Bone Mets Thread
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illimae....your doc probably just wants the results of all your scans so they can decide what treatment to do and when....without all that info he may not be able to tell you much more than you already know....i'm in a hold pattern myself right now and i know how crazy it can make you feel, but just like when we were first dx , 1 week wont change a whole lot of anything for us....it always reminds me to live for today....i hope we all can find some peace today.....sending more love to all
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Illimae, i know that you are fearing the worst, but I am hoping and praying that further tests and clarifications will bring better news than what you are imagining. I will be there with you in spirit as you have more scans and wait for results. Big (((hugs))).
Hugs and prayers from, Lynne
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Illimae I know it's so hard but try and not freak out. It won't be as bad as your imagining for yourself. Yesterday morning when I was freaking out about my results my 19 year old some phoned me and recognized my panic. He said "Mama I have been reading in a book Papa gave me about Socrates and Plato about how the mind can be used as a tool for healing. He said our minds we have control over not anyone else don't let them take that away. Waiting till Monday is BS and will ruin your weekend I hate it when they do that. How do you feel otherwise ? I'm with you and understand how you feel, you are a strong woman .
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My first progression today. At least two brain mets. I've been having increasing symptoms since March but nothing was showing on scans until last night's MRI.
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Damnit cancer! Quit kicking us when we're down.
Rachel
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Illimae-arrrgh!!! Hang in there!
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I don't have time t read the recent posts- been a crazy 2 days but did want to share that the GDC0077 is working! My scans (only got a prelim report) show the liver mets have decreased in size. Will read all the posts I missed over the weekend,
Babs
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Rachel, BUMMER! I am sad to hear about your progression. You probably haven't yet had time to digest the news. How are you doing? Do you know what your next treatment plan will be or is that still being determined? This is just one more bump in the road. I hope your next treatment rids you of all these nasty mets. (((Hugs))))
Hugs and prayers from, Lynne
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So sorry to hear, illimae. Hugs and prayers.
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Rachel - no. Unacceptable to dangle results until Monday and then get them with suspicious language. Sending you and Bluefrog some good vibes.
(()) Claire
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WTF???
SO MANY WOMEN ARE GETTING BRAIN METS and LEPTOMENINGEAL CRAP NOW!
What gives? Is it something in the stars?
Rachel and Bluefrog, there is a thread called "Brain Mets Sisters" in the Stage IV forum.
Sigh....you can join the rest of us over there.
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Bluefrog is Rachel, sorry didn't mean to be all confusing.
I was thinking the same thing, naughty universe
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Lynne--I see the neurosurgeon Tuesday. I'm doing okay. Had a good cry, my husband came home and we went out for lunch, then to a field hockey game and baseball practice. Onward! Honestly, I do feel somewhat validated because these symptoms without answers have been very challenging.
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Illimae, I'm so sorry you got such news! Will be holding you in prayer this weekend, hopefully they will get right on that with either chemo or radiation.
Rachel, will be keeping you in prayer as well! I hate that there are so many of us fighting bad news!
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Babs! That's good news. Am glad to hear that study is working for you, you never know, it could help lots of us
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Rachel, Yes, life goes on, and sometimes field hockey and baseball can be welcome distractions. It must seem like Tuesday is a long way off. As you know, waiting is sometimes one of the hardest part of MBC. While you are waiting, give some extra hugs to your DH, son, and daughter. Do something fun together this weekend. Once you see the neurosurgeon on Tuesday you will have a clearer understanding of what is ahead and how soon you can begin treatment.
Hugs from, Lynne
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Rachel and Illimae- I sure hope you get some answers and soon. Yes, we all have to keep pushing onward no matter what because we never know when they will give s the right drug/chemo that will kick this BC back!
Holding you both in my prayers.
Babs
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Hi all, I haven't been on this thread for a while and can see there's a lot to catch up on and it will take time to read all your posts but, sending hugs in the meantime. I thought i'd first share this piece I wrote for Pink October, Breast Awareness Month. My way of looking at it was that it's an opportunity to try to educate people about what it's like living (emphasis on LIVING) with cancer, especially with bone mets.
"Pink October. Everyone knows that one day will be their last day but, once diagnosed with advanced breast cancer, your life has changed forever. No longer can you fool yourself you're immortal. Every day, every moment becomes precious. Your loved ones and friends mean more to you than ever. Optimism is no longer just a word, it's a mantra to live by. If you have bone metastases as I do, your life becomes extremely limited and painful. Treatments and analgesics affect you physically and mentally and you have to strive to remain the person you always have been. You need people in a way you never did before.
There is no cure for metastatic breast cancer. It can be treated but only for as long as the treatment works. Breast cancer is cunning. It learns to sidestep the treatment and enter through another door.
People tend to think that breast cancer, like most cancers, can be brought into remission but metastatic breast cancer cannot. My experience has been that people think that, with treatment, you will be well again within six months to a year but this isn't the case. Once metastases have set in, you will never be well again. I'm said to be fortunate that I have hormone receptor positive cancer and this is true because it is treatable but still, it is not curable. I'm said to be fortunate that the metastases went to my bones and not my organs (so far) and this, again, is true because bones tend to keep the disease contained within them unlike the liver, lungs or brain (the other sites breast cancer spreads to) but, if you haven't experienced the pain and debilitation caused by tumours in every bone from skull to femur, including the entire spine and every rib, you have never known pain like it.
It's time that breast cancer awareness was brought into the open. The phrase has become worn out because it's been used so much it's started to become ignored but it's not just a phrase, it's a plea from all of us living this way...... remember us....."
I will admit that the day I wrote this and posted it on Facebook I was feeling a bit isolated and forgotten but the loving response I received was enormous. I do believe we need to spread the word as widely as we can. Not everyone likes to be vocal about it, with some preferring privacy, and I understand that but after keeping fairly quiet for a year since my diagnosis I decided dammit I'm going to put it out there!
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Rachel, I tagged my friend Trish on the FB page as she has been living with brain mets for 5 years. She's had surgery and some zaps, and is currently NEAD. Illimae, I know you're on that board too. Andrea Parker and Trish Gonnella Russo are awesome women who don't participate much, if at all, on BCO. Definetely reach out to them if you want others to talk with. They are both seeing the same doctor now.
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So powerful Leapfrog. You are a strong woman to put that out there. Your post is so clear and concise. Bless you.
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Illiemae - we got your back here. Stay in the game ... get a correct and definitive diagnosis and a plan. This will be behind you soon.
>Z<
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Hey Z. Are you back stateside yet? Hope things are going well for you
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Illimae and Rachel - my thoughts are with both of you. Sending love and hugs.
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Hi Gracie - I am in Japan until November. How's your jaw?
>Z<
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lita,
So dizzy and have to wait another week for MRI is there anything I can do
Paul
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Rachel and Illimae love Jens take on this I also know a few woman in my little circle who have gotten treatment and are doing just fine years later. Keep busy this weekend and whatever comes we are all here for you. The shock is always the worse I sometimes think will I get used to bad news ever or will it always be this up and down scary ride till the end ? Love and hugs to you both 😊
Babs yippee I'm so happy you have a treatment going that is working I hope the side effects are bearable.
So it's Thanks giving weekend this weekend in Canada and I have a lot to be thankful for. All of you ladies is one of thos things and life and how wonderfully beautiful it is. Made this bracelet yesterday while I can still see clearly enough lol. Have a lovely weekend all.
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Let's all try to have a good weekend. A toast to each and every one of us, with love and admiration and great big hopes.
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Cheers
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Wendy: That's a lovely bracelet. I used to make jewelry years ago b4 I got the horrible neuropathy in my fingertips. Now I can barely put my earrings on!
Weig/Paula: The dizziness is a real pain. You just have to take it easy. I have canes and a walker, and that's what I used when my dizziness was at its worst. I still keep a cane by my side just in case I get woozy. Sadly, my headaches are back. That's not a good sign. I may have to stay on a low dose of steroids now for the duration of my life. My 20+ tumors did not like being zapped, and with all the leptomeningeal involvement, new ones might have sprouted. We won't know for several more weeks. They like to wait and do a follow-up scan 6 - 8 wks after Whole Brain Rads. Can you call your primary care giver and see if they can give you anything? It's not fair for you to just be "hung out to dry" like that.
Keep us in the loop,
L
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Z, so far so good on the jaw...waiting for my onc to decide if they are going to give me my next XGeva. Stay safe over there, an hoping for really good response to the treatment
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