Bone Mets Thread
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Love the photos, Annie! Thanks so much for sharing them! Your daughters are stunning... you look wonderful... and I love the cute pix of the bride & groom! Sitting here with a big grin just looking at so much love and beauty!
Happy August birthdays, Aurora and Rachel! Interesting that so many of us are in August!
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Happy Birthday to all the August gals!! I am a Leo too, ( Eye of Tiger, you're gonna hear me R-O-A-R-) Mine was in July though, but I am a Leo!
Annie, love the pic of you and your beautiful daughter's!! Looks like a beautiful wedding!
Lynne, Great idea on taking that trip!! Can I come?
Hugs,
Carol
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Lots of August B-days! We all know and understand the importance of a birthday so all you gals celebrate!!
Annie, The photos are great and you all look fabulous. I'm so happy you were able to attend and now have some precious memories with your daughters.
Amy, since we have all invited ourselves to your new pool...what can we bring? ( wouldn't we all have a blast?)
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AnnieO- Nice pictures and beautiful daughters.
Auroaya and Babs thanks for your stories they have lifted my spirits and give me more hope that my scans next week will be positive.(I started getting negative thoughts.
Deanna we should come up with our own screw cancer drink for the pool party at Amy's, what color do we want it to be? (now where does she live?)
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Peanut, I vote for any color except pink for that screw cancerdrink.
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There's pink and then there's cancer pink - I'll take the first as it's a color I like and I think looks good on me.
Linda, Carol, Deanna OMG how much fun we would have if we really and truly had a pool party! The ladies here have such energy and a good sense of humor, I can just imagine wrapping my arms around each of you saying hello for the first time. What a blast! I wish I had the funds to fund flights and hotels for you all. I did buy a Powerball tonight so if I win, pack your bags -
Andi good luck with your move. Annie I love the wedding pictures - thanks for sharing.
XO to you all -
Amy
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Sorry I've not been on much, I've been watching the olympics...it's a form of avoidance I think!
Kaption, I'm hoping your scans turn out great on the 30th. Will be thinking of you.
Amy I"m so sorry for your daughter's loss. That's very hard to go through!
Lynne, I hope the Ibrance and Faslodex (sp?) are as easy for you as the Arimidex was. I took Arimidex for five years and hardly had any SE's at all. And wow on the trip to Hawaii. I hope you have a wonderful time. It's someplace my husband and I were going to go, but never managed to do so.
Babs, Happy Birthday to you, and many, many more
In fact, Happy Birthday to all of the Leo's!
Dee, I hope those counts are coming back up for you
Linda, wow that's great news on the healing of some bone mets! I hope someday I get that news too!
Annie, you and both of your daughters are just beautiful!
I'm wondering if my cancer hasn't changed and is still ER/PR+, what my onc will put me on. He talked about hormonals, but I took Arimidex for five years, and finished up in 2012. I wonder if he'll put me back on that, or something else. If it's not positive, I wonder what he will do then? Any ideas?
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Andrea, thank you for replying about the hip bones. Breaking your hip must have been awful, but I assume, perhaps incorrectly, that you were giving it a real workout. And on that note, have a great time hiking with your friends in the coming days. It is beginning to feel like autumn now, so your timing is excellent, not too hot.
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Hello ladies. I've got a Bone Mets question (or questions) on behalf of my wife, KD.
She was diagnosed De Novo in February with extensive mets to her liver and spine, along with other mets on her ribs, pelvis, rt. femur and a spot or two on her lungs.
For the first few months, we were focusing primarily on her breast tumor and the liver mets with good results. But, about 6 weeks ago she complained of a "new" pain in her upper back.
A CT scan revealed a compression fracture in her T2 vertebrae along with the news that the mets were up and down her entire spine (We mistakenly thought she only had about 4 mets on her spine). Unfortunately, they could not do the Kyphoplasty procedure because of the location of that particular vertebrae.
This issue jumped to the top of the priority list when they mentioned the possibility of "paralysis" if the vertebrae shifts suddenly.
She is wearing a C-collar/Back Brace at all times that she is not in her Recliner. She has just finished 10 radiation treatments on her C7 - T4 vertebrae. I guess that our hope is that the radiation knocks back enough of the cancer that they can fuse her T2 to the vertebrae above and below.
So, the first question is whether any of you have any experience with a compression fracture involving the T1 or T2 vertebrae? Also, has anyone had a "fusion" surgery involving 3-5 vertebrae?
We are not sure what to expect from here. KD has been "off" her weekly Taxol now for 3 weeks while we address this. I'm beginning to get concerned about that. Her cancer is very aggressive. I'm getting worried that it might want to move to other places. We do meet with her MO on Monday, but once again the waiting for information drives me insane. :-(
Thanks for listening (reading).
KDs Husband
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KDs-husband, PM me as I have had spinal fusion from T-8 to T-12 and can share some information about that and RFA which I have also had. I was in a back brace and collar brace prior to surgery but now I'm able to wear it on an off.
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Hello to all,
Thank you Deanna, Carol, Lindalou, Peanut, Amy and Gracie for the nice comments on the wedding pictures. It was a very emotional day for me, looking at my daughters up there and wondering if I'll be here to see them get married. I quickly snapped myself out of that negative thinking and said yes, I WILL BE!!!
Deanna, I'd like to be part of the Happy Birthday screw cancer party! I plan to have a big celebration on Sunday, I wish I could have each and every one of you here!
Aurora, I hope stable boy is your boyfriend for many many years to come! Maybe you'll even get a chance to date NED.
Hugs to all, Annie
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Wow ladies talk about some up beat posts all the birthdays and party talk and pools and the like and hiking I am so proud of us I'm going to cry. Count me in tomorrow I'm off to another regatta for two days in Victoria BC I am so stoked will be a ball buster paddling between cruise ships and float planes. This thread is such an inspiration love all you guys BIG HUG to each and everyone of you🤗
Wendy
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hi all!
Just getting to some reading on this thread, it is truly inspiring!! Annie, I love the wedding pics of your niece & especially the one of you with your 2 lovely daughters. So lovely.
Wendy, good luck this weekend. It would have been great to go down & see you on my side of the pond, but heading back to your side on Monday, just too much travel, I feel the need to stay home for a couple of days.
Happy Birthday to all the August ladies here!! I didn't used to celebrate birthdays but being stage IV, every one is a good one!
take care all, cheers, dee
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hWendy- Wow you are a great big inspiration doing all of this! Have fun!! Watching the olympics and watching the swimming--I hurt just watching them paddle that water with their arms. My ribs and thoracic spine can feel it right through the tv. Bless your heart
Hugs Carol
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Wendy, You put me to shame. I walk every day and thought that was good. I obviously have to up my game. Good luck in the regatta. Like Carol and Gracie, I have been watching the Olympics, too. Well, truth be told I have been known to doze off during the commercials, but I envy those taut abdominal muscles on the rowers and swimmers. Rowing is hard work. You must be in great shape.
Gracie, I have given up on guessing what an MO will do next. Things are so dependent on the person being treated. I went to my appointment on Tuesday prepared for several options since I wasn't sure which direction my MO would take. I had researched faslodex/Ibrance, A/A, and Xeloda so I would have knowledge of the pros and cons and possible side effects. Of course, that is just because I am a crazy person who needs as much information as possible about everything I do. I am aware of my habit of over-doing it. At the end of my appointment on Tuesday, my MO looked at me with a big smile and said, "Did I get all that right Lynne?" My DH burst into laughter. If you are still ER/PR+, hormonals are a good possibility. Your MO might choose to prescribe a hormonals alone or along with Ibrance. Several people here are taking letrazole with Ibrance. Of course, only your MO knows what is best for you. If you have any doubts, you can certainly get a second opinion.
Dee, How are you feeling? Any stronger?
Annie, The wedding photos are beautiful. You and your daughters look so pretty and so happy. I have no doubt that you will be around to see your daughters' weddings. Enjoy your celebration on Sunday. I hope we see pictures from that, too.
Happy birthday to all others celebrating birthdays this month. Has anyone else had or planning to have a big celebration? Any pictures?
Lynne
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Hi everyone!
I love all the positive posts!! They make me happy!!!
I'm scheduled to have my surgery on Monday - OOPH. Outpatient. My MO said I will keep taking Tamoxifen for a little bit after my surgery (at least until my next appointment). Kinda nervous for the surgery. Well, not the actual surgery - but everything that comes after. Menopause & etc!!! My mom's menopause wasn't so bad - so maybe I can take after her??
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Silviah, You will be on my mind on Monday. I hope your surgery and recovery go smoothly and that you are back to normal quickly. Menopause can certainly bring on some annoying symptoms, most notably lots of hot flashes, but I know you are strong and will be okay. We will all be here for you if you feel like venting or complaining.
Hugs from
Lynne
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Sil- I had a complete hysterectomy 2 years after my original diagnosis. I remember back then that b-6 and Vit E helped me with the hot flashes. That was 19 years ago already so I don't have hot flashes anymore.. Good luck with your surgery, you will be in my thoughts.
Hugs Carol
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Yep I now have the osteonecrotic bone necrosis after 2.5 years on xgeva/ I have to use rinses and frequent dental visits and hope to avoid jaw resection surgery...Just pay a lot of attention to what they say about the calcium rebuilders.
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Carolyn,
How often were you getting xgeva?
Thanks.
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This thread is the hardest to just jump in and say something-it moves so quickly. I actually wrote a quick note this AM as I was in the car going to work and pouf it disappeared as I got into my office.
Thank you all for the happy birthday wishes. It was a great day! My celebration started the day before- with a surprise mini party. My actual bday started with a happy bday video from my 2 granddaughters (3 1/2 and 5 1/2). So adorable. Then I was at MSKCC for 4 hours. I just finished being part of an exercise study and this was a series of physical tests to measure the effect of the program. (Of course, in monitoring me they noticed an erythmia of my heart so now I have further tests the end of the month. I am so not worried about this-I think it's a small anomaly). Then met with Hummingbird 4 and her hubby. We bonded after writing on this site and like all of my friendships here, I cherish this newfound friend of mine! Next I met my DH for jewelry shopping therapy and lunch. At night my DD joined us for dinner and after dinner I heard from my son. I also heard from so many friends and all of my family-I am so lucky to have their love and support throughout this journey.
I wish my fellow Leos-Carol, Annie, Deanna and her DS, Aurora, Rachel- all a wonderful birthday. Enjoy the day! I also wish everyone here a long date with NED!!!
Linda I'm so glad you can't join the trial because you're STABLE and HEALING!!!!!Great reasons not to be able to join!!!!
Annie- the pictures of your DD and the bride and groom were beautiful! I know how you feel. I hope that I'm here to see my DD marry and have children. She has a serious boyfriend and I'm hoping they don't drag their feet -they need to make this Momma happy (She's almost 39 years old.) Be happy you were there for your niece- we need to take each joyful moment one step at a time!
And, when is the screw cancer party? I'm so there!!!!!
Going away this weekend so signing off by wishing everyone a great weekend,
Babs
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Annie. Beautiful pic. I see where your girls get their beauty. Nice attitude. / you WILL be there
Count me in for the pool party. Actually ill provide the pool. Just come on over.
I posted a long update on patty thread but can't figure out how to copy from my cell phone ( I can't highlight entire area and so it only copies one word.). Anyway didn't want to bore all of you who don't know me. For those who want to read it I must say it is very exciting ( well at least to me lol ). I am so excited I can't sleep.
Hugs
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Silviah, I had an outpatient oopherectomy done in June of 2013. Came home to a kitchen reno we had going on and I was able to do everything I would normally do. I just had some minor cramping or like a pulling sensation where my ovaries used to be. Wishing you all the best and sending positive thoughts on Monday for a speedy recovery!
Lynne, thank you for your kind words, you always speak so eloquently and from the heart. I just love reading your posts.
Carolyn, so sorry to hear about the jaw necrosis, that is something I fear as well after being on pamidronate for almost 2 years now. Can you explain what you mean about the calcium rebuilders?
Babs, thankyou for the birthday wishes. I am very happy I was able to be there for my niece's wedding although I found myself daydreaming about seeing my girls get married. Hoping your daughter doesn't drag her feet and you will witness her marriage and be here for grandchildren. I for one know you will be!
Patty, thank you, so nice of you to say that. I went to the Patty thread and read through all of your posts. I didn't know you were in the hospital again but glad you're home and feeling so much better. That's one kick ass supper you made, I got hungry reading about it! Praying for more pain free days ahead Patty and sending healing thoughts for your lower back to get on board and stop giving you trouble!
Hugs to all, Annie
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Patty, I didn't realize either that you were hospitalized again. So sorry, but thrilled to read you are so much improved after the forced R&R. What's made the difference? Did they switch some of your meds or ?????
Carolyn, so sorry to hear about the ONJ. My UCLA onc wants me to cut back now (after just 6 mos. on Xgeva) to every 3 mos. due to a concern about increased risk of ONJ with Ibrance, but I am reluctant to do so just yet b'cuz I think Xgeva is helping me so much. I'm so sorry you're dealing with this, and I hope and pray the things you're doing now will calm things down. Thank you for the heads up.
Babs, sounds like a wonderful birthday! How wonderful that you got to meet Hummingbird4! Did you take a photo to share w/us?
Silvia, good luck with Monday's surgery! I'll be sending you calming vibes and prayers for a smooth procedure and quick recovery.
Have a good weekend, everyone!
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Deanna. No photo. I was a sweaty mess!!!! Next time. We try to meet up when we can. Next time I promise!
Silvia sending you healing vibes and wishes for an easy recovery!!!
Off to the Jersey shore now
Babs
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good afternoon ladies
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Hi Patty. I just finished reading the Patty thread. It sounds like you had another good day. It warms my heart and makes me smile from ear to ear to hear that. I hope the good days just keep coming and coming and coming for you.
Gracie, Did you ask Bestbird to send you a copy of her guide? You will find it very helpful. She has done an enormous amount of research, and her guide includes a wealth of information about metastatic breast cancer and treatments. I have read it cover to cover and still use it as a reference guide from time to time. You can request it by following the instructions in Bestbird's thread. It is called Just Sent my 1,000 Copy of my MBC Guide! I am sure someone else will be able to give you the actual link.
Time to watch the Olympics. Between staying up late for both conventions then staying up late for the Olympics, I am exhausted. I think I have to start planning an afternoon nap each day until this is over.
Lynne
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Hi Patty! I was so pleased to see you are home and feeling less pain!!! Hooray. I hope that continues for you.
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Patty, waving at you and let me know if you can feel this cyber hug as well! Have a great weekend!! Don't over do it!
Hugs, Carol
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Waving at you Patty! I read your post on the Patty thread. It brought a BIG smile on my face.
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