Hi Jeaniet,
There is a lot of good support here. I haven't had WBR, so I can't help you with the questions, but I'm sure you'll get all of the info you need from here. Good luck. I know these procedures are no walk in the park, so I'll send you some calming vibes during treatment. Take care and let us know how you are making out throughout. Have a great trip! Jill
Hello Braniacs,
We met with the briliant neuro-Oncologist here. Main answer to me is that WBR is the thing to do right now. No chemo trials etc. But he also said there is no urgency about it.
Now, among these doctors, WBR is a one time thing. In other words, the 10-15 sessions, and we don't repeat WBR ever.
BUT he told us something new: If / when new lesions pop up, they can repeat targeted Radiation. SRT, gamma, linear accelerator, whatever you call it. So it is like a clean slate (hopefully) after WBR.
Wanted to share this surprise (for us, anyway) with yall.
Thanks for that info, K-Lo. Good to know. I haven't read all the pages on this thread--or if I have I've since forgotten 
--so don't recall if anyone has had WBR done more than once, or had a radio-onc advise such.
OT: I forgot to take my afternoon ritalin today and so came home from work, hit the couch, and slept from 7:30 to 11:30. I just wanted to lie down for an hour before watching Foyle's War but slept right through that and everything else. Missed dinner and don't want to re-re-heat the leftovers so it's on to dessert!
Surly, way to rest when you need it! (love Foyles War)
Apple had WBR twice.
Kathy,
I have received similar info. WBR will not be repeated but targeted radiation can be given multiple times.
I love Foyles war too. Pity there are no more seasons.
Jeanie,
Good luck on WBR. Hope it goes well for you.
I'm a Foyle's war newbie so have a lot of viewing ahead of me. But I'm only catching episodes on public television right now. Unreliable airing (and I'm an unreliable viewer) so might need to order Netflix.
Jeanie, I wish I could offer you some advice on your treatments, but I'm sure you'll find a lot of answers here. Good luck with WBR. Come back and let us know how it's going.
S.
Hello Ladies,
Looks like I am joining the group here. Just dx'd friday with multiple brain mets, largest being 3 cm. I'd like to say I'm shocked but I wasn't. I was having some symptoms that as the weeks went on I knew were not just really bad migraines. I am scheduled to get my mask done on Tues and start wbr sometime in following few days. The doctor wanted me to be off Abraxane for at least wk, so that puts me at starting Wed or thurs.
Here's my ?'s
1. Do they check the progress as they go?
2. For those of you who have gotten rid of your brain mets, where they gone right after you were done with wbr or were they still around and kept shrinking?
3. I am currently on Abraxane, herceptin and tykerb. I know I have to be off or Abraxand and tykerbe during this but am unsure about Herceptin, has anyone stayed on Herceptin during wbr? I still have mets in liver and lungs so would feel more comfortable being on it but of course if I can't take it than I can't.
4. For those of you with symptoms before wbr did they clear up after wbr? My vision is a bit wonky, I have to really concentrate on things, feels like I am in a bit of a fog. My left side is also a little weak. I can live with all of that except for the foggy feeling.
Thank you all in advance for any info.
Angie
Hi Angie
Just a small contribution, out of order.
I'm triple neg so no Herceptin etc.
I had wbr about 2 weeks ago. Went off Abraxane only a week before because they acted really quick on the brain rads, and my doctor had me back on Abraxane the week I finished wbr. She was so keen because it had just got me to NED in my body, and I was a very healthy person otherwise.
Symptoms were being unbalanced and walking into walls. Scan showed more than 5 tumours, the largest 2cm.
Rad progress takes time after treatment, so I will meet with the rad onc after 3 weeks for a chat, and have a CT or MRI about 6 weeks after that. I want to know now, but the reduction in my symptoms tells me it has done a lot, and the scan will show what's left to mop up. My original symptoms have gone, but I expect some residual stuff to show up that's not yet symptomatic, and the need for targeted rads later.
Side effects of wbr for me are hearing reduction, hopefully temporary, no pain, just a feeling of being underwater. I am still very tired, and the skin on my head is very dry so keep up that moisturiser after the treatment.
All the best. I am so sorry that you have to join us but pleased that you have found the best place.
Cheers,
Angela
Angela,
Thank you so much for the info, put my mind at ease. It sounds very doable.
So sorry Ango74 that you have to join Brain mets club. I was diagnosed 2/26/13, Brain surgery to Cellubellum in 3/13 and plan WBR next week for 13 tx. Hope all is well to you and to all Brain Cancer Gals.
Kodapants
Dear Angela,
Thank you for sharing so much. May I ask more?
The tx's are every day Mon-Friday I guess. Were you able to drive yourself to and from during the entire process? At any point did you feel you should or could not drive?
Thx again
Hi K-Lo and others.
I had 10 wbr and 2 boosters over the cerebellum over a 3 week period, so nearly daily.
When I met with the doc to plan the tx, he said he didn't think I should be driving already because my symptoms were lack of balance. In Australia the law only requires that I not drive whilst undergoing brain tx. I drove home and parked the car.
I think I would probably have felt ready to drive during the tx because my symptoms eased so much, but wouldn't have because the doc and i would have been liable for accidents, and i'm sure my insurance would have been challenged. i think I would certainly have felt up to driving immediately after tx.
Unfortunately I have been diagnosed with leptomeninges cancer, the disease is in the lining of the brain and spine, and I am having scary progression. Nothing is the same any more, so I can't really advise.
I can say that I have followed you on this thread, and am aware of your reluctance with wbr, so wish you all the best with tx. I do have annoying deafness as a consequence, it really can be a pain, but given i am fighting to live, I can put up with saying "speak up!".
P.s. I love the new photo
Cheers to all
Angela
Angela, I am so sorry to hear that you have Leptomeningeal carcinoma. I was diagnosed in November 2012 with that as well, and apparently it is becoming more and more common. There are new drugs that can pass through the blood brain barrier, one of them Xeloda, which you were on before. There are others as well. I had an MRI in March showing that the cancer was shrinking especially the Leptomeningeal carcinoma, so I am hoping that there will be a medication for you that will do the same thing. I have done a lot of research on this subject as there are many different names for it, and all the information is quite outdated so do not look at the stats. My Oncologist is predicting that lifespan may even pan out to 5 years for me instead of less than 12 months which is everywhere on the internet.
Sending you hugs and prayers
Mandy xox
Mixed reaction. Horrible to hear Angela has advanced dz. Yet our group sharing is the only place where we hear better survival stories for the scariest stuff.
Long time ago, my MO said she would give Herceptin even tho I tested neg. Angela, Any chance you can get them to hit the brain (directly or indirectly) with Herceptin? She recently told me one does not convert to Her 2+. Im gonna research that.
Just found this: (not heavilyvetted)
Notion of Using Herceptin Only for HER2-Positive Breast Cancer Challenged
Feb. 26, 2013 — New research from the University of Michigan Comprehensive Cancer Center finds that the protein HER2 plays a role even in breast cancers that would traditionally be categorized as HER2-negative -- and that the drug Herceptin, which targets HER2, may have an even greater role for treating breast cancer and preventing its spread.
http://www.sciencedaily.com/releases/2013/02/130226135109.htm
K-Lo, I am hoping to enter a trial that uses hercepton and navelbine on her2- who have her2+ circulating tumors. I have been test (by simple blood test) and my tumors are her2- however my circulating tumors are her2+. Maybe you have the something going on?
GOSH! Frapp I dont know what to think about my MO. But they say no trials here and they dont look for trials elsewhere. Do you travel for the trial drug? I dont know if I have the energy (NRG) but you sometimes you GET the NRG!.
Kathy - you can check clinicaltrials.gov on your own. You may find something that you would qualify for.
Thx LuvRving-bunny.
I guess I thought this big research center would help patients weed thru the studies. I'm medically oriented and its difficult for me to process the inclusion/exclusion and other medical criteria. But I'm trying, Just emailed Belgium.
I go to Dana Farber in Boston. It's a two hour drive for me but I find it so worth it compared to the smaller hospitals that are around me. Right now I am driving there every week. It is very tiring but both the people and the level of their abilities are worth the drive. I am treated like a member of their family that they care about. I feel like my Mo is knowledgeable and I was the one that brought this trial to her after reading a post on BCO. She found that they were offering it and had me tested. I don't know when I will start as I had a bit of a set back with being in the hospital, unfortunately. But I find it interesting that our tumors can be her2- while the circulating tumors are her2+.
Thanks Kathy
I see my regular onc on Tues and will definitely grill her.
My original tumour was very very slightly Her 2+ . So low that we had to fight Medicare for Herceptin, but we won and I did Herceptin for a year. Since then I have been TN, but we have not tested the brain stuff, just quickly radiated the growths.
I am set to have regular style chemo (vein/port not ommaya reservoir) but have not read of anyone on here doing that. It is still last ditch efforts, and I can't recall the drug (probably carboplatin). Will check on Tuesday. Not advised to do Xeloda. I had it a year ago and progressed in body but will again grill my regular onc when I see her.
Thanks for keeping me going. It can be easy to just sit back and let it all happen to you, which I have never done but am very willing to do soon as this progresses. I want to enjoy my limited time positively, and not be stressing about finding new treatments. But I am desperate to see my daughter's school musical, in which she is the lead, and that is in 4 weeks time. I think I'll do anything for that, so finding the resources from you ladies gives me hope and fires me up again.
Thanks all. I will let u know how I go.
Cheers,
Angela
Angela - I had whole brain radiation in November and I've been doing chemo ever since. Carboplatin didn't work for me but Gemzar has been fabulous! I don't consider it a last ditch effort as there are still many chemos I've not had. You should have no problem making it to your daughter's musical in four weeks. Keep the faith!
Thank you so much. I feel stronger already
xxx
Hi ladies, I have a question for you all.
Did any of you loose some vision from brain mets?
I have lost my whole right side vision now, and I'm scared that I'll loose it all. That's my fear.
I know that the brain can work in great ways, so I am hopeful that perhaps I will even regain some of it back. That would be awesome.
I just wanted to see if there is anyone out there that lost vision and regained it back after radiation?
Before my SRS in Oct. 2012, I had only perifpheral vision loss. Now, 6 months later, it's worse. The docs don't know if I have necrosis or regrowth yet, but apparently, if it's necrosis it can shrink again.
Anyone have any advice or thoughts?
Love Jill
Gee, Jilly, thats scary. I assume you've been to an Ophthalmologist? I have had eye mets and had them treated, is why I ask.
Cannot report any loss of vision. If retina etc are intact and tumor free, I will be waiting and hoping with you.
Hi Kathy, thanks for getting back to me. I did a visual field test yesterday and my vision has gottenw worse. I see the eye doc next week to chat. I'm currently on my way to the radiation oncologist to ask questions about my vision.
I really want this darn thing to shrink, then perhaps, just maybe I'll get something back with my right side. I hope and pray. I also say "squishy squishy" and squeeze my thumb and finger together and pretend I'm squishing the met/necrosis to nothingness! 
. Then I giggle a bit. Silly Jilly
I just finished 10 rounds of WBR last week, and never had visual problems, that would be really scary. I am so sprry you are going through that. Please keep us posted on here!!
Jill, I haven't started my wbr, that is starting next week. However, I do have visual disturbance just from the tumurs. Somedays are better than others. I am also in the eyecare business and have worked for opthalmalogists. I have seen some peoples vision effected months and months after treatment. I have seen it get better after time. I hope this is your case. Let us know what they say.
How are you doing now Stephanie? I will defo keep you posted on my vision.
Ango74, OMG, thank you for saying that. That gives me even more hope that it is possible that things will get better. I'm always doing eye tests all day. I don't want to give up on it. I am going to see if I can do some cognitive or occupational therapy to help. You just never know what can rewire in our brains.
The doctors all say that I should expect the worst, but still have the hope. They can't say for sure, but the tumour was located right in the optic tract. Thalamus. Right side, and affecting my right vision.
Thanks so much for the talk.
Let me know how you are all doing.
Jill xo
Hey girls,
Anybody have any info on Boswellia for brain swelling? I've read a couple articles but wanted some real world input. Had SRS in November and have had issues with swelling ever since. Now every time I attempt to taper off decadron I have a seizure. Have had three so far, each one four weeks apart. Not fun. Scans show the same thing, tumor stable, just a lot of edema. I'm one of those people who reacts TERRIBLY to decadron so neuro onc gave me the go ahead to try this herb.. Anybody with input?
nmiller1978,
I am anxious to see the responce to your question. I too am on the dex and it's not nice.How many mg's are you on currently?
I thought about going off completely, but not sure if I will have that seizure, not sure if the swelling in my brain is that bad. My rad onc told me to "try" 2mg perday, so that's what I'm on right now.
Thanks for posting, I will certainly look in to this as well.
Jill
