Bone Mets Thread
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No words that haven't already been said to express my continued concern and love for you & Dani, MomATT. And you too, Kaption. These setbacks are devastating to all of us here who care about you. Continued prayers for strength for you both -- and for Dani -- and wisdom for your physicians.
And Lulubee, I am absolutely in awe of your turnaround and tenacity! You've pulled through a tough spot, and I hope your experience will give renewed hope to MomATT, Kaption, and anyone else dealing with not-so-good news this week.
Still waiting to start my new tx, Xeloda. Counts still too low today. The Triniti-1 trial (study) that was on my short list of options has way too many caveats that were stressful just thinking about trying to do because of distance. Besides, it's Phrase ll -- just starting up -- which means little to no proof of results.
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Greetings, I have recently discovered that I have two spots of cancer in my bones; one in my neck and one in my left hip socket. My treatment has changed to Xeloda and Zometa.I had Stage III breast cancer 9 years ago, and now have Stage IV, as of May 2015. My question to all of you is: how long can you expect to live with Stage IV and 2 bone mets?? Thank you so much for any information.
Diane, retired public school music teacher, currently teaching 20 piano students, playing the piano in church every Sunday, and directing the church choir. And praising God for 22 months of life since diagnosis!0 -
Diane - You will die of something else than cancer. Bone mets move very slowly. Treatment options are increasing. That is not to say this will be easy. Welcome.
>Z<
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Lulabe, I am so happy to read you are doing better!!! Kaption, I hate to read of yours and momatt. I can't imagine how devastating it is to deal with those issues.
Thanks Annie, it helped me a lot
Welcome Diane
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Lulu bee- happy to hear that you're doing better. I haven't lost all my hair on Taxol but most. I think I have 5-6 eyelashes on each of my eyes! But since ZI'm stable as of now I'll take it.
Aurar-Enjoy your time with your Mom-I know how you feel, overtime I say goodbye to my 95 yo dad in Florida I cry-could be the last!
Momall-there just are no words! I'm so sorry to hear of Dani's latest test results. I think her MO may be presenting the results to other MO's for some insight-that could be the reason for the wait for now. I think of you and Dani often and am praying for you both!
Babs
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All of you ladies give me so much strength, it really does help not to navigate this all lonesome. I know. Still waiting to see what Onco has decided. I guess it's not gonna be a discussion.
I do have quite a lot of questions for Onco, she said we shall communicate in the Morning. But she has no concrete plan yet. I shall make a list to sound smart when I speak with her.
Hope for everyone a restful night.
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Kaption - So much going on on this thread, I keep forgetting to tell you that I think of you. Good luck with your treatment. It sounds hard, but it also sounds like a plan that will work.
>Z<
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Kaption, hang in there. I'm living proof that things can look pretty hopeless and then turn around... over and over again. I'm sending some of those vibes your way, babe. Stupid mets picked the wrong brain this time, amirite?? You're gonna be just fine.
Babs, no such luck here. I went T-totally bald by the third infusion. As in, plucked chicken bald. It's the pits. I've always had a thick head of wavy golden hair (to which I was rather hopelessly devoted), so I feel rather unrecognizable now. I figure if I ever plan to rob a bank, right now is my best shot.
Anyway.
I think we all need a treat, so virtual homemade fudge for everyone. I made this batch just for y'all with Ghirardelli chocolate and grassfed organic butter, and I cut the squares super biggie size. It's silky smooth and speckled with very finely chopped Texas pecans, lightly toasted. Just try not to moan too loudly, or the moderators may come around and tell us to pipe down.
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popping into say hello and check on everyone
Kaption, momATT , Dani. Sorry for the progression
Can't address each of you but know I am praying g for all. Def quite a few new faces. Hello
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Thank you to all.
Welcome back, Patty. More hugs and prayers.
Lulubee- perfect! Best fudge ever!
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Patty so glad to see you!!!! Was thinking about you!
Bab
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Patty, I swear I was thinking about you a lot yesterday and here you are! Sending you tons of strength as your plate is very full right now. It's good to hear from you.
Lulubee, I'll take that chocolate and go on a walk with you.
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Patty Patty THIS IS A CELEBRATION!!! So touched. AND SOOOOO Happy to see ya girl. 'Bt time sweetie. Keep up the good work.
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PATTY!!!!! YAY!
We've missed you, obviously. Hugs, friend
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Kaption certainly that is not the news we like to hear, I hope Xeloda will kick that monster in your brain to the curb
Ziz
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Good to "See" you Patty...
Looked closer at my bone scan yesterday with Oncologist, there is more there then I thought, Hopefully Xeloda knocks it out...and I guess I see now why I need some pain meds, as much as I hate to admit it, all I keep hearing is how awful opioids are, but Tylenol alone just doesn't cut it.0 -
I have mets to spine and skull and when I mentioned I have occasionally pain on the side of my skull to MO she said nothing. I am currently doing lose dose A/C and monthly XGEVA shots. Is this something to worry about or is my treatment right now all I should be doing. Bone mets are new to me so any input will be helpful
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Dianarose I'd just add, MRI of the brain encompasses the the skull etc.. then they could know details of what's going on. If you haven't done that yet, a base MRI in your situation is a good idea. How were the mets of the skull diagnosed? And for the spine, basically if you don't have a particular pain, and you function pretty well they tend to leave those alone. That's what I know from DD experience. Good luck.
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Dianarose I'd just add, MRI of the brain encompasses the the skull etc.. then they could know details of what's going on. If you haven't done that yet, a base MRI in your situation is a good idea. How were the mets of the skull diagnosed? And for the spine, basically if you don't have a particular pain, and you function pretty well they tend to leave those alone. That's what I know from DD experience. Good luck.
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Dianarose,
Given my recent experience, I would suggest at least asking about a baseline MRI. The pain could be just a skull met, but I think having that baseline is worthwhile.
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Patty - So good to hear from you!
Keetmom - I take opiods on a regular basis. It took me a day or two to adjust after starting them or increasing/decreasing as pain behaves. I function very well with them, I say give it a shot. Living with pain is no fun. If a particular one is not good for you, try another. If you choose to try them, don't stop the Tylenol. It boosts the effect of opiods and makes quite a difference.
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I has a ct scan and bone scan last month. I am assuming they were found on the bone scan. The only mets mentioned on the ct scan was all my belly mets and I do have vulvar mets too, lucky me
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Hi Patty
So nice to see your beautiful face😊 .
Lulubee the fudge was delish love pecans lol. Hey I can still imagine😏 After all my apricot pits and turmeric milk it was a well appreciate imaginary adventure. Sometimes I stand outside of fancy pastry stores and stare in the windows like some five year old.
Momallthetime no worries you know so much now about this disease you will sound like a rocket scientist to the MO I'm sure. I'm so sorry Dani is going through this ,she needs to catch a break for ten years or so. Finding the right treatment is exhausting and I'm only at the beginning of the sucky bit. Both of your strength is a beacon for me to emulate.
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I had to give up the hydrocodone and Tylenol. It jacked my liver numbers thru the roof. So now for pain I take a plain oxycodone with advil on the side. Advil is ibuprofen and it is an NSAID. Tylenol does nothing for inflammation because it's not an NSAID.
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Lita, You have been through the ringer - when are you going to catch a break? I am sorry my friend. But I do admire your spirit and your upbeat humor and just your overall attitude. Wish I could be more like you!
Amy
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Lita- are you going to try Ibrance
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PAAATTTYYY! .... Hello. Good to see you here.
Lulubee - I am loving the fudge. Glad you and your wild imagination are back in force.
>Z<
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I haven't been here for a few years. BC 2011, whole nine yards of treatment. Just found out bone mets scattered around. Hip was hurting and weird little pain under where left breast used to be so I went in for a checkup. Yup. Pet CT and there they were partying around on my bones. On Femara. Tried Arimidex the first time and had to quit after a year and a half because it was so awful for me.
It gives me great hope to see so many who are doing well with bone and liver mets. A few forum acquaintances from 2011 - 2013 still post and glad to see they are doing well. A nod to NatsFan and Alaska Angel to name two.
I learned a lot from all the great women here in 2011 and followed good advice regarding going through chemo and radiation. I have been checking in now regarding side effects from Femara and how much red wine I can drink. LOL Read some very funny posts about imbibing. So I sit here with a glass of red mixed with sparkling water and toast to all that we live long and prosper.
Kathy aka Chatsworthgirl
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Chats, I'm sorry you had to come back. It makes me angry that so many women who went thru the whole ordeal at stage 1 or 2 end up with Stage 4. Just when you think you're home free after 5 years, it pops up again.
Based on the amount of recurrence, looks like BC gals can never say they're "cancer free." Some women's cancer comes back even after 10 years. Really upsetting. It just lays dormant and pops up again.
Lots of new people here. We welcome you back with open arms.
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Sorry you have to join us again, Chatsworthgirl, but I'm glad you've found some familiar friends to connect with again. You will connect with more new friends here very quickly, I'm sure. Same thing happened to me-- I was mostly off the boards for a couple of years after round one, and then the bones lit up and now I'm back here for good. You will find the company and support here on the Stage IV board to be very, very comforting and so informative.
All the best to you with Femara. I got a good long stretch out of that one and I bet you will, too.
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