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Bone Mets Thread

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Comments

  • gonegirl
    gonegirl Member Posts: 1,022
    edited June 2016

    mom all the time I did have biopsy of liver tumor. Hmmm. Not sure what to say about blood test. Never did that. Cancer is such a moving target. I joke with my onc that I am clinical trial of one. I'd certainly want to know how often she'll be monitored to make sure things are working. What type of immunotherapy? I only had radiation to a spot on my rib

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2016

    Dee - thank you for all the effort. This is an important study.

    Lillymillie - Welcome. Wishing you boring scans. For a brief period I took my bone met seriously and investigated taking Xgeva or Zometa in addition to my hormone therapy and ibrance. Many people seem to tolerate them easily. Something to ask about. Many people in this forum have actual experience with these drugs.

    >Z<

  • Kendrasue
    Kendrasue Member Posts: 107
    edited June 2016

    Hello, dear ladies. I haven't been posting, but trying to keep up, and sending loving and positive thoughts to everyone. By the way, my info on Deanna's contact list is now outdated but I'm still available by private message. xo

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited June 2016

    Dee - Ugh that waiting and travelling! The clinical trial coordinator called me yesterday. She doesn't know how long they will be recruiting or how many but says it's brand new. Told her I had not progressed but she said it's worth a shot anyway. She emailed me all the requirements for my MO that I forwarded to my niece navigator. To be followed.

    Jen - that little man is gonna break a few hearts!

    Gritgirl - congrats on your upcoming wedding!

    Lilyimillie - good luck with your scan today. Glad to hear that the second round went better. Wishing you stable results.

    Mommal - you and Dani are always in my thoughts. Amazing the things we learn here. Wishing Dani the best.

    Hugs all around!

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited June 2016

    Update on Ibrance clinical trial. MO was going to propose it to me. She wants to see me early July to get the ball rolling and see if I qualify.

  • Andi67
    Andi67 Member Posts: 314
    edited June 2016

    Hi all and welcome to LillieMillie. I finally got answers on my Xgeva question today (posted a month ago... and pages and pages back!) I have been on it for bone mets for almost four years, and I know some of you said you were only on it for 2 years (maybe 1... I can't remember) and your oncologist recommended stopping after that. Anyway, my oncologist said that the two things to worry about were kidney function, as it's hard on the kidneys and another long word I don't remember right now - but you all talked about it - issues with your jaw bone. She said it really varies by person, but in her opinion as long as you don't have issues with either of those two things, the positives from the drug outweigh any negative. I think I mentioned I don't  seem to have any side effects from it. I didn't realize how it expensive it is! So I will be continuing with it for the foreseeable future.

    XO

    Andrea

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2016

    Angie - thanks so much for letting us know what you are doing. It is so important to grasp the full range of experience, in terms of outcomes and side effects, one can have on these treatments. Your oncologist doesn't follow recipes and seems to be paying attention, instead, to what is happening with you.

    Although I am not taking it, Xgeva was proposed at one point and may become part of my treatment.

    >Z<

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2016

    Andi, how often are you getting Xgeva now? And are you also on Ibrance? (Sorry, I can't recall.) I'm asking b'cuz my onc, who pushed me to get on Xgeva, is going to cut back on my dosing schedule after just 6 mos. She suspects those of us on Ibrance might be more susceptible to developing osteonecrosis of the jaw (that long word!) -- maybe something to do with our low counts.

    Z, I really dragged my heels on Xgeva, but it's made a noticeable difference in my pain and also my posture, which was getting hunched over from damage to my vertebrae and because I was in so much pain. I honestly wish I'd gotten on it when I was first re-dx'd, rather than dragging my heels about some needed dental work as long as I did.

  • GG27
    GG27 Member Posts: 1,308
    edited June 2016

    Hi all!

    Deanna, that is so interesting about Ibrance & osteonecrosis which I am always mentioning to my dentist. Thanks Andrea for your input, you gave me another question to ask on Tuesday.

    Linda, so happy that you are getting a shot a this trial, I think it's a good one. You would be getting on it at almost the same time as me, we could compare notes.

    Nice to see you Kendrasue, do stop in once in a while!

    I don't think I mentioned that I applied to our Ferry Corp for a medical assured loading letter which I qualified for, this will make the trips a bit easier. Having to sit for hours in line before boarding the ferry was what was kind of scaring me, but with this letter, we go to the head of the line.

    I did a bit too much gardening today after moving all the living room furniture around yesterday, so it's off the dreamland for me, sweet dreams to all, cheers, dee

  • DebK227
    DebK227 Member Posts: 48
    edited June 2016

    Well ladies, I just want to say thank you for all of the information you continue to provide. I met with my MO on Monday, with my twin sister in tow. My MO has decided to "shake things up" a bit, since I showed progression in existing lesions on my vertebrae, and added the sacrum and iliac bones to the mix! He was very happy my 5mm lung lesion was gone, TM's dropped from 182 to 159, and T3 and L3 were stable. Oh, my femur is also showing sclerotic characteristics. So far, it was my only lytic lesion, everything else is sclerotic!

    Long story short, we decided to switch from letrozole to Faslodex, since Arimidex and Aromasin failed my 100% ER/PR+ status. He had a peer to peer conference call because my Aetna insurance denied Herceptin since I wasn't fully positive. He was afraid the insurance company would wait up to 2 months to decide to accept his appeal, but he fought well and it was approved the same day he called! So, yesterday, my normal Xgeva injection day, also came with 2 very tolerable Faslodex injections and a 90 minute infusion of Herceptin! I must admit, I was very nervous about getting everything at once, but I feel great. I continue the loading dose of Faslodex in 2 weeks, and will get Herceptin every 3 weeks. At this pace, I can stay on my every 3 month scan schedule. I'm actually excited about the new regimen! Praying it works..

    As always, all of you are in my thoughts and daily prayers.

    Debie

  • gonegirl
    gonegirl Member Posts: 1,022
    edited June 2016

    My onc wanted to put me on a bone strengthener like xgeva but I was afraid of onj. Research came put not long ago that showed that dosing 2 times a year instead of once a month is just as effective and there's no onj. So maybe I'll agree. My fiancé's sister also has mets and she is really suffering from onj

  • cjanet
    cjanet Member Posts: 288
    edited June 2016

    Hi ladies,

    I'm so sorry I haven't kept up! I've been consumed by my liver mets! I'm on Xeloda, and I've had 2 liver biopsies, the last one was Wed. I did update that I'm now triple negative. In January I only had 2 little spots on my liver but by May they had turned into full blown tumors and I can feel at least one of the tumors.

    I've had a lot of nausea and abdominal pain from Xeloda but then again I've also had constipation. My bone mets don't bother me as much anymore. It's like my body only handles one area of pain at a time, so if it's my abdomen, then my neck isn't bothering me as bad. Though there was also progression in my T7 according to the scans but I have no pain there.

    My next scans will be in July after 2 cycles of Xeloda. I can still feel that tumor and it's pretty big so I have my doubts about Xeloda but we'll see.

    I do love you guys and think about you and I'm sorry for not keeping up! I've been on FB a LOT more FYI....so feel free to be my friend there, as I'm sure some of you already are!!

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2016

    congratulations Deb!

    cjanet - hang in there, very interested in how your scans come out after 2 cycles of Xeloda. what do you feel your other options are?

  • Wendy3
    Wendy3 Member Posts: 872
    edited June 2016

    Good morning ladies,

    Christine hang in there hopefully the meds will kick in soon and dissolve those crappy liver mets. Are you having great weather lots of vitamin D, do you take milk thistle it helps the liver to detoxify.

    Dee I didn't know that was possible with the ferries. Hmm I'm heading over to the island twice this summer for regattas July 8 and I forget the other date. If your around I will be in Naniamo Friday Saturday and Sunday.

    So had my clinical trial checkup yesterday , tumour is down in size again getting hard to find now yeah! Most of my bone mets have become sclerotic so seems to be working for me. Forward and onward now😊

    I wish you all a great weekend

  • GG27
    GG27 Member Posts: 1,308
    edited June 2016

    Hi all!

    Cristina, so sorry that you're having such a bad time of it right now. What is your MO saying about the tumors? Hoping that you are wrong, wrong, wrong about Xeloda and it shrinks them down. Don't ever worry about keeping up, I feel bad that I was so wrapped up in my own stuff that I didn't notice you hadn't been around. (((hugs)))

    Wendy, I didn't know about the ferry letter either, but I sent them an email telling them my situation because it's not just the big ferries, but our own ferry sometimes has a 2 or 3 sailing wait which equates to 3 hours, that's 9 hours of just waiting, not including the sailings. Anyway they said my Dr just had to send them an email asking & they sent me a letter which I present along with my TAP form & I don't have to wait in line.

    I will be around on the Friday & Saturday of that first weekend, heading to Vancouver on the Sunday. Would love to meet up, I would walk on the ferry & could meet you down in the boat basin? Good news about your mets!!

    Good news Debie!! Shaking things up is sometimes a good thing, especially if you feel good, I can hear it in your post!

    Have a good weekend all! cheers, dee


  • zarovka
    zarovka Member Posts: 2,959
    edited June 2016

    Congratulations Wendy! What clinical trial are you on?

  • Andi67
    Andi67 Member Posts: 314
    edited June 2016

    Deanna - I am getting Xgeva once a month. It started out as every six weeks, and then because I am getting Herceptin once a month, I just get it when I am there. I am not on Ibrance. Herceptin only. I am not even taking an aromatase inhibitor, even though I am ER+ and slightly PR+. I think my oncologist felt that because she was so aggressive with chemo when I was diagnosed Stage IV, and because I originally got Lupron shots that I am literally Estrogen NEGATIVE.. she doesn't think there is a drop in my body, and I feel like she is right. (ugh. not always good) So I just get Herceptin (no Perjeta) and Xgeva once a month. My counts are on the very low side of normal.....like just barely normal every time. Just had tumor markers done yesterday and they were in normal range.  But if you remember - my spine is definitely curved... I am seriously an inch shorter than I used to be. :(

    Dee - all the talk of ferries...I am still dying to come for a visit!

    Hugs to everyone else!

    XO

    Andrea



  • Wendy3
    Wendy3 Member Posts: 872
    edited June 2016

    Zarovka it called Monelesa lll fulvestrant and and an Ibrance sister drug. I have to add that friends here in the city are on the same trial and are not noticing any shrinking. I think a big part of it is that I have cut out so much of my old diet that I'm hoping to starve the cancer before it figures out its being starved. I know it may be naive of me but it gives me hope and anything that does that is in my books a good thing.😄

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited June 2016

    Precision Medicine and Breast Cancer

    This is a podcast that Dana Farber did on Thursday afternoon. I registered for it and still can access it to listen to in which I taken notes.

    To listen to it you must first register first, but it so well worth your while to hear what Dr Stover had to say.

    https://event.webcasts.com/starthere.jsp?ei=1107607


  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited June 2016

    I have a lot of bone and skull mets. It is throughout my spine and sternum as well. The cancer had eaten up a lot of my right leg so I had to have a rod put into the femur from hip to the knee (in early Feb 2016). It's been amazing because I have not had a lot of bone pain except for the stupid rod that was put in my right femur.

    My question is first, will the treatment (Kadcyla) get into my bones and kill the cancer? I heard it is very difficult to treat bone cancer. The cancer is also in my bone marrow. I have had a lot of radiation to the bone which has caused a drop in my red blood cells. I had to have a transfusion a few months ago...not sure if it was due to a brain bleed or lack of bone marrow. I had to have two iron transfusions/IV.

    Second I wonder if once the cancer is in the bone marrow if it can be cured by Kadcyla. I was told by someone that once cancer is in the bone marrow and radiated that it can no longer make the red blood cells needed and or becomes a blockage in the system.

    I know this is confusing, which shows I am too confused about all this and why I'm asking.

    Thanks ahead for any help you can be to me on this. I asked my oncologist and nurses and they look at me like I lost my mind. Except they admit due to radiation, my bone marrow/bone can't make the needed red blood cells...but I do have a few good ones left. I guess???????


  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2016

    Z my daughter has taken Zometa and now she takes Xgeva, she likes that it's just a shot.

    Dani's Onco was not crazy about Xgeva, but I'll be honest, I saw that the majority of ladies take it in this thread, and I read up about it, and told him we want it, the word is that it helps with bone mets. She only has to watch for any difficult dental work. Some ppl take it every 3 mos, she takes is every 6 wks. Now she is overdue bcs she has an appointment with Dentist, but the kids being home for summer vacation, I think it will all be postponed.

    LindaE that's sounds really good. More prevention, why not?

    Wendy that sounds fabulous! So the idea is that you are not using Ibrance with Letrozole but with Faslodex?

    Hindsfeet all I could say is that it's supposed to be very good Kadcyla. Unfortunately it did not work for Dani, none of the HER2+ drugs have really worked for her. Really weird. She showed +++ FISH, so no one could figure it out. But they say best is to get TDM1 WITH Perjeta. Wanna ask? For the skull mets, she has been having MRI of the Brain, actually suggested here, and it's good that we did, bcs it shows different than on PET/CT. And it helps us see if and where and when the lesion is pushing into the Dura etc…

    Cristina so sorry, but keep looking at different options you have for Triple Negative.

    Dee that is so smart. They call it the "C" card. Good for you.

    Andi good for you.

    Lilliemillie just know that we will try to support you till you get the right tx.

    The name of the Immunotherapy I don't know yet. But he did order Lynparza(it's really for late stage ovarian cancer, and she does not even have the ovaries, but there is something coming out saying that it could help) really it's a study for Her2- Like you told me Susan. So it will be Lynparza/Ibrance/Letrozole( should we change to Faslodex??)and Herceptin. AND immunotherapy. And I still don't know what to do about the liver, to biopsy or not? Susan, I see that they decided to wait to see if the treatment takes care of the mets. But like Cristina said, first there were just a few, and then there so many, that's what freaks me out.But it's invasive, so that keeps me from jumping and asking for it.

    Carol I registered, he is not bad to look at, so it will make for an easy listen ;) I wanted to go through some threads here, and then I will concentrate. Thank you soooo much!!

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited June 2016

    MomAtt- let me know you're thoughts. I have monthly appt tomorrow and a list of ques. If you have one regarding pod cast pm me and I will ask for you.

    Hugs to Dani through you and your divine devoted love. Carol

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2016

    I'm sitting at MSKCC waiting to have my PET scan. Ugh!!!

  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2016

    Babs dear, by luck I checked in now, i am glad i could wish you great things!! Hope to hear from you soon. Warm Hugs



  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2016

    Just seeing this, so you're probably done by now, Babs, but thinking of you and sending much love and positive thoughts that your results are all good! I'll be watching and hoping for great results. Deanna

  • jensgotthis
    jensgotthis Member Posts: 673
    edited June 2016

    oh Babs, this waiting sucks. When will you get your results? Hoping you get good ones

  • Wendy3
    Wendy3 Member Posts: 872
    edited June 2016

    Babs I know waiting sucks we all know that one. Try and put your mind in a happy place envision great results for yourself as I am for you. You may be done as I write this so crossing my fingers all goes well

  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2016

    Carol, i just finished watching, his message has much hope. My concern is: does the Guardant360 blood test, is there accuracy in it? Also, what does it mean the tumor has BRCA2. I guess I am just overwhelmed that her tests come back Triple positive, and she did not respond to any therapy.

    And i hope you get satisfaction with your visit. Thank you so much for your good thoughts.

    Will check in later.




  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2016

    I do find it surprising that he says that most breast cancers don't recur. And that most BC is curable. Very strange. Not from my experience.

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited June 2016
    MOmAtt- I was told that they have just found new mutation markers of the Braca gene. Testing should be redone if more then a couple of years. I also found it surprising that with Ibrance the idea is to get to therapeutic levels which obviously can be OK to be on lower doses that achieve the lower counts in shorter period of time. That floored me today. After she told me my counts were too low to continue later this afternoon I feel tired and I ache. Then I remembered... Xgeva shot!! Always gives me a little noticeable discomfort. As for recurrence. I was 18 year remission. Immune system failed me.

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