Brain Mets Sisters
Comments
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PAULA, I believe shrinking is very good. Mine were shrinking then at the next scan, they were gone. Its not an immediate thing with radiation.... I think.... that's what i gather.......
Anyway, happy news.
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Paula, I am picturing the little maraudrers, marching their way out. I will not be having another scan on my noggin. I am picturing wbr doing it's job. Nuking the little bastards!!!! Glad the scan is over for you. I hate scans!!! xoxox
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Hey, Braniacs, was it here where I bitched about needing a TEAM approach, etc? My MO said there's no hurry to call Ortho doc for Rotator Cuff tear until my scans come back because he will ask her what my 6 month life expectancy is.
That bummed me out! But as if reading my mind, the excellent Rads Onc praised my assertiveness and called the ortho-cancer specialist to look at the scans.
She said Breast Cancer is making more progress than other cancers because there are so many of us pushing and speaking up. She said, "I like what you're doing"
( I will post in Halaven to celebrate but also to encourage us to keep pushing!)0 -
Hello, my sister is 4 1/2 months out from WBRT, treating multiple mets. She has 5 tumors remaining. we have a trip planned in a month and she really wants to dive again, I am getting scuba certified so I can go with her. I know her, and I know she will not ask doctors about the risks of diving with the brain mets. I am not on the HPAA form, so the doctors can't talk to me. Does anyone no what some possible risks or complications could occour because of the dive? She is doing great right now, working full time and very upbeat (30 years old). She has mentioned some symtoms that has me worried. Head-aches, she has been falling more, noted the left side of her bottom half is giving out on her and the right side of her top half.... I urgered her to tell her doctors and she said "what for" and clames she is just sleeping on stuff wrong. God bless her. Help. Advice?0
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Not sure where to post this info, but I kno Reesie was a part of this group too.
Ref Reesie - I started a 'Pink Rose for Marie' at a florist in her home town. If anyone would like add a flower here are the details:
Jerry's Florist #856-317-9402. If after hours (10:30-6pm EST) call 856-283-8569. Leave a msg and they will call you back. Tell them you want to add a flower to Marie Giebel's arrangement. The florist is giving discounts on the cost, bless their hearts. The DEADLINE to add your flower is FRI, 8-17, BY NOON Eastern time. Debbie is the sweet girl I spoke to, but anyone there will be able to help you.
Pink rose - $3.00 ea Pink Gladiola - $4.50 ea Pink Tiger Lily - $6.50 ea The card will indicate that she is an angel now, from her BCO sisters, may you rest in peace.
God bless you all!!
Sue
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Kathy, those docs ought to know better by now to try to put an obstacle in your way! Hope you get what you want. Also liked hearing that your tumors eventually shrunk to nothing. How often do they do follow-up scans. I didn't even ASK yesterday as my main push was to get a referral for gamma knife for the remaining buggers.
Golden, especially with your sister's symptoms, she really DOES need to call her doctor about the diving. And Sue, thanks for the info on Reesie. This has been such a horrible year with us losing such special people.
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Mema thats a great idea. Not a great deal of money which sometimes seems like the wrong thing to do, instead of donating. But a small thing that adds up and shows how we feel. I haven't cried in about 5 years but this week I'm coming close.
I'm gonna take down my photo with her because she had so many rich relationships in here and at home, ours was not unique. If we ever get to make memorial pages in here, Ill put it up.
HEY, we could ask the mods to post a permanent link to OUR OWN memorial website. Or had someone done that? I mean you want to visit some people.....
Paula, the neurosurgeon who did my gamma gets a scan every three months and he has expected what has happened: shrinkage and disappearing lesions. He said there's a tiny thing present which may be scar tissue. Do you have a neurosurgeon? Can you self refer to whomever does Gamma?
Yeah, I might wanna be careful what I push for, but this doctor gets Olympic Gold from me!
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Oh what a great idea K-Lo. I am with you...I would like to visit and remember our angels. I did donate to Marie's daughter Megans 3-day Komen Walk also...I just thought a sea of pink at the services would be a beautiful tribute to her! I will check around and see if such a thing already exists and will let you kno.
Sounds like your neo guy is the bomb Kathy...very good news indeed.
HugZ to all,
Sue
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Mema, may I suggest you create a new thread for Flowers for Reesie so that everyone can see it? (I just called on ein and they were very easy to work with.)
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I did it....hahaha...I'd never done the topic thing...took me awhile but it is up now. Thanks Kathy!!!
It is called FLOWERS FOR REESIE and is in this forum (StageIV w/mets).
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Dear Brain Mets Sisters.....Sorry to intrude but I would like to ask a few questions on behalf of my Niece. She was DX with a cancerous brain tumor in 4th grade. She had brain surgery then & again in 7th grade when the slow growing tumor hemorrhaged & began growing again. After the second surgery she went through Chemo & Radiation. She is now 27 & the beast has agian reared it's ugly head. She is refusing Chemo & Rads because of the horrible SE's she had. Yesterday at the Dr's he proposed the possibility of Gamma Knife Radiation. A one time deal from what I understand. It has peaked her interest but only if she can talk with someone who has been through it or hear how others have done through it. I told her I would try & find out how others have felt after going through this type of RADS. Any info would be most helpful. The tumor is growing through her optic nerve & always has been. It is the size of a very small plum or globe grape. I do understand that BC is whole other Animal. I think her knowing of others experiences going through it might help encourage her to try this. I know it's her body her life. I respect that. I think I have been the only one who isn't pushing her, only encouraging her to do what she wants. Again Thank You for any info anyone can impart! Sincerly Aunt Julee...AKA Julz4
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Hi Julz, While I am twice your niece's age, I am in the same boat. I am choosing to never have my head messed with again. There are those of us who will do anything to live, and those of us who would rather not, if it means being sick or having a quality of life, we don't want. Neither is right or wrong. Just unbelievably personal. It's nice of you to be there, no matter what. You are a kind Aunt. I wish your niece the very best. xoxoxox Jodi
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Hi Jodi, Thank you so very much. I so respect her wishes. I was a bit surprised yesterday when she told me she was comptinplating the Gamma. But that she wants a lot more Info & personal testimony if you will about how others reacted to the Gamma Knife. I feel for my Brother & SIL as this is there child. I know I would be heart broken if it were my child. But I've seen too many die of Cancer & now that I was just DX myself with BC. I so respect her wishes. Only SHE knows what more SHE can deal with. Others have to watch but not acctually go through it! oxoxoxo Julz
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Hi julz4
I have had gamma knife and I would say that in general the side effects are ok. The main things that I have been bothered by have been tiredness, the kind that is sometimes quite overwhelming and you can't 'keep going' or 'fight through it'. Coffee doesn't help, I simply have to go and lie down and sleep. I had GK about 6 weeks ago and yesterday I slept for 10 hours during the night then another 6 hours in the afternoon - I am, of course, awake now (it's 1.30 in the morning here in the uk!)
For me the other problems have been odd visual disturbances, seeing things moving out of the corner of my eye, when I look there's nothing there. Dizziness and sometimes (but not often and not badly) nausea
The last 2 - ie the dizziness and nausea have only been an issue when there has been swelling in and around the treated area, for me the area was the cerebellum.
I think that it might be useful for your niece to have a chat with the GK consultant because if the tumour is large he may not feel happy with treating it or, as in my case, there might be potential issues with swelling after the treatment causing specific side effects that he would know about and explain to her (I imagine that there would be the chance of swelling pressing on her optic nerve). Each time I have had problems with swelling it has started 8-12 weeks after the treatment. I have been given steroids to help conteract the swelling and they, of course, have their own issues which i am sure you neice knows all about. I have been treated 4 times now with GK. they weren't so happy doing this most recent treatment but there were no alternatives as I was not a candidate for a general anaesthetic and surgery at the time.
Overall I think that GK has a lot of positives. It is certainly much easier than chemotherapy and although I haven't had whole brain radiotherapy I think that it is easier than that. I am currently struggling with chemotherapy and I can well understand why someone might choose not to follow that path anymore but If her consultant thinks GK might work for her then I personally would say go for it.
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You can search gamma knife and read all thats been said, should be helpful
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I am a week out from my last Halaven.. i swear I feel 100 % better.. I am soooooooooo low energy for the 4 days following chemo. I have a whole week off, so maybe I'll get something done this week. If the weather cooperates, I'll spruce up the gardens (they are pretty sorry excuses for gardens.. just areas where things are planted.
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Thank You K-Lo!
Tillycat....I really appreciate all the time you took to answer me. This should be very helpful.
Apple enjoy your time off!
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Hi all! My mum has been dx with brain and lung mets both sides of
Both organs plan is intense radio 5 days her breathing gets worse by the day and is now wheelchair bound and the nausea and vomiting is crazy! She has lost 31kg in 10wks and is only on dex atm has anyone here got brain and lung mets combined I would like to ask some questions if possible
she is HER2+ and wasn't able to complete all herception in 2007 due to heart problems! She is 48 originally given 10yrs since been 5 1/2 remission dx last Tuesday! Sorry to be a pain but I'm freaking I am 26 and have 5 young kids and really really need my mummy so I would like to talk to anyone who can advise "best shot" so I can have my cards drawn before seeing more specialist! Also I can hack the "nothing can be done" oh and radiotherapist did not say how many just lots of little ones! I am also guessing there is more inside the brain as these were found via a bone scan! Please please help!! 0 -
Apple is it pretty predictable? Im gonna have to keep a journal, nothing feels like a pattern to me. Except forgetting to write a journal. Gonna do it now!
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well... i didn't have a better week.. I continued to be tireder than an old cat.
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Have u tried ritalin? Can take tiny doses....
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Have any of you been on Irinotecan and Temador? I finishied 15 WBR treatments on Thursday and my first full week of Temador (taken biweekly) Started the Irinotecan Friday and have thrown up everyday since. Can't hold things down! I'm taking Zofran and try not to take Compazine too much because it makes me sleep and I've been asleep more than awake today. So, so tired and no energy!
My plates were low but Onc opted for tx, and has me coming in next week for blood check. I guess it's the chemo making me so sick? Did I mention that I HATE cancer!
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Just a note to let you all know...Reesie's info is posted on the Wall of Angels in the Commemorating Loved Ones forum.
Prayers,
Sue
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Just wondering if anyone knows how Rohm is doing?
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or Eag 1954... I haven't heard from her in a month or two. I was going to give her this wig. Her name is Sharon.
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Rohm's dh updated her blog last week. She is not doing very well.
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Cathy, you are having a bad spell. May it lighten up soon. I hope you can do things to comfort yourself and knock off any responsibilities.
Y'all have we asked everyone to have a BCO buddy? I have exchanged #'s with Lynn1, so if you are ever worried about either of us, feel free to call.
Then again, this is our life.
Love to all
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Apple, Whats up with appetite? How low is your weight as far as you consider too low?
Friday my DH finally admitted to acute abdominal pain and has been in the hospital fasting and hurting. This morning was better, they let him have clear liquids....
My point, and I do have one, is that I have been stuffing. Cookies, chips, etc. Stomach doesnt like it but my psyche keeps telling me to munch away. We shall see what scale shows!
thoughts for the day.....
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Hey all. Haven't posted in a while. Mouth sores keep me from eating. Am in so much leg pain. Did u guys get those. Shooting pains down my legs And butt and arms. they said It's from the wbr. am now on fentanyl patch and Percocet which makes me vomit and have constipation. I am now about 3 weeks out from my last wbr. Please when is this pain get better?
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K-Lo I'm able to eat small amounts but still nauseous. I have to make my mind not think about it or everything comes up! Sometimes this doesn't work either, that's when the drugs come out!
How is your DH doing? I had severe cramping about 4 years ago and it turned out to be diverticulitis! That was awful,awful and turned into C-diff. I hope he gets well soon.
Spark on the mouth sores, I was given two Rx's Chlorhexidine Gluconate Oral Rinse and Miracle Mouthwash (before meals and at bedtime) as need for pain. Also rinse with warm salt water. Hope this helps!
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