Bone Mets Thread
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Lindalou, excited for your opportunity to discuss with a researcher about his MBC work. I'll be very interested in what you have to share.
Babs, what a wonderful surprise for your DD and a wonderful trip for you! What happiness for you to share and enjoy. Just the medicine you need right now.
Jaylea, great news about stable scans, and wishing the same for you, Gracie!
Thinking of you all and sending hugs to those dealing with pain and life's struggles with MBC and along side it.
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Hi, Bobs. Nice pictures of you and your doughter. My doughter is pregnat too and we expect the baby at Christmas. I am trying to concentrate on this, instead of my newly diagnosis of mets. to my bones.
I hope God will give more time to enjoy my secon grandson!!
Tomorrow I'll start ibrance and I am really scared of the side effects.
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Babs- Utterly charming in-laws! and indeed that is a comfort, but nobody replaces the mama and I think you will be here a long long time! Your smile in the photos truly says it all- doesn't get any better than this!
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Hi girls!
I am reading your posts and I lik how you support each other.
I have a question - does someone still work/ kind a physical / while on Famara and Ibrance?
Thank you and God bless you all
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Blueshine, Welcome to the Bone Mets thread. I am sorry you have reason to join us, but there are many people here to support you and answer your questions. I was nervous about starting ibrance, too. I had read about the horrible side effects and thought that my life would be negatively impacted. I have been on Ibrance (and Faslodex) for more than a year, and my SEs have been minimal. My blood counts do drop, but I am closely monitored. They usually rebound pretty quickly now. I did start at 125 mg and had to change to 100 mg after the first month because my counts were too low. Other than the blood counts the most common complaint I have seen is from others fatigue. I, like many others, still lead a fairly normal life and feel good. Many people on Femara and Ibrance continue to work and exercise,etc. Congratulations for the grandson who will arrive soon. My youngest granddaughter was born on the first Christmas Eve after my MBC diagnosis. She will be two this year, and is already a very active, rambunctious little girl. She keeps me hopping! I plan to celebrate many more of her birthdays. You should plan to do the same thing with your grandson.
Hugs and prayers from, Lynne
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Blueshine my dd baby boy is being delivered on 12//18! We have the Bris on 12/25. Congrats to you too! There’s nothing better than a baby to make us feel better and stronger!!!!
Yes I worked FT while on Letrozole and Ibrance. Yes I was tired but I managed and also led a very active social life too. Everyone’s se are different so don’t worry I’m advance. You’ll see how you fare-I hope well
Babs
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Blueshine - Many people work on Ibrance and Letrozol. I did work and continue to work but on mine own projects where I control my time. I bought and setup a vacation rental, for example. A lot of work, very physical, but when I am tired or dealing with scans I can ignore it. That's the main issue for me ... I do have energy ... but only when I have energy. I can't have people counting on me. Welcome.
Babs - I am confident that MSKCC will get the job done. It's not a straight path but you are being seen at the best institution in the world, IMO. That said finding a home with your spouse's family is not a given and we all need support. I am so happy that your daughter found a home across the ocean.
Also, I love the baby shower signage.
JVF - I had a small setback this morning. One diagnostic came back confirming what I suspected ... but it was not what I hoped. The information does nothing to change my plan, but it still took the wind out of my sails. I have been running the hills behind my house every day this week. Set out for my run this morning but walked most of the way.
Pain management, depression management are the first thing to take care of... I am so proud everyone for taking care of themselves. Feel free to remind me when my time comes. I am just as tough and stubborn as you all.
>Z<
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Blueshine, welcome, you will find great support and insight here. I'm about to start cycle 5 of Ibrance/Femara, and, like you, was really concerned about the side effects. But I've found the bark is much greater than the bite. The first couple of months were a bit tough, but the last two have been manageable. There is another thread specifically for this treatment, you'll get many of your questions answered there.
Z, I've been thinking of you. I remembered you had some tests lined up. Sending prayers your way.
OK, after tonights dinner of turkey enchiladas, I think I'm turkeyed out!
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Dear Z, I am sorry to hear of your setback. Breast cancer is full of nasty surprises. Good for you running those hills !
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Has anyone heard from Lita? I was hoping she had a relaxing Thanksgiving with her family
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babs, Great pictures! Shopping for baby sounds like heaven. What a gorgeous pic of you own that little black number! I'm so glad you are having a great time.
Linda, Interested in what you learn!
leapfrog, if anything, bad mouthing you will make your son resent your X, not you! I with you on the borderline depression and think if I can get help with that AND energy I'm asking at next appt.
Great post Lulabee!
Good news Jaylea and best wishes Gracie!
Z, So sorry you got a bit of downer news today. You are so proactive and diligent in your care, it's just not fair.
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Thank you Lynne! You can't imagine how much your words of encouragement helped me! I have a grate support from my husband, but nobody else knows . That's why is so good to talk to somebody about it. I hope to be able to help my doughter to raise the baby and to be happy with her.
God bless you and give you many more years
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Marie - Glad to hear your fever has broken! Coughing sounds rough. Ribs can be so painfulHope that settles down soon. Is there a MED that can help?
Hoping you feel better very soon!
JeeNee
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Babs you are giing to be pushing that little boy on the swing believe it , I do😊. So happy to see you there with all the family enjoy every moment and thanks for sharing it warms my heart
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Swess
I’m glad you are reaching out for support. Living with Metastatic Cancer is hard. . Z,Gracie, Kaption have good advice.one of the best things I have done for my selfi was to find an experienced counselor who I could talk with weekly. I actually found her using psychology.com . At the time i wanted someone close to my home. You can search geographically and profile, insurance etc.
YourOncologist’s office should be able to connect you with a social worker at the hospital.
We are listening.
JeeNee
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Z, dang it. Sorry you got thrown for a loop with bad news again. I have complete faith that you will absorb the new reality here in a few days and you will rebound like you always do, and you will get back to running those hills. You are one fierce beast of a gal and you are made of tough stuff. Also, I promise I will come around and ring your bell if you start sounding like you need a little help minding your happiness. That's what friends are for.
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Gracie, Lita was last seen yesterday according to her profile, just hast posted in several days.
Thinking of you too Lita
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Z, I hate that you got bad news!!! But I also know that you’re not gonna let that get you down. And know that I’m praying for you all the time.
Mae, thanks I’m glad to see that she at least got online was a little concerned about her I was was worried that things didn’t go well at Thanksgiving or that she was still feeling a little down.
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Hello everyone, I am hoping to be a more active post-er here, but still trying to get caught up.
Swess - Hugs to you.
Z - I am sorry to hear that you got bad news.
Babs - loved all of your pics. Paris is one of my very favorite cities. My middle DD (age 11) and I were last there about a year ago, and she was so enchanted that she wants to move there one day. I have told her that I will try to take her again in February for her birthday.
I have been doing a lot of traveling with each of my children since my diagnosis. My "husband" works for an airline so we get free flights, so I am taking advantage while I am still technically his spouse. It annoys his new girlfriend, so that's a bonus. I took all three kids to Barcelona in early August, and then took my girls to Budapest in October. On Saturday of Thanksgiving weekend, I took my oldest, DS (age 14), to NYC to shop. We left Chicago very early on Saturday morning - we arrived LGA at 9:30, shopped Soho, including standing in line at this store called Supreme (they have one in Paris, too)(I have no understanding of the appeal, but then again, I am not their target market) for over an hour just to get into the store to shop. We had macarons at Laduree, took the subway uptown for a hotdog in Times Square, stopped by the rink at Rockefeller Center, said a little prayer at St. Patrick's Cathedral, strolled up 5th Ave. to Central Park, hopped a cab back to LGA and home in Chicago by 9:30 pm. He had a wonderful time, but I was wiped out. I hide my side effects from my kids as much as I can, as they have enough to be upset about as it is.
I have gotten a prescription and started on some anti-anxiety meds as I have been feeling so overwhelmed with both my personal (going through a divorce/three devastated kids/busy full-time job) and health situation. My scan results show nothing in my brain, which I am thankful for, but major progression in my bones. I already had quite a lot of bone mets, but now according to the scan, there are new ones in bones where there previously were none (ribs, shoulder blades, sternum, skull), plus the previously existing mets have "greatly increased in metabolic activity and number." I am also to do a temporal lobe CAT scan, as they suspect mets in the temporal lobe bones may be causing my hearing loss and balance issues. So, it appears that Ibrance/Faslodex has failed. I will be starting Xeloda as soon as the pharmacy can get it cleared with my insurance. I am hoping that the co-pay won't be terrible. 4 pills in the morning and 4 at night. I will continue with my monthly Xgeva injections as well. I know I have seen a Xeloda thread on these boards, so I will be checking that out.
Thinking of you all - Lisa
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Question out of nowhere, but I think it belongs here: anyone with bone mets start out with muscle pain and spasms at mets diagnosis/before diagnosis?
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Z- sending some good mojo to help you past the bad news. Wish it helped to "know" ahead of time, but usually it makes me cuss twice. Still a bit stunned that your doc blew off the liver changes.
Hope the running helps!
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azs,
Yes, my spinal mets pain started as a muscle type backache. I kept blaming my sofa and my bed.
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Azs- I had a right rib/midback “injury” that wouldn’t heal. Seemed like just getting up from a lying down position would flare it. Everyone said that is not cancer pain. After a few months of Ibrance and faslodex it is “healed”. It didn’t act like a normal injury.
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Babs, LOVE, LOVE, LOVE all your photos! It truly is wonderful that your daughter's DH has such a large, loving family to surround them.
azs, in the fall prior to my re-dx, I had a lot of lower back pain that I chalked off to things other than mets. Have you done anything (heavy lifting, etc.?) that might have provoked your pain and spasms? You probably know, the normal rule of thumb is to give any new pain 3 weeks to resolve. It may take 2+ weeks, but most non-mets related issues do get better within that time frame. If it doesn't, or if the pain is so bad it's impacting your life, that's the time to check in with your onc to see if it merits sooner follow up. Good luck, and please keep us posted.
Z, I pulled this up for you and all of us. Hugs as you readjust your sails.
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Babs, I loved your photos also! So many precious memories! Your Dd is so blessed with you as her mother and the support of her Mil!
dlb, that is awesome! And so perfect for Z! Z, I am sorry to hear of your progression, but glad to know you are taking out your frustrations on those hills! I won't be far behind you...as I have said, MRI of hips and pelvis show possible new mets in left hip and possible bone marrow in right hip. Pet scan on the 12th and meet same day with MO. Honestly, Iam a little afraid, as the only thing for bone marrow seems to be chemo and I have spent the last 5 1/2 years fighting to never get chemo. I am sure that once Ihave a clearer picture and a treatment plan in place, I will feel a little better. 26 cycles of Ibrance/letrozole later, not bad! 3 1/2yrs on Femara only and 26 months of this, its been a good 5 1/2 yrs. I have been praying with gratitude for all the stable scans lately and praying for those of you with progression. Onward and upward as I like to say. Gracie, thinking of you and your scan results tomorrow
I got to make lots of happy memories with my Ds and his family over Thanksgiving. We will be going back for Christmas to make many more.
Hugs and prayers,
Claudia
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Bigb- wonder if you would be a candidate to move to abemaciclib? The palbociclib has worked quite well (so far) on my extensive bone marrow Mets. Other cdk inhibitors are in the pipeline as well.
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Dlb- that is so right on-that's what we do all the time!
Babs
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Nkb - It was my understanding that abemaciclib was having more sucess if a break was taken in between it and Ibrance. Don't know, but if that is true, I would probably opt for the break. I am sure my MOis 2 steps ahead of me. All my NP would do was smile and tell me she knows they are there, but everything else looks wonderful! yeah, yeah yeah....
Claudia
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Lovely pics, Babs.
To everyone else, yes, this time of year is hard. The days grow short, no sunlight, and holidays are often VERY difficult for some.
I'm trying to hold it together. My condition is accelerating from week to week. I know I'll still be here for the holidays, but I got some bad news recently RE: other metastatic sisters. One of them may pass before Christmas / Hanukkah. The other 2 are barely hanging on. Prayers going out for them.
L
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Thanks DLB. Just the right words.
I hope I am not progressing. That was not the news. What threw me was a detail in one of my diagnostic tests that closes some doors but opens others. Complicated to explain. Truly just an adjustment to the sails.
But progression is another thing on my mind. I haven't been on treatment since October and I probably won't be until January at the rate things are going.
They botched the biopsy analysis in September. Once I decided I needed a new biopsy docs won't prescribe a new treatment until the labs on the new biopsy results come back. That's probably December 7th. Then oncs are all at SABCS until the following week. I might have a plan the following week but then there is organizing the treatment. My docs make Artists doc/team look like super-achievers.
Some good news too for me, but my heart is heavy reading the struggles we are all dealing with. I want this over for everyone and I want it over for me.
>Z<
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