Bone Mets Thread
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Patty, I love the picture of your boys jumping in the pool (your yard looks like a park, beautiful!)
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Hi All! I didn't think I was gone all that long, but I've got 4 pages on this thread to get caught up on.... hope everyone is well & if there is anyone new here, welcome, we have a great bunch here, helping & supporting each other as best we can.
I just thought I would let you know what's going on with me. I am scheduled for a CT scan on Wednesday, then I have an appt with RO the following Tueday, another CT scan that day & then rads on Wednesday. I don't know how many rads treatments I will get. I understand it can be 1-5. Then Pamidronate on Friday... whew! Hope it works, I so badly want to stay on anastrozole & not go onto to the next treatment which sounds like hell.
DH is taking me to Tofino the day before my CT. It's one of my favourite places, I could walk the beach, barefoot for hours. I'll try to post a pic or two when we're back. In the meantime I'm going to read up & see how everyone is. Cheers, Dee
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GG27- Tofino is lovely we were there BC (before children) 21 years ago.. lovely beach saw a bald eagle eating a seal (must have washed up). It was one of those eerrie overcast water color sky days, where the clouds are low and seem to catch on the fir trees... lovely and mysterious. The whole Island is magical. Too bad they require passports and all or I would visit again. You are lucky to live there.
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Welcome back Dee. Good to see you. You do have a seriously busy week ahead. Press forward like the trooper you are.
I helped mom trim bushes today. It was hard but OMG I am paying for it now. My sternum hurts so badly I can barely breathe. Growl and grump.
I get another treatment in the morning.
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KiwiCatMom, I love the stories about your kittens. I have four cats and one dog myself and they provide endless love every day. Cyclops is exactly where he needs to be.
Question for everyone: I have had this odd pain in my hip bone but a CT scan and a PET scan revealed no lesions in that area. It's been hurting now for over three months. Anyone have any idea what this might be? It's highly annoying at times!
JJ
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Kiwi Cat Mom, Love your comments re wanting to push on to help our younger sisters in this cancer fight. When I was dxd stage 4 ...two yrs ago my thoughts quickly went out to my two girls with kids of their own. Yes I want to live but I have been blessed with a great long life of 78 yrs and if my cancer can be dealt with as a "chronic" disease with ongoing vigilance and Tx then maybe just maybe we are on to something...wouldn't that be wonderful!! Love your kitty news. Peggy
TOPICS
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Just a quick, "Hi" to everyone tonight after being away from the computer for four days, on a little getaway with my DH. So far, I've just watched that really great little video. Thanks so much for posting it, Terre. I'm anxious to share it on FB in the morning. And I couldn't agree more with yours and Caryn's and Peggy's comments. As crappy as a Stage IV or mbc dx is at any age, it's a whole different ballgame when you're in your 30s or 40s with young children.
And love the pool pix and seeing your boys so happy, Patty!
More comments when I have a chance to catch up on what I missed, but one thing I noticed today is how much less I hurt after a few days away, which is a bit odd. If I figure out why, I'll let you know, but I suspect it's the mind-body thing at work -- which, by the way, has now been scientifically proved. Did you all see that? (I'll find the link tomorrow if you haven't.) Deanna
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I just watched that video & while I like the message, it does bother me a bit that she "borrowed" the same way of delivering that message that Amanda Todd used. Now most of you may not know who Amanda is, but she was a local girl who committed suicide because of online bullying & her video went viral. She delivered her message via cards in 2012. Like I said, I love the message, just wish she would have found another delivery system. JMO.
Good to see you Dune, hope you didn't overdo it today. Rose, glad you enjoyed one of our coasts, I love the Oregon Coast, one of my favourite places.
JJ, I have pain in my tailbone which shows no lesions. My onc says it's pressure from the lesions in my spine, perhaps something similar is happening with you?
Caryn, enjoy your cruise. Patty, good pic of your kids! KCM, I hope you're over your bug & getting in all kinds of kitty love. Sorry guys, I can't remember any more, I've taken my sleeping pill, g'nite, Cheers, Dee
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Hi all,
I got way behind too and have missed a bunch of posts/people. I totally get it Dee with regard to Amanda Todd. That said, at least she's getting the message out there.
Glad you had a good getaway Deanna! And yes, there is a mind/body connection. It's winter here and I'm just sore. And I'm sure part of it is because I hate the cold.
Patty - love the pic of your boys! How fun! Jean - love the flower; how stunning and what a lovely colour.
Three of my fosters were adopted on Sat. They were the first three picked! The two ginger boys went to a couple with a son who has red hair. They specifically wanted ginger siblings. They told their son: "now the gingers outnumber the non-gingers in the house!" They were thrilled with them. LBK (little black kitty) went to a lovely young couple who have just bought a house. They wanted a house so they could have a kitty and it was love at first sight, despite LBK not being the prettiest kitty there. But he did his magic; i.e., purrs the instant you touch him. They've sent me updates and pictures already. So, just the two girls to go when they get up to weight - probably next week. And I got to meet momcat's "real" mom (she went back to her owner). The owner just couldn't cope due to her daughter having a new baby plus the daughter's two cats having two litters of kittens. I've gotten an update from her too.
So, I know you're not all cat people; however, here is Cyclops (I want to name him Henry, but haven't told DH that yet) with his siblings (there are four kittens in this photo, but they're hard to see!). Cyclops is the tabby with the white/black spotted tummy. Even if you don't like cats, there's not much that's cuter than a spotty kitty tummy!
I'm off to Auckland for two days, then meetings with my boss and clients all day Thursday, so I'll probably fall behind again...
Take care and hugs to all,
Terre
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Cyclops is adorable! Don't you just want to tickle that tummy? (it would be worth the scars!)
JustJean - what's the pain like?
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just Poppin in to say hi ladies. I've had crazy migraine , nausea , vomiting, achy pain everywhere. Boo not what I had planned for 2 weeks alone eith dh.
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Hi all,
Patty, migraines often come when we feel a bit more relaxed. I hope you feel better soon and enjoy your "honeymoon" with hubby.
Dee - Good to see you're back. All the best this week.
Dune - good luck with tx this week. You have beautiful pics of your trip.
Wishing all the best to all. Just too tired to go through all the posts. This will be a restful day.
Linda
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Treatment #5. Benadryl kicking in. Taxol kicking some cancer butt.
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Dune, great spirit! Your smile is beautiful. Hope you get great results from the treatment!
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Such a busy place here...as in, people are living life to the fullest...that makes me happy!
Deanna...I so agree that getting away, wherever it may be (So Cal for me!) is the best medicine. Wonderful you had a fun trip w/DH & felt great!
Patty...you are the best! Running around naked for 2 weeks...obviously you don't eat TOO much lasagna on a regular basis :-). And now, with your DSs gone, you're feeling puny...not fair! Hope you're feeling spunky soon!
Dune...so glad for clear brain scan!!! Your pix...made me want to take a trip!!!
Dixie...the best.news.ever! Happy Dancing!!!
Xavo...glad you've found this place of support & love.
Kiwi...I love your DH!!! Cyclops has the best home...truly where he's meant to be (somebody said that!). I have to share that Penny's friend told me her kitty will not leave her bedside....such love.
Like GG..I am behind on reading...thinking of everyone all the time, though. I also saw the video from the young mom. I shared it on fb...then showed my DH. He had the oddest look on his face...then said it was too harsh. I spent the longest time not knowing how to take that. So...being the chemo-brained, can't think for myself or make a decision to save my life person I've become...I took it off. When I shared what happened w/my 36 yr old daughter, she said it's ok...that 4 of her friends-3 young gals & a guy, had shared it. In my mind, that made me even happier...it's working.
Love & healing to all!
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dune - looking great !
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Well Hello Ladies..been a while...I read daily but my willing to type is useless...I have been on Halaven now for 5 to 6 treatments..each and every one of them have been hard...with fevers up to 103.2 and nausea and vomiting for 3 to 5 days after treatment...this last one on Tuesday OC dropped the dose down to 20...and it stilled ran me a muck...fever/sweats where I woke up soaked to the bones..at 3am shower and stripping the bed...I have out of town guest for the last 2 weeks and I have only been able to enjoy a day with them...other wise I was in bed...UGH...I have lost more weight 15 lbs...I just can't seem to eat ....I literaly force myself to eat but later just "up" it comes for at least the 4-5 days after treatment and I keep up on my Zofran/Lorazapam too...Since April 2014 till now I have lost 85 lbs...I am so tired...fighting to gain weight...
I need to get stronger going on a trip to Oregon end of this mth...a gift from the Adult Wish Foundation here in Idaho. My OC and others from my clinic, nominated me for this and I got my wish granted..I really want to go to the ocean and my son is coming with me...I just feel like this might be my last time to travel like this for a while...I really need to regain my strength back and about 20 lbs back...Other wise I have been OK...just fighting this Halvalen SE is taking it's toll..
Again..I know I don't keep up with you all individually ...but listen I read everyday...and today...I got these figures typing cuz I need encouragement or some wisdom and ideas to help me with this journey...I look like a scare crow...just saying...
I love and miss you all...I am just trying to keep my faith and hope up at this time...Keep writing your experiences with this treatment...I hope I will gain more hope from it all
Peace and Love Carla
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Dune - you look mahvalous dahling! Love your smile!
Carla - so good to hear from you. Sorry you're having a rough time. Sending hugs.
Patty - migrane is not fair!
Cool about the video Ronnie Kay. My DH didn't like the video either. Wouldn't comment on it, but wouldn't share it on FB. I think sometimes our reality is too hard for our loved ones to face.
Hugs and much love to everyone - especially those I've missed!
Terre
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Carla, I don't know you but I sure wish I could help you in some way. But Boise is a long way from NE Ohio. So I've put you in my pocket and am going to manifest a great trip to Oregon with all the power I have. And the flower is for you.
Patty, migraines are terrible. I hope yours has eased up by now.
Milaandra, the pain is hard to describe. It's easier to say what it ISN'T than what it is. It's not like arthritis, it's not in a joint (it's in my actual big hip bone whose name escapes me for the moment), it's not like my degenerative disc disease pain, it's not like the AI side effect pain... it doesn't hurt all the time but as time goes by hurts for longer periods of time. It's not a large pain. It's not in a joint. Oh, I already said that, lol. So now you know what it's not and, just like me, don't know what it is. It just hurts differently all the time. Sometimes it hurts when I am sitting, other times it doesn't. Sometimes it hurts when I'm walking (rarely but sometimes affecting my gait), sometimes it doesn't. Sometimes it stays for weeks at a time, sometimes not. I know... I'm no help at all. My MO had me do an xray and also checked on the latest PET and neither showed anything. However, if this is what met pain is like, I'm not at all impressed. Ugh. F'ing cancer.
Hope everyone is well... as time goes by and I read I am starting to feel like I "know" some of you.
JJ
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Carla- hang in there! Maybe you can take a little break from all that chemo? Sounds like your body just doesn't want it! I hope you start to feel better for your trip and just for quality of life in general....
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Jean - at the risk of being too personal - where exactly is the pain in your big hip bone? On the side? In back? The reason I ask is that I had similar going on and when I described it to my MO, he told me to stand up. He put his finger on my sore spot and said "is it there?" After screaming "Yikes!" I told him it was. He said it was typical pain associated with Femara and that was a Femara "hot spot". It comes and goes. And when it comes, it hurts like hell. Just a burning ache that feels like it's deep in the bone. My scans are clear and blood work is great.
Anyway, just tossing that out as an idea.
Love the flower! Definitely need spring flowers as it's winter here and a bit gloomy.
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Oh, Carla, Halavan sounds brutal on you! Is your onc planning to keep you on it in spite of the fevers, weight loss and all? If so, hopefully the reduced dose will make a difference very soon. My only other thought for what you're going through (besides wondering if there's an alternative chemo) is medical marijuana. Is it legal in Idaho? I'm not talking about smoking it, but some of the oil blends appear to have very promising benefits for nausea, weight loss, and some of what you're dealing with. Here's a link someone just sent me about it. (It's legal with an RX in CA.)
http://sclabs.com/learn/ailment-guide.html(((Hugs))) to you, and I hope the Oregon trip with your son is very enriching for both your body & soul! Be sure to take some photos for us!
PS ~ On the above link, click on the "Ailment Guide"
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Hi All -- Have been keeping up with all the posts, but haven't had time to jump in. I just wanted to take a minute today to wish you well, Carla. It sounds like you're having a hellish time, and I pray for you that it all works and restores you to a decent quality of life. That thought goes out to all of you who are having a hard time right now.
I am doing pretty well. My tm's were down to 19 last week from 99 in January when I was dx'd. The only problem I've been having is terrible insomnia. It's just been grinding me down, and I've been mentioning it to my MO at my monthly visits, but I really focused on it last week when I saw him. After we talked, he said he thinks I'm mildly depressed, which kind of shocked me, yet felt a bit true. I feel like an idiot saying this, but I feel like I'm in limbo all the time. I got this awful diagnosis in January, but I have no symptoms -- no pain, no illness. I feel fine, yet I have this diagnosis hanging over my head. I've never been depressed in my life, and I feel like I shouldn't be because I'm feeling good physically and obviously responding well to treatment. It's just that I feel like I have a sword hanging over my head waiting to drop. I read these posts and see how people are really struggling and I feel that I shouldn't complain, and I'm not really. I'm very grateful to be doing so well. I guess this disease is really a mind@#%&*. So now I'm on a mild antidepressant that seems to be helping my sleeping, though it's only been a few nights. I'm hoping it works because I start teaching my university classes again in a couple of weeks, and they're morning classes, so I can't sleep in to make up for lost sleep earlier in the night. Fortunately it's not too expensive because my insurance is so far refusing to pay for it because they think it's too risky for someone over 65. I turned 67 last week, still teach at the university, take care of myself just fine, drive, etc, but suddenly I'm too old and feeble to take a pill at night? They don't like that it makes me drowsy, but that's why I'm taking it! It's insane. I didn't know that 65 was my expiration date.
Enough of my whining. I hope everyone is having a good day. It's sunny and warm here for a change, so I think I'll go outside and take it in. Prayers and healing energy to all of you today and every day.
Sharon
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Hi Sharon I just wanted to chip in and mentionEd that the latest recommendations for standard of care of cancer patients adopted last year at ASCO stated that all cancer patients should be screened for depression and offered medication if appropriate so don't feel you are alone. Definitely the insurance and pharmaceutical companies don't act kind towards us when it comes down to pain medication and psychiatric medication but we have to be our own advocates and insist to be given what seems to work. I suggest you have your MD write medically necessary in your prescription it also helps if the prescribing MD has experience in treating depression. Sending you (hugs) and wishes for well being.
aurora
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Thank you, Aurora. My doc's nurse called today and said they were working hard on getting it approved, and she just called again to say they finally relented. I really resent that insurance companies think they know how we should be treated more than our doctors do! They just seem to look for reasons not to pay. Mine has been pretty good, but this was just stupid. Like we don't have enough to worry about!!
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Sharon, you have so perfectly described the "in limbo" feeling I think a lot of us have. Not just "in limbo," but always holding our breath, or so it seems... waiting for the next blindsiding news or other shoe to drop. I think we all hear ya and totally empathize!
I also recently asked for a sleep aid and my onc gave me the lowest dose of Xanax. But I've only used it 3x, because even though it does help me sleep through the night, it flattens out my mood the next day to the point that I just feel kind of down, which is almost as bad as not sleeping well.
Great that your TMs are down that much!!! WooHoo! And glad the insurance coverage got resolved. Dealing with Stage IV bc is enough without insurance frustrations!!! Big (((HUGS))) to you! Deanna
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KiwiCatMom, no worries about being too personal!
You explained the pain very well so I wonder if this is a SE from aromasin. It's sort of at the top of my right hip bone and even if it isn't hurting, it will do so when I press on it. I'll have to talk to my MO about it next week when I see her.
Sharon, I get that "in limbo" feeling. I've had it for a long time. For me it got a lot better but it has never gone away. I hope it goes totally away for you.
JJ
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Hi Jean - my Femara pain spot is at the top of my right hip, on kind of the far right back side of my pelvis (basically just above the right side of my right butt cheek). I also get one at the top of my pelvis on the left side - and it's directly on the side, not in back. And those are the ones my MO said were definitely common side effect pain spots. He was able to find them (and hurt me by pushing on them) without me telling him where they were. So while you're on a different AI, I would guess it's a reasonable possibility that it's a SE and not progression. I doubted my scans too when I had the pain, so I totally get where you're coming from.
Ah Sharon....such is the life of a Stage IV person, I do believe. I think most of us are on something for depression, anxiety, etc. A while back (maybe a year?) there was a bit of a poll on this thread and everyone was on something - Prozac, Zoloft, Xanax, etc. You're only six months into this. It takes a while to get out of limbo. Took me a huge amount of work to get out of limbo, and there's part of me that still lives there. My manager said "this disease is a real mind f--k, isn't it?" And she's right. It plays with your head. I agonised for months over whether I should buy a new car with a three year loan because my original MO said I probably wouldn't be around to pay it off. My new MO says I should buy a house (I can pay it off in about 7 years). So having an MO who is on my side, counselling, and Prozac keep me mostly ok. And lots of mental work and reminding myself I'm ok right now, that worrying and being in limbo isn't going to change my outcome, etc. And it is damn depressing to have this crap disease. I've spiralled into some nasty black spaces a few times (including quite recently), and it's a constant battle for me to keep myself in check.
Mostly saying that so you know you're not alone. Remember, "normal" is a cycle on the washing machine, otherwise there is no such thing.
Hugs to all,
Terre
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Sharon, It's nice to hear from you - I was thinking about you lately. Very good news on your TMs! Limbo - ah yes, I hear you. It took me a few months to get out of that state and I still hop in and out of there once in a while, but it doesn't last as long. I also take meds to help me with my mental and sleep. IMO, lack of sleep is a definite no no and affects the physical and metal wellness. Be kind to yourself. And if you feel that the current anti-depressant is not helping down the line, try another one. It can be trial and error.Terre - I just love the washing machine cycle!
I have my pamidronate infusion this morning, of course on a nice sunny and warm day. Oh well...
Wishing all you wonderful ladies a nice and pain free day. One day at a time.
Linda
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Hello to all, just popping in as I've been away a little while. I'm up to date on everyone's posts and thinking of you all and sending hugs. I've been busy keeping my niece entertained and today she is leaving to go back to England. We've had her here for almost 10 months as she came to do a year of studies in Canada. A sad day today, it's been so nice having her here and a good distraction for me. Wishing you all a great pain free day! JustJean, Sharon and Aurora, nice to hear from you! Hugs, Annie
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