Bone Mets Thread

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  • Delvzy
    Delvzy Member Posts: 527
    edited December 2016
    1. hello girls I have been reading along as as a newbie with bone mets there is soo much that is like another language to me. Are there any Aussie girls on his thread? I live about 1hour plus from Melbourne in a regional city of 110000. I have had s lot more Odin in ribs and back and pelvis where the extensive mets are sine radiation and I have been told it will get worse before it gets better. I had my first oncology appointment since initially being diagnosed yesterday and he said my tumour markers are going down and my calcium is now normal from bring too high. I also have been accepted into z now closed trial at Peter Mac cancer centre in Melb in January they want to take me off letrozole and put on this new drug which has been used in other countries and hopefully gets you longer before progression.
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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited December 2016

    I don't post too much but read every day. I posted in the Ibrance thread and wanted to share with you all. Had a scan this week which shows I am still stable after 20 months of Ibrance. All noted bone mets are sclerotic. Pet scan in June had no abnormal uptake. I am very grateful for the informaation and support shown to Sall here, I have learned so much here.

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  • annieoakley
    annieoakley Member Posts: 870
    edited December 2016

    Andi67, nice to see you popping in here. Don't ever worry about addressing each of us individually, there are so many of us. I hope you and dh have an awesome time sailing through the British Virgin Islands. Happy 50th Birthday to both of you!

    Gracie, no worries, praying all goes well for you and that you never have to worry about ONJ. It seems there are differing opinions on what sort of dental work can and can't be done. I was never told that an injection for freezing could cause a problem but please be sure to check with your dentist.

    Milaandra, so sorry to hear of everything you're going through with ONJ, that is just awful. Sending you healing vibes.

    Lynnwood, that is the greatest news! Wow 20 months on Ibrance, may you continue to have stability forever and ever. What a great Christmas gift. I'm doing a happy dance for you!

    Delvzy, welcome but sorry you have reason to be here. If there's anywhere you'll learn the language of bone mets it's here, this is a beautiful group of knowledgeable women. Chrissyb is from Australia and pops in here every now and again. She has a specific thread titled "If you're not stage IV but have questions you may post here". Sorry I don't know how to link it. Wishing you all the best.

    Hugs to everyone here, Annie

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2016

    Andie - seems I missed your birthday. Happy Birthday to both of you!

    Delvzy - curious to know which clinical study you will be on. Keep us posted.

    Lynnwood - awesome news. Congrats!

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  • Beatrix_
    Beatrix_ Member Posts: 14
    edited December 2016

    Lynnwood - that's wonderful!

    MammaRay - I'm on Zometa. First and second doses were the worst. Had lung pain, couldn't brief, convulsions etc...so I took Dexemethason into a vein before Zometa for few months. Last two Zometa doses without steroids and is fine, no any side effects:)

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  • Kaption
    Kaption Member Posts: 3,192
    edited December 2016

    Lynwood,

    That is wonderful news! So happy!


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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited December 2016

    Annie, are you talking about the shots to deaden? I know my dentist did say when they take this temporary crown off and put the permanent on, they will not have to give me any deadening shots. I wonder if that coincides with what you said?

    Lynnwood...woo hoo...great news! I hope and pray I reach that point too!


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  • GG27
    GG27 Member Posts: 2,128
    edited December 2016

    hi all!

    Away for 4 days & I'm pages behind! But I did glean from others posts that Lynnwood is stable & do we ever like to hear stable! congrats. I will get all caught up on everyone & thinking of all of you even if I don't post to you.

    My WBC & neutrophils were the highest they've been since I started Ibrance, so starting cycle 6, yay! I had a fill-in MO yesterday & he thinks that my extreme cold is from Femera. He has a number of patients that complain of this, he says the only thing you can do is bundle up with layers. I'm not giving up Femera, so I guess I"ll have to shop for some new sweaters.

    We are in for a huge dump of snow here on the "wet coast", which will mean most likely power outages, so you may not see me for a few days. thinking of all of you, cheers, dee


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  • momallthetime
    momallthetime Member Posts: 1,575
    edited December 2016

    Lynwood so happy for you!


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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    GG27. Congrats on your awesome neutrophil counts.

    Lynnwood - thanks for letting us know about your fantastic results.

    >Z<

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  • babs6287
    babs6287 Member Posts: 2,021
    edited December 2016

    Lynwood. So happy for you!!!! Celebrate !!!

    Having my first Taxol infusion tomorrow. My TMs doubled in just 3 weeks. Yikes!!!!

    Babs

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  • smtray
    smtray Member Posts: 9
    edited December 2016

    Hello I have not been on here in a long time. I was wondering if anyone is on herceptin. I was dx in may of 2012. Done with all my treatments in dec 2012. Now I just go in for herceptin treatment and zomita. I really don't have any problems with them. Just tired fore few days. My doctor plan is to keep me on it as long as he could. I'm just looking for a little feedback.

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited December 2016

    Yes that's the protocol for anyone who was diagnosed prior to 2013. Congratulatons for having stable disease for the past four years!

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  • Lindalou
    Lindalou Member Posts: 647
    edited December 2016

    Kathryn, good luck as you move forward with sentinel node biopsy.

    Babs, Hoping Taxol works well for you with minimal SE's.

    My MRI and CT yesterday showed no involvement in the brain, and some fractures in my spine and rib that correspond to previous fractures but the rods are supporting the spine so that's good. New fracture in hip and tumors in T-10-12 are somewhat stable with little bit of progression. More lumbar disc bulging and compression. My jaw did not show beginning of ONJ, but I do need some crown and possible root canal re-do, so I will be seeing an oral surgeon next week for that. DH's PSA came back <.01 which is where it should be post prostate surgery. So all in all a pretty good report.

    Wishing everyone a good weekend.

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  • babs6287
    babs6287 Member Posts: 2,021
    edited December 2016

    Lindalou. So glad your report and your DH s report were good!!!!!!

    Bab

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2016

    Lindalou - happy to hear good news for you and DH!

    Babs - you will be in my thoughts today as you begin Taxol.


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  • Iwrite
    Iwrite Member Posts: 870
    edited December 2016

    Lindalou- Glad your report was good overall. Bulging discs are truly a pain so I hope that is manageable for you. I'm so happy that you and DH can relax and enjoy the holidays:)

    Babs- I hope treatment is easy on you today and it beats back the progression. Sending hugs!

    smtray- sounds like you are having a great run with your treatment. Enjoy the stability!!!

    Linda and Pwilmarth- Your furry avatars look so happy!

    I met with the dr crew and decided to remove the melanoma but not do the node biopsy. Having systemic MBC means lymph nodes have cancer cells already and any new discovery wouldn't change treatment. I feel good about less invasive procedures. It also means I'm taking a three week break from Ibrance so this would be a good time to use my lessfuzzy brain.

    Hope everyone has a good weekend!

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited December 2016

    Lindalou...sounds like good news. Glad both you husband got pretty good reports !

    Babs, Will be thinking of you today hoping that the taxol is easy on you that everything goes well and that it starts kicking butt !!!

    I write... glad to hear that you don't have to mess with that node biopsy at least they can remove the melanoma and get rid of it if you reminded me that I hadn't had my check up with the skin doctor for a long time so I'm going have to make an appointment too! Good luck with that removal hoping it goes quickly and that everything goes well!

    I got my puppy back from the trainer this week he's been there for 3 1/2 weeks and he's not nearly as rough and tumble as he was when he left ! And he hasn't had one accident in the house! I am really hoping and praying that I can handle him and that he calms down and then I'll be able to keep him because he is a cute little thing!

    Blessings to everybody

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited December 2016

    Babs,

    Best of luck with the Taxol. It saved my life. I honestly believe that if my Onc hadn't put me on it when he did, I wouldn't be here now. I know it's tough to have a systemic treatment, when one could take out the liver mets. My Onc told me that he likes to address the "unseen" cancer with chemo, and saves the ablation/surgery/etc. for one or two troublesome spots that refuse to behave when everything else is going well.

    You should feel OK for two or three days, depending on your steroid pre-meds, and then you might start feeling squiffy as the steroids wear off. Keep the fluids up, and take some stool softeners - just in case. If you eat meat, try to get some fairly lean red meat down at least twice a week to keep your hemocrit up. Anaemia and baldness were the only bad side effects I had.

    Take care,

    Jennifer

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited December 2016

    Did I see someone say something about being cold all the time having something to do with femera? I can't find it..

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  • GG27
    GG27 Member Posts: 2,128
    edited December 2016

    Gracie, that was me. The fill in MO told me he has a lot of patients on Femera complaining of deep, deep chills. But he also said that the 2 days that my body temp was way below normal could have been an infection as well. My temp is back to normal, but I'm still cold. I've taken to wearing a merino wool undershirt. cheers, dee


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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited December 2016

    Thanks, Dee! I'm freezing!!! Wool socks, sweats, long sleeved turtleneck and heavy sweatshirt over that, my thermostat is set at 76, and my little space heater is running in the back of the house and I am freezing!!! I can't get warm!

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  • GG27
    GG27 Member Posts: 2,128
    edited December 2016

    Gracie, are you taking your temperature everyday? I take mine first thing in the am before coffee or water just to check. They told me this time that an infection can give you a low body temp not just cause a fever & that we should be calling the MO's office if it's low. Get yourself a thermometer if you don't have one & start to track it. I shovelled mine & my neighbours driveway, that finally did the trick! ;) cheers, dee

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited December 2016

    Babs wishing you the best with this new treatment.

    Lindalou so happy for you. Sounds good for you and hubby!

    Kathryn are you treating the melanoma met at all? Or continuing with the same protocol?

    Dee good for you!

    Gracie, how nice to have the company back!

    Dani almost missed her treatment because her #s were so low, but Onco decided to take a chance, I am glad, she is coming along. The AST/ALT is coming down, the Alkaline Phosphate was a bit, then going back up, should it not be in sync? Anyone here knows?

    Also, I am trying to gather thoughts. Gifts. Dani has been going in 3 weeks in a row, one week off. So we get to see all the nurses that administer the infusion, NP, front desk person, secretary, the phlebotomist, other secretaries that sometimes take over when main secr is not there, insurance person, yep, and Onco. And then the RO and NP for RO, and the people that help things along! She is going again this week or next. So what now? How do we gift everyone? Chanukah, Christmas I think they kinda would like to get something…Just a nice chocolate ensemble, no. Little gifts to each person? It's a lot of people but if it's the thing to do…Could I ask what are you doing? TIA

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Mom - I am a little selfish I suppose, but I am in a place where I am gathering all my resources to care for myself. I am not dealing with half of what Dani is going through, but I still see myself in a critical situation. Couldn't Dani use a massage or a special trip with the kids? A spa day for you? I am sure that what the nurses want more than anything else is to see a smile on Dani's face or a little relaxation for you. The way I see it, there are times when it really is about me. Given the way this year has gone for all of us ... I hope everyone's first priority is taking care of themselves.

    >Z<

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited December 2016

    Zar you are always the practical one. I tell you in a perfect world...(i think that's kinda my motto), but I know that some people do give gifts. In the past, we only had one doc, minimal RO meetings, less staff, and now it has been months that she has been going so often so it gets harder to just ignore, you know what I mean. I have given in the past, I am not sure it has helped us much, but I feel guilty if not. Thanks for your support. You are right that it's best to get TLC, and maybe she will take a day or two with the kids when they are off...

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited December 2016

    Should I start a thread so everyone could chime in? Wanna help?

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  • lulubee
    lulubee Member Posts: 1,493
    edited December 2016

    At some oncology clinics, it is against the rules for staff to accept gifts. You should call first.

    Every nurse I know loves a good tube of hand cream. Several nurses have told me they are inundated with candy around the holidays, starting with Halloween, and most of them are sugared out by New Year's. So a fruit basket basket might be a better thought.

    For years, I took my oncologist a beautiful bottle of wine. I found out last week that she is a tee-totaler. Yarg.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2016

    I may be selfish but I don't give individual gifts. I give nice different chocolates to the secretaries who in turn share at the office with nurses or docs. Comes with a thank you card to all.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited December 2016

    Lulubee that is funny, at least she took it from you gracefully. I already gave a nice pouches for jewelry when we first entered the Center, because they were nice in guiding me what needs to be done etc… I have given beautiful wine to Ex Onco in the past. But it's a SHE this time around, I just think maybe a scarf or wine nonetheless?

    LindaE chocolate works wonders. I have seen it. I do think they expect gifts. Also, it's the fact that we are there so often. It's an opportunity, but there are so many on the staff, and it's kinda of an open office atmosphere, so everyone knows everyone's business.

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