Brain Mets Sisters
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Pagej, no new edema or inflammation are very good things. I hope you get shrinkage but if not, stable is an excellent runner-up.
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Hi Page , I have 3 tumors in my brain left over from my first gamma knife in 6 / 2015 that still look so big on my scan and I have a small one I had done in 7 / 2016 that is still in the " inflammation " stage and is still a bit bigger than before G.K. My RO seems to think this is normal...those 3 originals were just to big I guess and as long as they are no longer growing, it's all happy days
This past oct I had an adrenal gland met jump from 1/2cm to 4cm in 2 months ( it was covering the whole gland) my RO made a body cast then shrink wrapped me in...I had 5, 9 min radiation treatments. My last scan (a week ago) showed nothing left if it, all of a sudden, and my gland is still intact ... hard to believe
I think our bodies and our cancer react very differently to radiation and how long it takes our bodies to clear out the dead tissue can very greatly too. I try not to worry about the "inflammation" that just sounds bigger and I have been assured that they are not growing. I am very happy with "not growing" and "we see nothing new" if fact if that's all they ever say again wouldn't we all just be "over the moon"
Keep shining bright
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Thanks Pagej! Glad you liked the videos!
Hugs, Susan
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Nan812-all good points! Thanks. I'm tnbc and brca1 too. Solitary brain met, it is pretty big. My RO doesn't seem worried either. Nothing new is also reallygreat.
Mara- also good points. Thanks for the perspective ladies.
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Hi ever one, I need you help badly, my Mom just diagnosed with multiple brain mets and her Dr suggested whole brain radiation, I'm so devastated, she is 79 and she's on Abraxane chemo rite now and so weak, I red about HBR and it says it has so many side effects and now I'm so scared, please help me, I cried all day today, I asked her Dr today how long she has and she said I had patients that lived 1 year with it and this makes me so sad, please if you had whole brain radiation give me your experiences.
God bless you all
Lilon
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Hi Lilon and everyone,
Lilon, I hope to give you a bit of hope here, but also looking to here from others now too.
I got my MRI results and I was immediately booked WBR starting Thursday. Had my mask done today.
I had previously been treated with SRS on five lesions (4 - May, 1- June, 2016). I now have three nodules ( very small new lesions) but unfortunately my CSF looks conspicuous for leptomemingeal. I am her2 positive and on pertuzamab and tratuzumab. I'll be starting a a new chemo after 5 WBR. Sessions.
Lilon, my understanding of side effects from WBR varies widely from nausea, vomiting and fatigue and with some cognitive deficits.
My RO believes I won't have as much nausea as I had after SRS bc it was done on my brain stem. I treated my nausea with cannibis very successfully and will do that again on the WBR.. I found the anti nausea drugs ( odestrone- something like that) made me feel dizzy and worse.. But tired so maybe I fell asleep.
As for cognitive deficits, my RO said I might have some ST memory issues but nothing serious and more functionally like when I go into a grocery store for getting what I went in for. But I believe I read ithere that the effects are not so bad if you did not have deficits already.
Leptomemingeal : I know it's bad but I was wondering if those of you could comment on your experience and let me know what meds you might be on and type of breast cancer. Thank you so much..
Good wishes and hopeful thoughts for all,
JoJo
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JoJo thank you for the quick reply, what I red on internet about WBR was all negative, in every site they said it will not prolong life and it will decrease the quality of life, are there any ladies that survived for A few years after whole brain radiation?
I gave cannabis A few drops to my Mom once and it made her so sleepy so she didn't take it any more, do you mind to give me the name of the cannabis you use and the amount you use? Good luck with the treatment.
Lilon
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Lilon, sorry to hear about your mom. I did WBR in September 2016. It was exhausting but doable. A lot of rest is the best way to take care of fatigue.
A lot of studies are negative BUT if your Mom is still walking, talking, without significant deficits, she can be hopeful for a good recovery. It depends on her symptoms now, if she is having any.
My short term memory was impacted but not severely. Nothing a list can't cure. I have recovered from the rads. Took a couple of months and a lot of rest but I recovered.
Be aware there are risks, permanent baldness is possible. Ask Dr about Namenda to reduce risk of memory issues.
As far as far as people still alive for years there is SusaninSf, check her earlier posts on this thread. A lot of times, people are not posting if things are going well. Good luck to you and your Mom.
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Jojo, just want to offer my support about the LM mets. Keep us posted. There is a member, mandymoo, was DX in Nov 2012 who is still going. The LM threads are not very active. I say the same as above post, the ones doing well are not posting as often. There is an LM thread or two but I believe word was spelled wrong. Search "Lepro" to pull up.
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Lilon
There are a number of factors that are considered when looking at prognosis... Number of lesions and more importantly size of lesions.
With your mom, I'd focus on getting her feeling as healthy as possible with good nutrition and some walking if able to. I am totally functional so I will work out this evening and try to get some good nutrition in too.
The thing about WBR is that it is used when gamma knife or SRS are not indicated... Likely a more negative prognosis than when the other therapies are able to be used. That being said, I do know that there have been people postings longer than one year survival..I try not to worry about the prognosis and focus more on quality of life.
I used street cannibis but will order medical this week. Looking for higher THC indica strain..like th eBlue number 1... I use Mettrum.com
My iPad is not working correctly... I'll have to change devices..take care and big hugs!
JoJo
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Thank you so much, Mara!
Hugs
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JoJo, moving is the perfect thing to do. Exercise is perfect to help your appetite too. Join us on the Stage V fitness thread. All levels of fitness are represented and good ideas of different things to try. Can be uplifting during a scary time.
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Thank you for the posts, this morning when the Dr gave me the news privately I tried so hard not to cry in front of my Mom, she was getting chemo in the other room, but now than I'm alone I cried so much that my face is swollen, my Mom walks and she's tired all the time but she live by herself, do you think when she's going through WBR she needs some one to stay with her? On her Mri report it says,
innumerable supra and infratentorial metastatic lessions, all of which appear sub centimeter in size.
so the Dr says it is scattered all over her brain, is this worse or having A few larger ones.
Thanks Lilon
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hi Lilon, I'm sure I'm not alone when I tell you that I too helped my mom during a time like the one you are going thru. It's so hard to watch someone you love so very much hurt so bad. I'm sending you and your mom a big ((( cyber hug ))). Sorry I can't be any help with the WBR questions.
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Lilon, I can't say whether it is worse except to say that lesions can obviously affect different areas of the brain. If your mom is still able to walk, talk, remember things then treatment should not make symptoms worse as steroids are usually prescribed during and for a couple of weeks after the radiation. Large tumours can be just as bad or worse as the scattered ones. If they press on the wrong area or cause a lot of brain swelling this can cause symptoms. I only had one brain met on outer layer of my brain but it caused problems for me till removed surgically then treated with WBR afterword.
If someone can be with her, I do recommend it. Given that she is already dealing with other mets and combined with the WBR fatigue, it is a good idea to have someone with her to help her with daily needs. Not because she should medically need it but because she will get extremely tired and probably just want to sleep a lot. (This is normal by the way). Good luck, keep us posted.
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Dear Mara and Nan, thank you for you information and kind words, we are going to A radiation oncologist tomorrow, I will keep you posted.
Thx Lilon
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LILON,
Since your Mom's brain mets are small and she's is not very strong, have you asked your doctor about trying Xeloda first? WBR can be very fatiguing, Since she is asymptomatic and older, it's possible they may not grow very quickly and she might actually live longer without WBR. My Mom is the same age, 79, and we are very close so I totally feel for you. My Mom has Lymphoma and refused to do any conventional Western medicine. Her doctor gave her less than a year but that was 10 years ago! She only does Chinese medicine and is still doing well. She works more than full time as an elected politician and is full of energy. She is very careful with her diet and diligent about exercise. She wears an Apple watch and measures how many steps she takes every day to make sure that she does at least her minimum.
Hugs, Susan
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Susanin Im so glad for your Mom, yes the first Chemo she had was Xeloda but it didn't work for her. I want to take my Mom to Alternative medicine Dr, what do you call these Dr's? We live in Los angles, does any know any one here?
Thanks
Lilon
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Ok today we went to the radiologist Dr, he suggested 15 rounds of rads for my Mom and gave us some assurance that the lesions will disappear, he said they are small and will diffenetly go away, she has many small ones all over her brain, her oncologist gave her some cortisone to take so her brain doesn't swell but the radiologist said its not necessary but she is taking them any way, she started with 2 pills 2 mg each daily, I think next week she will start the WBR, could some one who had WBR tell me how many sessions they had and how much cortisone you took.
Thanka Lilon
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I had 10 sessions of whole brain radiation. I was on steroids (dexamethasone for me) for two and a half weeks. Since I had no symptoms during the radiation (symptoms being my old ones from the swelling before), I could stop steroids 3 days after I finished. I took 2 2mg pills a day during radiation. Total of 17 days.
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LILON,
I did 20 days of WBR together with radiation to my eye. My RO stretched out the treatment because she was doing the eye too so the daily dosage had to be lower. I didn't have any brain mets symptoms so never went on steroids. I was more terrified of the steroids than the WBR so I was really relieved when she said I didn't have to take them.
My Chinese medicine doctor is in City of Industry, CA. PM me if you want more info. I tolerated the WBR very well and believe that he played a huge role in that. My sister in law also saw him when she had intestinal cancer and she was the only one to finish an accelerated dosage of chemo in her trial group. I already told you about my Mom.
Hugs, Susan
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Dear Mara and Susan, thank you for all your help and information, Susan I pm you.
Thanks Lilion
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I wear more make-up to a brain MRI than most girls wear out to a club, because you never know when you might meet a cute single doctor (although after almost 3 years, I have yet to ecotour one!). However, all the fashion magazines tell me that the hospital gown look and port needle accessory is totally played out and I couldn't agree more!!
Anyway, still no cute single doctors (damn), but 7 treated stable to improving brain lesions and reducing levels of necrosis! However, the 8th untreated lesion has grown enough that now it will be treated, so just one more quick round of gamma knife for me. The RO said it is a good spot (not deep in my brain) and still very small (less than a cm), so there should be no issues and the treatment itself will be 15 minutes. Nothing like the last time, which was 2.5 hours!
You know you have issues when you literally consider brain radiation to be no big deal...
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Bec, your so beautiful.
OK I have A question from everyone, did you get your chemo's during the WBR? My mom is on weekly Abraxane and I wonder if she should get it? I appreciate your replies. Thx
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Becs, your picture is lovely. Glad to be hearing from you. I agree, it is funny how we can take things that used to be scary, and realize, we have gotten used to them almost. I hate to say it but I almost look forward to the cancer clinic visits myself since I like the chemo nurses so much.
Lilon Typically, chemo treating mets from the neck down would not be given during WBR. I did not have anything during mine, was still on Herceptin at that time.
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Oh OK, thanks, I will ask the Dr tomorrow also, she will begin the radiations next week and on Monday she has chemo too.
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Love the picture Becs! You certainly don't look like someone having a brain MRI!
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LILON, as soon as it was determined I would have radiation, my onc called and took me off chemo until I finished the radiation.
Becs, I love your picture! Smiles are such beautiful, contagious things, and yours is stunning.
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Great picture Becs and yay for mostly good news from your scan!!
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Thanks rgc77, you know I had to tell the radiologist that they will not give chemo during WBR so he called the oncologist and she said to hold the chemo for 3 weeks, you know I have to search myself and be on top of everything otherwise no body cares and this oncologist is one of the most famous oncologists in Beverly Hills, I guess the more famous they are the busier and careless, my mom had dizziness for 3 months now and she never recommended MRI, I had to ask her for one. This Monday she He will start the radiation.
God bless Lilon
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