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Bone Mets Thread

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  • happygran
    happygran Member Posts: 18
    edited December 2014

    Thank you so much dib823.............

  • GG27
    GG27 Member Posts: 1,308
    edited December 2014

    Thanks everyone. Though my back & rib are a bit sore, it's really the gall bladder that is causing the issue right now. Scared to eat anything as it just goes right through me (TMI, I know, but if I can't say it here, then where?? :) I am going to call the surgeon today to see if he will see me about this. I know on the CT scan on the 15th it should say the condition of the gall stones. In the last 8 or 9 days it has become increasingly bad. If anyone has any suggestions for things I can eat, I would love to hear them. I usually eat so healthily, lots of fruits & veg, but right now that does not sit well at all. -Dee

  • ninetwelve
    ninetwelve Member Posts: 328
    edited December 2014

    So sorry, Dee. How miserable.

    I just got my cat back from the vet for his horrific diarrhea. The vets suggested pumpkin mixed with his regular food. It worked almost immediately. (Though his issue was not gall bladder, it was hyperthyroid. Also, he's a cat and not a human, so there is that.)

    Maybe pumpkin and yogurt or rice. They told me bland foods are best when you're "on the run."

  • annieoakley
    annieoakley Member Posts: 653
    edited December 2014

    Hello everyone,

    NineTwelve, so happy for your good news! You must be so relieved :). In answer to your question the Cyberknife treatment didn't hurt and I felt fine last night but maybe after a few more treatments I'll have a flare of pain. You can take an ativan to relax yourself if you like but if you do happen to move the computer that controls the robotic arm takes that into account and re-calculates when and where to send the radiation beam, it's quite amazing technology. 

    I'm just getting ready to leave for my Stereotactic treatment to my sternum and arm. Spending the night at a friend's who lives closer to the Cancer Center as I have a Cyberknife treatment again tomorrow morning. This is tiring. 

    Thinking of all of you! Hugs, Annie



  • exbrnxgrl
    exbrnxgrl Member Posts: 5,297
    edited December 2014

    thinking happy thought for those with good scans, and easy rads (laying still for so long must be tough).

    Hope we all have an easy time easing into the holiday seasoning.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited December 2014

    Happy for the good news, Nine! And good luck with the rads, Annie.

    GG, when I first had a gall bladder flare in my 20s and no insurance (so no surgery or real tests) they put me on a diet of baked turkey breast (no fat added) and boiled green beans. No foods that produce gas (like cabbage). Said to try it for a week and if it worked (i.e., eased pain) then it was gall bladder. And it did work. Boring diet, but it did help. Good luck with it all; mine is sore as heck right now too for whatever reason.

    Hugs to all,

    Terre

  • GG27
    GG27 Member Posts: 1,308
    edited December 2014

    Thanks Terre & 9-12 (hope you don't mind if I numeralize your name) I have cut out most veg & cut out All Bran, which I usually eat every morning. I haven't been able to get a hold of surgeon's office yet. But I will try pumpkin & skinless poultry. Sorry but green beans are just vile unless they are dressed with olive oil & roasted. :) So far today, I am fine *fingers crossed* My friend who is going through chemo & having similar issues also recommended peas? We'll see .... -Dee


  • ninetwelve
    ninetwelve Member Posts: 328
    edited December 2014

    Ooh, yes. Vegetarian split pea soup is so nice at this time of year. And filling, too. (i think it's cute to be be 9/12. Or you can also call me Eve, which is my name in the real world).

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited December 2014

    Dee, when my gall bladder acted up, the only thing I could eat was bland, unseasoned food. Fortunately, they took mine out.

    Annie, I'm so glad the cyberknife procedure went well, but wow. Daily radiation must be exhausting. How do people keep from being run down by it? Do they recommend any supplements? I've never had radiation, so I have no idea (except for what I read here) how it effects you.

    Terre --- I'm thinking of you down there. Perhaps Spring will bring more opportunities for people to get to know your wonderful self.

    I went with the chocolate, but the candle sounds nice. Mom thinks the chocolates are a boring gift. Hmph! I could always eat the chocolate. Russell Stover. Yum.

    Actually, not so yum. I'm not feeling very well today. I don't know why. I know I got very depressed last night and went to bed early. I slept late. I watched a sad movie. (I can't watch sad movies with my mother. It has to be comedy. Blah!) Then came upstairs to clean the bird cage. Then needed to lie down. Mom came up to see if I was OK. Told her I was just depressed. She commented about me coughing a lot and I had been so cold. Then I thought that perhaps I don't feel well. My stomach feels upset and my temperature regulation is all off. However, my depression can get bad enough to upset my stomach, and the temperature thing could be the heat going on and shutting off. It's a cold, damp, icky day here. So, there you have it. I don't even know how my own body feels. Brilliant. LOL

    Sorry to anyone I missed. My best wishes go out to you all.

  • kwagart
    kwagart Member Posts: 24
    edited December 2014

    I Have noticed lots of talk about gallbladder problems. .. I also am struggling with stones, I think they are making my stomach feel very acidic.

    Are Gall stones and BC somehow linked? I know bone mets and calcium have some cause and effect. I had an attack pre-mets possibly pre-bc (not sure tho, wondering if I have had it for years, stupid ilc).

    Also wondering if stones make you feel almost like your liver is throbbing ? Mine does sometimes, and of course I think liver mets, however it did the same thing when I was having a/c and taxol and I just had my first taxotere perjeta herceptin treatment.

    Anyway, just wondering if anyone has had similar issues or knows more about the gallbladder.

    Dunesleeper sorry you are depressed:( it can be so hard to figure out where our discomfort stems from at times! (lots

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited December 2014

    Kwagart - I was wondering the same thing - seems like a lot of us have gall bladder issues. And to answer your question - yes, it can make your liver hurt. Mine hurts and of course, I'm freaked out about liver mets. Every ache and pain adds to my legion of neuroses.

    Thanks for the sweet words, Dune. I'm sorry you're depressed. My temperature regulator is chronically screwed up...feels like my thermostat is broken. Crap weather doesn't help either. Hope you feel less depressed soon. Your posts always make me smile.

    Annie - just make sure you make time for lots of sleep. It makes you really tired. I had 38 treatments for Stage I and 5 for Stage IV and I think the ones for Stage IV made me more tired than the Stage I rads did. Not that I wasn't tired as tired could be during the Stage I rads!

    GG - hope the gall bladder pain gets sorted soon. I'm guessing peas would possibly work - basically stuff that doesn't produce gas or acid.

    Hugs to all,

    Terre

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited December 2014


    Hi all,

    Annie, yes rads are tiring and add the commuting, the traffic the stress and WOW what a cocktail!  Good thing you're staying at a friend's place tonight closer to the cancer Center.  Hope you have a nice evening and a good night's rest.

    Dune, sorry you're not feeling well.  My internal thermostat today is out of whack - shivering all day, but it was -21 celcius up here this morning.  I've been having a dry cough for a couple of months - last lung xray was clear.  I think I read somewhere that it could be a se of AIs.  Any feedback anyone?  I add this to me legion of neuroses like Kiwicatmom says...

    No gallbladder problems for me but my appetite is not good these past couple of weeks.  I have to force myself to eat especially when I'm alone.  If I have company, appetite is better.  But hey, I'm carrying an extra 20 pounds since my dx...thank you AIs.

    Kwagart and GG, good luck with your gallbladders - hope you find relief real soon.

    Hugs to all,    Linda

     

  • dlb823
    dlb823 Member Posts: 2,701
    edited December 2014

    Dee, I don't know if this would be helpful or not ... http://www.gallbladderattack.com/gallbladderdiet.s...

    I always thought fat (especially pork) was the worst offender for gallbladder problems. But after looking at these good and bad lists, I also wonder if maybe there are things besides the veggies that are causing your digestive issues -- common things like eggs, dairy, or even coffee or tea that are on this bad list.

  • kwagart
    kwagart Member Posts: 24
    edited December 2014

    thanks dlb, that list would probably bum me out if I could taste anything! Wonder about the tap water tho? Maybe treated city water? I have well water, guess gallbladders like fancy water:)

    Linda, thanks for the kind words.

  • Tracey-Canuck
    Tracey-Canuck Member Posts: 31
    edited December 2014

    Thanks Nine-Twelve.

    You made me smile, Tartie. Now I'll never be able to give up my port!

    Hey Dee, the nurse flushed mine with saline and then heparin. It has a weird 'smell-taste' like you can taste an odor.... I haven't had any blood drawn from it or taken other meds yet.

    Welcome to the new comers. There's a great bunch of women here with lots of experience and they're willing to share it. I've taken a great deal of comfort in being in touch with folks who've 'been there' and understand.



  • GG27
    GG27 Member Posts: 1,308
    edited December 2014

    Thanks everybody for your suggestions & sympathies! Deanna, seeing that page you sent me, now I'm not sure if it is my gall bladder even though the surgeon told me I have gall stones. I don't seem to have the symptoms that they talk about, so now I'm confused. Though eggs & pork are big on the list of no no's for me, they make me miserable. I don't eat any fried foods & while I eat some fat, it is usually just good fats like avocado, olive oil & such. I drink a couple of cups of coffee in the am, but I'm usually not having a problem until after dinner. I usually have a protein with veg & I think that's what is causing the problems.

    I think I will have to go back to my PCP & see what he has to say about it.

    Tracey, For my port, the card doesn't say to be flushed with heparin. Weird hey? Must be a different type. Mine is a Powerport by Groshong.

    9-12, I'll see if I can remember Eve, don't count on it though, my memory is just terrible these days!!

    Best to all! -Dee


  • tartie_pants
    tartie_pants Member Posts: 16
    edited December 2014

    weird must be a totally different port as mine has been hep flushed for almost 5 years now.

    Lol Tracey i swear my port is my security blanket if i could curl up with it and suck my thumb I would. It is just this talisman at this point when i get all worked up i can touch it and feel it and it tells me where I was and reminds me of where i am. Strange how somethings can become so important.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,297
    edited December 2014

    LOL on the port as security blanket. There are quite a few companies that make ports but I've never heard of one that doesn't need to be flushed. If you are using it for tx the flush is part of the process at the end of your infusion. I am not currently on any infused tx so I do go in monthly for a flush.

    Caryn

  • Momonana6
    Momonana6 Member Posts: 154
    edited December 2014

    Hi Annie, I am glad that your tx went so well and your sniffles and cough behaved. My prayers that the buggers are preparing to exit "stage left". Hugs, Peg

  • GG27
    GG27 Member Posts: 1,308
    edited December 2014

    Sorry for the confusion, mine needs to be flushed, just with saline though, no heparin. Security blanket, nope, don't like it one bit, makes me feel like a cancer patient! But I will say that it certainly is better than getting poked all the time. Would have made chemo easier but I would have had it removed long ago, only to have to have it put back in again. -Dee

  • tartie_pants
    tartie_pants Member Posts: 16
    edited December 2014

    i totally get the wanting it out asap thing as well like i said its that totally irrational idea of giving your last baby thing away and then you get another kid lol or the athlete who is on a hot streak and doesnt change socks i know logically the port has nada to do with NED being my boyfriend for 4.5 years now but that superstition thing lol

  • GG27
    GG27 Member Posts: 1,308
    edited December 2014

    Tartie, I fully understand the superstition part. You think that if you get rid of it, then you will need it again!! Unfortunately I will now have mine for life, this is what the onco says.

    It's another beautiful sunny day but chilly day here, hope everyone gets to enjoy the day! (no symptoms yesterday, I'm a happy girl, hoping for 2 days in a row!!) Cheers, Dee

  • Romansma
    Romansma Member Posts: 650
    edited December 2014

    Good morning. I don't post much here, but I'm having a tough time since getting my last MRI reports back. I had a PET that showed progression. Since the progression includes femur neck, hip, pelvis, and spine, my radiation oncologist wanted an MRI because my lobular disease shows better in this mode. Well, it definitely showed up! Riddle me this Batman! Riddled with mets in my skeleton. Hard to see how any treatment Ive done has had an any effect. Anyway, things like,"involving all vertabral bodies" and "total infiltration of vertabral body" have me reeling. Where else does it have to go? I guess I'm looking for some realistic scenarios so that I can prepare. I finally had a little little extra cash for traveling and booked some trips over then next 6-7 months. Now I wonder if I will be able to. Anyone have any experience with this that could add some real possibilities? I know there is hope, but I'm wanting the specifics of what thepossibilities are for the next 6-7 months. I guess I better get some trip insurance!

  • ibcmets
    ibcmets Member Posts: 312
    edited December 2014

    Romansma,

    Sounds like all progression is bone mets. I've had bone mets from the start in 6/09. I've been on Zometa for 5 years now, once every other month. For 4 years it did a great job at keeping me stable. This year I had a couple new spinal mets and my radiologist did spot radiation that worked well. I'm also on A/A. From what I hear, bone mets are the easiest to treat.

    I wish you success with your next treatment.

    Terri

  • Romansma
    Romansma Member Posts: 650
    edited December 2014

    Its good to hear that you are staying stable Terri. I know many have it way worse than I do. I guess my worry is that I've gone from no detection of any mets to mets everywhere in my skeleton including many that are totally infiltrating the vertabrae in less than 16 months. I have been on Femara, Faslodex, Afinitor, and Aromasin, as well as radiation during that time. It's hard to think that any of it worked at all when I see the progression. If it had taken longer to get to this point, I'd feel better that it was moving along slowly. I worry about compression and fractures that may limit my mobility in the near future. I'm meeting with the radiation oncologist, but he can't radiate everything. I guess we select what hurts and hope for the best on the rest.

  • dlb823
    dlb823 Member Posts: 2,701
    edited December 2014

    Romansma, so sorry you haven't had better news. I, too, have extensive bone mets, so I totally get your fear about future mobility issues. It also sounds like the wording in your MRI report was particularly harsh and upsetting. So two questions (and forgive me if we've discussed this in the past), but are you on a bone building drug? And does your onc also monitor your CA27-29? I'm just wondering if that's on the upswing -- which would support the progression dx -- or if just maybe you also have the possibility of some healing vs. progression going on that maybe isn't being picked up on by that particular radiologist, but which a downturn in your CA27-29 could indicate. According to my onc, they can be hard to distinguish between, so having CA27-29 results, as well as pain level info, can sometimes be helpful in evaluating the MRI report. (((Hugs))) Deanna

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited December 2014

    Hi. Romansma, I'd be reeling from phrases like that too! It's a hard report to read. I hope it's not all progression, but rather at least some healing, like Deanna said. When do you go back to your doctor? When do you meet with the radiation oncologist?

    I'm feeling kinda scared today. I go back to my oncologist tomorrow. I didn't ask for a copy of the bloodwork report, so I don't know if the tumor markers are up, down, or stable. I feel like I have more pain, but I'm going to discuss that with her. I don't know how much pain I should tolerate before taking pain meds. A lot of places say to take meds while pain level is mild, but maybe I shouldn't expect not to have pain. I was just reading about some foods that might help reduce pain. Ginger shows up all over the place. I also have to tell the doctor that I will be consulting with another doctor, that I am unsatisfied with the staff. (At least, I hope it is the staff and not her.) Nonetheless, I am taking her pumpkin muffins with chocolate chips. I will NOT give them to Shirley. God knows the way she passes on messages, the muffins would never get to the doctor. LOL

  • auroaya
    auroaya Member Posts: 784
    edited December 2014

    I usually "lurk" around and read all of yours posts. I have bone mets in my right femur, hip left shoulder and ribs and had been deemed "stable" by my onc until today. She told me that the tumor markers have been going up consistenly for the past 3 lab works (I get them every three months) and I'm probably going to change treatment. I've been taking Arimidex (anastrozole) daily and Zometa every month. Three months ago the doctor ordered a PET scan but Medicaid would not pay for it so she ordered a CT scan instead which showed some healing of the bones. She is going to try to get Medicaid to pay for the PET but she did mentioned that we might be switching to Aromasin or Faxoladex (sp?). I feel fine except for the hip pain and the fact that my leg where I fractured the femur because of the cancer hasn't healed completely and I still walk with a cane. I am hoping against hope that there is no progression but if there is I am going to accept the treatment. I will never stop fighting. Even if there's pain, I just don't want to die anytime soon. I usually don't worry about these things but today was the first time my onc. mentioned something not positive in my treatment so far. Any thoughts welcomed.

    Aurora

  • ReadingMama
    ReadingMama Member Posts: 338
    edited December 2014

    Hi All, I'd like to join in the discussion.  I was trying to read some of the old posts, but its tough to find the time, sorry.  Dx Stage IV in Sept. with mets to Sternum, lung lining and small spot on liver and lymph node on right side.  Triple Negative from biopsy to lymph node.  Had PET scan in Sept. after anti-inflammatory did not erase pressure in sternum and CA 27.29 went from 23 to 91. 

    Started with chemo in October, Carboplatin and Gemzer, plus monthly Xgiva.  Already did AC in 2010/2011 and Taxol.  First cancer was HER2+, so did Herceptin, but second cancer and now mets are TN.  Is chemo first common for TN folks?  Tamox and AI would not help me, so they are not options.

    I have done 3 rounds (9 weeks) and physical symptoms are much better.  But CA 27.29 went up to 132 so had PET scan today. 

    Opinions on if I need a bone scan also?  What would that show that PET doesn't and would it change treatment?

    Interesting, this week, I have been having aches/pains on my right side and I see above discussion about gall bladder stones.  I was of course thinking my liver mets were worse, but now I wonder if it is my gallbladder.  Will have to ask.

    Thanks,

    Meegan 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,297
    edited December 2014

    NO MUFFINS FOR SHIRLEY! They sound too yummy for someone like her. Dune, I hope you enjoyed one.

    Caryn

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