Bone Mets Thread
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Really good article - a bit long, but sure hit home for me. And I'm sure it will for others too.
http://www.huffingtonpost.com/cindy-finch-msw-lics...
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Terre, wow that is awesome news and I can't even tell you how happy I am for you! 2 years of stability is incredible and here's to many more for you! Sorry about the accusing prick at your work, I would have put him in his place, don't let it get to you, there is much for you to celebrate. I'm doing a little happy dance for you.
Sharon, so happy to hear of your upcoming marriage. I second what Terre said, we want pics. Happy you're feeling good!
Deanna, I signed the petition and thanks for posting that. I hope you are feeling well.
ScienceGirl, yay to tumor markers in the normal range, great news!
PattyPepper, how are you feeling today? Are you noticing more improvement since the surgery? I hope so.
Carla, I hope today is a brighter day. I think we all experience the same sad thoughts from time to time. Hugs to you.
Well we got snowed in yesterday, there was close to a foot and a half. Snow plow buried us in with a nice 3 foot pile of snow at the end of our driveway. Did I mention I want Spring?
Hugs to all, Annie
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Ugh! Those plows! Can't live with them, can't live without them.
Much congratulations to Sharon and Rebecca.
Gotta get dressed for yoga class so TTYL.
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Deanna - thanks for the petition. I signed it and have forwarded the link to friends asking for their signature.Terre, Sciencegirl and Jobur - doing a happy dance for you!
Carla - Hope you're feeling better today. Thinking of you.
Congratulations Sharon!
Patty - hope the "freezing" is bringing you a lot of relief.
Annie - gosh all that snow - hang in there. Not much snow here (yet!)
Hugs to all
Linda
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Yes, sounds like great news! But what do they mean by "previously untreated?"
Editing to add: Just found this in my email from UCLA. http://www.cancer.ucla.edu/index.aspx?recordid=792...
If the link takes you to a list of articles, it's the top one.
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Awesome news on the Pablociclib! Previously untreated just means they haven't done trials on those previously treated. They started an Expanded Access trial to test it for those that are 'pretreated". I, for one, am so happy!
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I'm so happy for you Romansma!I wonder when Health Canada will approve Ibrance (or other countries). If my research is right, Femera was approved by the FDA in 1998 and Health Canada approved it in 2006. I hope I'm wrong and I hope Health Canada will not drag its heels on Ibrance.
Linda
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Great news on the Ibrance! I'm seeing my MO Friday and wonder what he'll have to say about it. The list of side effects is daunting, but if it works.....
I also wonder when it will actually be available and how long it will take insurance companies to cover it. But it's a huge step forward, and I'm very happy to see it come, especially for patients who are in the greatest need right now.
Thanks for all your congrats on our upcoming marriage. It was a bit hysterical applying for the license yesterday. Bureaucracy at its best! The form was set up for a bride and groom, so I just started crossing out groom and writing in bride, but half way through the thing I just couldn't make it work, so I took it back to the counter and questioned the clerk, who basically did not want to be bothered. She said the new forms weren't in yet, so one of us would have to be the groom. I was more than annoyed, but Rebecca volunteered as it was a formality and she sometimes has a better, more gracious perspective than I do with my hot temper (I've gotten better with age, but still...). So I got a second form and filled it out all over again and took it back to the counter. Now some guy emerges with another form and says that they just got the right form in and we have a choice to redo it or just stick with the finished one. I wanted it right, so I took the new one and filled it out for now the third time. That was the charm apparently, and an hour later we were all set. We don't actually get the license until next Monday, just before the ceremony. What a fiasco. Apparently we are the first same-sex couple in Milwaukee County to get the new gender-neutral form. Rebecca is quite a beautiful woman and would have made a lovely groom, but she'll be a much lovelier bride!
Hope everyone has a good night.
Sharon
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Sharon - I laughed out loud at your story - what a fiasco indeed! Not laughing to make fun of the situation, but I just had this vision from my past in the midwestern US. Congrats on being the first!!! And doing the right form - that took some patience no doubt.
I have some friends (male and female) who were working at a project site in backwoods Georgia or Tennessee or similar (don't mean to offend anyone....this is funny). She was 35 and he was 38 and it was the first marriage for both. They had been together a while and decided on a bit of a whim to get married. So they went to the clerk's office in this little town and the clerk would not believe they hadn't been married before. She said that it was "impossible" for "people so old to not be married before." They finally convinced her to issue the license, but she made a lot of calls and did a lot of checking, so it was a process. The groom in question has the last name of Noll. So, part 2 of this is that the clerk said she thought it was a phoney last name. They asked why, and she said, "Number 11 as a last name? That's just not right!" So his nickname is Number 11 now.
I don't know how long big pharma will take to approve Ibrance here; not holding my breath. But given that my MO got a Queen's honour award for getting herceptin approved here, I'm hopeful. http://www.breastcancer.org.nz/Share-your-story/Tr... - that my MO! I do love him.
I went to the GP today. He thinks I have food poisoning, so I get to have some tests done. Ick. Stool sample time. Husband doesn't help in that he went and found a bottle of glitter and suggested I sprinkle it on the sample.
Sick puppy that he is. But at least it's not cancer. My blood work is near perfect; the only red line (out of limit) was a reading of 251 which is above the normal range of 250 on one liver enzyme. Everything is is perfect and my TMs are at 17. My bone in my spine and in my hip has regrown a bit! I see the orthopedic tomorrow; will be interesting to see my femur and hardware x-ray.
Hugs to all,
Terre
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Not all city clerks are so difficult. I helped arrange a wedding ceremony for friends from Texas who came to New York for their ceremony. (Texas will have same-sex marriage when the Supremes drag them kicking and screaming into the twenty-first century.) Susie had been widowed 30 years before and was having the death certificate sent from Colorado, but meanwhile couldn't remember the date of death. The clerk was very sympathetic and helped them get the license the necessary 24 hours before the ceremony. They had a lovely wedding in front of Buttermilk Falls in Ithaca, New York with my Unitarian-Universalist minister officiating.
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Funny stories!! Love the one KCM, I don't know what that clerk would have thought about me & my better half. I am 56 & he is 68 & neither one of us has ever been married, been together for 34 years! Now that I'm stage IV, we have talked about actually getting the piece of paper but I doubt we will.
Congrats Sharon & Rebecca! Loved your story, I wouldn't have been as patient!
Interesting about the new drug, I hope it will be approved here before I need it (and yes, it is all about me!! LOL!!)
Carla, hope you're feeling a bit better.
I know I'm missed so many on this thread. I hope everyone is feeling not too bad.
DH surprised me with tickets to the Tragically Hip in Victoria tomorrow, so I will be away for a couple of days. Back on Friday!! Take care everyone, Cheers, Dee
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Beautiful wedding photo, Carpe! What a lovely setting and couple!
Dee - just don't go to small town USA to get married!
The clerk apparently told Number 11 and his bride that nobody over 20 has ever asked for a first time license before. Carla - hope things look better today. This is a damn hard disease to deal with. The fear and uncertainty just suck.
Hugs to all,
Terre
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Thrilled to hear that Palbociclib got FDA approved as "Ibrance" under Pfizer. Hope this has a positive impact on so many of us exhausting ER+ medications.
I went to UCSF last week to see about getting onto a trial since A/A has failed me. They are looking to place me in a trial coming up with Tamoxafin, Faslodex & an immune therapy (don't know what this would be). I guess I would have a choice to go on Ibrance or this trial now. I have not done tamoxafin or faslodex yet.
Hopes Palbociclib works for many of us.
Terri
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Terri - so sorry the A/A has failed you - that sucks. But so hopeful for you with the trial - may it kick your cancer to the kerb, never to return!
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Not good news on my scan. Bone mets are on the move and liver tumor has grown. I'll be starting Navelbine next week.
Leah
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Great news on the new drug, but I guess I better stop spending money like I don't have enough time to spend it. Whooooops! Muahahahaha!
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Leah, I am sorry you did not get better news from your scan. They'll get those mets with the next drug. We are lucky to live in a time when they have so many therapies available, particularly for ER+ people.
Dee, have a great time in Victoria.
Speaking of Number 11: I address envelopes for work. One of the names on my list Monday was . . . P. Yu. Really it was.
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I went to yoga yesterday. My favorite time is relaxation at the end. You can lie on the mat, sit on the mat, sit on a chair, however you are comfortable. I lie on the mat with my legs up on the chair. Anyway, I cannot turn my mind off, so I'm looking around at the way the barn was built (without nails by Amish). Way up high there was a cool spider web, but I couldn't find the spider. I noticed the lady next to me sitting on the chair but oh soooo relaxed. I silently commended her for her ability to relax so well. Well ...... it turns out she was unconscious. LOL. I can laugh now because she is ok and apparently this has happened to her before, when she puts her head too low. 911 was called but they had her lucid before emergency personnel got there. It was some kind of infarction, but it presented as her sitting in the chair with her head nodded down but her eyes open. So, don't be having a medical emergency next to me. I'm likely to be admiring you for your ability to get so relaxed.
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Leah, so sorry to hear of your progression. I'm praying Navelbine works wonders for you, sending healing thoughts your way.
Dunesleeper, honestly you crack me up. Thank God the woman was ok and got the help she needed. Good for you joining a yoga class. I tried to bend down to touch my toes yesterday and thought I was going to break my back. Seriously, it hurt so bad!
Dee, enjoy your time away in Victoria and how nice of dh to do that for you!
PattyPepper, how are you feeling? I hope things are improving.
Hugs to all, Annie
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Leah,
I'm so sorry to hear your news. May Navelbine be the "big guns" that blast those buggers to pieces
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Oh, crap, Leah! I'm so sorry about your news. I hope and pray Navelbine will be good to you!
Dune, you are a hoot! Your yoga class story is too funny!
And, Sharon, too funny about getting your marriage license. I'm glad WI now has a proper form! Sounds like you may have been the first couple to use it. No doubt that will become a family "back in the day" tale for many years to come. And Terre, that was a funny story about your friends' experience in the deep South! Wow! Talk about culture shock! And great news about the very low TMs! If you have food poisoning, any idea where it came from?
Carla and Romansma, hope you're both feeling a bit better today. And special thoughts going out to anyone having tests or waiting for results this week. I seem to think there were some besides Leah, and apologize for not going back through two or three pages to catch everyone by name. Just know our group as a whole is always in my heart & prayers!
For those of you who have been in the Palbociclib (which I may never learn to spell!) trial, what have the SEs been, besides the one I can find mentioned -- myelosuppression? And has myelosuppression been a factor for you?
(((Hugs))) to all, especially Leah! Deanna
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Hi all,
Leah - sorry about progression and I wish you the best of luck with your new tx.
Dune - I laughed so much but thank God she's OK.
I read that the cost for 1 month's supply of Ibrance is US$9,850.00. Amazing!
Linda
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Right in line with Afinitor, Linda. Crazy
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Leah - as they say here in New Zealand - Bugger! I am so sorry to hear that things are on the move, and praying that this next drug kicks the cancer's bum. Sending hugs and good thoughts your way.
Dune - you may be replacing me as the top form of comic relief on this thread! And that's a good thing. Deep relaxation indeed. That was so funny. I may have to retell that on Facebook (with no names, of course). Because that is totally something my friends would expect me to do (i.e., not realise someone was unconscious). Also love P. Yu! Too funny!
As Deanna said, good thoughts to everyone . . . I'm off to the orthopedic surgeon in a few minutes for my two year follow up.
Hugs to all,
Terre
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Oh, great. They find a helpful drug for us and then make it obscenely expensive. Insurance companies will love that.
Dune, I loved your yoga story!
Leah, so sorry about your bad news. Let's hope the new treatment does the job. Sending you lots of healing energy.
I hope everyone is feeling decent today.
Sharon
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Romansma,
I quit a lot of stuff because of QOL issues, I felt like a whining baby, guilty quitter loser. Then I woke up. Its not the length of life for me.....its the depth of it. Who cares how long we live if we have no pleasure. Anyway, quitting them all lead me to my current option which is working great for me. I Pray for you to have the courage to walk away from suffering. NO ONE deserves that. To thine own self be true (Shakespeare) Keep talking...That helps too huh?
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Romansma,
I quit a lot of stuff because of QOL issues, I felt like a whining baby, guilty quitter loser. Then I woke up. Its not the length of life for me.....its the depth of it. Who cares how long we live if we have no pleasure. Anyway, quitting them all lead me to my current option which is working great for me. I Pray for you to have the courage to walk away from suffering. NO ONE deserves that. To thine own self be true (Shakespeare) Keep talking...That helps too huh?
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Thank you, Valerie. My MO and psychologist were both very supportive today with my decision to quit the Xeloda. It might be an option for me later, but for now, I need quality! We are hot on the trail for Ibrance. Problem is $$ right now. Over $9k per month. Takes insurance companies a while to put new drugs on the approved list. I just downloaded an application to ask Pfizer to give it to mefor free. I'm feeling upbeat that something will go my way here!
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Sending good thoughts your way, Romansma...and toward your insurance company!
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