Bone Mets Thread
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I hope we all have a great week. I know Annie is having radiation tomorrow around 9 am. I'll watch the clock and say a special prayer at 9 am.. Is it Lori who is having the MRI? Well, best wishes to Lori AND the person getting the MRI. LOL. Freebird, I am so sorry you had to pay for a day of fun with 3 days of misery. That doesn't seem right? Does anyone know if that is normal? If it isn't normal, contact your doctor. I don't think any of us should mess around with this stuff.
I know I have to get more serious about taking care of myself so I stick around for a while, at least through Spring. When I get to Spring, I'll have to have another special treat planned so I can make sure I stick around for that. Slick!!!
I have an appointment with a dermatologist around 10:30 tomorrow, so I'll have to skip out on work for an hour or so. Then, on Thursday, I see my oncologist for what might be the last time and get my Xgeva shot. Then next Monday, I go to the new oncologist. There is far too much to do this time of year to be having doctor appointments.
I need to get to a store, maybe Big Lots, to find a $10 gift for our gift exchange at work. We aren't buying for anyone in particular. Just a gift $10 or less that gets stuck in a bag. Then we pull a gift out of the bag. Fortunately, we are all women at work. Unfortunately, we are all retirees. So we all have no need of anymore junk or decorations, but we could be pretty safe with jewelry or lotion. Maybe tea. Probably chocolate. LOL
I'm having a cookie craving, but I must be strong. Cookies are not a good way of taking care of myself. I really do need to get in better shape and stop procrastinating about it. So, I promise, I won't get a cookie tonight.
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Dune - a cookie a day keeps the blues away.
I'm kidding, but an occasional cookie is probably fine. And chocolate is always a good gift. Even if the person getting it doesn't like it, they can share it or regift it.Annie - wishing you good luck with your radiation. Sending you clear-head/no sinus energy and positive thoughts.
Hope everyone else is doing well. I'm a total space cadet lately. Can't hold a thought in my head for more than about 30 seconds. Really annoying.
Wishing you all a good week,
Terre
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Lol Terre. I've been like that for years and years. Mind's from long-term xanax use probably. And it IS annoying. By the time I reach the end of a sentence I don't remember the beginning. It takes a LONG time to read a book like that. Then there's those times I've read 10 pages and suddenly realized I had been thinking of other things the whole time and have NO idea what I read. How is that even possible?
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Hey guys just checking in I wanted you to know that I am doing much better mentally. I started journaling again just letting the thoughts out of my head and onto the paper makes it better. I am one of those people who generally is ok but i can get stuck in my head if given to mucj time and once there it can get ugly . So reached out to my old therapist. I would have made a med adjus appointment with my shrink but it the mother of all bad timing poor guy had a heart attack and retired two weeks ago and i haven't found a replacement yet. Booked a flight to go back to be with my mom this Thursday when she has my niece and nephew for the weekend. Cant wait to have them hug me and tell me they love me to the moon and back.
Tomorrow I am going to Universal I love how pretty it looks for Christmas and a butterbeer in Harry Potter land then some coaster action always makes me happy as a little kid.
Annie its 9am so saying a prayer for your radiation.
Dune cookie away lol.
Lastly i cant believe it took me all this time to come here read and post. It just feels good to connect to people who get it and who i can freak out on... Not that i plan on doing that often.
Happy Monday
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Hey everybody,
I hope the radiation and MRIs go (went) well today. My portacath is driving me nuts - or the bandage is. I have to keep the dressing on for a week and it is soooo itchy!!!!! I'm at work and in uniform - scratching your "upper chest" isn't really the thing to do as a supervisor. Ah well, the pamidronate treatment only took two hours on Friday and the side effects seem to be calming down. I was achy for most of Saturday but not as badly as the first two treatments so things are looking up!
Happy Monday to you to Tartie Pants! I'm glad you're going home to visit family.
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Hi, everyone. Getting the results today from my first follow-up PET scan. I deliberately didn't call my Onc to get a preview because I didn't want to ruin Thanksgiving. Bad news can wait, right? And good news will still be there when you're ready.
Hope Annie's radiation goes perfectly.
Dunesleeper, most everyone at my office would be happy with a Starbucks card. Or chocolate.
tartie, glad you're doing better. It's such a huge relief just to talk to others who are going through something similar, isn't it?
Tracey, my portacath was itchy, too. It turned out there was a long thread from the dissolvable stitches that was poking and rubbing my skin. A call to the nurse at the outpatient surgery center got me some help with that. Sometimes the port still itches, though, several weeks later. But in a minor way, that I can distract myself from and ignore.
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Oh yes NineTwelve. I am definitely leaning toward chocolate or wine.
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There is a chocolate wine!
Not sure I would drink it, though.
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nine twelve- good luck and i agree with your thinking completely.
Tracey ahh the port yup it itches. You will also find that soon the smell of heprin will be oddly comforting lol. My port has become my security blanket in a weird way. I explain it like this, you know how moms say it seems like once you give away tbe last baby thing you end up pregnant well my port is my last baby thing.
Dune wine and chocolate now i want some I suppose noon is a bit early to start.
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nine i have tried that not my thing tasted like a spoiled yoohoo
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Thinking of you, Annie...
Dune, I'm in the chocolate camp for that grab bag gift, but I was also thinking you could probably find a really beautiful candle for $10.
Carla, so glad to hear your MRI revealed nothing more serious than inflammation. And even more glad your onc is thinking the goal for you is NED! Hope you're feeling less wiped out today. I also found cooking and having guests so exhilerating, I just about forgot I have mets. But I totally needed to kick back on Saturday and Sunday and not do much. I'm sorry you've been feeling so lonely. I wish I had an answer for you beyond an extra (((HUG))) going out to you. But it's probably really good to have activities and distractions to get our minds off bc. Are there any clubs worth joining, or any volunteer work or something like that you could do on a flexible basis, so that you could schedule a day when you feel up to it and when the weather won't be an issue?
NineTwelve, I'll be hoping for excellent scan results. Let us know! Hugs to all, Deanna
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I can totally relate to not being able to finish a thought, I will be telling someone something & then I have to ask them what I was saying. Annoying to say the least.
Dune, I would second or third the "chocolate or candle" gift or a gift card for coffee shop nearby work, that way someone could pass it along if they didn't like it. I hate getting token gifts that are throwaways, it seems like such a waste of money.
Annie, hope today went well. Carla, good for you! and Tartie, I'm glad you're feeling a bit better.
Tracey, my port still itches a bit & I've had it four weeks today. But it has eased off quite a bit. I get my next infusion on Friday, I'm hoping it is quicker this time. Have you had blood draw or contrast in it yet? You probably have the same one I do, which doesn't require Heparin only a saline flush.
Ninetwelve, good luck today, I hope only for good news.
If I've missed anyone, please it's not intentional, I just can't remember all the posts. Gotta run, my tree guy is coming today to limb some of the forest out back & let the sunshine in!! Cheers, Dee
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My port itches sometimes, and I've had it for 4 years. It's just my reaction to scar tissue, though - I occasionally get itching on my c-section scar, and the baby born that way is 37 years old. So you might, like me, just have itchy scar tissue.
Leah
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Thoughts flying out of my head? What????
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between staring out with ADD before cancer chemo brain and..... Wait was i talking?
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Hello everyone,
Thanks to each and everyone of you who wished me well today and sent your positive thoughts and energy. Well that's 1 down and 9 to go. So the Cyberknife was suppose to take 3 hours but I got done in 2 hours cuz I laid so still that it cut time off of my treatment. Wow this thing was strange, a big robotic arm that kept moving around me and delivering the beams of radiation. They did my L5 first and then my rib.
This machine is so precise that if you take a breath or move it re-calculates where the beam goes before it zaps you. It was hard to lay for so long and needless to say my butt and back are sore.
Terre it must have been your clear head/no sinus energy and positive thoughts that came my way, strangest thing I didn't cough or sneeze once during the whole treatment. Last night as I coughed all night long in my sleep, I started to panic, and this morning when I got up I was non-stop sneezing and I thought how am I going to do this? Well after the treatment, I sat up and started sneezing and coughing. The radiologist got a chuckle cuz for 2 hours nothing and then all hell broke loose. I think all of you really helped me today with your prayers and positive thoughts, thank you!
Tartie_pants glad you're feeling a bit better. Carla glad to hear your MRI showed that it was just inflammation and nothing more serious. NineTwelve I'm praying for good results from your scan. Lori please let us know how you made out as well. Tracey glad to hear you're finding your pamidronate infusions much easier.
Feeling a little tired so I think I need a nap. Hoping I don't have too much of a pain flare.
Hugs to all of you, Annie
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Annie, I'm glad to hear that things went so smoothly for you.
Leah
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So glad you got through #1 so smoothly, Annie. I was a bit surprised to read that you need 9 more. Are they every day? Deanna
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Thanks Leah, I am happy to have the first one done!
Hey Deanna, yes they are every day but they're alternating treatments. Tomorrow is the Stereotactic Body Radiation Therapy to my humerus and sternum. Wednesday is Cyberknife again to my L5 and rib, so it keeps switching between the two over a period of 2 weeks. So in actuality I am getting rads to each area 5 times. I know it seems confusing. So because the Cyberknife is so long they book me in early morning then the next day I don't go til the end of the day cuz the Stereotactic Radiation is 1 hour.
I just pray it kills the mets and they never return and the pain relief will be an added bonus. How are you doing Deanna? You're always there for everyone and so comforting. I hope you are feeling well.
Hugs, Annie
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So happy it went well for you and good to know about a new option.
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Annie, thanks so for posting how this works. I have an appt with my onco on the 18th & I'm going to ask about it because the pain in my one rib & in my spine doesn't seem to be getting any better. Glad that you got through the first one ok, it's always the toughest! Cheers, Dee
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Well Tomorrow is "Cocktail" day....and find out my tumor markers are...and hopefully discuss new treatment strategy with the new treatments that came out a couple weeks ago...OC took my case to the board to discuss other options for my Bone METS...I have been on Taxol for 5 mths at a dose of 90 which started out at 140 but my counts would go low...so we had to drop down...now OC is building it back up now at 115...so far so good...
I'm finding that this disease is the most loneliness disease ever...I can't remember ever in my life being this alone and lonely ever...and feeling so useless...Maybe it's me that is choosing this way to handle it...but...not being financially stable...I can't do the things i did before...i explored and played hard when i was not ill and working at a very good job...and a wonderful home....Harley....Now I live in a 5th wheel with a Kia sportage...and no outlet...I'm not a quilting kind of woman...my hobby was riding my Harley and cooking ....but I don't have the children living me anymore....so cooking is out of the pic....but I did cook for Thanksgiving...that did feel awesome...
Raining here in Boise, Idaho.....so just listing to the rain hitting the top of my roof....laying in bed watching Netflex....Good nite ladies...
I'm so glad you all had wonderful Thanksgiving...
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freebird you could look into operation baking gals they bake cookies for troops recovering at walter reed and other va hospitals. I know how crappy not having an outlet can make you feel
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Insomnia. It's midnight, I have a 9 hr work day tomorrow and I can't sleep. I've been lurking and posting a bit on the newly diagnosed Stage IV board and now I'm here with my bone mets diffusely scattered throughout my skeleton. Sclerotic lesions were probably there a while with no symptoms. Diagnosed incident to a CT for a bad gallbladder 9/5/14. Now, with symptoms (controlled pain in the "butt" really coccyx and sacrum).
My ONC team will have a case conference about me tomorrow and I will hopefully find out what wonderful new drugs I will be taking since I acquired the mets while on Arimidex. Arimidex served me well for almost 8 years.
I recognize some familiar names from the newly diagnosed board. Hello again everyone, the bone mets neophyte Rnsparki here. I am trying to get to know everyone by going back and reading posts, please bear with me. I'm old, blonde, and definitely estrogen deprived so it may take a while! Thank you all for being here.
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rnsparki, Are you sure you're not me?? Bad gall bladder which is getting worse & a sore tailbone is what brought me to stageIV. But tamox for 6 years, now on arimidex trying to get to stable. I have another ct & bone scan in 2 weeks, hoping that there won't be any more progression. Been really, really suffering with the gall bladder for the last week, I'm scared to eat anything. What did you get done for gall bladder or what can you eat that doesn't seem to set things off, so to speak?
As for the insomnia, I finally had to get a script for zopiclone, I take 1/2 of one each night about 20 minutes before I want to go to sleep. I finally after 6 years of insomnia, sleep well. Welcome to the club
but we all support one another here, from another estrogen deprived, memory challenged blonde!! Cheers, DeeFreebird, Along the same line as tartie suggested, is there an organization that would love to have someone volunteer to help out in the kitchen? It might help with the loneliness as well as giving you an outlet for creativity. Sorry your life is so changed. Glad to see you posting here. Cheers, Dee
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Hi all,
Annie - glad the rads went well and hope they continue to go great for you and knock those mets into oblivion.
GG - sorry you're in pain; that sucks.
Msparkie and GG - interesting about the gall bladder thing. I have a sore gall bladder too; had it off and on since my late 20s. And I've been really sore lately. Making me more neurotic than usual. And I'm old, blonde, and have zero estrogen, so I'm only marginally mentally functional as well.
Freebird - hope we can help make things less lonely for you. It is a very lonely disease. I moved to New Zealand from the US about 6.5 years ago and it's been lonely here. People are super nice, but I really don't have many friends here and I'm finding it hard to make friends. And a lot of the people here just don't get me, or my sense of humour, or my outlook on life, etc. Definitely some cultural differences. And we live about 90 minutes from where I work so it's hard to get involved in community activities. I'm still working, but the things I loved to do in the US just aren't financially feasible here as the cost of living is quite high. So huge change in lifestyle - we kind of live like I did when I was at university with lots of used furniture, an old car, etc. Add that to Stage IV BC, which people really don't get (and don't discuss at all - it's very old fashioned here, kind of like the 70s) and it's quite lonely here. My husband also just doesn't want to discuss it at all. I find coming here helps. I know that doing something nice for others helps me; the suggestions the others made might help you too, especially if you can cook!
Nine - hoping for good news for you.
And hugs to all...and all the best to anyone I missed!
Terre
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Terre, Thanks. It was good news. The spot (and almost all the fluid) on my lung was gone. Several of the chest nodes went dark, and my primary tumor was estimated at 50% reduced. The bone met was smaller, too. This is after two months of hormone treatment. My doctor says that a good initial response makes my long term prognosis hopeful. But I'm just happy about the short term! Now I can go on my vacation this week and have fun without worrying about these results.
Annie, the Cyberknife sounds fascinating. Does it hurt at all? Can you take a sedative to keep yourself from fidgeting? (I am a big fidgeter.)
Dee, sorry about the bone pain. I'm a huge believer in acupuncture, if you can get over the needles, that is. It really does take away pain. I don't know how it works, but it does. (Though you have to keep going back, because the effects are not permanent.)
Msparkie welcome to the bone mets club. Yeah, my brain doesn't always want to give me the word I'm looking for. And estrogen seemed to be helpful when it came to falling asleep. At least, I miss it now for that reason.
Firebird - living alone is lonely, isn't it? But when you're in pain and don't have the energy you used to, it's so much worse. The internet helps a lot. And sometimes I just go shopping or to the library to be around people and hear voices.
And all of you, thanks for being here!
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Hi........I'm sorry if I offended anyone before but I'm just trying to gain information...........
My friend has been to see one of the 3 specialists in the UK and has been told that her hip is inoperable 'at the moment'.........there's basically no bone left between her spine and her hip...........
They've told her that the cancer should be treated with chemo, the bone will re-generate, and then they can perform surgery.............
Is this realistic..............?
I have to say that she blindly accepts whatever they tell her..............and is happy with that............she's so glad that she's not having surgery before Xmas..........!!
Please tell me what you think.............
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Ninetwelve - Very happy for your good results! and have a great vacation. Linda0 -
NineTwelve, great news from your scan! WooHoo!!! I'm so happy for you!
Dee, so sorry you're dealing with gall bladder pain and issues on top of bone mets!
happygran, it doesn't sound like your friend really has any other options, other than maybe getting opinions from the two remaining qualified surgeons. But I'd be surprised if they can do anything if # 1 can't, since it sounds like they're all similarly highly qualified. And yes, if meds (chemo or an A/I and/or a bone building drug) can knock the mets back and let the bone regenerate, that sounds like there is definitely hope for a future surgery. Here's an interesting and encouraging article someone posted elsewhere on BCO yesterday that you might want to share with your friend. http://www.sciencedaily.com/releases/2014/11/14110...
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