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Bone Mets Thread

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Comments

  • GraceDD
    GraceDD Member Posts: 32
    edited June 2018

    Hi ThereIsHope & TarheelMichelle (from March postings), and Everyone,

    I finally have time to weigh in : ) After 1 year on Letrozole (AI) and monthly Zometa, my recent scan showed ALL bone mets "sclerotic (building density and strength; not spreading!)". This all started 2 years ago, with a "sneeze = Th3 bone shatter"!

    I supplement with daily Calcium Bisglycinate 1,000; Vit D3 10,000 iu; and veggie juices (with chard for calcium). I chose not to take other meds, though MO offered - They all offered more of the side effects I already had! Cancer marker "in normal range" for 4 months.

    I do not notice pain. I do walk frequently, or do "Silver Sneakers" exercise class. I actually ran in the beach surf, chasing my grand-nephew, for 1/2 hour! My DH was amazed!

    To keep past fatigue and depression at bay, I take B-vitamins "5HTP" upon waking, with water; and "Deproloft-HF?" after lunch to avoid sleepiness. Also 100mg CoQ10 with breakfast and dinner. Daily fresh air required!

    Zometa will soon be reduced from monthly to every 6-weeks. I'll keep on Letrozole as long as it works! I like it!

    Thanks everyone for posts on CBD for pain, for my future reference.

    Love & Hugs & Cheers to All of you! Our bodies are each unique and precious, May we all find the MO Team to support our well-being! -- Diane

  • GraceDD
    GraceDD Member Posts: 32
    edited June 2018

    Chrissy,

    I also had chest pressure and SOB (shortness of breath, early on, from 3 sternal lymph nodules, now 1/2 size and no problem); until starting Letrozole! Sleeping with open window, even in winter, really helped! I slept until "done", in dark room. My juicing protocol was purging toxins, but it took a long while!

    I found sleeping propped on pillows helped. I could only sleep on right side, to avoid continuous coughing.

    Today (1-year later), I have a teeny throat clearing, but don't notice any of the chest pressure at all. Daily walking, with a hill for cardio, kept my lungs expanding, to circulate oxygen.

    I'm rooting for you! Hang in there! Hugs & Love, Diane


  • Lynne
    Lynne Member Posts: 368
    edited June 2018

    Diana-Good to know that you had that pain too. Today it hasn't bothered me at all. It was strange that I had the pain so many days after the Zometa though.

    Minnie-I have had 5 compression fractures, and have lost an inch in height. I've had 4 kyphoplasties (current fracture is too high up and can't be repaired). I do have pain from the latest fracture and muscle pain in my back off and on. I was in pain when the fractures happened (that's how I found out the cancer was back, after 7 years), once I healed from the kyphoplasties though, my pain was gone. I also have rib,hip, and pelvis pain, where there are many mets.

    Good luck!

    Lynne

  • Dianarose
    Dianarose Member Posts: 1,951
    edited June 2018

    Lynne- when I used to get that pain it would stop me in my tracks. A very sharp stabbing pain. Now that I’m off Zometa I don’t get them. I too have mets in my spine. Also in my chest, pelvic and skull. I’ve had some headaches lately that are scary. He’ll, it’s all scary. Some days I really can’t believe this is happening.

  • Lynne
    Lynne Member Posts: 368
    edited June 2018

    Diana-Yup, sounds like what I have. I'm having some speaking issues (can't find the right word, slurring sometimes) and twitching fingers and feet. I'm going to bring it up when I have my appointment next Fri. I haven't had an MRI of brain yet, but I'm thinking it's probably time. No headaches or blurred vision yet. Yes it's all scary, but we just have to muddle through I guess. I have bone mets in my spine, skull, ribs, pelvis, and hips too, as well in my lungs and liver. One day at a time!

    Lynne

  • Leapfrog
    Leapfrog Member Posts: 406
    edited June 2018

    I've been having a break from discussion for a couple of weeks and I can see a lot has happened. So nice to see Kathryn and Z.....big hugs to you, Z, and thoughts and prayers on your treatment.

    I can't remember all the names I wanted to reply to but I want to mention that I've had Xgeva every month for 20 months and have no side effects from it.

    Re loss of height. I'm fortunate that I've only lost about half an inch due to compression fractures and even more fortunate that they haven't caused nerve impingement.

    It was so good to see you posting Patty!

    As for me, I've been in a worsened state of pain, I have stress fractures in my 7th and 12th ribs again (which is a lot better than before treatment when I had them in every rib), I have some stress fractures in my spine again and my tumour marker is in a very slow, gradual upward trajectory. At this stage it's wait and see as it tracks up and down then up again but each time it tracks up it's higher than previously. It was tracking between 420 and 480 then jumped to 520 and hopped up and down between 520 and 580. It did a largish hop last cycle, to 640 and this cycle it went down to 600 to my relief.

  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2018

    Lynne, my RO thinks EVERY stage IV patient should have a brain MRI, but my provider doesn't do them, unfortunately, until MAJOR symptoms start showing up. I had vision along with gray/black spots in my vision, ear whooshing, headaches, dizziness and numbness in my limbs.

    The MRI showed more than 20 brain mets. I've had whole brain radiation last Sept and am doing a bit better, but now I'm having a bit of trouble with remembering things and speaking with good sentence structure.

    L


  • Leapfrog
    Leapfrog Member Posts: 406
    edited June 2018

    Lita.....hugs. Lots and lots of hugs Hug

  • Minnie72
    Minnie72 Member Posts: 46
    edited June 2018
    Thank you Miaomix! I’m ok during the day at work but once I get ready to rest and sleep that’s when I would feel all the pain. Almost every night now.
  • Minnie72
    Minnie72 Member Posts: 46
    edited June 2018

    thanks Lynne!!! I’m getting mine done next week. I wanted to get a second opinion but thought I’d as here first. Sure glad I did!

  • Minnie72
    Minnie72 Member Posts: 46
    edited June 2018
    Lita and leapfrog, wishing you comfort and relief and lots of hugs too!
  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Wise RO lita. After my experience I would fake some neurological symptoms to get a brain MRI if I was getting resistance from my MO. As it was I had some facial numbness but in hindsight it was unlikely related to the lesion they found.

    Z

  • bigbhome
    bigbhome Member Posts: 721
    edited June 2018

    I agree with Z! My insurance will not approve them just to look, but if I State having multiple headaches and vision issues they will approve immediately. I have had those symptoms before the headaches, the twitching of hands and feet, the loss of words, and the slurring sometimes Lynne. I had a brain MRI a few months ago and they found nothing. I just wanted to offer you some reassurance on that. Sometimes, we have these strange symptoms that come from who knows what, but there's nothing causing at the can be found medically.

    Hugs and prayers,

    Claudia



  • illimae
    illimae Member Posts: 5,735
    edited June 2018

    I had a brain MRI as part of my initial staging scans, not sure if MDA does that for all stage IVers or if it’s because I’m HER2+. It was clear but the mets were suspected to have migrated up there early on near the start of chemo. I agree, brain MRI’s should be part of the process for us.

  • Vevs
    Vevs Member Posts: 81
    edited June 2018

    Thank you Animal Crackers and everyone else who commented on the loss of stature. Would a compression fracture show on ct scan? I don’t have pet or bone scans routinely

  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2018

    BigB....my RO told me that not all brain lesions are detectable on an MRI. The REALLY TINY ones may not even show up, so who knows about your symptoms? If any of those symptoms start to come back/accelerate, I wouldn't waste any time getting them checked out. And an MRI is only as good as the radiologist who is going thru it with a fine tooth comb and interpreting it.

    L


  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited June 2018

    Leapfrog, hope your pain level gets better! Two ribs! Can’t even imagine! Rising tm’s Worry all of us! Hoping and praying yours are just a weird thing that happens...I hear of that a lot and they don’t really mean anything! Hoping that’s the case for you!!!

    I totally agree with Z. Unfortunately the things we learn about brain mri’s are from the view of the rear view mirror! But would also fake something just to get an mri done.

    Lita, I’m glad your wbr helped out! I think the thing I worry about most is lasting effects from brain radiation.


  • Lynne
    Lynne Member Posts: 368
    edited June 2018

    Thanks Lita (sorry they waited so long for that MRI), Bigbhome, and Mae. I'm going to ask her about it on Fri. I had mentioned some of these issues (with a headache, she decided it was a sinus headache, I never get any other kind), and she offered me an brain MRI then. I didn't think I needed it. Now I think it's just making me a little crazy (or I'm making myself crazy!), I just think I should get it over with. I am sick of sounding like an idiot when I talk. Looking for the word, slurring, etc.

    Minnie-Good luck!

    Vevs-My first compression fracture, I was having back pain. They took an x-ray and then sent me for an MRI (how I found out that the cancer had returned in 2012, after a stage 1 diagnosis in 2005). The other 4 were found on my bone scan, and I was then sent for MRIs. I don't think they can see them on ct scans. They do mention my kyphoplasties on the ct scans though. Not sure.

    Leapfrog-I hope your pain is getting better. I broke ribs twice, after a prolonged period of coughing, this winter. It took about a month for the pain to go away. Hugs!

    Lynne

  • Maire67
    Maire67 Member Posts: 418
    edited June 2018
    I just had brain MRI. AI had a fall. Actually I tripped because I was distracted and landed on my nose(it bled and needed my nurse used some glue the next day but I felt fine) My mo saw me the next week and said brain MRI now although I kept saying it was my own fault. I wasn’t dizzy. Looking at all your troubles with insurance I’m glad she insisted because now I have a baseline. With Her+ I know that’s likely the next spot to pop up.
    Leapfrog, good to see you post. I hope you get some pain relief. Maire
  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Lita -

    Breast cancer is known for metastasizing to the brain as single cells that swim in the fluid and are invisible in MRIs. This is leptomeningeal disease. They test for leptomeningeal disease with a spinal tap . --- you can find the cancer in the spinal fluid if it is present. There are other biomarkers they can evaluate that suggest swimming cancer. So a spinal tap and an MRI is a good idea. Spinal taps sound a lot worse than they are so don't hesitate to get one if it comes up.

    >Z<

  • santamonicasurvivor
    santamonicasurvivor Member Posts: 2
    edited June 2018

    Hello,

    I'm writing on behalf of my mother, 67 with brain mets (2.2017 - no active tumor) and now bone mets (5.2018 - dozens of sites).

    First, thank you to everyone who posts here, the site has been a great resource for us as we navigate all these cancer challenges!

    She's just finished a week on Olaparib, it was too toxic for her, she couldn't get out of bed for a week due to nausea. We were very much hoping she'd tolerate it better :(

    She's BRCA1 positive + TNBC and I'm wondering what options she may have left. At this point she feels very strongly that she does not want to have another round of nausea like last week. There are too many sites of bone mets to do radiation treatment. And the cancer has not spread to any organs, which rules out trials (at least according to our Drs - Heather McArthur, Jethro Hu and Cathie Chung, all at Cedars in LA).

    My feeling is that it's time for hospice, but I know that so many of you on here have more knowledge about treatment options than I do, so I wanted to reach out to see if any of you had thoughts.

    Many thanks!

    -Chris


    I'm still figuring out how to add all the treatment / diagnosis info to the sig like so many other people have done, but for now, here's the background that I know off hand:


    • Dx 1992, Breast malignancy, left
    • Radiation Therapy - 1992
    • Chemotherapy - 1992
    • BRCA1 positive // TNBC
    • Dx 5.2014, Breast malignancy, left
    • Surgery 6.2014 - double mastectomoy + sentinel node biopsy
    • Chemo 6.2014 - not sure which agents...
    • Dx 2.2017 - brain mets. inoperable/no biopsy
    • Radiation Therapy - stereotactic radiation treatment - brain (1)
    • Dx 8.2017 radiation necrosis - partial paralysis on right side (total paralysis on rt by 02.2018), cognitive decline.
    • Alternative therapy - hyperbaric chamber (no clear positive impact)
    • Rx therapy - Trental + Vitamin E (no clear positive impact)
    • Chemotherapy - Avastin (3x) (no clear positive impact)
    • Dx 5.2018 - bone mets (dozens of sites)
    • Chemotherapy 6.2018 - Olaparib (600mg/day - lasted only one week due to intense side-effects (nausea - tried both Zofran and Compezine, neither helped enough))
  • nowaldron
    nowaldron Member Posts: 40
    edited June 2018

    Hi Everyone,

    I can't find the original thread, but just thought I would weigh in on the brain MRI. I had one in June of 2016 four months after my diagnosis as I had two bone mets on my skull. That MRI was good as the lesions had decreased in size. This past April I was having some issues around "word-finding," stuttering, and some dizziness. It was unusual for me, so I was concerned. I saw my onc just a few days later and she immediately ordered an MRI for me the next day! Everything turned out to be fine, so it did ease my mind. I am still having some word-finding issues and stuttering, but I guess I just have to live with it. I am a college professor and never had any trouble finding words LOL, but now I take a little more time and speak more deliberately so as to not stutter. I am fortunate that my onc is very responsive to my concerns and my health insurance company has never questioned any test or treatment she has recommended. 

    Good health to all!

    Hugs, Nancy


  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2018

    Chris,

    Your mom has to make the decision about hospice herself. Only she knows how much more she can tolerate and how much farther she wants to go.

    My MO told me that I'm the captain of the ship. She can't force me to take any Tx, and that she will honor my wishes when I say it's time to stop all chemo and move on to hospice. Quality of life is very important. I have more than 20 brain lesions/tumors. I can barely walk b'cuz I have multiple bone mets in my spine, pelvis, sacrum. hips, femur, ribs, scapula, etc. I have organ mets, too. I have to wear depends because I have lost anal/bowel control, but I'm not yet ready to throw in the towel.

    Does you mom have a good PALLIATIVE CARE person on board to help with those horrible side effects? I have MAJOR gastro/intestinal issues, thanks to all the chemo cycles, but my Pal Care dr is helping me with the nausea and dyspepsia, and most importantly, the explosive diarrhea crap....some days I have to wear adult plastic pants over the depends to keep things from oozing out. Sorry, I know, TMI, but that's my life.

    Sometimes, we go thru rough patches, and if our onco team can get us back on track with the rights meds and palliative care, we can move on, making the best of it.

    I wish you and your mom all the best, and I hope she can get her nausea under control.

    L


  • mike3121
    mike3121 Member Posts: 280
    edited June 2018

    Is that new "Right to Try" in effect yet. My wife's oncologist said, as a last resort, (not there yet) he'd recommend a Foundation 1 or Create X testing.

  • Jaylea
    Jaylea Member Posts: 440
    edited June 2018

    Chris, firstly, what a blessing to your mom you are. Hers is an unusual path, as I don't usually read of brain as the first met site. I'm not familiar with Olarparbib, but it sounds like it definitely wasn't compatible with your moms physiology. As a layperson, it seems like there would be other options to try before hospice. You've got a great partner in Cedars, what are they saying? There are many folks here with brain mets that are beating all kinds of odds. Lita makes a great point about palliative care. If you can get the immediate issue under control, whether it be nausea, pain, incontinence, etc., and get to stability, it's a much better place from which to make decisions. Sending blessings to you and your family.

  • cure-ious
    cure-ious Member Posts: 2,891
    edited June 2018

    Chris-At the beginning it is common to want to give up, and feel overwhelmed. But it truly is possible for those brain mets and bone mets to get stopped in their tracks. Perhaps immunotherapy plus a dose reduction of Olaparib? Not sure if that is possible outside of a trial, but when she gets to trials, CDK7 inhibitors in combination with immunotherapy also look promising. And of course there are many very powerful anti-nausea meds out there, she should be able to get help in that respect pretty easily.

  • santamonicasurvivor
    santamonicasurvivor Member Posts: 2
    edited June 2018

    Thank you for the responses.

    All other ideas and suggestions for potential courses of treatment are welcome!

    @Cure-ious - immunotherapy isn't something that has been discussed in any detail, primarily bcs I think it's only available via trials (which my mother is not eligible for ATM). But the CDK7 + immuno combo is something I'll discuss with her oncologists. Thanks for mentioning that :)

    re palliative/supportive care: we have been working with Dr. Steven Oppenheim at Cedars for the last 6 weeks. Pain management is in a good place. Nauseousness has been more of a challenge... w/ respect to the comment by @Cure-ious that there are "many very powerful anti-nausea meds out there, she should be able to get help in that respect pretty easily" - easy wasn't a word that came to mind during the period where I was working with every doctor on her team to deal with the nausea. My mother was prescribed zofran, compazine and ativan. And CBD was recommended too. We tried all four and none made a meaningful difference. At that point multiple doctors advised that she stop taking Olaparib. Which we did. and the nausea went away. But we'd still like to find

    @Lita57 re hospice care: First, I would love to find a treatment option that she can tolerate and that will beat back the cancer. We've been told that there are NO known approaches (not including trials) that would eliminate the cancer. If that's correct, then we'd love an option that could stop the growth - that's what we had hoped for w/ Olaparib...

    Back to hospice care, yes, I certainly hope my mother will be able to play the primary role in deciding the course of her care. Hope and reality don't always align the way I'd like and the reality is that her cognitive capacity has degraded significantly in the last 18mos. She has difficulty weighing the various options effectively and she has formally handed off responsibility for medical decisions to me via medical power of attorney. I sincerely wish that wasn't the case. She still goes to all of the doctor visits. and we still discuss the options in depth, usually with at least one of her siblings, and all make a decision together (it's been very easy to find consensus), but most of the weight of these decisions has shifted off her shoulders, to mine.

    Thank you again for all the thoughts and suggestions and well wishes :)


  • mediclisa
    mediclisa Member Posts: 100
    edited June 2018

    Chris, I started Abraxane/Avastin in January and my MD added Olaparib in March. I also had horrible nausea with all the prescribed anti-nausea drugs. On a blog with women on Olaparib, I found that most of them stated it takes about 8 weeks for the nausea to subside. It took me 7 weeks, I was constantly on the BRAT diet. The nausea has subsided and my scans last week showed no new progression. I can tell you it was a rough road those 7 weeks including the side effects from the Abraxane/Avastin. I am now on Avastin/3weeks, Olaparib 2x daily. My MD stopped the 3 week Abraxane to every 2 months to hopefully stop the neuropathy. I am hoping she can get back on it and try to get through it. Maybe it won’t take her 8 weeks. Not sure which drug helped me, which sucks, but something from the 3 has worked for now. Just need to find the right drug. I wish her luck and to hang in there. Lisa

  • bigpeaches
    bigpeaches Member Posts: 238
    edited June 2018

    I'm back among the living! I've been in the hospital for the last week, they never really did give me a diagnosis. One doc said I had pnumonia, another doctor told me they just tell you that when they can't figure out whats going on. ha! It started last friday night with a fever so I called my onc, and he said to get to the ER and by the time I got into a room I was so sick they had to sedate me. If I woke up even the tiniest bit I was throwing up, it was awful! After an entire week and every test under the sun, I still had no diagnosis and they sent me home.

    Just in time for chemo tomorrow. *sigh* My husband doesn't want me to go, but they did my labs and doctor seems to think we're ok to go. Pray this one doesn't land me back in the hospital!

  • cure-ious
    cure-ious Member Posts: 2,891
    edited June 2018

    BigPeaches, welcome back!! I think an ER will always err on the side of caution for stage IV, and assuming they put in an IV that will have fully hydrated you, which is a good state to be in when the chemo hits, so if you move forward, just keep up pushing the liquids to detox...

    MedicLisa, good to hear from you again too!!

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