Brain Mets Sisters
Comments
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To nmiller1978, I just finished WBR 2 weeks ago, I also just started the new TDM1/Kadcycla, but I am also expeircing the coming off decadron issues, if I dont take it I have major headaches, my onc wrote me a script for 0.5mg tabs so i can taper as slow as i want, but I have been having to make a decision on feeling like crap or take it...It really does suck. I am going to the doc thursday to try to figure out what else I can do? What herb is it you are speaking of?
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nmiller1978,
Sorry about not being able to go off Dexamenthasone. I'm going through WBR and they started me on 0.5 mg my dose is to help with vomiting. I do take Neurontin 400mg for hotflashes and have used for several years. you might try that. Good luck.
Kodapants
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Thanks for all the responses ladies. Boswellia serrata is the name of the herb. I read about it on several sites including a page from Sloan Kettering. It's mostly used for Crohns and Colitis and other inflammation based chronic illnesses but has shown "promise" in patients with cns edema associated with brain mets and/ or post radiation swelling. My tumor is located in the left frontal lobe right on the premotor cortex which is why I'm now so seizure prone. I guess location and actual brain surgery lower your threshold (in my case, considerably). Anyway, at one point I was on 12 mg of decadron. Felt like a meth addict. I tapered to nothing last Tuesday and had a seizure within 48 hrs. CT showed bounce back edema so now I'm on one mg a day. Can't go much higher than that without major side effects so the plan is 1mg of dex and this herb. The swelling has caused profound right sided weakness so hopefully will have measure able improvement to report soon. PET scan in the morning so off to bed!
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Nicole....email this guy and ask him.
edge@evidencewatch.com
He is part of the nosurrenderbreastcancersurvivorforum.com and he has an Edge CAM that I follow and I take boswellia even tho I don't have brain mets but I have heard of some who have taken it in place of decadron. Give him your history and he can lead you in the right direction. He has given me lots of advice over the last 3 1/2 years. Sorry you have been having issues with edema and seizures.
Cathi0 -
N Miller, I appreciate your revelations about specific anatomy. This is very useful. I'm trying to get a better knowledge of what my reports mean in terms of what to expect. Keep up the good sharing, please.
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Nmiller1978, thank you for the info on the Boswellia. It has prompted me to ask my MO about it and sounds like perhaps it may be a great idea for me, to see if I can get relief and, therefore, get some vision back. I'm down to 1mg per day and I'm trying to get off of the dex.
My husband has Ulcerative Colitis, so HEY, perhaps he will benefit too!
Boswellia all around!
Jill
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Has anyone taken Avastin? I'm told that it shrinks necrosis and read that it slows down progression in metastatic bc. SE are very high bp and hemorrhage.
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Hello ladies,
I am on day two of my first dextox week from Xeloda. 7/7 schedule.
Today I hit a wall physically and then had a "spell". I had a hard time finding my words, would alternate laughter and crying, I felt like I couldn't move my arms. Sort of slow motion and my tongue felt numb or slick - like plastic.
I am slowly recovering. I will call my MO tomorrow and told my DH to drive me to the hospital, if it happens again.
Anyone have this type of thing happen? Thanks...0 -
Karen,
I think you should call the on call onc or go to the ER. Better to be safe.0 -
Hey ladies, glad my experience may be helpful. I think that's what we all strive for here. K- lo hoping my info helps. Jilly, glad to hear about the boswellia! Did you get a recommended dosage? I'm currently taking 1350 mg of bos and 2 mg of dex. Also, I did avastin for 10 months with taxol. Risks sound way scarier than they are at least iny case. I wound up with elevated blood pressure but not dangerously so went from 120/70 to 195/90. It took about 6 months to return to normal. Avastin was a miracle for me. Put my liver in remission after three months. It's never shown up again. Had a scan Tuesday and no activity anywhere. Liver clear brain tumor completely dead, HOWEVER .... Two hot spots showed up on my scalp. Wtf??seeing onc tomorrow to "clinically correlate". Honestly? After liver mets and a brain tumor, bring it on! But seriously jilly, avastin was easy and it worked!!
Love & prayers,
Nicole0 -
Karen,
Best case scenario you have medicine SE's or dehydration or something. But it isnt something to ignore.... anyone of any age should see a doctor for these symptoms.
(Old retired nurse and I can hear the ghosts of many doctors saying "get checked"
Hope its the meds, etc.
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Thanks ladies!
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Dearjilly - regarding Avastin, I had great success with it and didn't have any of the scary side effects. I'm an Avastin evangelist, but I'm not sure it is helpful with brain mets (??). It was a miracle for me, just like Nicole...my bp went up a little, but still completely within normal range. My cancer shrunk considerably while I was on Avastin and I'm hoping to use it again in the future, though there are big questions about whether insurance will pay for it.
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Here's a bit of good news regarding my brain mets...I had a follow-up brain MRI on 4/18 and it showed all my mets continuing to shrink when compared to the 1/22 MRI and there were no new lesions! I had 10 WBR treatments in the middle of November. So hang in there, ladies!
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Go Michelle, Go Michelle, Go Michelle!
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Oh my goodness. Thank you ladies for your help. Just recently discovered a 1 cm lesion in the lining of my brain (after mets to bones and lungs already) and in reviewing your posts am realizing I still have so much learn. Meeting with the radiation oncologist on Monday to discuss possible treatment options. At this point, all I've heard is up to 30 radiation treatments (5xweek for six weeks.) Given your wide range of experiences, feeling even more apprehension, fear, and completely overwhelmed. Here's hoping against hope that I can survive yet another obstacle toward longeivity and quality of life. Here's hoping against hope that this headache (which has taken over my life for the past seven weeks) actually goes away. Can't wait.
Gentle hugs to all who require them today.
and thank you, all of you for sharing.
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Maka, I don't know where you live but from everything I have been told, by several experts, if you only have one lesion, you should be a candidate for focused radiation: gamma knife, SRS, something that only hits the one spot. Any chance you can get to NCI Accredited center?
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Nicole, I really can't believe this herb. Spoke to MO about it and she gave me the go ahead and said 400mg per day. I took one yesterday and 2 today at 333 per tab. I took the extra today because I was starting to get a headache. Guess what? It's gone! yipeeeeeee Now I am more hopeful with this herb. I am back up to 4mg of dex though, as per my rad onc. I was not having a good day on Friday at my appointment, because of my vision, so the doc recommended to go back up. Right after my appointment I went to the health food store, and bought the Boswellia Serrarta! My new best friend!
Thank you SO much for telling us about it.Now on the to Avastin. I asked my MO. Apparently, it's not approved by FDA in the States or here in Canada, eh? SO, I'm not too sure what to do. I may go on Lapatinib, if I have progression. If not, my MO doesn't want to put me on a "toxic" (that's what she called it) drug if there is no reason to. However, what if Lapanib works on me and if there are little cells (hopefully not) that could be cleaned up by this drug and does the trick!!?? Perhaps I can still ask for it, but for how long? I dunno? Argh! all these darn questions. Thanks for the Avastin info my girls!
As for you Michelle....yay on the good news with the liver and brain, and what? on the scalp news. Where abouts is that? is it forsure "something"? will they biopsy?
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Karen, what's happening now? Did you get checked out?
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YAY MICHELLE!!!! great news sister! big hugs!
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Nancy, thanks for the info. So what happens if it's not FDA approved? Do you know? Will I have to buy it on the street?
Some of these drugs are hard to find. Holy loop hopping!0 -
Maka - I am on board with Kathy. SRS/gamma knife/stereotactic radiation (whatever they call it) would be something to look in to.
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Sorry for all the posts. I am on the dex, and you know what that does to you. There is smoke coming off of my keyboard!
xoxo Jilly
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Dearjilly - my MO said he didn't think it was cancer, because I recovered (although I've read symptoms can come and go), he doesn't think it's the Xeloda, or a stroke - but told me to take a low dose aspirin to be on the safe side.
I have a lot of fun things planned in
the next week, I figure I can wait until I see him on the 8th to talk about it.
Thank you for asking!0 -
I started having symptoms back in February... dizzy, nausea, headaches, bad vision that comes and goes in left eye. I have my left eye closed to read the screen. I had an MRI but it showed nothing. I have not had seizures, but enough symptoms to be concerned. I think they want me to see a neurologist next. Could I be catching this early, that doesn't show up on MRI, or is it just in my head?
Mellie0 -
Hey girls,
Sorry for not posting. Im right handed and that side of my body's not working so well right now. On an awesome note saw the onc Friday. He examined my suspected scalp met sites and all clear! Apparently, and this is important girls, I failed to mention brain radiation on my PRE pet check in form. Was having a hard time writing and ran out of room ;-) the 'scalp mets' were the drill holes from the SRS frame!!! Since having seizures my neck has been bothering me so I've been laying on a heating pad quite a bit. The added heat was irritating the pin sites. Scared the crap out of me but good to know & will be much more vigilant about filling out that form next time!!
On a less fun note, weakness is not resolving. So while everything is apparently NED in cancer land, I have a ton of scar tissue from surgery, radiation and now seizure complications. Basically: brain crud. So although there's no active cancer, I have every side effect as if Ido. We're up to 3mg of decadron and staying on the boswellia but so far no earth shattering improvements :-( Starting PT Thursday but if that doesn't restore some motor function I could be looking at another brain surgery. Risk vs reward right? Anyway, this post is overly long and I suck at left handed typing. Hope you girls have a great week.
Love & prayers
Nicole0 -
Dearjilly - regarding Avastin, again, I'm not so sure it is used for brain mets (?), so might be a non-starter. The benefit I got from it was on my liver, lungs and bones. As for the FDA, it is not approved for use in metastatic breast cancer, but is approved for use in other cancers. You can probably get it (no doubt most cancer centers have it in stock), but insurance won't pay for it if you have breast cancer. I'm not sure how that translates in Canada, but in the US we refer to this as "off label usage".
Nicole - sorry about the brain crud. You did well for typing all that with your left hand! Could you possibly get Dragon installed on your computer? I have it at work and it is pretty amazing.
Maka - I agree with others that with one small lesion, you should be able to have gamma knife or cyberknife or some other targeted radiation that pinpoints the one spot. Hopefully that's what they will recommend. Sending warm thoughts your way.
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Has anybody heard if TDM1 crosses the blood brain barrier? The pharmacist at Genentech didn't know.
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It does not cross the bb barrier.
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Ok, anybody out there with radiation necrosis experience?? Thinking that's what I'm looking at. PET shows no background uptake but MRI shows slight (1-2mm) growth and slight increase in edema. Time frame, symptoms, they all fit. Right now neurosurgery says it could be something, could be nothing. Repeat the MRI in four weeks. Sigh. It's always something isn't it? Anyway any experience would help! Give me a shout out if you have any.
Love and prayers
Nicole0
