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Old 01-21-2004, 08:59 AM   #1
julie jordan
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I've been treated for brain mets with wbr and continue to have lesions after 6 months. Most have shrunk but the largest at 2.4 cm continues to have fluid around it, along with some fluid in my cerebellum. I've been on 2-4 mg of decadron since Oct., but cannot seem to get rid of the edema. In addition I'm on Navelbine for mets to the sternum and am having lots of headaches, hand and feet tingling and some nausea. All these side effects just started after about 5 sessions, that is 5 sets of 3 weekly treatments with a week between each 3.
The dr is now talking about a spinal tap because of the cont. edema and the constant headach. Has anyone else had any of these problems. I see a specialist in 2 weeks at MDAnderson, but am craving more information than I'm able to get from my local dr.

Thanks,
Julie
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Old 01-21-2004, 10:42 AM   #2
kim
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my mom has bc w mets to brain and liver. had wbr. dr thinks that the tumors n the brain r probably dead cells, but she has symptons like headace, and nausea, and trble w vision and balance when they tried to wean her off the decadron. she takes 4mg of decadron every day to keep the symtpns away. dr has not said how long she will need to do this. brain mets found in sept of 03 been on decadron since then. now on navelbine/gemzar for liver mets. dr said that sometimes these tumors will swell becasue the brain is reacting against something that is in the brain that shldnt be there (the tumors) that is waht causes the synptons. we have asked about gamma knife and he said that maybe down the rd we can try that too.
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Old 01-22-2004, 03:44 AM   #3
Lisa
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Julie,
I'm so sorry you're suffering through this. I can't speak about the brain mets treatments, but I'm on Navelbine/Herceptin/Zometa for liver and bone mets. For the first few weeks on Navelbine, I had stomach issues, bowel issues and feet/leg tingling. All somewhat common. I am taking L-glutamine powder for the tingling and it has helped. I stopped eating gluten for quite a while, took achidophilus and found the right constipation/diarrhea fix (Smooth Move tea by Traditional Medicine). My stomach issues and tingling went away.

Julie, I wish you only the best.

Love and light,

Lisa
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Old 01-22-2004, 11:56 AM   #4
julie
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kim,
I had wbr in July and am still remaining places in showing up on my MRI. I am also having headaches and nausea when I try to wean off the decadron, which I've been on for about 9 mo. now. I'm seeing a specialist at MDAnderson in a few weeks and hope to get some answer. From what I understand the tumors will shrink for at least 6 months, have you been told the same?
What other treatments are available, do you know?
Thanks,
Julie
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Old 01-22-2004, 11:53 PM   #5
KIM
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there is gamma knife .. which ive been told has been successful in completly irridacting tumors of the brain n some ppl. some say that is more successful than whole brain radiaiton and has less side effects. i dont know persoanlly tho, we havent tried that yet. but good luck to you. my thoughts and prayers are with you and your mom.
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Old 01-23-2004, 03:03 AM   #6
Anonymous
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julie,
my mom also has symptons when she tries to come off the decadron. the dr says that he thinks that the wbr killed the tumors but because the tumors are still there, the brain rebels against them and causes the swelling, which causes the symtons. he also tells her that the symtons can fluctutate. she is taking 4mg of decadron daily now, and seems to do pretty well with that. has weight gain from the steroid, and sometimes dosen't sleep well. but it controls her symtons. the dr says that she may need to take the dec indefinitely. at one point when she tried to wean off the dec, she started having nausea and vision prob. she called the dr and he said to go back on the daily dec, and when she did, the symtons faded. i know i ramble alot, but i hope this makes sense.


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