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Bone Mets Thread

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,320
    edited February 2013

    It is confusing if we think that all similar mets and stages of disease are treated the same. I am happy that our oncs look at us as individuals and base tx on that. Yes, there are commonalities and it's great to exchange notes but it's equally, if not more, important that we are treated with what will work best for our circumstances. Add to that the fact that medicine is part art and opinion and oncs may not always agree on which direction to take. Confusing? Yes, but, hopefully, working to our benefit.

    Caryn

  • macyhen111
    macyhen111 Member Posts: 402
    edited February 2013

    Amen to that Caryn!!

  • TXGigi
    TXGigi Member Posts: 39
    edited February 2013

    kaymic,

    Zometa is an infusion.  I take Xgeva which is a shot.

    Gigi

  • Naniam
    Naniam Member Posts: 586
    edited February 2013

    Kaymic thanks for the explanation on Aredia. Zometa is also an infusion but given over 20-30 minutes. 

    Macyhen, I had an MRI of my humerus/shouder area.  The radiation oncologist put the scan on a larger screen and pointed out the lesions and said they were in my bone marrow.  I was surprised by that and later talked to my medical oncologist.  You can have lesions in the bone marrow (center of the bone) and in the cortex (outside area of the bone). He indicated that most with bone mets have both and that most times they don't really know if the bone marrow is involved.   He indicated that it really doesn't matter as the treatment will still be the same. I only knew because the RO put up the scan and pointed the lesions out to me and made a random remark.  I am currently getting 25 radiation treatments.  My bone mets are extensive and rads has helped me.   As others have said, oncologist are as varied in their thoughts and treatments as our bone mets.   

  • kayrnic
    kayrnic Member Posts: 111
    edited February 2013

    Oops, sorry for the misinformation on Zometa. I was probably thinking of xgeva. I would still like to switch to zometa. Aredia takes 2 plus hours to infuse, so if zometa is more like 30 minutes......I will take it!

  • macyhen111
    macyhen111 Member Posts: 402
    edited February 2013

    Thank you for the info. Naniam

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,320
    edited February 2013

    And to add to the confusion, I have been getting Aredia infusions for over a year and it has barely taken one hour! Of course, I don't know if we get different dosages.

    Caryn

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited February 2013

    My mom's infusion took exactly 3 hours. It was her first one so I'm not sure if that had anything to do with it? I know that the nurse mentioned it can be hard on the kidneys so giving it slowly is supposed to be easier on them. (Her kidney function is fine)

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,320
    edited February 2013

    Funny, isn't it? Once the nurse gave me the infusion too quickly, 35 minutes, and I felt awful for about 48 hours afterwards. An hour is more my speed. With the time it takes to access my port, administer fluids, give the infusion and de-access the port, I think I'm there for about 90 minutes.

    Caryn

  • raro
    raro Member Posts: 78
    edited February 2013

    Hi, all,

    I haven't read all the previous posts, but I'm hoping for a bit of clarification from you ladies. I have extensive bone mets that were responding really well to Afinitor/Aromasin. Well, the party is over and the cancer is starting up again. I just had bone scan/CT this past week, and I haven't talked to my onc yet, but I have the results. The bone scan says no new lesions, but the CT had a few weird things.

    But what worries me is that despite the scans, I know things are growing because I'm having horrid, shock-like sensations down my right leg. There's some numbness that comes and goes, too, and the skin feels like it's being stretched. It hurts to touch anywhere on my right leg above my knee.

    What worries me is that this is likely further growth of the tumor in my sacrum. My issues are:


    - I've already had rads to that area. Although my RO said that they "occasionally" can do rads to the same area, has anyone actually had it twice to the same area?

    - I'm still working as a teacher. I do a LOT of walking. I can't imagine continuing if the pain gets much worse. I'm already on oxycontin 10 mg 3 times a day.

    - Is there anything else they can do for me (aside from switch me to chemo, which has never done much for me)?! Before they did rads the first time, the nerve-pinch type pain was so terrible that I was throwing up and went to the ER. I have never had that much pain and am scared to death that it's in my future.

    I just don't know how to go on. I know they always say "you don't die of bone mets," but they don't say that you could be wheelchair bound for the rest of your life, or that you will become so disabled you won't be able to do anything, let alone work...Anyone have surgery, and if so, does it work? I wouldn't even know what kind of surgery I could have, because the onc said the tumor is wrapped around bundles of nerves and is basically inoperable without risking paralysis.

    Any words of comfort here?! I am so desperate. Thanks.

  • RangerMom
    RangerMom Member Posts: 205
    edited February 2013

    Hi All, Just checking in again. Got MRI results and they show more mets all over the place! Yikes....the bone scan didn't show them. Can anyone tell me what this means "mottled marrow pattern suggestive of extensive metastatic disease to the bones." This was the 1st impression on my left hip MRI...what the heck is that...I picked up copies myself today, haven't heard from the onc yet.

    Godspeed,

    Just have to say, that with my new bone mets, walking downstairs can be tough but I love my house and its great comfort to me. I'm not ready to throw in the towel yet and move. I think I will know when the time is right. I am however, going to bed earlier, doing more "picnics" in bed, resting up, etc. but its my "nest." Hope that helps too. I'd ask her again what she wants and trust what she tells you. Best to you and your lovely wife

  • kayrnic
    kayrnic Member Posts: 111
    edited February 2013

    Raro......i know that each part of your body has a "lifetime limit" of radiation. If you haven't reached it in the area that is bothering you, you could have it twice. I haven't myself but have talked to others who have. Don't forget the possibility of switching to an AI or chemo that could shrink it down or knock it out. I teach too so I know what a difficult job it is when you're in pain. Hopefully others with more experience will be along soon.



    Rangermom.......not sure exactly what the report means.......other than progression. But don't panic and know that there are many many treatments to switch too. I will be thinking of you. Let us know what the onc says.

  • RangerMom
    RangerMom Member Posts: 205
    edited February 2013

    I'm wondering though, how do you know its progression, as these spot weren't on bone scans from June, Nov and even Feb recently. Do MRI's show more than a bone scan?

    Maybe these new areas were already there but the bone scans didn't show? I just had a bone scan the first of Feb and it didn't show the new areas? I've only been on Faslodex 3 months. Can progression happen quickly? Sorry I'm so full of questions and I guess the Onc will have answers I hope

  • kayrnic
    kayrnic Member Posts: 111
    edited February 2013

    That is a good question. I've had bone scans, but never had an MRI so I'm not sure how they compare. Calling for help from ladies who are imaging experts...........we need you!

  • Naniam
    Naniam Member Posts: 586
    edited February 2013

    RangerMom, a bone scan would not show if the bone marrow was involved or not.  Did you know that you had extensive bone mets by the bone scan and perhaps CT scans that you had?  Are these lesions in an area you knew you had bone mets?   If so,  I read the MRI report as showing the known lesions/bone mets is in the bone marrow - that doesn't mean that it is new lesions to me just that they are in the bone marrow.  Being in the bone marrow is not treated any differently than just knowing you have bone mets - per my oncologist.  I knew from the CT scans that I had mets in my humerus and bones in the shoulder.  An MRI scan showed the same lesions but they were located in the bone marrow.  Hope this helps. 

    Raro, I am having some issues with my fingers on my right hand being numb and I am waking in significant pain and the Morphine doesn't give immediate relief of this pain.  We are thinking that I have a vertebra that is pressing on a nerve in my neck.  If so, they can give me some radiation for relief.  Sounds as if you are having a nerve pinched in your back and that is causing the pain.   I have had radiowave nerve obliteration done that has given me relief but the facet joint has to be involved to have that done.  I had 10 radiation treatments to my left thigh and ischium (bone we sit on) a year ago and just finished 10 more.  I am in the process of having 25 to the right side, same areas.   As far as the pain meds, I am up to 60 mgs. of Morhpine 3 times a day and have 15 mg. Morphine (faster action relief) to use between doses.  I am also on Neurontin.  That helps with nerve pain and you might want to ask them about adding the Neurontin.  I take two 300 mgs. tablets at bedtime - plus take it with my two daytime doses of Morphine.  It makes you sleepy so that is why you might want to take that one at night.  Believe me, when you need the increase in pain meds, your body adjust and handles it.  I think we are going to have to increase my 60 mg. Morphine - it just isn't holding me. I just know that my RO has said that they can do radiation to an area to give me relief - he hasn't mentioned that I will reach a limit but would think at some point you would to a certain area. 

    None of this is fun and being on that darn radiation table for 3 weeks is killing my low back - it has really set it off and th the radiation making the bones I sit on sore, it adds us to a pretty miserable back.  Between the neck/shoulder pain and low back, I'm pretty miserable.   Feel like I am taking the breakthrough Morphine like candy. 

    I am not trying to be a know it all or smarty pants - just sharing things that I have had happen and been told, hoping it helps someone else.

  • HLB
    HLB Member Posts: 740
    edited February 2013

    I have often wondered myself if I don't have mets that I don't even know about since I only had a bone scan and a ct to go with it. No mri or pet. I wonder what those two tests would show since it seems like they are both pretty sensitive.

  • j1e1n1a
    j1e1n1a Member Posts: 84
    edited February 2013

    My onc ordered Pet scan Dec 2012 and Breast Mri before they did anything else. Pet scan came back showing the mass in my left breast only..no lymph nodes,but a destructive lesion of left sacral (pelvis)almost 5 cm, a destructive lesion within my T9~ 3cm as well as a bone lesion to left posterior 7th and anterior 3rd rib.



    I am strange in that i have had little pain as of yet.

    However on or around Jan 8th i was in a lot of pain...onc ordered MRI-thoracic spine,lumbar spine,and brain.

    MRI- thoracic showed a fracture in my T9 w abnormal adema as well as signal changes in the T5 vertibre show possibility of 2nd spine lesion...



    MRI-lumbar spine showed abnormal signal intensity on left side of S1 vertibral body. Also shows abnormal signal intensity within left sacral ala(pelvis).



    My onc went over the scans with me on computer. Pet scan was glowing everywhere that showed lesions. MRI appears to be more exact in my case as well as detailed showing fractures.



    I have not had a bone scan yet...just started chemo and rads here in Jan 2013. Sorry don't have more info...maybe my experience helps?

  • HLB
    HLB Member Posts: 740
    edited February 2013

    How bad is it to not take calcium with Xgeva? I've been blowing it off for a week now due to constipation. I will start it up again today. Just needed time to get things resolved. Really growing weary of having to be on top of that problem all the time. Don't want to start a thing about constipation. Just wondering about the calcium. I've read a few things that said calcium is not that great to take and that magnesium is the important thing. Of course taking the xgeva totally changes that.

  • heidihill
    heidihill Member Posts: 1,858
    edited February 2013

    I got my calcium through foods and supplemented with magnesium only when I was having muscle spasms. I don't get stomach problems this way.

  • Naniam
    Naniam Member Posts: 586
    edited February 2013

    I think measuring my mets has been more accuate with CT scans, bone scan, and MRI's.  The way the PET was explained to me will only pick up mets if they are a certain size.  Was told that men with prostate cancer that has bone mets - that a PET scan will rarely pick up the bone mets as they are very small (he was saying that breast cancer mets works much like prostate cancer bone mets)

    Do most of us normally get CT scans and a bone scan as our normal follow up scans? MRI's if we have specific problems?  My RO prefers PET scans -my medical oncologist does not order them.

    I'm on Zometa and wasn't very faithful at taking the calcium but now after being put on Aromasin until I recover from surgery and radiation treatments, I've been taking it.  I don't think the Miralax they suggest helps much - anyone have other suggestions?  THen toss in all the pain meds lately. 

      

  • kayrnic
    kayrnic Member Posts: 111
    edited February 2013

    I take stool softeners and pro-biotics to keep things moving. Miralax doesn't do much for me.

    My oncologist has only ever ordered PET/CT's. I guess it must be an individual provider's preference.

  • SonnyB
    SonnyB Member Posts: 33
    edited February 2013

    HLB, My onc asks me every time I get my Xgeva shot if I am taking calcium and Vit D.  She seems to think that it is important.  I don't know the science behind this.

    I get scans every three months rotating between a bone scan and a PET or CT scan.  The PET or CT every six months is to make sure the mets have moved beyond the bone.  RangerMom I would definitely like to know if there's a possibility bone scans don't pick up progression.  In my case "routine MRIs" would be difficult for as I would need 5-6 to cover all bones that have mets.  Therefore I only get them if I have an issue in a specific area.

  • HLB
    HLB Member Posts: 740
    edited February 2013

    Yeah they ask me everytime too, and give me the motherly look, like "you better be taking it"!

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2013

    Hi Ladies ... regarding the calcium and vit d intake with Xgeva ... what I was told is this is critical.  Reason being the Xgeva can cause hypocalcemia, low calcium, which can be serious and even deadly.  My onc's NP told me one case they had the pt had NO symptoms when hypocalcemic and ended up in the hospital for a week getting IV calcium.  Taking calcium with magnesium usually keeps the bowels moving, a 2:1 ratio.  If that doesn't work, I'd incr. the magnesium some, but be careful, too much can cause diarrhea!!  Frown

    Regarding the scans ... I get all of them, bone, Pet, CT and occassional MRi.  The bone is usually once or twice a year; the Pet and/or CT (there's a Pet/CT too) every 3-4 months.  I recently went for a second opinion, and to my surprise, the onc said he doesn't even do bone scans because they also show healing as well as mets and you can't tell the difference!!  More confusion!  Also, I read an article recently, I believe it's on this website under news that compared diagnosic exams and they felt the Pet/CT was the best for accurate staging.  Who the heck knows ...

    All so confusing.  My scans almost ALWAYS show progression and improvement on the same scan!  So, then, what does one do?  I'm never comfortable knowing if a treatment is working or not, for sure.

  • Naniam
    Naniam Member Posts: 586
    edited February 2013

    They told me to make sure I got the Calcium that had the Vitamin D3 in it.  Supposed to help with the absorption of the Calcium is what the pharmacist told me.  I don't know.

    I think we can have progression that the bone scans don't pick up if it is small areas. 

    Kay, I think it is what individual oncologist prefer when they order scans.  A PET scan has never been mention at all by my medical oncologist.  In Nov. lost my oncologist of 7 years, have only seen the new one 3 times but the scans she has ordered in mid-Feb. is Bone and CT Scans.  I've noticed too that oncologist seem to have a specific order in the drugs they want us to try.

    Can anyone help me understand my recent PET scan results???  The radiation oncologist told me on Monday that there was no change in my scan from a year ago to the recent one.   Ok, but then why do I have a rod in my left femur now and they were concerned that I was going to have to have one placed in my right femur and is the reason I am getting 25 radiation treatments.  How could there not have been a change?  Then today I took him a copy of an MRI I had of my total spine in October and he made the remark that "well your PET showed no active cancer"?? WTH - would it not be active if I'm having to have radiation? So is he saying - "your stable"???  But how could there not have been a change between the PET a year ago and the one last week, I truly do not understand that remark and he was so excited about it.

    I travel an hour to a comprehensive medical center for my treatment and scans.  When they do the CT, Bone and when needed MRI scans, I don't have a problem understanding the reports or how they determine my treatment plan.  This is one of the reasons I left town, the radiologist there go into much more detail in their reports.  I have a copy of the PET to take to the medical oncologist.  I am tired, grumpy and am anxious to see what all of you think. 

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited February 2013

    I take stool softeners every day, diverticulitis!!

    Sand

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,320
    edited February 2013

    I have never had a bone scan, only PET scans.

    Naniam, you mentioned that you were told that PET's don't pick up,small bone mets.How small is small? I ask because a PET is what picked up my bone met.

    Hope you continue to feel better!

    Caryn

  • Naniam
    Naniam Member Posts: 586
    edited February 2013

    Caryn, he didn't give me a size in diameter to be able to answer. It seems somewhere along the way I have read something similar about PET scans. 

    I  know that with my CT's, they have seemed to pick up my bone mets regardless of size and many of them are smaller lesions. He had my scan on the screen going over it with me and saying that the yellow highlights were the location of my mets;(other than heart, kidney and bladder that lights up yellow) that small lesions would not be picked up. He then stated just like bone mets in prostate patients are very small and even though we know they have bone mets, when sent for a PET they would not be picked up.  However, that PET scan though did pick up small area of mets in my hip that we treated with 10 radiation treatments.  In seeing and knowing that, they would have to be very small lesions.   

    Any thoughts on what he was saying about my latest PET?   Always see a RO on Monday when getting treatments.  I will ask questions for clarity.  I know I am tired and my brain may be a bit slower but didn't think I am that dense that I can't "ge it".  

  • HLB
    HLB Member Posts: 740
    edited February 2013

    Sorry that doesn't make sense to me either. I don't have any experience with reading them though.

    Thanks for that info about the calcium. I did look it up and when I read about how serious the hypocalcemia was I stopped in the middle of eating to take a calcium!

  • krayzwolf66
    krayzwolf66 Member Posts: 19
    edited February 2013

    Hey to all of my sister soldiers,its good to read up on y'all and feel the high spirits you have,

    is good also.

    well I've since gone thru surgery on Jan. 23. It included a lumpectomy with axillary removal-aka- partial mastectomy of left breast and nodes. Surgery lastedover three hours and went smooth.

    They said I have extra lumpy breasts so she removed everything over lumpy, what was left of the once 7x 9 cm tumor had no living c cells in it, the margins were negative as were the lymph nodes. Also they did the MRI guided wire biopsy of second smaller lump near chest wall of same left breast and that came back negative.

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