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Bone Mets Thread

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  • illimae
    illimae Member Posts: 5,739
    edited July 2017

    Photogirl, I love the pic, baby animals are so cute.

    Wendy, I'm so glad taxol is working well for you.

    Welcome ksmatthews

    Z, how are you recovering?

    Had appt's yesterday, Echo was fine with EF at 58, same as last time. MO wants me to start Tamoxifen now and an Xgeva shot every 6 weeks. I read the previous comments and I'm certainly hoping for energy over flu like fatigue. Lastly was my BS, the axillary drain remains, ugh. I've already been home for 3 weeks and I can hardly stand it.

  • Wendy3
    Wendy3 Member Posts: 872
    edited July 2017

    Thanks Lita feeling a bit better now

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    Wendy, Illimae and everyone ... thanks for asking about me. To bring everyone up to speed ... I am recovering from a bad spill on a mountain bike ... went over my handlebars on a jump almost a week and a half a go. Sprained my wrist, banged up my shoulders and ribs. Healing, but really slowly, thanks to all the drugs I am on.

    Yesterday I needed to work on my vacation rental, which is a lot more physical work than I need to be doing with these injuries. Forgot my pain management drugs at home. It was a normal day of work but by the time I made it to my bed I could hardly move or think or read. I was crying. When the symptoms from anything ramp up, I get feeling so low. It's not cancer directly, but I don't bounce back from injuries. I don't fight through things like I used to prior to the hormone suppression.

    I am on an anti-inflammatory (etodolac) and a muscle relaxant (methocarbamol). The latter probably makes me tired.

    The xrays of bones they took to check for fracture showed bone loss ... I had no bone loss as recently as last fall. I am worried that hormone suppression is moving quickly to age me... gotta line up DEXA scans and strategies to deal with bone loss.

    Little things, but they drag me down. I feel like even if I get through this, I am less myself. Not the person I want to be for my kids and my husband.

    Got a good night sleep. Today I spent the day in bed. Pain is decreasing and spirits improving. Will walk when the heat breaks.

    Illimae - fingers crossed the port thing (which I don't understand, no port yet) is resolving and you will be moving soon. you know how I feel about moving...

    Artist - I am thrilled you are on the right path and upbeat, as you should be. Nice work sorting things out ...

    Wendy - It's a mind field mentally and physically. We need the standard of care doctors for certain things, but not their attitude.

    My small town doc is as bad too, but she orders my scans and deals with the specialty pharmacy and all that has to be local. I use second opinions and consults to make sure I am on the right path as far as treatment and diagnostics. Knowing that these other folks are looking out for me and I have options and people I respect to discuss them with allows me to ignore her weaknesses.

    Time for a walk, the cure for everything.

    Later ladies ...

    >Z<


  • mike3121
    mike3121 Member Posts: 280
    edited July 2017

    Good rant Lita57

    My wife's Oncologist is young and relatively inexperienced. However, he is wise enough to consult his fellow Oncologists on the Tumor Board especially since my wife's condition is complex.

    MikeW .

  • Bliss58
    Bliss58 Member Posts: 938
    edited July 2017

    ksmatthews, welcome to the thread! You'll find a lot of good information and encouragement here.Good luck with your scans and the Cisplatin if needed.

  • cure-ious
    cure-ious Member Posts: 2,892
    edited July 2017

    Hi Wendy,

    If you are BRCA-mutant then you'll want to be taking a PARP inhibitor, and maybe especially in combination with something else. Here is from a review of some clinical trials:

    There are 3 key ongoing phase III studies of PARP inhibitors in BRCA-positive breast cancer that are recruiting patients. The phase III randomized BROCADE-3 trial is assessing the addition of veliparib to carboplatin and paclitaxel. The phase III EMBRACA trial (NCT01945775) is comparing talazoparib with physician's choice of chemotherapy. The third trial, the phase III BRAVO study (NCT01905592), is comparing niraparib with physician's choice of chemotherapy.

  • micmel
    micmel Member Posts: 10,055
    edited July 2017

    ksmatthews~welcome to the thread, I am very sorry that you have to be here, but there are kind,sweet, wonderful ladies here, like a book of knowledge. I pray that you will find what you need through the guidance andkindness that they show everyday here for all of us. I will be praying for you as well as the others. Great big hug to you! ~M~

  • artistatheart
    artistatheart Member Posts: 1,437
    edited July 2017

    Z, I am pretty sure we all feel that we are less than we want to be for our family. It's the perpetual mother's guilt that we are the caretakers and are so used to running a well oiled machine. Suddenly we are thrown this beast and it changes everything. My DH had back surgery last week and instead of me helping him out he was doing everything as I am still so low on energy and feeling a lot of nausea and abdominals feel so beat up. I've been virtually useless and feel so bad.I just want to get back to moving too and cooking, even though my appetite is NIL. Tons of appts this week so hopefully I'm on the upswing.

    Welcome ksmatthews!

  • auroaya
    auroaya Member Posts: 784
    edited July 2017

    Hi, I haven't posted in a while but always read and learn new things from you all. That's why I want to ask a question regarding Guardant 360. I just found out that my oncologist is approved and my facility has the kits necessary to conduct this test. But the ironic thing is I don't know anything about it, so I'm putting it out here to see if any of you smart ladies and gent can shine your wisdom on me. I understand the bare basic that it's a test to determine the DNA of cancer cells and can be used to find treatments specific to that. I'm currently stable on IV chemo (Abraxane) but it would be good to have something waiting if I run out of options. TIA.

    Aurora


  • Lindalou
    Lindalou Member Posts: 598
    edited July 2017

    Well gang I'm back in the radiation cycle. I've been having severe hip pain for the last month or two, and finally called MO. Got me right in for a CT yesterday and sure enough cancer has spread to ischium and iliac crest, and greater trochanter. The good news is that my MO literally finished talking to me and sent me right over to RO who then sent me for simulation all within a couple of hours. I have a pretty remarkable team. I start rads today. I am actually relieved that there is something I can do for the pain. I am on cycle 4 of Ibrance and will stay on that for another week as my wbc will drop with the radiation as well. I will finish rads on August 2nd which will be one day past my 8 year mark with metastasis. RO gave me a big hug yesterday and told me I am one of the longest patients he has had with mets. This will be my 5th round with radiation. So onward and forward and zapping cancer along the way.


  • micmel
    micmel Member Posts: 10,055
    edited July 2017

    god bless you linda~ you're an amazing woman. I hope your pain is taken care of. And you're back to being painless. I am sorry that you're having pain, I am sick of all this cancer stuff. Who can possibly deal with this day in and day out for 8 years. Our warrior!! Big hugs for you ~M~

    Also, please help me pray for Gracie, she hasn't been around too much and I am worried about her. She's been having some issues and she has become one of my closest people in here to me. I talked to her last week and she wasn't doing too good. Please help me pray for her! ~M~

  • bigbhome
    bigbhome Member Posts: 721
    edited July 2017

    Linda - 8 years! You are my hero! I sure hope those rads knock your pain down!

    M - extra prayers for Gracie.

    Hugs and prayers

    Claudia

  • Lita57
    Lita57 Member Posts: 2,338
    edited July 2017

    Yay, Linda!

    Yes, indeed, rads do help. The problem for us stalwarts is we often wait TOO LONG, thinking we can "tough it out" when pain strikes. We don't want to limp into the MO's office every time we get a new ache or pain, but new pains that don't settle down in 2-3 wks should be reported. This last spring, I know I waited too long to get my spine and right hip muscle radiated (soft tissue). My team didn't chide me, but they gently reminded me not to wait so long next time. We all know if we wait too long, cancer can eat away too much of the bone, and then you've got REAL problems (hip replacement, anyone?).


  • Wendy3
    Wendy3 Member Posts: 872
    edited July 2017

    Lindalou you are amazing and yup I bet it helps having a good team on your side. I'm still working on that one. I hope the rads knock your pain out of the gate😊

    M I will pray for Gracie wish her the best.

    Z I totally get what you mean. My husband said to me the other day this family would fall apart without you. I'm sure hoping he is wrong or else everything I've done has been for nothing. I was always a pretty active person and it's so hard to have to curb your activities so hard.. I've had to give up my horses so I changed to dragon boating now with the chemo that's pretty hard too but I went last night anyway😳. Keep waiting for something to snap but we will continue , you are one hell of a strong woman. You will heal from your spill and get back out there. As I will drag my sorry butt down to the water and paddle. I'm on a bit of an up swing right now the anger I'm feeling towards my oncologist has fuelled me to get cracking on my health being proactive is tiring. One day at a time ..

  • Lindalou
    Lindalou Member Posts: 598
    edited July 2017

    Lita, you are right. We all endure much more pain than we should. My MO just looked at me and said, "You know when you called today we all said, OH OH, Linda's in pain. She never calls." Then I got a short speech about calling sooner. Now my tx will be more involved. Lesson learned even after all these years.

    Hoping the best for Gracie, and M glad you are there for her. Thanks for the hug.

    Wendy, Whenever I can get out on a kayak, I think of you. Keep on dragon boating.

    Z yes its a mind field physically and mentally.

    Beautiful day here. Wish I could bottle it up and send it out to all of you.


  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2017

    Linda, happy for you to mark 8 years and hopeful your pain starts to disappear quickly and the rads are easy on you.

    Aurora, I've talked to my doctor about Gaurdant and Foundation One and he suggested I wait and use those tools after I've had progression to another organ since the cancer can mutate and that's what we'd want to treat then. A dear friend with mets to lung who experienced progression in the lung after quite awhile on her treatment plan (6+ years, I think) had a new biopsy taken and sent to Foundation One. She also did the guardant test (which is a blood biopsy) since the two tests have some overlap but each also covers a few different markers.

    Prayers for Gracie and for Patty, and for everyone. I too join the wishing for more energy and drive and hutspa train. I felt so fantastic while on vacation (no pain, good energy, great emotional state) but now I'm home and wiped out with zero ability to get up and go. It's very frustrating.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2017

    I need some help understanding what bone islands are. I've read some definitions on Mr. Google but still don't totally get it. I believe I shouldn't be worried about bone islands (I think anyway) but can anyone give me a layman understanding? Here's what my CT scan said:

    - Stable subcentimeter sclerotic foci within the right proximal femur, left superior pubic ramus, bilateral sacrum, bilateral iliac bones and L3 spinous process, nonspecific, likely bone islands

    Thank you

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    Linda- wow 8 years! That's pretty amazing!!!! I hope the rads get rid of the pain you're feeling.

    Z you're so right this is not an easy ride we're on!

    Wendy I'm in awe of your doing the dragon Boating. My brother suggested I try it and I just laughed at him!

    So, I was supposed to have my second treatment of Halaven in my 2nd cycle tonight but I got a call from my MO saying that there is a study she thinks will be good for me. And, that if I want to go into it, I must be off all treatments for 3 weeks so maybe I shouldn't do the chemo today. I am getting scans tomorrow anyway (due to my rising TM's). If they show that the Halaven is working ( doubtful) I can always restart again. If it shows progression, then this study might be applicable. I will know on Monday IF I will be accepted into this trial-you must be accepted. Here's some info-has anyone heard of this study? My concern is that it is a phase 1 study. And yes, I do have the PIK3CA mutation

    Official Study Title for Internet Search on http://www.ClinicalTrials.gov: A Phase I, Open-Label, Dose-Escalation Study Evaluating the Safety, Tolerability, and Pharmacokinetics of GDC-0077 as a Single Agent in Patients with Locally Advanced or Metastatic PIK3CA-Mutant Solid Tumors and in Combination with Endocrine and Targeted Therapies in Patients with Locally Advanced or Metastatic PIK3CA-Mutant Hormone-Receptor Positive Breast Cancer


    Thanks!

    Babs

  • melmcbee
    melmcbee Member Posts: 371
    edited July 2017

    Hi Jennifer. Bone islands are benign. I have one thats been there for years but I had some new sclerotic lesions since my last scan that I got one of them biopsied and it was mets. I had a mri first that showed one was suspicious. A normal bone scan and finally the biopsy. Mine were all small so they didnt show up on bonescan. What did your mo say

  • illimae
    illimae Member Posts: 5,739
    edited July 2017

    Jen, my original staging scans noted bone islands too. I can't remember how they were described but I know that it's just a random, non suspicious,bone growth thing and was not considered a met, it wasn't even really considered worthy of much discussion other than me asking and being told no big deal basically.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2017

    Melanie, I haven't talk to my MO yet. My results posted to my online account. I should be able to ask next week and my guess is they will say it's nothing to worry about and I've had them from the beginning with little to no change

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2017

    Thanks IIIimae. That's reassuring. I guess it also means I still have just the one met in my hip and that was noted as "interval near complete resolution of uptake" which I think sounds like very good news

  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 274
    edited July 2017

    "Z" I hope you are healing ok. My husband won't let me ride a bike, said if I fall I could end up with compression fractures or a broken hip due to all the bone mets. I still haven't found a sport so I walk and do a little work in our produce stand. I always tell my mom I feel like such a loser I worked hard and practically ran our greenhouse business, now I can only do the books. I feel the same way, part of my life has disappeared. My mom always tells me as long as I'm by her side she doesn't care what I do. My family has been so traumatized by this, they all do extra work making up for what I always did. Then I feel guilty. No wining with this monster disease for sure.

    Linda, today you gave me hope. 8 years!!! I told my husband. He was so happy for you too. I had a lictic lesion which my husband said was a hole that the cancer made in my left femur. So much pain but it got better with treatment. I hope radiation does the trick and makes you feel better!!😊 You are a true warrior fighting the monster!

    Babs good luck with your trial. I'm praying it works for you!! Think of you all the time.

    Thinking of Gracie and Patty. Haven't seen them on the threads.

    Wendy, you are strong!! Glad you found a sport you can have fun with. I wish I lived near some nice water, I would probably do the same thing. It keeps your muscles strong!!

    Jen, my husband is a radiologist and reads CT and everything else. He is an Attending Doc in a big hospital in Albany NY. Albany Med. I showed him your diagnosis from the CT. This is what he aid. "Bone Islands are benign areas of dense bone of no significance. If that is what they think you have he said lots of people have them. Youcan be born with them. Bone Islands are not cancer. ".

    I'm so lucky to have my husband, he can tell me everything I don't understand. If anyone has a question let me know, I can always ask him. Docs speak in a different language I swear!!

    Hope everyone has a good weekend. Hugs to all!!!😍

    Anita

  • Kaption
    Kaption Member Posts: 2,934
    edited July 2017

    Anita,

    I (we) totally understand your frustration. My exercise ability is down to SLOW walks. When I had my mbc dx I was walking 3 miles a day 4 times a week, doing yoga regularly and volunteering and generally very active. Now running the vacuum is a big deal. No way can I do anything that jars me. I'm inspired by our active mbc sisters, but cannot follow their footsteps. (Literally)

    I also sometimes wonder what I have to contribute. I just had another progression and will be changing from Xeloda to Abraxane. My friends and family rallied around and said essentially what your mom said. "You inspire us by being you and being here."

    Also found out I will lose my hair again and we have our 50th high school reunion in 2 months. Wig time. Uhg!


  • micmel
    micmel Member Posts: 10,055
    edited July 2017

    Kaption~ you'll rock whatever you have to rock, because yourebeautiful. I was on abraxane. For 9 cycles. It's an awesome tool , but eat slowly during the infusion, and drink. Ask the nurses to slow down the drip from thirty mins to 45. I didn't know any of this before hand and I was really hit hard. My hair did come out after the second infusion. Also watch your neuropathy, after 9 of them I was having trouble walking, the dayI was diagnosed I had ran 6 miles in one hour. I was a beast, not any more. I haven't even been able to run at all because of sickness and fatigue. Last month I was running and in one week logged 17 miles of jogging. Each month on this medication, I felt more and more burned out! It's depressing. I am going to be saying prayers. I Will also say abraxane as I went through got easier. Worked very well. Hugs and support ~M~

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2017

    Lindalou - good luck with those rads and congrats on 8 years!!!

    Babs - your MO is really looking out for you, good luck with scan tomorrow.

    Jen - Woohoo on your results!

    Kaption - sorry about damn progression and hoping Abraxane is kind to you.

    I don't have any energy either, days go by and have nothing to show for it. I'm recovering from several weeks of nausea and vomiting, probably due to rads to head and/or the cancer itself. We finally found a med to control the n/v so I'm back to eating a bit better. Thank goodness my sister is spending a lot of time with me since progression and Taxol. Next week is the end of 3 cycles and tests will follow.

  • ksmatthews
    ksmatthews Member Posts: 743
    edited July 2017

    Thank you all for the warm welcome! I am still having pain in my tailbone area, so I am really worried! I see my onc on Aug 3.

  • Kaption
    Kaption Member Posts: 2,934
    edited July 2017

    Thank you for the welcome and tips!!


  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    Can you all add Gracie to your prayers. I have begged her to check in here. I hope she does. Gracie!!!!!!

    She's in a dip. We need to pull her out.

    >Z<

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2017

    Hoping to hear from Gracie & Patty

    Hello ladies!!!!!!

    Bab

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