Bone Mets Thread
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I got off my diet last night a bit. Logical thinking, truthfulness, kindness and respect are revolutionary acts from here on out. But hey I've already got cancer. Bring it on.
Hugs everyone. We can do this.
>Z<
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Great picture Z...I'm not a Rum drinker, but I'm always game or a well-balanced, buttery Chardonnay with not too much oak on the palette. Can't drink while I'm on chemo, but I AM going to have a glass or two on my b'day next month ;o).
L
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good !morning ladies.
I've been couch bound for a couple days. Ugh. Tummy stuff : feeling a lil better this am.
Hugs
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So sorry Patty! Take care!
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Oh, Patty, not you too? I've been having awful abdominal issues because of Xeloda and Zometa (had an infusion during week 2 of cycle 8), and it's ripping me to shreds. Stabbing pains in my upper abdomen day and night, and then it feels like someone's taking my descending colon and wringing it out like a dish rag. And of course, my adoring companion, Mr. Diarrhea, has overstayed his welcome (he's been here for over a week). I am SO SICK of eating bland food!!! DH went out and got Chinese food cuz he doesn't want to eat chicken noodle, chicken & rice, or chicken O's soup every damn night. It's driving me crazy, but I have to suck it up and deal with it. I made the mistake of eating some of DD's tempura last Saturday, and I sure won't do that again. I was camped out in the bathroom the next day and couldn't leave the house and that was AFTER taking Imodium. I know it's the toxicity of both the chemos. MO told me that the abdominal issues would probably get worse w/each successive cycle. Gonna talk to her about decreasing the dosage/frequency again tomorrow.
Hope you feel better
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Patty, chamomile tea? warm water with some honey...take good care.
Kaption wow, that's nice. Have a great time.
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On my way to Florida for my dads 95 th bday party. On Tuesday he was hospitalized for tachycardia. While in the hospital he became disoriented and combative. My ds was already there so she and my mom have been dealing with everything. Wednesay my brother who is a dr came down. Yesterday the hospital advised that my dad is having trouble swallowing food and advised a feedin g tube was needed. We all nixed that and demanded he be released asap to a rehab center where we're breaking him out for his party. That's all he wants - to be there. We all agree that if he should pass on the way there or during or on the way home at least he'll go doing what he wanted!!!
When my time comes I hope I'm doing something that I love!!
Can't wait to give him a hug and a kiss!!!
Babs
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Babs, My heart goes out to you and your family. What a wonderful act of kindness you are all doing for your Dad. I hope that he enjoys his 95th birthday party with his family who obviously loves him dearly.
I, like you, hope I am doing something I love when my time comes.
Big hug to you from, Lynne
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Oh Babs, Happy Birthday to your dear father and I hope it's feeling well enough to enjoy the festivities.
Amy
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Got the results of Wed's scan today. For the most part, stability - - YAY!!! I'll take that, thank you very much. I feel like I've been granted a temporary stay of execution. But they found two areas on my thoracic spine near the area that was radiated in May that are much more prominent. RO says he does not want to do further testing at this time unless my pain level increases substantially. Okay by me. I will have a PET scan in February to see what we may have to do next. I assume PET scans show what's going on in the bones much more clearly (correct me if I'm wrong).
MO and I decided to drop the Xeloda dosage again as the SEs were pretty bad this last cycle. I will now be 1 wk on/1 wk off - HOORAY!!! That should really help my hands, ease the gastrointestinal issues, and help w/fatigue.
I am pleased. Wish there was shrinkage to my other organ tumors, the stuff on the pelvic wall, the other bones, and in the muscle tissues, but I'll take stability over progression any day of the week.
L
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Lita - There are a lot of studies that show NED has no advantage over stable mets in terms of overall survival. I suspect those bone "mets" are delayed evidence healing. It seems very common. I would declare victory and enjoy the holidays.
>Z<
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Lita. Stable is wonderful!!!'b
Well my dad went to rehab yesterday and we hired an ambulance to take him to and from his party!!!! His mind is back so he should enjoy today!!!!
Babs
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Babs, have a wonderful birthday celebration with your Dad! I'm sure you all will enjoy today.
Lita, so happy to hear your scan results are stable. I second what Zarovka said and I'll bet there is healing going on in the thoracic areas. I hope the 7/7 cycle reduces your se's significantly.
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Babs, Sounds like the birthday party is going to bea wonderful time with your Dad! He will love being with you and away from the medical world for a few hours.
Lita, greatnews on the scans! Stable is always good to hear. Hope the SEs are less in the weeks ahead so you can enjoy the holidays:)
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Well, I am back. Completed my Radiation to my 2 pelvic bone lesions a few weeks ago
Had a bone scan and got the word I am NED for now. Was thrilled to see my bone scan results.
I will start on Faslodex (Fulvestrant)shots and Ibrance(palbociclib) Nov 15 (this Tuesday) to prevent progression. I can be on these because my MBC occurred during Ai Treatment.
I am still fight a battle with sacral bone pain and muscle pains from radiation. I each Dilaudid like Tic tacs !The pain limits what I can do , luckily I love to knit and crochet and read.
And most lucky that I have a husband that tries to do everything for me. He is wonderful and so full of live ( the best medicine)
They tell me the pain should improve over the next month due to the radiation I will believe it when it happens.
Well I better get back to the sweater I cam knitting.
Wish me the best Tuesday- I see these Faslodex shots are 5ml each- my hips will surely be sore
Cat
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Babs - yes to celebrating!
Lita - Congrats on stable! Like Jen said, stable boy is a sexy beast!
Cat - Nice to see you posting with such good news! I've had pain flare from rads and it can be quite rough, but give yourself time, it will get better. Good luck on new tx.
Good week-end to all!
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Iwrite, you said something in your first post about the life expectancy of bone mets to be only three years? I've never been told that. That kind of freaks me out to be honest. My onc said he is getting three to five years with the majority of his patients with anti-hormonals, and then they move on to something else. He said most are living 7 to 10 years. So I'm wondering if everyone else has been told only three years? I know there are ladies on here who have lived far longer, but gosh, to think that the norm is only three years is downright scary!
P.S. My regular doc takes care of my prescriptions although my onc can prescribe them, I do that because my regular doc knows all of my health problems and kind of juggles all the meds for me.
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Today was great. Lots of tears of joy! I'm the tall one in the left!!!!
babs0 -
Wonderful, Babs! How amazing!
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Babs, What a wonderful celebration for your dad, you and for your family! Thanks for sharing the photos.
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Gracie, I read a very recent study out of MIT, I believe, that used a computer to analyze survival stats, and as I recall (and was very bolstered by!), it's actually more like 10 years for bone mets only. I'll try to find that and repost it. But whether it's 3 years or 10 years or somewhere in between, I feel very optimistic about some of the newer drugs currently in the pipeline, and the recognition that Stage IV bc desperately needs recognition and research funding because years of hyping awareness hasn't made a difference in survival stats.
Babs, what special photos! I love the fact that you all sprung your Dad out of rehab to celebrate! I'm sure there was an element of adventure to doing that that was very exciting and joyous for him. And love having a beautiful image now to go with your screen name! You look great!
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Deanna, what are you hearing about drugs currently in the research pipeline?
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Babs what an honor you guys bestowed on your father!! Such a lucky man. So it's your mom and sister and you, you all look alike!
Lita Pet/CT is a better modality for bones, from what I know. Yes, stability is good, I totally get what you are saying about at least not being progression, it's a hard lesson, but is something that I have learned to yearn for.
Cat great news!
Patty how are you feeling these days?
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Gracie - there is some old statistic out there that MBC has an average live expectancy of 3 years from diagnosis. that means that half of the women in some pool of women with MBC died within 3 years of diagnosis. so the 3 year thing is out there. but even in that unfortunate pool of women, half lived longer. and i think its pretty out of date. further, statistics don't mean anything without context: type of cancer, type of mets, stage, etc. we're not a statistic, treatments are changing rapidly. i don't find anything useful in these numbers except for a vague admonition to be ready as I may not make it. but now that my affairs in order, my focus is on a different problem: what happens if I do live as along as I please. that is a more interesting question ...
>Z<
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Babs what a wonderful celebration! he looks so happy, as you all do!
Gracie, I second Denna and Z. My Onc is telling me 10 years plus.
I listened to most of the Komen MBC conference today held at city of hope and was highly encouraged by what's in the pipeline. Check out the video on the KomenYouTube page. Excellent presentations on Hormonal receptive, Her2, and triple negative. Plus a researcher on cell activity.
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momall the picture was of me my husband and my cousins plus my dad
Below is me my sister and my niece. I'm in the middle
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Jen - I am interested in the conference but I can't find the videos anywhere.
>Z<
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Thanks so much for your responses I was kind of freaked out by that three-year thing. Was starting to wonder if maybe my oncologist was just trying to keep me positive but what you've said kind of holds up with what he's told me to that he has patients that are living seven and 10 years and someeven further than that ! Thanks for letting me know ladies !!
Babs, it looks like you had a wonderful day with your dad I'm so happy for you and for him that he has his family around him! And you are gorgeous girl!!!!
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Z, they steamed on Facebook and will post to YouTube in a day or teo
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Jen thanks for the info, will look for it.
Babs gorgeous picture. I thought the person standing next to you, looked very much like you.
Btw, I found out the reason Onco requested the unstained blocks of biopsy, it's to find out about AR. How it's gonna help, I am not sure yet. Besides all the other stuff, there are nodes under the axilla that are growing in size, would that mean anything one way or another. Scans in about 3 wks, after end of cycle 2 of Xeloda with everything else.
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