Bone Mets Thread
Comments
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Welcome melp27.
Geez only 27 years old...that's distressing to hear that you are so young. Thank you for joining us. Yes mets to your spine means bony mets most likely and not in your spinal fluid or the nerve. You will find that there are many of us who live good long lives with mets to our bones. Please ask questions. That's just one small way we can help to educate and take away fear of the unknown.
Amy
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Melp: welcome! You are in the right place. Many of us have spinal mets. I have a whole collection.
I was diagnosed last year as well and am trying to figure this all out. You will find this group to be incredibly supportive and informative. The only thing that could make it better is if we were all together in person. But you can feel the warmth. I had a pen pal from Adelaide in high school. Looking forward to getting to know you better. I hope everyone celebrating Easter had a wonderful day. I spent the week in Massachusetts. Our visits are never long enough to see friends, so the kids and dog and I drove up early and my husband flew up a few days later. Of course, in mile 5 I got a flat tire. I wasn't even on the highway yet! But we made it eventually and it was wonderful to reconnect with childhood and college friends and have lots of downtime with family. And it was nice to have the opportunity to miss my husband. I always take him for granted and think he's not helpful, but I was so happy to pick him up at the airport!
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Kelp, Welcome to the bone mets thread. I am sorry for the reason you are joining. You will meet many wonderful, supportive people here. It sounds like you have been through some rough times already. How are you feeling? Have you started to feel better since you started treatment? Do you have an onc you are comfortable with and whom you trust? Does he or she take time to answer all your questions? I look forward to learning more about you as you join our discussions.
Lynn
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Welcome, melp, although I am so sorry you're joining us, and at such a young age. Looking at your tx hx, am I correct in understanding that you were 27 in 2011, when you were originally dx'd? And with a 6 cm. bc back then? Wow. That is just difficult to wrap my head around, as I'm sure it was for you!!! But so glad you've found us.
Love the photo, Rachel! Your kids are adorable, you and hubby look great, and I love how your dog looks like he's totally used to posing for family photos. Nice that you could get away and enjoy the week with your family and friends. And I got a chuckle out of your comment about having a whole collection of bone mets.
Babs, glad to hear that the rib isn't keeping you from enjoying your planned vacation. Charleston sounds lovely. I hope you'll share some photos with us! Have a wonderful time!
Hello and hugs to everyone else!
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Melp sorry you're here with us but welcome!! It really upsets me when someone so young joins us. But know that we're all here to help you through this maze. As I tell others MBC is my major blip in the road but one that I'm not allowing to take over my life ( at least for now!!). Rachel what a lovely picture!!!!
Just got back from the Charleston Market and a great brunch. Went to see a few sights and now need a rest. It's hard for me to realize my limitations sometimes. Thank god my DH is so protective of me. He takes better care of me than I do!!!!
Some Chsrleston sights we can enjoy together!!!
Babs
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Babs, Thank you for the pictures. I have never been to Charleston, but I have always wanted to visit. Judging from the way people are dressed, it must be marm there. We have a bit of a chill in wind up here today. Have a wonderful time.
Rachel, What a wonderful picture of your family. The dog certainly has become comfortable with all of you. I am glad you were able to spend time with your friends and family in Massachusetts. Your DH must have been happy when you picked him up at the airport. At least you weren't in the middle of nowhere on a dark road when you had the flat tire. Well, at least I hope you weren't.
Lynne
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Melp, welcome but so sorry you have reason to be here, 27 is far too young to be going through this. I'm glad you found us and you will find an abundance of knowledge and support here.
Rachel, that is the most beautiful picture of your family, thanks for sharing it with us.
Babs, glad your enjoying some nice vacation time and hope your rib is feeling better. Beautiful pictures!
Hello to everyone here and hugs to all, Annie
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Welcome melp! Great photo Rachel! And yours too Babs. Off to Auckland again. Sending huhs to all
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Hi all,
Babs, sorry on that broken rib. A vacation with wine and chocolate is a good way to start your healing process! Glad your DH takes good care of you. We all deserve the very best.
Melp, a warm welcome to you, but sorry you have to join us. We're a great bunch here. Jump in anytime, we look forward to knowing you better.
Rachel - love your pic. Doggy is part of the family now! Beautiful smiles all around.
Milaandra - how is your week alone going?
Patty - waving at you and sending hugs.
Bosco - you're on my mind and I hope you're doing well. Would love to hear from you.
Sending hugs all around.
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Well, Mike gets on his plane tonight and will arrive tomorrow morning. I can't wait!
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Woohoo, Milaandra. I am sure he will be as happy to be home as you will be to have him there.
Lynne
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Babs you are right this to shall pass are bodies are wonderful at healing and it will get less and less and you will be able to laugh and cough again at will. A vacation sounds like the perfect medicine lots of good food good drinks and good company. Enjoy yourself and no heavy lifting a wine glass sounds about right.
So looks like this time I made the trial specs. I will be taking the lovely advice of my MBC sister Deana ( thanks so much your advice is immeasurably important). The trial is only 1/3 placebo so the chances that I get both drugs is high. Chatted with my oncologist yesterday and she said so far the results have been very promising. So I will do it at long as the side effects aren't too bad. First meds are set for Friday I've been over a month on nothing so it will be good to shock my cancer with the next onslaught of drugs.
Wendy
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Wendy, Woohoo for making the trial. I hope the treatment knocks out those nasty cancer cells that have been lurking in there. I will be thinking about you on Friday when you start the meds.
Lynne
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Happy for you Wendy
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Hi Ladies,
Just got back from having my tooth pulled. My oral surgeo went to a class about a week ago to learn more about bisphosphonates and osteonecrosis of the jaw. He was very slow and methodical removing the tooth but it's out, so now I wait for it to heal. He's going to follow me weekly. I was surprised he didn't prescribe an antibiotic, but he said research has shown it to not make a difference.
The novicane injections were awful. They brought tears to my eyes it hurt so much. The rest of the removal was painless.
Anyway, thanks to all of you who have offered hope, help and suggestions.
Amy
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Wendy: happy for you and looking forward to hearing your updates throughout the process.
Amy: sending you virtual milkshakes. Thinking of you.
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Great news, Wendy! And you know there's a Faslodex thread here, don't you? There's also one for Ibrance (which isn't the exact drug you're getting) and also one for Faslodex+Ibrance -- any of which might reassure you if you do experience any SEs, although I'm sure you'll be given a list of possible ones, as well as closely monitored. And great news about promising results already coming from this trial!
Amy, I'm so relieved that your troublesome tooth is out! And I know what you mean about painful novocaine injections! That has got to be some of the worst pain ever! I am a bit surprised about not getting an antibiotic, especially since you've been on Ibrance and had low counts. I think I would probably ask for one anyway, just to err on the side of caution. JMO, although your whole situation may make that thinking not necessarily appropriate for you.
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Wendy-so happy you're in the trial! It must make you feel better to know you'll be in treatment again!!!!
Amy- I agree with Deanna about the antibiotic.
Babs
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Hi ladies. I'm new to this thread and I'm searching for better news about my new mets dx. I guess I caught everyone by surprise, including my MO and family. I'm 46, married and have a 9 y/o daughter. I called my MO in mid-Feb complaining about right rib pain. He ordered a bone scan, which lit up like a Christmas tree in my spine and left anterior femur, but nothing on the right. Subsequent CT and bone biopsy confirmed mets. He immediately changed my AI to Femara and I've already started Ibrance (4 days in with no SE). Got my first Xgeva injection last week and I meet with him tomorrow to discuss the pathology report and treatment plans. Any advice and long-term survivor notes would be greatly appreciated. TIA
Debie
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Debie, Welcome to the Bone Mets Thread. I am sorry for your reason for joining. You will meet many wonderful women here who are doing quite well living with bone mets. I was diagnosed with bone mets right out of the gate. I intend to live for a long time, and my onc agrees that it is a very real possibility. There are many people on these boards who have lived with bone mets for many years. There are others here who are on the same treatment plan that you have just begun. I have read positive results. My advice - listen to what your onc says and ask questions so you understand everything you can. Join in on the Ibrance thread , lots of good info there. Ask people here any questions you have. People are happy to help.
Lynn
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Debie, very sorry that you find yourself here but you will learn more here then any doctor will ever teach you. I also have extensive widespread bone Mets and am on the exact same treatment as you. I am on my 12th cycle of Ibrance and doing well, working full time as a nurse. My onc also believes that while I am not "curable", we can knock this cancer back for a long time. Hang in there, it does get better
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Debie. Welcome to a wonderful group of women who are so supportive and knowledgeable about this damned disease.
To all- some pictures from The Magnolia Plantation from today. This way you're all with me!
Bab
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Rachel and Babs- thank you for the photos! What a nice reminder to Cherish family times and trips to favorite places
Welcome Melp and Debie! We are all in this together. These boards are a wealth of information and you meet some of the nicest people!
Wendy- Hope the trial brings great results for you! I'm sure it will feel better to have a treatment protocol underway.
Amy- good riddance to the troubling tooth. Sounds like your dentist wants to do the right thing. That said, If our oncologists send us on trips with antibiotics just in case...it seems like they would want you to take precautions. What would your onc do? So sorry about the additional pain:-/.
Waving to Lynne, Terre, Milaandra Deana, Lynnand mom att.
Thinking of you Patty, Bosco, Myra Cristinaand all the rest of the gang!
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The issue of antibiotics after my tooth extraction has been a mystery. My oral surgeon said in his experience they don't make a difference. When I asked my onc about it she said she'd defer to the oral surgeon. I still think it's weird that they wouldn't write a preventative script. Well at the first sign of trouble you can bet I will demand one. I just hope it doesn't get that far. Thank you for the good wishes. I am so relieved to have this darn tooth gone. It was a constant annoyance not to mention the pain. Now I feel like I've got a huge crater in my mouth but that should heal up soon.
Sleep well ladies -
Amy
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Amy, I hope you heal very quickly, glad you've got that behind you. Remember not to use a straw, I'm sure the oral surgeon told you this but it can lead to dry socket which is extremely painful.
Babs, keep sharing the beautiful pictures, so happy to see you're having a lovely time.
I must get to bed, I have an early appt with my orthopedic surgeon. Leaving here at 6:30 am.
Good night to all, Annie
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I am shocked to the numbers of young women joining this thread. It literally makes me sick. And i can't help it but think what's with the commercials in health pamphlets or TV when they show women with Cancer it's always a picture of older women. I find from hearing my daughter say it, they younger ones feel so disenfrenchised.
Melp ad Debie wish you the best, so sorry you guys have come to be here, but it's a great source of warmth and knowledge.
Babs thx so much for sharing the lovely and relaxing pictures.
Amy it's a tough road right now, but you are finally where you wanted to be so you could move on with your tx. Hope you get better real soon.
Wendy, oh sooo happy for you. It's time! Very exciting. Take good care.
Lynne hope you managing at home.
Everyone take good care.... In 2 weeks we'll see what the markers will show for Dani.
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While I was getting chemo (yay that round 5 or 6 of TC is done!) today I cornered the NP who is the right hand to my oncologist and told her of my anxiety over not knowing the plan forward. She told me this plan and I wanted to run this by you all to poke holes, suggest questions I should ask, or to confirm that it sounds reasonable.
Last chemo is April 20
Bone scan (this will be my first and she said I can do it any time so that we have a baseline. Part of me wants to do it right away and the other says I should wait until chemo is done so that we see the treatment effect and have that as the baseline. Thoughts?)
Surgery likely 3 weeks after last chemo (so mid-may at the earliest). I'm interested in immediate reconstruction of I'm a candidate. The thought of multiple surgeries and a stage 4 dignisis doesn't appeal to me yet. Thoughts
Meet wth oncologist one week after surgery to confirm next steps with input from surgery path report
Do radiation. They originally said breast only but I'm going to push them on my bone mets too depending on result of bone scan.
Meet with oncologist and start tamoxafin.
See oncologist every 3 months to determine progression or stable status
She didn't mention any other targeted therapy. estrogen suppression therapies, or bone building therapies. I know I have to balance being patient that I'm at the beginning of this but it's hard when I see others getting good results with other therapies. Anyway, you can tell I'm over thinking this.... Thanks in advance for your wisdom and support
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Hi everyone.
I have been reading but not posting much. My mother has taken a turn for the worse and I am visiting with her in Montana.
Welcom to melp and debie.
Jennifer it looks like you have some awesome questions in asking about bone building meds, estrogen blocking and ovary supression, ? Removal? Just to let you know for the first year after dx I met with MO monthly. I also had pet scan for staging then every 3 to 4 months. My tumor markers are meaningless so scans are the only way to check for progression.
Good luck with your plan
Mary
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Jennifer. I see myMO monthly and have my TMs taken monthly. I go for scans every 3 months unless my TMs go up then it's sooner Are your TMs reliable for you?
I think having a bone scan now for a base line is a good idea. And then repeat it after chemo to see if chemo worked for you
Wishing you get NED
Babs
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I'm guessing my tumor markers are not reliable because they are very low (33) but I will have to ask because they may have tested them more than I am aware. I feel like they hold onto info and it drives me insane
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