Bone Mets Thread
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Terre, I love that picture! A magpie, a pig and a dog all chillentogether! So darn cute!
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awww puppy pics. How adorable
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Terre,
The picture is great. You are a very busy person. Besides working, settling into a new home, harvesting fruits and vegetables, mowing the grass, taking care of cats and other animals, going for treatments, spending time with your DH, and giving your support to all of your everyone here on these discussion boards, what do you do with all your time? Haha. Seriously, I don't know how you do it all. You are simply amazing.
Lynne
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Thanks Lynne. That's so sweet of you! I really don't have many treatments; a couple of scans a year and a couple of MO appointments a year. In my spare time? I work!
I have two mom cats and three kittens with me tonight (my DH is disavowing any interaction with the beasts). They go to Kitten Inn tomorrow. They are adorable. The people I got them from are poor excuses for humanity, but at least these beings are safe. They are really sweet; the moms are thin and starved for affection as well as food. So I've spent some time playing with them. Also harvested a laundry basket full of lemons, grapefruit, and oranges to donate to the Kitten Inn. They'll make jam and sell it to raise money. Vet bills run about $20K a month during kitten seasons. HUHA also does amazing work; they rescued a blind donkey, the magpie, the sheep, four cats, and a dog on an epic road trip a few weeks ago. They also have rescued lab monkeys and dogs, and they rescue battery hens and rehome them. And they have horses, goats, sheep, and all sorts. Really amazing organisation and the founder is inspirational. She has a book; it's only $3.28 for Kindle on Amazon. http://www.amazon.com/Animal-Magic-journey-thousan...=sr_1_1?ie=UTF8&qid=1451296062&sr=8-1&keywords=carolyn+press-mckenzieProceeds from the book go back to the organisation if you're interested. I don't think the link above pasted right, but if you look for carolyn press-mckenzie, Animal Magic, you'll find it
And Lynne - compared to what you have going on in your life, I'm a slacker. Hoping your DH continues to improve and to just say no to dialysis.
Hugs to all,
Terre
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Hello everyone! I am loving all the dog photos! Makes a great start to my day. Terre, your pig,dog and magpie picture is so cute. I have to order something from Amazon today and will order the Animal Magic.
Mary Ann( Mab60) you are not a failure. The AI's take some getting use to. Have you tried the third one Arimidex? Good luck with your upcoming surgery and let your onc know how you are feeling on the AI's. Keep us posted.
Patty good luck with your PET scan. Did the colonoscopy show anything?
We are going to have a winter storm move in later today so that is the end of our 'mild' winter. Glad my son flew in yesterday. It is so good to have him home. He and his girlfriend are going to make a big dinner for us tonight. Best medicine ever.
Hugs to all....and welcome also to Noni.
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Good morning all,
I just love, love and love all the dog pics! They all have different personalities just by their photos! And guess what? Praline is as nice and well trained as she is beautiful. We celebrated our 2 weeks of living together yesterday. Can't understand how anyone could get rid of her, but I'm now the lucky owner! I also have a cat - will post pic sometime.
Noni and Mary Ann - welcome to this thread. I also had pain for a long time that was brushed off by my GP until I couldn't walk without crutches. For what it's worth, after 2 years on Femara, I'm doing very well. Recent scans show mets are stable and some are improving/regressing. Also had rads to several areas for pain relief over the 2 years. I feel soooo much better than prior to dx. Depending on SEs, a change in Hormone Blockers could be considered. OTC anti-inflammatories with Tylenol is usually very good for pain caused by HB. Mary Ann - good luck with surgery.
Lindalou - Glad your son made it and enjoy every minute!
Terre - I am totally envious of all your fruits, eggs etc (and your energy!). The scenery must be breathtaking.
Lynn - hoping today brings more progress for DH. It's very tiring hanging around hospitals and I hope you manage to sleep well and to take good care of yourself. You and hubby continue to be in my thoughts and prayers.
Patty - I'll bet you're weak and tired! One day at a time sweet Patty. And praying for good scan results!
Aurora - sorry about your fall! but YAY on not breaking anything.
Wishing you all a good day!
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Lindalou,
Since we're neighbors, we'll be getting the snow a bit sooner than you. When the weathermen freak out about predictions, I just laugh bc they're usually wrong. Right now they say 6 to 10 inches. I'm just happy to be at home with nowhere to go.
I love all our fur baby photos. There truly is something soothing about 4 legged critters, well even birds for that matter. I posted photos of my two guinea pig brothers I adopted this fall. I'm still getting such a kick out of them.
I have my second visit w my new onc on Wednesday. She wants to do a baseline PET/CT before starting me on Ibrance.
Warm hugs to Caryn, Terre, Patty, Linda, Lindalou, Anne, Chelle, Stefanie and all the rest of you wonderful ladies. Happy New Year too. May 2016 be a break-thru year for metastatic breast cancer.
Amy
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Love the pet pictures! They certainly seem like a bright spot in your lives! I'll have to borrow my grand dog until DH warms up to the idea of a pet :-) Hawaii looks amazing, too! It's definitely time to find a beach.
Little Scarlett looks precious! These are the kinds of events worth living for. My youngest wants a baby in the worst way and I want to hold that baby in my arms so I know her dream has come true.
Ice storms here today and lab tests to see if I can go back on Ibrance...my platelets tanked after the first 3 weeks so I've been off it a month. I had thought this was arthritis for a number of years and felt good before my dx. Now that I'm taking meds I'm achy all the time and tired as well. Looking for the upside. Maybe it's the nice people we meet in our new world.
Being a recent "Board" member, what I'm noticing is the incredible support you have all provided to these sisters we've just lost and those who remain. There are so many days when I want to stay in denial and act normal, but the experience of how you all are so REAL about what we are experiencing is an anchor. It makes it possible to LIVE with BC, even the lousy stuff, as long as possible. The meds advice, travel tips, the courage you all display...thank you all!
Kathryn
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Linda the doggie is gorgeous such a cutie and I love the name.
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Great picture, Terre! And yes, whoever said this was the perfect diversion for our mutual sadness was absolutely right!
Aurora, be careful! No more falls allowed!
Mab/Mary Anne, so sorry to learn about the pain issue you've had with Femara and Aromasin. That's a shame that you haven't been able to stay on either of them. Hopefully you and your onc can figure out something you can be on longer after your surgery.
This is Teek. He was also a rescue.
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Just popping in quickly to say that Teek is adorable!
All the doggies are great! 0 -
Hi everyone. First post here. I have read your stories for two weeks. My Mom, 71, was diagnosed 12-12 with stage IV with bone mets in every bone. Seems as though no solid organs but contrast was limited at the time because of hypercalcemia. She is in the hospital still. Tomorrow having a plate and pin placed in her broken elbow. She has multiple broken ribs and a broken humerus. She had a rod placed in the femur last week. She has been started on arimidex, awaiting her 2 results which likely positive but confirming with FISH. I'm trying to be strong for her but would love to join your community. No prognosis has been offered. I have a 2 year old and it seems she won't be old enough to remember Grandma. :
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Nicki, I'm so sorry about your Mom, but I'm glad you've found us. Her situation sounds bad, I know, but trust me -- as long as she gets the fractures repaired, and as long as Arimidex kicks in and works well for her, which it should, there's every chance she will be doing much better very soon, and hopefully will be here for you and your daughter for a very long time. I know it's difficult to grasp and believe that when she's just gotten her dx and everything seems very bleak and maybe even going downhill fast. But all of that has happened while her mets went untreated. Once she recovers from her surgeries and those broken ribs, the difference will hopefully be astounding to you both. I and several others here have extensive bone mets, and I'm sure they will tell you much the same thing -- that everything will look much brighter once her fractures are repaired and her med starts working.
Two more quick things worth sharing off the top of my head... Be sure your Mom has an optimistic, positive oncologist she likes and trusts! A doom and gloom attitude is never helpful. It's also really important that she gets on the right pain meds for her, which is a very individual thing. Being as pain-free as possible is essential to healing, and she shouldn't have to be in pain -- which hopefully will also improve with the tx she's having.
I hope you'll share this with your Mom, and absolutely keep us posted! (((Hugs))) to you both, Deanna
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Hi Nicki! Welcome to the group. I don't have much to add over what Deanna said. The first few months are mentally and physically hard, but once things start being treated, pins are in places, surgeries heal, etc, life looks much brighter. There's some threads here that may be helpful:
https://community.breastcancer.org/forum/8/topics/...
https://community.breastcancer.org/forum/8/topics/...
Hopefully those links work.
I'm three years stable since dx; there are others who are 5, 10, 15 years stable. So it's not hopeless, and not all doom and gloom. Deanna is so right about getting the right oncologist and medical team who haven't written your mom off and who are optimistic. And don't read or believe the statistics - they are out of date and don't reflect current treatments or survival rates. We do lose people to Stage IV bc, and it's awful. But we also have many who survive and live relatively normal lives.
Sending good thoughts to you and your mom.
Terre
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Welcome Niki! I don't post much here but am here nearly every day reading and learning. You will learn more here then any doctor could ever tell you!
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welcome Nicki, I am so sorry to hear about your mom. A friend gave me a piece of advice today that miracles DO happen. While there may not be a cure, we pray for the cancer to become stable, tumors to shrink and no no pain. Like you, my mom was also diagnosed recently. It's discouraging and I am very sad she won't be around to see my get married and have kids someday.
I've been lurking the past few days and hope all the ladies are doing well on here. I am sorry to not address you all individually but I'm thinking of you all.
My mom seemed to be doing well during the radiation and said that apart from being tired, felt back to her normal self. That has since changed as she is having unbearable pain. Just started on heavier pain meds. The doctor said the mets may hurt worse as the meds target the cancer but she is getting discouraged that a week ago she was walking and having little pain and now is having such a hard time. She worries she might have a fracture in her hip or groin and doesnt have a doc. Appt until next week and no scans until early february. My heart goes out to her. She's doing falsodex and anatstrazole right now.
Does anyone have advice for the pain she's having? I'm doing my best to keep her positive. My heart breaks that she's in so much pain.
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DaughterLove, your Mom's increased pain might be due to tumor flare, either from the rads (which others here know more about than I do), or from her meds. Tumor flare just means the tumor cells are reacting to whatever is snuffing them out, and going a bit crazy in the process. So, yes, this could be the reason for all or some of her increased or new pain. OTOH, if she truly suspects a fracture, that is not something to wait for an onc appt or scan, unless they are so booked up, it's impossible to get in sooner. I waited around for a scheduled MRI when I was in truly excruciating pain, and in the meantime my femur fracture got significantly worse -- until I literally couldn't move w/out screaming in agony, and surgery became a true emergency.
Here's a really interesting article I just read this a.m. and highly recommend. It's about how the pain women experience is often minimized by everyone, including nurses and docs and maybe even our families and ourselves, although certainly not intentionally. I'm not sure how often this happens when we're dealing with mbc, because hopefully most docs realize our pain can be extremely bad. But I also vividly recall my local onc kind of shaking his head, like it simply came with the territory, when, in fact, I had a couple of serious undx'd fractures going on. But I feel the concept is applicable to your Mom's situation, DL -- like maybe thinking waiting for an upcoming appt or scan should be okay (downplaying the pain), when it may not be.
http://www.theatlantic.com/health/archive/2015/10/...
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Good morning all!
I'm afraid that trying to stay away from here is a major fail. When I wasn't checking in here, I still thought about everyone & worried about those having problems. Trying get out of the cancer head space just isn't going to work for me. It's a fact of my life & I must just deal with it.
I'm going back to read what I've missed on the threads, but in scrolling through, I saw many furry friends, great for morale, lets keep posting good pics! BBL, Cheers, Dee
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Good to see you, Dee! I've been thinking about you, too. And, yes, it's very hard to take even a short break without quickly getting out of the loop and missing things.
Speaking of dogs, I hope you all will think this short video is as amusing as I do!
https://www.facebook.com/207215726067454/videos/80...
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Thanks DLB, I just shared some of this info with my mom. I do hope she joins the boards soon.
I just wish there was a way to help her pain go away. She's discouraged that her life will never be normal again and for it to happen so soon after dx. I tell her that's not the case and how you ladies have all shared that the first few months will be tough but it'll get stable and she will be able to manage it better.
It's so tough as all that have had the BRCA2 mutation have passed shortly after the MBC.. (aunt from breast to lungs, grandfather from prostate to pancreas, cousin from breast to bones). I'm hoping for many good years left with my mom. Driving home to see her tomorrow and spend more time with her.
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Deanna - that's hilarious. I have a friend with a maltese-terrier cross. Alfie is pure white and loves mud. And is a bit naughty. Haven't looked at the other link yet, bu tI will in a minute. Thanks for posting those.
Dee - welcome back. I know what you mean. I've tried to take a break and can't seem to do it; miss you all too much. Sending you much love and hugs.
DaughterLove - basically, what Deanna said. My pain was so much worse right after rads, etc. I still have days when I hurt, but it's mostly from arthritis and not the cancer. Sometimes my mets spots ache a bit, but it's usually a short-term pain. I only take Celebrex for pain. That said, Deanna is so right - don't let your mom dilly dally around waiting for her appointment. If she can't be her own advocate, then you can be her advocate. And don't assume your mom won't be around for her grandchildren; there was a 20 year survivor who popped into one of the threads the other day.
Sending hugs,
Terre
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Wow, I logged in at the perfect time to responses and hope. My Mom is in the OR right now. I'm so blessed to have opened up in this thread and talk with you all. Thank you.
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Lynne, Scarlette Elizabeth is beautiful, congratulations. How is your DH doing?
Also wanted to comment about living in a fantasy world. My PCP has said to me on numerous occasions that no one would ever guess that I am living with MBC, so I have to agree that it does in fact seem hard to believe that I have a life threatening disease. I'm still working as hard as ever, but sometimes feel like if I stop that the cancer will catch up with me, it's like I'm on a hamster wheel.
Bosco, Love the pic from Hawaii, hope you're having a wonderful time.
Chelle, lovey picture, but don't like snow particularly, you can have all of ours!
Tammy, fingers crossed for good results from your PET scan.
Lindalou, Enjoy the time with your son.
Annie, thank you for posting that picture of Charlene, who could forget that?? So full of life.
Terre, so jealous of all the produce you have at your new place. I'll just pop down there & help you out with canning!
Lovelace, So scary, I can't imagine. The threat of earthquake here is always, but doesn't happen often, but tornadoes, they seem to come more & more often. Stay safe & good luck on your scan.
OMG Linda! Praline is beautiful! The photos that you sent didn't come through on my email, so I had to come here to see. Do you mind if I send a pic to my friend who has always had cocker spaniels, I know she'd love to see.
Welcome Noni & Niki, sorry you have to be here, but it's a wonderful group of women. How I ever thought I could take a break from here, I don't know, the support is incredible.
Patty, How are you? Doing better I hope.
Mary Anne good thoughts for you on hysterectomy on the 7th. I had one years ago, not too bad as far as pain & sounds like it may be a relief to get them out. Have you tried different brands of AI"s? I found that I can only tolerate certain ones, otherwise I get bad SE's.
Daughter, I had rads & the pain was incredible. I found that tylenol/ibupropen combo worked better than
narcotic pain killers. The RO suggested this to me. The flares seem to fade after 2-3 weeks, but it's heartbreaking to think you've done this & then it's worse. Trust me, too early of scanning isn't good. I was told I was progressing when in actual fact the scan was showing healing, but it looks like the same thing. Don't worry about getting a scan for your mom till the onco says it should happen.
Ok, I have learned my lesson about not coming here. I have just had to write a bloody novel to get caught up.
Hello to everyone else & Happy New Year. I hope that 2016 is the year that we get some real breakthroughs in treating MBC & that we don't have to say goodbye to any more loved ones. Cheers, Dee0 -
Good to see you back Dee. Of course you can send pics to your girlfriend. I just tried to send them again on your email.
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Loved the novel, Dee!
And you're so welcome to come and help me can stuff since I am totally clueless as to how to do it. Good thing we have a deep freezer!0 -
deanna. - love teek pic. So adorable!!!!
Dee - glad your "break" is over.
Lindalou - enjoy your supper by ds and gf. How sweet of them
Lindae. - love your new avatar of praline. 2 week and anniversary. How sweet.
I got my pet scan results. The conclusion or impression said : dramatic decrease in all areas except one. The ex given was for L5 vertebrae. Previous pet in Aug showed suv of 6.6. The SUV now is 3.2. Which is over 50% decrease. Woo hoo!!!!! Over 50% wow!!!! The only spot showing progression was my right femoral neck ( where thigh bone attaches to hip - ball and socket joint). Said ortho consult before pathologic fracture was highly advised. I had been very nervous since I had missed so many tx of Falsodex and Ibrance due to low counts, near constant vomiting and hospitalization. In hospital last time I was convinced it would be my last Christmas and I was OK with that. I Can't even up imagine how great my results will be after getting tx regularly. So very excited!!!! Crazy emotional rollercoasters in cancerland.
Hugs to all
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Whoo hoooooo Patty! Congratulations! So glad to have good news!
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Oh Patty, that is such wonderful news!!
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Great news, Patty!!!! WooHoo!!!!
Enjoy your dinner tonight, Linda! Post a pix, please! So sweet that your ds & gf want to do that! Love it!
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Patty, what wonderful news! Very happy for you!
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