Brain Mets Sisters
Comments
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Tillycat, did you send me a PM? I can't seem to find it on this pesky new site. I am not the best on computers.
Lassman
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FMG, I am so sorry you got more rotten news. I know it's like a kick in the stomach, and having to tell everyone else is just so hard. Wish I could help besides sending virtual hugs. We're all thinking about you.
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isn't it amazing you go in with complaint, they find tumors, but not related to complaint. In my case I keep thinking this means catching things early.
I hope that's true for you too, FMG.
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whole brain radiation done. steriods done.
Anyone experience major stomach bloating after radiation or the steriods? Bloating became worse after Zometa shot 2 days ago.
Started Xeloda today. And will be starting Fasoldex injections.
Anyone have experience with this combination?
Kathy - Thank you for your kind words. I am on here looking for women my mother can relate to. I have read all the blogs from caregivers and they don't help me. I want to understand what my mom is going through so I can be the best care giver....YOU ALL help me do that. And to be totally honest, reading your blogs are so encouraging....You all are going thru so much but are so incredible and strong. Thinking of all of you.
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Lassman - i hope you can get your issues resolved pronto. i have an unusual dizziness that starts if i rotate while lying down.. (i just don't get up till i stabilize - it's like my inner gyroscope is whacked).
Hope 4 best mom - your posts really make me smile.. it is so sweet of you to take your children to your mom. I would think you the best daughter ever. best of luck to her. the major stomach bloating could be constipation.. chemo does such a number on you. I cannot rely on pills but drink a tea that makes you skinny from China.. it is simply a senna tea (which they make pills out of). I like it because I can totally control the amount to sip.. one little cup, one little sip, 3 big sips. I know right after chemos, i need a whole cup of tea.. and can 'move' easily without discomfort.
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Dear Braniacs,
Did I tell yall that my eye tumors are shrinking?
Also the voice problem is due to vocal cords? Did I tell you that? Who was it who said,"I do miss my mind"?
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i have a really strange side effect.. i can smell so well.. i can smell a teenager from a mile away, a guy in the car next to me. I hate to ask my boys to shower because they really always do.. it's just gaggitating. my imagination is going whacko too in the smell department.. it's always been active but it's bordering on the absurd.
I'll be watching a cooking show and i swear i can smell the food burning on the tv. and yep.. Jacques turns a fliet over and it is burnt.
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Thats wierd, apple, could it be the region of your brain thats been stimulated?
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Klo-congrats on your good news!
I have more sucky news to give. In addition to new tumors they now think I have leptomenginal mets also. That may be my death sentence. I do not know if I can deal with that along with all my other mets. They are going to do SRS for my new brain mets. But it is the leptomenginal mets thAt have me worried the most. Mom, dad and dh spent hours in tears. I do not know how to console them when I am the one going. I am tired and alone and wondering when it would the right time to stop all this. Hard to make these decisions when I watch my girls.0 -
FMG, just came to read and saw your latest news. A big soccer punch for real . Know that I am hoping they come up with a treatment plan and that you get very positive results. Sending hugs.
Brenda
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Fmg
Sorry about the cra*p news.
I don't know much about these mets but I have read on other threads that because of improved treatments they are not considered to be a death sentence in the same way as they used to.
Alesta (laurie) doesn't have the herself but I think she knows abut about them - hopefully she will post soon and share what she knows
Gentle (((((hugs))))) for you and your family
Mxx0 -
FMG
Man, this crap never ends. I haven't had a lepto diagnosis (yet) and I know it is difficult to diagnose.
There is a thread for intrathecal herceptin that is current you could look at as it might be an option for you.
I think Rohm was recently diagnosed and said her onc said treatments were better now. There is a think they can put in called an Ommaya reservoir to give chemo directly in to the spinal fluid and brain.
Sorry. That's the extent of my knowledge.
Thinking about you
Laurie x0 -
FormyGirls - I know what your girls are going through. My mom was told in March 4 weeks before my baby was due that they thought her cancer had spread to her leptome...They gave her the worse case prognosis, however they did say they have seen cases where patients have been treated sucessfully for YEARS. And I have seen other blogs on here where people have noted their docters said the samething...that the internet has old data and they have also had patients live for years, one lady said her doctor treated someone for 10 years.
Anyways they gave my mom a spinal puncture that day told her depending on the results their plan was to start WBR the following Monday. We were all devastated...my sisters, brother, step father. I was not dealing with well with the whole situation because I knew I could not travel to be with my mom as pregnant as I was. I think my mom was like you she did not know what to say so she took a day off. We normally talk everyday, couple times a day and she just text us all and said she wasn't ready to talk. Me and my sister took work off and cried all day. The next day my mom called and said well if this is what it is I am not going to sit around and dwell on it....and she started making jokes about losing her memory if she had WBR. At first I was mad because I thought she was just trying to be strong for just me, (I am her most emotional child). I wanted her to feel like she could talk to me even if, it wasnt what I want to hear but I didn't want her to hold it in and try to be strong for me. She said "Hey, I am not hiding anything this whole thing sucks and I feel like shit but I am not going to sit here and waste another minute worrying about something that is out of my control....I am going to make the best of every minute" "She said and if you aren't going to enjoy your life while I am still here fighting to watch you enjoy it then what am I fighting for" ...... That is my mom's way of saying "If she's not feeling sorry for herself that me and my sister shouldn't" .....so the next day I thought of her and made my self get up and go out with my husband and kids to the saturday market.
I stay up late searching all over for good posts and I found some....I send them to my mom usually before all her doctors appointments just to let her know no matter what news they give her there are always exceptions to every rule and there are women with Lepto that have great survival stories better than the prognosis that doctors like to give...
Long story longer...that following monday the doctors didn't even call...we were all worried sick and then after all that they don't call. The next morning my mom calls in they finally return her call and say all the test were inconclusive....WHAT one minute you are giving her the worst pronosis then the next you say nope nothing to worry about. They did find the lesion behind her eye so the decided to start her on a new CHEMO Ixempra. End of May she started losing all sensation in the right side of her face, they found the 3 lesions on her brain and finally did the WBR. Her oncologist called her again during the radiation and said she wanted to meet with her to discuss the intrathecal chemo...so again we thought she must have cancer in her spinal fluid and brain lining...she had to wait a week and a half to meet her oncologist. She finally met the doctor last week they said they study her case and now for some odd reason they still think her spinal fluid and brain lining are ok. I guess I don't understand how twice now they have told her they thought she had the samething and now they don't. So she has started a new chemo combo Xeloda and Falsdox. They are going to start testing her spinal fluid regularly....I guess I have to be happy they keep testing her and watching her....I just wish doctors would give prognosis, especially if they don't even have your results back.
I hope your girls will understand no matter what you decided to do it is your life and you need to follow your heart. I thank god everyday that my mom is still fighting, but I would understand if she made the choice to stop. She is one tough cookie as YOU ALL are. I wonder if I will be as tough as her one day.
Apple - Thank you for the tea recommendation.
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FMG, Let's go with the docs who are saying treatments are better and lepto mets are not as scary as they used to be. We're here backing you up, Paula
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FMG, I feel like i've had a few death knolls (as in bells), but next thing you know, greatest moment of my life is happening. Greatest vacation, greatest music. It is hard to be prepared for the worst, for "reality", when these doctors have so many tools in their boxes. Some are band aids, some are fixes that work for a good long time.
Hoping for you. Scary? Hell yeah!
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Scary stuff...but try to see what the docs say...I've heard some good stuff about the Omnaya Port and Drugs introduced that way... Also, SRS was great for me..did stuff regular radiation only partly did. My doc said a different treatment! The only complaint about the SRS has been some not unexpected necrosis that has me on steroids, hopefully just for awhile.
I'm sorry this is hard for your parents too...so much to deal with all at once!
Don't give up!!!
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Formygirls: I know what a scary thing this lepto diagnosis is. My daughter, Suzanne, was diagnosed with it in October,2011 and did get very sick indeed. But the doctors pulled her back from the edge, put in an Ommaya port and infused Herceptin directly into the brain and spinal fluid. Now, close to 9 months later, she is doing very well. She also takes herceptin IV and Tykerb orally. Since your HER2 has changed from negative to positive, now you can take Herceptin, too, right? I sincerely hope this could be an answer for you. A lot of places only do trials with the Ommaya port but more and more are offering it just as a treatment. UCLA and Cedars in Los Angeles offer it and so does San Francisco, I'm told.
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i notice that i deteriorate when i see my siblings.. my speech is just not what it could be. i have all these complex thoughts without the ready words to say them.. i've been mixing up everyone's names.
i see their concerned glances.. oh well. i function pretty well (if you count crawling to couch as functioning without spilling any water.
i'm doing better than all that.
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Hey formygirl! I was also wondering if the ommaya reservoir would be an option?
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Oh, Mary M, will it get better as you recover from WBR?
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Thanks everyone for your support. I am starting spinal tap chemo on Monday. Will have three spine MRIs today--they will be four hours long!. The neuro onc is not supportive of the radio surgery and insists on WBR. It was too much information. This dr is very aggressive and will do high dose chemo without the spinal tap diagnosis. He is positive i have leptomengial mets based on my MRI. HE does want to do any more dagnostic testing. He said he might be able to extend life for a year if things go well otherwise i will be dead in a couple of months with treating this.What the QOL will be I do not know. So I will get WBR, taxol, Herceptin, high dose spinal tap chemo and very high dosage tykerb every week. I am shell shocked and just going through the motions. I did not realize things were so bad. I have no symptoms anymore and all the brain MRI said was location of tumors is worrisome for seeding of leptomenginal mets.
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morning/afternoon/evening ladies
sorry i aint posted but i have been an avid reader....x
i was due my 3rd chemo but due to a raise in temp and a over night stay in hospital they have postponed me..good news although temp was high all bloods etc were showing as good
i have a lil question for you ladies to answer..i was laying in my bed and it came to me ...and i know you ladies will have the answer...its a very stupid question but it just wouldnt leave my head............am i destined to be bald for the rest of the time now as i presume its gonna be constant chemo n rads..or if it gets under control do i get a break and possible some downing?.....i was also told somewhere rads can stop hair growing back at all...:(...
all the breast
tracy..xx
P.S ....also how long have you had your brain diagnosises?
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sending you strength and love, formygirls.
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Formygirls
That is such a lot to take in both mentally and physically.
Thinking bout you and hoping that your family are being supportive now that they are getting over the shock.
Love and hugs
Laurie xx0 -
FMG,
I think the only thing worse than finding we have progression with our disease would be that instead of us, it would be one of or kids. I am so sorry that you keep getting hit with bad news.
Love and hugs,
Terry0 -
Aloha. FMG, I am so sorry to hear your latest news, but I am hopeful due to others posters knowledge of different treatments. This truly sucks. I am not having any kind of brain scans until I show new symptoms. I will be having scans of my body though. Yuck.
We had an amazing time in Maui. Our room, lanai, and view were spectacular. We ate dinner at some pretty awesome restaurants, and all had a view, except for a Benni Hana (sp) style restaurant. Weather was divine. I am sporting a tan, I haven't had since I was a kid. Hey! I actually went out on a sunset cruise!! I love boats, and it was sketchy, whether or not I could do it. You boarded from the sandy beach. It was super fun, if not windy on my poor ears!! Other than having to use a wheelchair and that 5 hour flight, it was more than I could dream of. 8 days were just right. I love the islands and the people. They are the friendliest, kindest people I have eveer met. MauiMom, I will trade you houses, anytime. Hugs Jodi
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Jodi! so glad you had a wonderful stay : )
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omg i think my hair is growing back. let me go find my magnifying glass.
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Hi Apple! I am looking more and more like Dr Phil and that creep Zimmerman. Not a great look. I do have nice eyelash extensions though. Hugs
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For my girls
If I had the world to give....
All my best... All my hopes...
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