over what she was talking during the radiation; as I noted, they doubled my dose. If I were you I would definitely discuss this with her NO and see if you can't improve her quality of life without a significant impact on the efficacy of her treatment. It might be that she just needs some more time to adjust. I'm coming up on my fourth cycle and each one's been a little easier to tolerate. Last time I didn't even lose my appetite.

    It sounds like the Xanax is amplifying what fatigue she already feels, but that's not necessarily a bad thing. I used to take Xanax for the duration of each cycle but once I stopped taking it I would suffer extreme fatigue from withdrawal. During my third cycle I skipped the Xanax entirely and didn't feel quite as tired, though I honestly couldn't tell you if that was due to cutting out the Xanax or adapting to the Temodar. Probably some of both.
    31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
    I maintain the Ramblings of a Traitorous Mind blog as a chronicle of my battle with cancer and my related reflections.

  4. #14
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    Today has been a lot better. She has eaten more, even had a bratworst on whole wheat with mustard and ketchup this evening. I guess either she is getting over the Temodar or the Prilosec worked. Whichever I am grateful. She weighed in at a whopping 112lbs today. Hopefully round II won't be as bad. Thanks for your encouragement Knightly, I hope and pray for your speedy recovery.

  5. #15
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    Update
    Friday and Saturday she seemed a lot better. She was eating a lot more and Saturday we even traveled 3hrs to my sisters for a belated Xmas. Saturday night we watched a movie, Dick Clark and Youtube videos and didn't hit the sack unit 2:30am. Well yesterday she didn't get out of bed until after 6pm though I started trying about 11am. She went back to be a midnight and is still sleeping strong now. It does seem the prilosec really helped with her stomach but now if the Doc will just prescribe something to help deal with this sleeping thing.

  6. #16
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    Sounds like she's eating better than me! It's great to hear that she's doing so much better. I hope it continues, and if she has a bad day or week in the future try not to worry too much. There's a reason they call these "cycles."
    31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
    I maintain the Ramblings of a Traitorous Mind blog as a chronicle of my battle with cancer and my related reflections.

  7. #17
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    Today was doctor day. My GF is doing a lot better so far but next week is the start of the next round of Temodar. She is pretty much living on sausage patties, pecans, almonds and orange juice but last evening she had a bratwurst on whole wheat and a waffle with syrup. Today she even had a vanilla milkshake. After talking with the N.O. she added 2.5mg of olanzapine (zyprexa) telling us that they had had good results with low doses combating nausea and fatigue. She also has a plan B if things don't go well again. Hopefully with the prilosec and zyprexa this time will not be quite as hellish as last.
    Last edited by Ken46130; 01-06-2012 at 01:46 AM.

  8. #18
    Moderator Top User jpearson's Avatar
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    Great to hear the news about your girl friend. Glad that she is able to be eating better.

    josh

  9. #19
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    Update, well this time around things have been much different. She completed the fifth dose on Thursday. So far stomach upset, pain and fatigue have been pretty minimal. The addition of zyprexa and prilosec seems to have done the trick for now. I was worried a couple of times that the stomach pain was coming back but it did not continue. The N.O. said there was a pill she could prescribe to coat the stomach and I think if she is going to up the dosage of Temodar then that will be necessary.

    The metal taste has not gone away though and she is living on sausage patties, shredded cheese, pecans, Little Debbie oatmeal pies and nutty bars, ginger ale and orange juice. She did have a milk shake from Steak and Shake a couple of days ago and a vanilla coke last evening. She has tried several things but isn't really finding much that she can stomach the taste of. On the flip side though her weight has climbed up to 120lbs so that is good.

    Thanks for all of your replys and encouragement. Although she doesn't post I read her all of mine and your reply's as well as other posts I think she will be interested in. She has been going through this since 2002 and has a wealth of information she could share if I could just get her to post on here. She does have a serious language / communication impediment after the last operation so she really doesn't write much and I often end up being her voice.

  10. #20
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    Please tell her I say "hi" and send my best wishes. It's great to hear that she's doing better. My nutritionist told me to eat lots of protein and calcium to help repair the damage, and it sounds like that's what she's getting with the sausage and cheese. I hope she continues to improve.
    31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
    I maintain the Ramblings of a Traitorous Mind blog as a chronicle of my battle with cancer and my related reflections.

 

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