Brain Mets Sisters
Comments
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Any comments about taking Namenda for brain rads?
How are/were the SEs for you, and what did/are you doing to cope?
I'm starting on Sunday, titrating from 5 mg/day to 20/mg per day over a period of 3-4 wks.
Yep, the fun is just beginning 😂
Thanks in advance for any tips
L
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Lita, I did some looking in older posts on the brain mets thread about the Namenda. SusaninSF had WBR 3.5 years ago and had a head full of lesions herself. She took Namenda herself for at least two years, not sure if she is still on it. No side effects for her from the Namenda, and overall her memory is OK, she just writes things down if she cannot remember or puts it in her phone. There may be more posts about it if you go further back in this thread. SusaninSF may see this and chime in at some point herself.
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Thanks...I start the titration upward from tomorrow,
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Valerie Harper was Dx'd with leptomeningeal mets from metastatic lung cancer a few years ago.
She's STILL alive at age 78.
This brings hope to us all.
Stay strong, my sisters!
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Hope is how I cope. I don't worry about the future, memory/cognitive problems simply because I could never be happy. I won't let survival stats, studies about WBR memory loss etc hold me back. If I get up and feel good, it is a good day. I can't change the future, just how I handle the future.
Having said that, I still have my sad/scared days with tears but they are fewer as time goes. Fresh news of progression etc would probably send me back to the initially scary days.
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Lita i think you are doing e/t right. Nemenda is definitely a thing, by reading through the net.
Gramen again, this procedure seems very promising, I am not sure there is a right answer. Go with your gut, if the doc is reputable...
Lita and to all, the Brainmetsbc.org, is quite an interesting place to visit, for info and others experiences..
I bookmarked this a while back, it may be interesting right now. https://www.cancer.gov/news-events/cancer-currents...
And Susan so nice to hear from you, i was literally thinking about you last week.
Cheers to all
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Yes, Mom, I have checked out brainmetsbc.org already. Quite helpful.
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Hope you all are doing well!
I had a brain scan yesterday and it remains clear. My next scan is scheduled for March. February 2018 will be my 3 year anniversary of my brain met discovery and craniotomy. Day by day we go.
Much love to all
Carrie0 -
Glad to hear it Goodie. I have MRI for the brain. Making sure the part of my brain met that could not be removed has not grown. CT scan on Friday for mets check from the neck down. I am fairly confident that I am fine but will probably not hear anything til October. I don't mind. I will worry if I am told to come in sooner.Will post my results.
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Glad to hear it Goodie. I have MRI for the brain. Making sure the part of my brain met that could not be removed has not grown. CT scan on Friday for mets check from the neck down. I am fairly confident that I am fine but will probably not hear anything til October. I don't mind. I will worry if I am told to come in sooner.Will post my results.
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Goodie that's fantastic!! Thx for sharing.
Mara keeping fingers and toes crossed.
Lita praying with you!!
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Goodie that's fantastic!! Thx for sharing.
Mara keeping fingers and toes crossed.
Lita praying with you!!
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Goodie that's fantastic!! Thx for sharing.
Mara keeping fingers and toes crossed.
Lita praying with you!!
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Fingers crossed for you to receive a clean report too, Mara!
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Thanks. Wish these could be done without the IV contrast dye. Can always count on being sick as a dog vomiting for a few hours. I do take antinausea meds too but they make feel ill too 😛
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HI everyone...just checking in.
Today I go off for my 4th WBR session. I'm feeling a little weakness on my left side and starting to slur my s's a bit, so I don't know if that's the rads or more brain met progression. We shall see.
Good luck with the scans, Mara!
L
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Thanks Lita. Fingers crossed because if still stable will move to 6 month increments.
Mention your weakness and slurred speech. Radiation can temporarily cause symptoms. Steroids can be tweaked if that's an issue.
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I'll keep that in mind. I'm trying to stay low on the steroids, but I have jumped up a half a pill when I felt I've needed it here and there.
Thanks,
L
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Catching most of The Last of the Mohicans with Daniel Day Lewis.
Nothing like a classic to help one forget all this shiz.
Great acting in this film as well. Wes Studi, who played the cunning Magua, was robbed of a supporting Oscar nomination back then. Such a powerful performance. You find yourself almost rooting for the warrior.
# 5 WBR session to go...I'll be half-way thru 🤓
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I agree about movies being a great escape. Glad you enjoyed it
Halfway done with rads is great. The goalpost is almost in view.
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Congrats on being halfway to goal, Lita! Another alternative to steriods is Boswellia. My neuro onc recommended it. It's an herbal supplement that helps reduce inflammation and swelling. I've been taking it since my craniotomy as I believe it helps with the joint pain SE from my arimidex too. It might be worth talking to your MO about. It has no interactions with my arimidex nor my keppra.
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Just finished my WBR #20 on Monday. Traveled to Columbus Ohio for 2nd opinion at the James Cancer Center. Was very pleased with the Neuro Oncologist whole told me my Doctors here in Kentucky were on point with my treatment. He wouldn't add or change anything. We talked about LM and looking at my scans he doesn't feel I I have that but gave me a list of symptoms to watch out for. I feel pretty good after my radiation. Have not had trouble with appetite but some things taste funny. I do notice some short term memory loss but not significant. I am 65 lol😁. I have read 2 more novels this week. I really enjoy my books. I do have episodes of fatigue. I just rest and then I am good to go. I have a lot on my plate right now. Sold my house bought another not looking forward to moving. Has anyone been told after brain mets would never be able to drive?
Praying for you Mara for good results!
Hang in there Lita it will be over with before you know it 😁!!!
Wand
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Wanda, there are a few women in my "live" metastatic support group, and thanks to various Rx's, they have now been cleared to DRIVE!
One woman has to take Rx for seizures, and it's listed on her modified drivers license. I'd check with your RO or Neuro onc first, however.
Glad to see you posting!
Oh, moving is SUCH a pain. I'll be praying for your strength thru all this.
Goodie, can I get boswellia at WHOLE FOODS? I haven't really heard of it. I'll ask my RO about that, too.
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Wanda, I second Lita, good to hear from you. You are certainly doing much better than I was after I finished WBR. Reading is great if you are able, will definitely speed recovery and you are already doing much more than I was capable of. I am so happy for you. Moving and everything will take a lot out of you but you are doing the right thing by resting when needed and keeping busy when able. That is great. Your memory will improve in the next couple of months. My short term was terrible at first but much better now. You may notice tinnitus for a little while. If you get it, take a couple of deep breaths and it goes away. The tinnitus should go away on it's own. You have done really well and you should look forward now.
Lita, Boswellia is definitely something to look into as it does reduce inflammation, with oncs blessing. It is a popular supplement. My joints did improve while on it.
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Lita your reading materials will help you a lot. What dosage is everyone using of the Boswellia?
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When I took it, I took 3 x 300mg tablets per day. This was done taking one tablet at morning, noon and evening. I did not take it after 8 to 12 weeks since I noticed an improvement in my joints. Since then, I just take the odd ibuprofen. I would only go back on it if pain returned.
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thanks a lot Mara, she's quite petite and weighs only about 85LBS, it does not matter the weight with the dosage? And should I get it on the internet? Or at a Health Store?
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I have not heard that weight affects dosage. I would recommend to check at a health food store or naturopathic doc before starting her out to make sure weight is not an issue. These may be more natural remedies but they can be as strong as actual drugs. I tend to be more cautious.
My niece got mine for me. Not sure where she purchased them from though I am aware amazon sells them if you search.
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will do thanks Mara
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I take the same dosage as Mara. I order mine from Amazon as I don't have access to a local whole foods. I have seen it sold at GNC too. I've continued to take it to combat the stiffness/soreness from my arimidex.
Good luck to all!
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