Bone Mets Thread
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Do we have any long time bone-metsters on the board? I'm barely 6 months out and am looking for a little hope.
Rachel
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Rachel
I know 3 years probably isn't considered a long time bone-metster but in February 2016 I'll have survived 3 years. I know Caryn, exbrnxgrl is at least 4 years. I'm sure there are others with significantly more years. It seems like only yesterday I received my diagnosis, went through surgery and chemo. Now I'm in a holding pattern with anti-hormonal shots hopefully for many many more years. Good luck.
Amy
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Hi All!
Rachel, I know I'm not long time either, only 18 months, but my PCP has a family friend who is 20+ years MBC with bone mets only. I am still on first line treatment & stable.
Terre, good luck with your move, I hope it goes smoothly. Love the pic of Woody on the other thread, he's so adorable.
Patty, good to see you feeling so good.
Carol, hope your pain is being relieved with each passing day.
Marilyn, sorry about your reaction to rads, don't blame you for stopping, hope you can get it under control.
Auroraya, Are you on your way home now? I missed a couple of days here & hoping that infection is clearing up.
Linda, Annie, Chelle, Amy, Rachel, Wendy, Dune, Daughter, Lynn, Lindalou, Deanna, LovesMalltese, OMG!! I know I've forgotten someone, this should be a brain game!
We're heading out for a drive on the "big" island in the top down car with the heater blasting. The sun is shining but it's cold, only a high of 6c or 42F. Always feels like a stolen day, especially now. Take care everyone. Cheers, Dee
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Rachel - I'm 3 years NED, Caryn is 4 years NED, and there are many others here as well.
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I have big plans to be right there next to you and caryn. My hope is that we all share Ned at some point. Love to all! Chelle.
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I'm crazy enough to buy a house, that's how hopeful I am. It has a 15 year mortgage. And Chelle - here's hoping for you too!
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Hello ladies, I know I have been quiet lately. I have been processing what has been happening in my life. PET scan on Wednesday showed some progression, still remaining in my bones. Got 8 months out of Ibrance, which I believe is a decent run. On to Xeloda until I have a bone biopsy to test if I am eligible for a certain trial that my MO is very excited about. That will be on December 4th. Have been trying to process what is going on in my life. 16 yrs with original dx and now1 1/2 yrs dealing with mets. Almost 20 years of this garbage they call breast ca. How do I break this cycle? So much to ponder, not in fear, because fear is not to be feared, it is to be faced head onand conquered.
To all my BC sisters, let's face this fear together. Hold hands in unity. Kick this crap to the curb.
In love Myra.
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Hello everyone,
Terre, you're not crazy! May you outlive your mortgage.
Myra, sorry to hear about the progression, I was thinking about you and wondered how your scan went. There are many women who are never NED and still get alot of years out of other treatments. Hoping you're eligible for the clinical trial your MO is excited about. Holding your hand in unity and kicking this crap to the curb. Extra big hugs to you, Annie
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Myra, I am sorry about the progression. This disease sucks. You have been dealing with this for a long time. i feel that it is never safe to become complacent when things seem to be going well since we never know what will happen next. Hopefully you next tx will be successful for a long time.
Along with Annie, mY hand is also joining yours and all our bc sisters in unity to kick this crap to the curb.
Hugs to everyone,
Lynne
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Myra - I'm so sorry. This disease is unfair and cruel. I wish you a long run on Xeloda or the clinical trial. I'm facing this fear with you, holding your hand in spirit and unity. Sending you lots of love and hugs.
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Myra, Can you feel all of us hugging you and holding your hand? Together we will be strong for and with you. A new trial is promising. Remember to breathe........
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Myra, Sorry about the progression. It makes me crazy that after all these years we still have to fight like this. I am at your side all the time. You were the first person I PM before I had a diagnosis because of all those years ca free. So let's make history together. 20 years to come back and 20 more years kicking it to the curb. Love to you. Hugs Carol0
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Myra, very sorry to learn your progression. But hey, it is still in the bones. Pearladay has her mets confined in the bones for 13 or more years, not that she's been without progressions. She is also not NET. But she is kicking and kicking high! Progressions probably are inevitable for 98 percent of us. Just like some one recently posted on another thread, tumors grow, tumors shrink, just don't be too multiple, is the normality to most of us. It seems that your onc is both spirited and resourceful. Your new treatment will bring you the new stability at no time!
Terre, you are doing the right thing! Besides, you do not have to pay off the loan to make the move beneficial. As long as the home price and the loan interest are both low, you will build equity on the house quickly. In time the house will also worth more. So in case the house would be sold with a mortgage on it, the two factors will still make you better off.
Auroaya, very happy for your improvement and homecoming!
Warm regards to All!
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rachel1,
I am 4+ years out from dx. I still work full time and only have aches and pains from Femara. I know there are others with longer histories than mine. I think there is lots of hope 😀
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Aurora, I'm so happy to hear you're home! I hope you've had a nice home cooked meal, I wish I could send you something. Home sweet home! Rest up and get better, sorry about the VRE, it's so common these days. I think you'll feel much better very soon!
Hugs, Annie
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Hi ladies! Just saying hi! I'm having a hard time keeping up in here, with work and the kids. Continuing to have lots of pain. Officially it's been one full year of pain now. The pain started last November and I was diagnosed with mets April 2015 and now November again and still in pain. I honestly thought I would have resolved the issue by now. Not necessarily the cancer of course, but the pain. I'm learning now to be patient as I have no choice.
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Myra, as others have said, sorry to hear of your progression. One good thing is that it is still confined to the bones. My onc told me that there are many treatments she can use for bone mets, I'm sure yours will come up with one that will do its trick! Hang in there
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Myra, sorry to hear about your progression. I am holding your hand through this. Fingers crossed for the trial.
Cristina, I'm glad to see you here, I've been very worried. I sent you a PM.
Best thoughts to all here, Cheers, Dee
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Myra, Sorry to hear of your progression, but sounds like your doctor has a plan, so that's good news. The battle gets harder as time goes on, but you are a warrior, and I'm sure you can tackle the next treatment as well as you have all the others. I will be interested to hear about the new trial - will that mean you will stop the Xeloda completely? Good luck with the biopsy.
I also got news of progression from Wednesday's MRI, but it was no surprise given the sharp increase in pain, and I was glad they at least know now that the source of the pain was progression to the mid spine (will have radiation sometime in Dec to the mid-spine which will be tricky since my lower and upper spine have already been radiated). I think they will do a large but quick dose this time - might only be 1-5 treatments, so not too bad, and hopefully it will ease the pain.
CJanet, sorry to hear you are in pain, hope they can get it under control soon.
Patty, have fun with your boys and enjoy the ice cream, etc.. Simple pleasures are the best!
Aurora, welcome home, that is great news.
Hope everyone has a fun and pain-free weekend!
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myra and Holly. - sorry to hear of the progression. Holding your hand in spirit
Lindae. - thinking of you. Hope you are staying busy.
Auroaya - no place like home. So happy you are going
Dee - top down and heat on - sounds like fun. Gotta blast the radio and sing out loud, right ?
Well I had a great evening with my dss. Got everything on our list done and now everyone is fast asleep and I am still awake. Just feel to good to sleep. Woo hoo ! Oh yeah at baskin Robbins I had a waffle cone with a scoop of cherry blast and a scoop of reeces peanut butter cup. As usual my eyes were bigger thenmy tummy. 2 bites and I was stuffed. At least dss ate theirs and split mine. I will be happy when I get my hunger back. Really wanna put some weight on these bones. Under 100 lbs is uncomfortable for me. The cold doesn't help either. Need more layers of clothes to keep warm. Oh yeah I also got 4 books from the library. I love to read just don't get out to the library very often. So I am off here to get started on my books - its s series.
Hugs all around
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Myra and Holly - progression sucks! I am so sad to hear if this.
Patty!!! So glad to see you feeling better.
Cjanet - sorry you're still in pain.
Auroaya - welcome home! Very happy for you!
That's about as much phone typing as I can stand. Thanks for all the positive thoughts. Off to pack the kitchen.
Hugs to all
Terre
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Myra, you've got my hand! I have a pet in three weeks.
Terre- getting the kitchen done is always the best. Really feel moved in, with milk in the fridge and cutlery in the drawer. Coffee maker set up. I might be crazy, but I have always loved moving.
Auroaya- I'm so glad you're home!
Patty- happy that you are energized! This really is a roller coaster! Steel rose told me that when I was first diagnosed. From what I have observed, she is accurate in her description!
3holly- have you been at this for long?
Mom- How are you doing? Getting any rest?
Lindae- hanging in there?
Big hugs all around!!! Have a wonderful weekend! Love Chelle.
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Patty P. Send me some of that energy! My mind wants to do everything but my body won't move. So happy you're felling better!0
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CJan Where are you in pain? I hope you feel better soon.
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Good morning ladies!! Thank you so much for the wonderful hugs. I am much better today, it wasn't too much of a shock. Ibrance is quite the roller coaster. As far as I can tell, it works best as a first line tx for mets. Hey, 8 months ain't bad. At least my hair will get thicker again. I forgot the name of the trial, but it is the opposite of what is going on now. MO thinks they are totally going in the right direction. He has been doing this for years. He was my original doc 16 years ago, so I trust him completely.
Aurorya so glad you are home and Terre, so glad you have a new home! I agree with Chelle, there is nothing like being home when your kitchen is ready to go......
Patty, I had Baskin Robbins yesterday too. Winter White Chocolate...yum...yum, part of my "I don't give a damn" party.
Dee, let that wind in your hair, put a smile on your face and have a hot toddy...LOL
Linda, LindalooU, 50s girl, Annie, Holly, Lynnwood, Xavo, Lovesmaltese thanks again for the kind words. Myra
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Good morning all,
3Holly - sorry about progression. Good luck with the rads. The rads I had last week on my femur is doing its job and I wish you the same. Will you be moving on to another tx?
Aurora - Home sweet home and goodbye to institutional food!
Terre - Get that kitchen ready, we're all coming for tea!
Chelle - what kind of pet?
Myra - happy to hear you're doing better today. And yes to the "I don't give a damn party". Had chocolate in bed last night watching tv. YAM YAM My matronly girdle and hips don't need it but WTH.
Cristina - I was getting worried about you, glad you checked in. Sorry about that pain though. Are you still seeing the pain specialist?
Dee - WOW you rock girl!
Patti - Just so happy to hear you doing all those fun things. I can send you a few extra pounds.
Sorry for not addressing all of you, still on my first coffee.
I'm doing OK. No more anger. Still mulling over on how to reorganize my life. My week went well, kept busy and rearranged some furniture and paintings yesterday mostly in my bedroom. Went for a walk every day. Also had a flu shot this week. Second time in my whole life.
Good week-end to all.
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DaughterLove, you might want to check out this thread, too, if you haven't already:
"Life doesn't end with a stage IV diagnosis (really!)."
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daughterlove,
Here's the link to the thread bjsmiller is referring to:
https://community.breastcancer.org/forum/8/topics/...
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Good morning all!
I debated with myself about posting about our day with so many who are having a tough time of it right now, but I thought that we should all share in good times & bad. When I'm having a tough go of it, I love to hear & see what others are up to. Those that are having pain, I am truly sorry & hope you get some relief soon.
DH & I had a wonderful day yesterday. Felt like a stolen day, the sun was shining, the cold wind on your face, I felt more alive than I have for a long time.
We drove along the shore (no singing Patty!) & stopped in for a bite to eat at a place right across from the ocean. Lunch was great, but we were treated to a show of orcas who were feeding quite close to the shore. We sat there mesmerized for almost 2 hours! This is not my picture, but it is a picture of this particular pod which lives around that area.
Hoping for a pain free weekend for all. Cheers, Dee
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Wow! I would love to see orcas! There are sightings here, but I always hear about it after the fact. Thanks for sharing your lovely day, Dee!
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