Bone Mets Thread
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xavo. - glad to see you jumping in and posting. Missing 1 treatment of zometa is not going to hurt anything. Did i read earlier you biopsy showed change from tn to erpr+ ? Can't remember who that was. It is very good news for sure !! Tell us something about yourself : kids, hubby, pets. Anything you want to share.
Cling. Hoping your results are good news tomorrow.
It's 11 pm here. Not even sleepy. Got my nights and days mixed up a few days ago. Hard to get it straightened out. Oh well I csn always take a nap since I am not working. I don't know how so many of you ladies work and even many full time. Wow.
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Cling-good luck tomorrow!
Xavo - there are women around (I've met a couple) who are 8 and 10+ years and stable. So, my advice is - don't shoot for 3 years, shoot for 15.
Cathy - I'm quite lucky, just take Celebrex for the arthritis symptoms which are made worse by the Letrazole. I have other stuff, but it mostly makes me feel so sick I don't take it. For breakthrough pain, I did great with Vicoden in the US, but you can't get it here in NZ. At any rate, the others have much better advice for you than I, so I'll just say that I hope you find the right combo soon! Chronic pain colours your whole life and not in a good way.
Patty - jealous that you can take a nap. I really wanted one this afternoon, but had meetings. Oh well. At least they were interesting enough to keep me awake. So glad you seem to be feeling better!
Nice to see your smiling face, Deanna!
Sadly, my afternoon meeting resulted in work I need to do tonight to prep for another meeting at 8:15 tomorrow. Ugh.
Hugs to all,
Terre
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anyone else still up ? I am just alternating between cheers on tv and being on here
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I'm still up, but not for long. It's 9:21 on Thursday night here. Have to catch the 6:30 am train tomorrow and need to go spend time with the kittens before I go to bed. Sorry your sleep patterns are out of whack, Patty. I hate when that happens! Hope you get to sleep soon!
Hugs,
Terre
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I just got my results NED. Thank you Jesus. Welcome new ladies. I am pretty new myself. Prayers for everyone. So my doctor said I still have to come every month. I do still need several more months of Xgeva. He said XGEVA is 24 months and then done. I was hoping someone would say we may not need to go every month. Is there anyone not needing monthly visits?
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Congrats, dixiebell!
I did Aredia, similar to Xgeva, as 16 treatments over 24 months. After that I was done because my mo was concerned about bisphosphonate use. I have remained NED for 4 years and only see my mo every six months. Others differ, but this is the plan my mo and I are comfortable with.
Caryn0 -
good morning ladies. Hope all are well. I am having another good day. Got out if the house today for haircuts and summer clothes shopping for ds's and me. Now I just got to get dh to color my hair tonight.
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Dixiebell - That's wonderful. Congrats. I'm still monthly since Dec. 2013.Patty - enjoy your day!
Linda
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Dixiebell, congrats on your great news! My onc has moved my infusions to every second month, I receive pamidronate and she's concerned about the side effects.
Patty, yay to another day of feeling good. Enjoy your summer clothes shopping, I love doing that.
Hugs to all, Annie
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a great day for ds's swimming 0 -
Welcome to the new ladies! The women here are very supportive and good calming fears and cheering everyone on.
Patty- I am so jealous of the pool. Glad you are having good days lately.
I am still working full time, pain management still an issue but it's getting better now that I am learning to take more meds!
I am feeling a little sad today. My cousin has ovarian cancer which has never really gone away with treatment, she's only a few years younger than me. She told me all last night she was in pain in her abdomen and today is getting morphine. She has failed one clinical trial at Sloan and is getting ready to start another one. I hope something helps slow her cancer down.
I met with my onc yesterday. Next month we will do tumor markers and maybe a scan in a month or two to see if the Xgeva and Arimidex are even doing anything.
Hi to all the ladies. Time to get my kids out of the neighbor's house and ready for bed.
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Every six months sounds like a dream come true. Funny at how just the little things mean so much.0 -
cjanet: The Xgeva studies are amazing. Prayers your way.0 -
All MD Anderson tests show stable, despite the tumor markers continue to rise, both MD Anderson and local Oncs agree to continue Faslodex and Xegeva treatment. When I asked how long the Xegeva will continue? MD Anderson Onc said indefinitely because I have bone mets. I thought the Xegeva will be tapered off after some time.
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The MRI I had Tuesday showed no mets to my brain. It doesn't answer the question of why did I keep falling asleep on vacation, but ... yay!
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Cling and Dune - Excellent news!Nice Pic Patty. How was the lasagna?
Cristina - Sorry about your cousin. Glad your pain better.
Good night to all - Linda
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Dixie, I am new here. Your NED news is great, very encouraging to me. I wish one day I also could achieve that!
Patty, yes, the subtype of my cancer changed from TN to ER/PR+ in the second diagnose. It might be a rare case. It is said that about 30% would
change subtype in relapse. Among them, about 3% to 15% would change to ER/PR+, more tend to change otherwise, loosing ER/PR receptors. It is also said, it tends to take 10 years to show the changes. Although it happens, mine is still quite puzzling. It might well be either the case: the original pathology lab work made mistake with improper staining which showed negative ER/PR receptors (never otherwise though); I had more than one tumor but unexamined due to whatever reason; or, my primary tumor was multi-genomic like forest, the majority trees are TN, and it is the cells that have positive ER/PR metastasized. These questions will never have the answers. I am not sure if the tissue from my primary cancer still exists. I moved from the area where I was initially treated more than 10 years ago.Patty I do not have any children, but do have husband. I was a teacher, my husband still is one. I quit teaching a year after my initial treatments finished. By then I finally figured it out that since the TN cancer diagnose the priorities of my life had to change. I should live an uncompromising life if I could. My teaching job then was located 300 miles away from our home in Massachusetts where my husband is teaching. I had to keep a condo apartment in where I was teaching and long distance commute home biweekly. If I most likely would not have my old age, there is no point to live this way just in order to produce income to save for the none-existing old age. I enjoyed teaching, but it was never the thing I really love to do, let alone it became a difficulty. So I sold the condo, quit my job, coming home to live every minute of my life with my husband, doing the thing I really love to do, which is writing.
Terre, you are right! Why not shoot 15 years?!
Good night everyone!
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Cling and Dune, being stable and clear brain scan are both just great! Dune, do you know your thyroid is all right?
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Congrats Dixelbell! And Patty on having such a great day!
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Xavo, I am hypothroid, for which I take levothyroxine -- which I need to pick up from the pharmacy.
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Cjanet, Sending best wishes that the Xgeva and Arimidex are doing a great job for you. I am sorry to hear of your cousin's battle with cancer. I hope that she will tuck in and another trial works out for her. Damn cancer. Sending love. Peggy
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Good morning ladies
Linda - h yeah the lasagna was awesome. Thinking about having it for leftovers tonight.
Dune - brain MRI clear - hallelujah !!! So very happy to hear that.
Cling - I too was told xgeva would be Indefinatly.
Dixie - welcome. Is that your son in the pic with you ? He is adorable
Xavo - cheers for you making the decisions on how you live life not just letting them happen. So what are you writing ?
We are busy packing for my ds's to go to TX ( dhs mom house ) for 2 weekscant remember if I already mentioned this. I am just so excited. 2 whole weeks just dh and I. Yea. I can run around the house naked for 2 weeks if I want. Def cant do that with 2 boys in the house. We've never been apart that long. The longest was last year when they went there for 1 week. Hopefully I will let them stay and not go pick them up early. LOL I know they will have a great time. Meme and papa will spoil them like crazy. I know meme has a ton of activities planned for them as well.
Deanna - hi
Huge all around. Hope all are having an awesome day.
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Dune I am too hypothyroid, but more often have trouble to sleep well.
Patty I write essays and novels.
I have been paying great attention to how people describe their bone pains caused by MBC. But I still have difficulty to identify mine. I never injured my bones before, so I do not know how bone pain feels. If I am in resting position, I do not feel any pain anywhere. But if I walk a little longer, my lower rib cage would feel pressured, as if my diaphragm is pushing out, my upper stomach is also a little bloating, and I would feel a little difficult with breath. Is that my plagued ribs cause the problems? I do have pains on my both sides andon the lower rib cage when I try to turn when I am in bed. But I am not sure what is hurting. There is no pain when I press the side ribs and the lower ribs. Very puzzling. Does anyone also feel this way?
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A bit off topic here, but I'd ask that you watch this video and share it around. It needs to go viral. It so captures my reality and I think you'll see yourself a bit too. Let's get education going!
https://www.facebook.com/holley.kitchen/videos/10153490757561869/
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That is a powerful video. Here's a thread with a discussion of it.
https://community.breastcancer.org/forum/8/topic/832375?page=1#idx_100 -
Thanks, Caryn!
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I shared that video on Facebook yesterday as I definitely can related to it, being younger when diagnosed and having the 2 kids I need to live for.
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Thanks Cristina! The younger women are really who i fight for. I will want to live a lot longer, but I don't have young children and I've done a lot of living already. We need a cure!
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Terre,
Two thumbs up from another older woman (and darn happy about it)!0 -
Thanks Caryn. Don't take me wrong, I'm definitely self-centered enough to want a cure for me too! I have kittens left to raise!
Due to my husband, we have a foster fail who is only 8 weeks old. He's blind in one eye and will likely have it removed in a couple of weeks. My husband named him (Do NOT name the foster kittens he told me) and then said that after Cyclops (that will not be his forever name) sat on his shoe and begged for cuddles, DH had to snuggle with Cy for over two hours as Cy wouldn't move. DH then said that as Cy will need special care according to the vet, that he (DH) figured Cy couldn't get a more special place than with us. I said, "so you want to keep him" and DH said, "well, he will need special care. So are we done with this discussion?" Everyone thinks I'm the nutty cat lady - I am, but I'm married to an even nuttier cat guy.
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