Bone Mets Thread
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I had 16 Aredia infusions over the course of two years. I found that the slower the infusion rate, the better I felt afterwards. I never had one as long as 2 1/2 hours. I think 90 minutes was the average
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Man I wish somebody would rub my feet. Bosch you are one lucky girl. Enjoy
Deanna love the new pic, I wanted a new one because all of my friends think I'm melting away. I wanted to show them that I'm still here and my daughter just likes photo bombing .
Seeing my oncologist on Thursday and am already getting nervous no clue as to why. Silly, I feel great so whatever she says I will remember that.
Patty great new pic as well, love this new year new pics.
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Cristina
Ignoring London, my first choice would be Florence - it's small enough to walk round w kids, lots to see and lots of nearby towns if you wanted to do a day trip - Siena, Arezzo and San Gimignano. The ice cream is the best and the Italians love kids. If you're arty, check out Freya's Florence Tours. Also travelwithkids.com.
So many cities, it's hard to choose -Prague is lovely but not sure much for kids. If you have an urge for the Germanic cities, Munich is great and close to the Bavarian countryside. Also love Barcelona and Spain is another child friendly country.
Dublin would be great if you're not looking for sunshine.
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wendy. - awesome pic !! You certainly don't look like you are fading away to me. You look great and it looks like your dd got her good looks from you .
Bosco. Beautiful !!! Looks like you are getting the pampered treatment. Wish I was in the chair beside you. Am I reading your sign line correct : you've had mets to brain since July 2014? Wow. Impressive. Keep on whatever you are doing.
How about new 2016 avatars for all? Whatcha think ?
Ds1 is having a blast with his buddy sleeping over. I've seen him smile so often today. Which is rare. I LOVE it. Took pics to remind him how good he looks smiling. Yes,I know , "mooommmm stop taking pics " also love to see how he interacts with friends. Alot of music and girl talk going on. Proud to say he talks very respectable about girls even when he doesn't know I am listening. We are doing something right raising him yea!
Hugs all around
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Happy New Year
This thread is so busy.It is wonderful to see the dog and cat pictures. Terre your home looks and sounds wonderful. I wonder if you could juice some of that beautiful fruit. I am in about a foot and a half of snow and dreaming of gardening.
Patty I smiled at your post. My son had his best friend spend the night nye. There was not much sleep but to hear the laughter and chatting from my14 year old son was such a joy. I didnt miss the sleep.
I am off for a long. snowy drive to montana to see my daughter and mother tomorrow. Then Zometta on Thursday. Next scans in Feb. hoping they will show A/A combo is doing its job.
Peace
Mary
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Love the new pics Wendy & Patty! New avatar for 2016...have to think about what I'd do...of which cat I'd post.
Love the idea, Patty!0 -
Cjanet, I would think Barcelona. Las Ramblas, with its street performers, would be a constant source of entertainment (and gelato) for a young child. Even Gaudi's surrealistic architecture is likely to be more exciting for little guys than more traditional offerings.
Florence (and surrounding Tuscany) are simply wonderful, and there are two museums of DaVinci machines but maybe 4 is a little young to appreciate it?
How about Edinburgh? It's really fabulous, with lots to see, and you can base out of Dunbar, a quiet little town with two beaches that is only 20 minutes away by train.
Edit - I just reread your post and noticed that it was the end of March. A bit chilly for the beaches in Scotland! LOL!
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Oh, or a Mediterranean cruise! Kid's clubs!! I've never seen a miserable child on a cruise, and they even have their own kid-friendly buffet. Depending on the cruise line, they can be a great value. We like NCL
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Patty
Yes I was diagnosed w brain mets in July 2014. Had a craniotomy to remove large tumour and WBR to blast the rest and - fingers crossed - nothing since in the brain. My 3yr cancerversary coming up in a couple of weeks.
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Bosco we share February, 2013 as our dx...I was Officially dx on the 7th a date I don't think I'll ever forget.
Dee, the video of the whales is incredible. My parents live in the San Juan Islands so over the years I've seen several Orcas but never humpbacks. Wow, thanks for sharing.
Christina, I second Florence with day trips to San Ginianamo and Siena. I have done a few destination weddings in the Tuscany region, and am blown away by the beauty and culture. Good luck with your decision.
Amy
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How are mets graded? I'm sure Mom has the worst, all bones.
She is on Faslodex, Arimidex, and Xgeva.0 -
Caryn, strange how every cancer centre administers the infusions differently. The quickest here for Aredia is 2 and a half hours and there is also a 5 hour one that I almost mistakenly got twice! Glad I noticed the bottle had a different colour lid and asked.
Wendy, I must be very lucky because I get foot rubs everyday, either by dh or by one of my daughters. I find them so relaxing and my feet do hurt so it's very much appreciated. At night it actually helps me to fall asleep. Best of luck on Thursday and I'm sure everything is fine. I'm so happy to hear you're feeling great!
Patty, I love the idea of new avatars for 2016, out with the old and in with the new.
Hugs to all, Annie
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Annie,
5 hours!!!!! Wow, that is slow. Is that a different dose? Once, and only once, they sped myinfusion up to under 1 hour. Ugh, talk about feeling sick. 90 minutes seemed best for me and at that rate, I rarely/never felt badly afterwards.
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Hi all! When I had zometa, it was infused for 3 hours. And still made me sick.
Last day of Holiday vacation here..boo hoo. Could really use another month off.
But it's been fun while it lasted!Wishing everyone a good day!
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Yup, last day off for me too. I have been staying up, and consequently, waking up almost 2 hours later than I do on work days. Tomorrow morning will be quite a shock to the system. Still, I have missed my students and am looking forward to 2016 with them.
PS: Love all the scenic pics. When I win the lottery, I will visit every one of them 😄
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Niki, as far as I know, mets aren't graded, but we know which have the best prognosis. Bones only is better than bones and organ involvement. A few spots in the bones is better than extensive bone mets. Hormone sensitive is easier to deal with. However, everyone is different and people with the worst prognosis can respond beautifully to meds and do very well indeed.
Your mother is on two hormone drugs, plus the shot to strengthen her bones. No chemo.
It's a shame that the mets spread so far throughout her bones before they were discovered, but as far as I know, that makes her very uncomfortable right now but barely affects her prognosis.
If her mets are confined to the bones, and are hormone receptive, she's actually in a pretty good place. Or, she will be when she heals.
Have they done a biopsy?
Maybe you should make an appointment to talk to her oncologist.
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Deanna, I noticed your MBC diagnosis date which is today two years ago. I want to mark today for you. I would like to congratulate you for successfully confining the mets in the bones for two years. I would like to congratulate you for continuing achieving stability! Anyone else who are in the situation, you have my congratulations!
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A brief comment on grading bone mets. If a biopsy is done, it is possible to grade it, inthe same way ones primary breast tumor was graded. My bone met (yes, literally one) was a grade 1 and matched the hormone profile of my primary tumor. What this tells us is that it is slow growing and lazy. This gave my mo and myself some more info to discuss when considering tx. Bone biopsies are not always done, or possible, due to location (or perhaps other considerations).
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I just finished reading "I signed as the Doctor" Laura Lieberman MD, she is doc rad in MSKC, she gets lymphoma and she find that using Gebauer's Ethyl Chloride spray( a freezing spray that numbs instantly) helped her a lot, when they had to inject her, particularly certain areas more than other. And also Emla cream, takes 1/2 hr to work. I thought would be important to share here, it might help some that needs this product.
Dee u made me laugh seeing what you get to have down the road. You should see what I have down the road living in NYC, but there is much interestg stuff here, in a diff way. Anyway that was spectacular, I forwarded it to Dani so she could show her little girls.
Deanna love love your picture, so sophisticated. I was just thinking of Leah the other day, that is very coincidental. Maybe she will pop in. You asked me what Dani was on, so I did write up all the tx that Dani takes sometime last wk.
Mary oh the laughter of children, they do make wonders to hard times.
Patty good for you for enjoying these moments. So glad for you
Ellen - the PET is done along the CT. The Pet is superimposed w the CT usually. Just a diff modality.
Bosco what insane view. Take it all in. For us.
Wendy also love your pict, and it's really cute how your daughter photobomb u. Love it.
Annie - yeah rest is everything. I could not believe MY doc's face when he told me, I better, and he said you need to be able to take care o!f your daughter, that put things in prospective.
Nikki my advice would be if she does have to go to a dump, just try as much as possible to have pl there as much as you can, first they will treat her differently when they know she's got family looking after her, and you might avoid many medical errors they could make, it could happen anywhere but for sure in a less desirable place...
Karen - u know what a doc told my mom when she was in her eighties? She lived to mid 90's, so he was explaining to us... u know when you look under the hood of an old car...YEP my mom was right there, my sister and I thought we would just die right there!! So these ppl could be very tactless...
I am sorry I did not address everyone, hope you have a good day.
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Leah has been posting articles and shares on her FB page. I will try messenger to see if she's ok
** Leah has been posting on other threads and has signed in today
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Dee - the whales! I'm so envious! We get whales cruising by in our area, but I've managed to miss every sighting. One of my coworkers suggested we need a "cool big mammal in the harbour" app for our phones because we'll get home from work and see it on the news - too late to do anything about it! That's so awesome you got to see them!
Deanna - congrats on your cancerversary! My three year is coming up in a few weeks.
Xavo - how are you doing?
Caryn - thanks for the update on Leah!
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Yes, Xavo, how are you doing? And thank you for noticing my two-year mbc mark. This week two years ago was truly a nightmare -- not just my dx, but the weeks that led up to it, as well as the first few months of 2014. I am grateful every moment to have gotten past that, and any credit goes to my wonderful UCLA onc, my rock of a hubby, my ortho surgeon, and the gals here who were there for me from the beginning, especially during my hip surgery. I truly don't know where I would be without any of them (you)!
Early congrats to you, Terre, on your upcoming three years!
momATT, thanks for the book recommendation and product tips. I've never heard of that freezing spray. Good one to know about! Oh, and that reminds me... someone on the Ibrance thread mentioned taking a supplement called green lipped mussel for arthritis-like joint pain -- something that was recommended to her at Cancer Treatment Centers of America. I'd never heard of it, but will look into it. In the meantime, I thought I would ask if anyone here has ever used it or heard of it, as well as pass the tip along, in case anyone else wants to look into it.
And Patty... yes, Ibrance does cause dark circles under the eyes. Like you, I was just thinking I was tired, until someone else mentioned it in the Ibrance FB group, and everyone chimed in with a similar experience. So far, one of the best inexpensive concealers I've found is by NYX that comes in a little jar. I got it at CVS, but it shouldn't be too hard to find, if you need one.
Caryn, good to know that Leah has been on BCO. I had seen her FB posts, but was still concerned about her. And excellent point about grading bone mets, although I'm wondering if the degrading that goes along with bone mets pathology makes it harder to tell the grade? I think when they did the path on my femur or hip bone, they only came up with ER+ -- not a grade, as I recall. But that was done locally, and maybe another facility would have gotten more info from it.
Thank you for that incredible video, Dee!!! Not only were the whales amazing, but I was fascinated with how calm the people in the boat and even that tiny rowboat or dingy seemed -- considering a whale could have easily flipped either one of them! You are fortunate to live in such a beautiful, natural area!
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Hi Deanna,
Green lipped mussels come from New Zealand.
There have been some early trials looking at green lipped mussel extract for treating prostate and breast cancer. One Phase 1 trial found no improvement in survival rates, but the summary I found didn't say if the breast cancer patients (only 2 in the trial) were hormone positive, if other treatments were given, etc. It can cause liver and kidney damage if taken to excess. I also found a product that contains green lipped mussel extract and circumin; the warning said that it "could interfere with some chemotherapies and cancer medications" so to consult with your doctor. At any rate, it is recognised as an anti-anflammatory agent. Terre
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deanna. Thanks for the concealer suggestion. Congrats on 2 years !
Bosco. - encouraging story. Thanks for sharing. Congrats on 3 year anniversary coming up.
I hope you both see many many more years
Hugs all around
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Morning ladies,
I have a CAT scan tomorrow afternoon and an MRI Wed afternoon. Please keep positive thoughts in your heads, I've been having increased pain, so we'll see what the scans say.
Dee- love the whale video.
Everyone, thanks for the Europe recommendations. I'm really thinking Barcelona or Florence or Paris now. Not sure if this idea will come to fruition with the lack of money we have, but hey, I do want to enjoy life.
Deanna and Bosco- congrats on the cancerversaries coming up! I so want to be able to celebrate many years. I was told as I'm younger the cancer tends to be more aggressive. I hope that's wrong!
You guys mean so much to me, and help me get through the days. Just wanted to share that.
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Good morning to all,
Cristina, I'm sending all my positive mojo your way for good scan results and prayers that the increased pain is from healing and not progression. Also imagining you enjoying a trip in Europe and hoping it does come to fruition, you deserve it!
Hugs to all you wonderful ladies and prayers for a pain free week ahead!
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Good morning all,
Same here Cristina. And what a nice project to travel.
Love all the new avatars!
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Cristina, I find vacation research to be a great distraction from scanxiety! (I find pain to be an inadequate way of checking my health, by the way. Maybe because of the side effects of tamoxifen? Who knows!)
Friends of mine have had great flight deals to Milan in the spring. I think she said it was Emerites? When she's back from a cruise I'll ask her. The Italian rail service is really good, so if you get a deal anywhere from Rome north it can be well worth it. When we went to Tuscany, we flew in to Balogne, spent the night in the Mercure across from the station and just took the train to Florence in the morning.
I'll post more in a sec
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Annie love your new picture and Linda yours is so cute as well.
Christina I know how it feels to want to do things and can't because the funds just aren't there. We are trying to seek our house in the country ( the place where I was going to play with my grandchildren) and are having a tough time of it. Living in Vancouver is very expensive so no holidays in my future at least for now. Also I can't take my "medication" with me not everywhere allows marajuana . So I'm kind of trapped right now. I tell myself spring is not far away and it will be beautiful here soon. Planning a holiday and saving up for it is all part of the fun. Your kids would love Europe and you shall see it someday.
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Carpe diem! Go cheap, have an adventure, pay the bills later. We could all get hit by a bus tomorrow!
In Florence we stayed at the Hotel Crocini...cheap and cheerful with an excellent breakfast buffet included. It's in the embassy section of town, so nice and quiet, but a short walk along the river to the centre of town, or by bus. Let me know if you want to know about the cheapest tour of the Chiantigiana ever! :-D (We're bargain travellers) Siena is gorgeous and you can get there by train. We only visited Volterra briefly, but it was the prettiest, cleanest little hillside town. (And we didn't see a single vampire LOL)
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