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Bone Mets Thread

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Comments

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    The ups and down of stage 4.. Happy for Rachel, and sad for Cathy. Truly bittersweet..

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited September 2015

    Annie - that would be horrifying. Wasn't trying to make light of your situation. Just thought it was ironic that across the world from each other, two BC people have encounters with bulls in the same week!

  • annieoakley
    annieoakley Member Posts: 653
    edited September 2015

    Terre, I think it's strange too that we both had encounters with bulls in the same week. I know you weren't making light of the situation, I've just never seen anything like that, it looked mad! I wouldn't have wanted to be anywhere in its path. Just the thought of it was horrifying indeed. 


  • Lindalou
    Lindalou Member Posts: 598
    edited September 2015

    Good Morning all,

    Just wishing everyone a good weekend and hoping we all find something to enjoy and be as pain free as possible. I plan on getting out and doing some photography.

    Terre- It's hard to see from your avitar but it looks like kittens. Do you have pictures?

  • steelrose
    steelrose Member Posts: 318
    edited September 2015

    It's early in Ca. and I've been up since 4, stressing over the pain in my side returning (Is it tumor flare from the chemo? Or is the chemo even working?), the usual financial stressors, relationship stressors, and all of the stupid stressors that we all have that are so darn magnified at stage iv. Blah, blah, blah, blah!!!! But reading about the crazy American bull and the seemingly peaceful New Zealand bulls just cracked me up. Annie's "It looked mad!" vs. Kiwi's bulls just hanging out on the side of the road, eating grass. You ladies are so wonderful! I absolutely would have run for the hills, Annie. Maybe we need to visit peaceful New Zealand?!

    I hope those that are experiencing pain and troubles will soon turn things around. Cathy, especially thinking of you today.

    Love to all…

    Rose.

  • annieoakley
    annieoakley Member Posts: 653
    edited September 2015

    Steelrose, I'm so sorry you've been up stressing over pain, I refuse to believe that it's anything but the chemo working and the cancer retreating! I send all my positive vibes your way. Mine was the crazy Canadian bull and if I had to run for the hills I would have been in trouble. Glad Terre and I could make you laugh and I would love to be able to go see the peaceful New Zealand bulls because then of course I'd get to meet Terre :) I'm relieved I was watching the frantic bull from inside the vehicle because if I was still in the market square I may have pooped my pants, seriously! Wishing your pain away and a nice relaxing weekend. 

    Hugs, Annie

  • steelrose
    steelrose Member Posts: 318
    edited September 2015

    Oh-my-God, I'm laughing even harder now, Annie. Love how I just assumed that if it was a crazy, mad bull it must be American! I do apologize for offending our Canadian friends (and bulls), and you Annie… but oh gosh, I nearly spit up my coffee.

    Clearly just getting to know you all on this thread, but thank you for being so welcoming, and for the wonderful laugh. It really is the best medicine.

    xo

    Rose.

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited September 2015

    Thanks so much ladies for your concern and kind words however yes I was transferred to my cancer center and admitted for more tests and treatment. The brain mets are there and have been treated with steroids and radiation to the brain. I did hit my head falling leaving me vomiting and lots of left side symptoms that looked like a stroke however these symptoms are getting better daily. I am lucky to have my kids, family and friends who continue to support me. Best of luck to you all.

    Cathy

  • annieoakley
    annieoakley Member Posts: 653
    edited September 2015

    Cathy, thank you for updating us, I am so sorry for all you have gone through and I was really praying it wasn't brain mets. A friend of mine I met at the cancer centre was diagnosed with brain mets and after radiation her scan came back clear. It was very successful in eradicating them and she's feeling much better, I'm wishing the same for you. I'm happy to hear you have such a great support system. Sending you healing hugs, Annie

  • annieoakley
    annieoakley Member Posts: 653
    edited September 2015

    Steelrose, no offense taken, we have some crazy mad Canadians too 😄. Laughter is the best medicine so you started your day off right. Hugs to you, Annie

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited September 2015

    Hi Hydranne! Good to hear from you!

    Annie - I'm with Steelrose - I'll bet your bull was American. :) (I'm American too, just live in NZ). I would have been terrified Annie. I'm even a bit scared of horses.

    Steelrose - sorry you're stressed over pain. I had a new one in my ribs and was stressing like mad, but it's gone away. It was probably muscle strain; who knows. At any rate, I agree that it's the chemo killing off those nasty little cancer cells and they're just mad at you and causing you pain. Kick them to the kerb!

    Cathy - I am so very sorry you're going through this. Sending you hugs and good thoughts. I know there are several here on the boards who have had their brain mets treated with radiation and the treatment was highly successful.

    Lindalou - my avatar is Mittens when she was a kitten. She is a little hoon now - about 6 months old. I fostered a momcat and 6 kittens. Long story short, 3 of the kittens didn't leave. I have pics of most of my cats (we have eight!) on the cats cats cats page. But here's a bigger version of my avatar. Mittens tends to look worried/stressed. She's not. She's got a big nose and a bit of a lazy eye. In this picture, she was getting ready to pounce on her brother. However, the kitten rescue place I help out with uses this shot as "please help us raise funds for poor worried kittens" pleas. :) One woman was so upset by the picture on Facebook that she volunteered to come rescue the "poor wee thing" and the Kitten Inn had to confess that Mittens has never had a stressful day in her life.

    Hugs to all...Terre


    image


  • GG27
    GG27 Member Posts: 1,308
    edited September 2015

    Hi all! Just checking in, we're back from our little vacation. I had an appt with MO the day before we left. She was less than enthusiastic about my bone scan. To say I was disappointed was an understatement. I'm hoping that the "more prominent" of my lesions is like Annie says, but the RO called yesterday & I asked her, she didn't seem to think it was healing of the bone. So, I will just carry on.

    Here's a pic of me up in the Rockies. It was cool but refreshing. I have some more photos to share later.

    image

    I will get caught up on this thread later. I hope that everyone is doing ok. Gentle hugs to those of you having pain. Take care, cheers, Dee

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited September 2015

    Dee - welcome back! Great picture. Sorry you're getting not great news from your oncology team. Sending you hugs.

  • Sue2009
    Sue2009 Member Posts: 96
    edited September 2015

    Hi all, I haven't been near this thread in a while. I have qx for those w/bone mets progression. I recently completed radiation to both hip areas, waited 2 weeks for PET scan. I did not sleep at all night before scan due to pain in left femur & h/a. I cancelled PET until next day. So yesterday I was told I had significant progression to left femur. I just came off Palbociclib in June, have also been doing Zometta & faslodex. Has anyone had any chemotherapy for bone mets? Seeing RO & MO on Monday, wondering what they may offer...

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited September 2015

    OMG, you girls are cracking me up. Crazy mad bulls could easily be mistaken as American rather than Canadian. That is really so true.

    Dee, my RO doesn't seem to subscribe to the pain is bone healing point of view. I told my mom that she could at least pretend. So I just decided to frame it that way anyway. It's my disease. I'll look at it the way I want (for as long as I can) .

    I am very sad to hear Cathy's news, but I'm glad to learn that radiation can eradicate the brain mets. Still, Cathy, I'm awful sorry, and I know you must be very afraid. Thank God for supportive families.

    LindaLou what kind of photography do you do? Do you drive to a destination and hike around looking for subjects? I used to love photography.

    And Terre, I LOL about Mittens.

  • Lindalou
    Lindalou Member Posts: 598
    edited September 2015

    Terre- THANK YOU....You made me smile. I want one of your kittens! Better yet, just ship MIttens to me.....

    Dee- So glad you got away and your picture makes me want to go on a road trip, which is my favorite thing to do. Sorry to hear what your RO said. What is your next step?

    Dune- I dabble in photography. Mostly fun stuff. My son gave me a 35 mm shortly after I found out I had mets and he was leaving for NYC the next week. It was a bit much for both of us. He wanted me to have a hobby, and he was right! Trees are starting to turn color and I am heading out to see what I can find. Can you get back into photography? I find the camera can get too heavy for my spine/ribs so I have to be careful.

    Cathy, sending you all the hope and strength I can, for you to get through all you have to. You are one strong woman.



  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited September 2015

    LindaLou, I used to crawl around to get different angles, and my favorite shot is the close-up. Now, I no longer have my close-up lens, so I guess that is a little irrelevant. I do love the Autumn colors though. It is definitely something I should consider to get myself out of this stupid bed. My mother doesn't let me drive anywhere. LOL. Seriously! The situation has to be funny or else I would go nuts. I think I will try though. I got rid of my 35mm, but I have 2 good cameras. One is a Kodak, which is a point and shoot. It has a huge zoom. I don't remember the figure, but it is huge; which makes it an awesome vacation camera. I also have a Nikon digital SLR with 2 lenses: a semi-wide angle to "normal" or portrait and a portrait to mild zoom. I should get up and actually pull out the camera and give you the precise figures, but, well, nah. LOL It is a very nice camera. My brother bought it for me. I bought the 2nd lens. Then I got this email from Kodak about this other camera, and I bought it, and I try not to let my brother know that is the one I use most of the time. The Kodak has amazing features and is so convenient (not having to change lenses). The Nikon feels good in the hand. The shutter release sounds good. The body of the camera is extremely light. I'll have to find some of my pictures, just one for Spring and one for Autumn and upload it. Maybe a nice Autumn scene would be a better avatar than my bald head. Oh yeah.

  • GDFrasier
    GDFrasier Member Posts: 4
    edited September 2015

    Just found this site. I was dx with stage 2 lobular breast cancer in 2002. Estrogen + HER2 -; mastectomy, chemo, radiation; declared cured after ten years. Last winter I started having pain in my hip; went through the usual therapies as everyone thought it was a stuck SI joint. Didn't respond so was sent in for an MRI, where they found the recurrence in my bones. Same breast cancer. No organ involvement. Had a month of radiation which greatly relieved the pain, and am now on monthly shots of Faslodex and Xgeva. My tumor markers have gone from 205 to 21 and my onc declared me in remission. I keep hoping that since it took 13 years for recurrence and I responded so quickly and well to treatment that the dire statistics of metastatic breast cancer will not apply to me as my cancer is slow growing. My onc says I'll be around for a long time. I sure hope he's right!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355
    edited September 2015

    Hi GDFrasier,

    Welcome, though I am sorry that you are joining us. Though we have different types of bc, and started out differently, I have been living with a single, grade 1 bone met to my upper femur for more than 4 years. I am also ER+, and have been on an AI (Arimidex then Femara) the whole time. I also had rads to the met and 16 Aredia infusions. I have some joint pain and stiffness if I am sedentary for too long, but other than that, lead a fairly normal life (work, travel, family etc.). Women like myself are still the minority, but, yes it is possible. My RO said virtually the same thing to me as your onc did, and so far he's been right. I have had no progression over these years. Do you have limited bone mets? How about the grade? There is a state know as oligometastasis (1-5 mets to one organ or bones) which seems to be a subset of stage IV. Wishing you the best. Let me know if you have any questions

  • GDFrasier
    GDFrasier Member Posts: 4
    edited September 2015

    I'd never even heard of the subset to bone mets! Thank you; I now have a new question for my onc. :-) Oligometastasis; I'm writing that down!

    I have some neck and hip pain; not too bad. Doesn't limit my activity, and is way better than where I started last spring.

    Another group I belong to have a theory that those of us that have had lobular BC are more prone to recurrence. Ever heard of that?

    I had six years of Arimidex after my first go around. Should have stayed on it. ;-)

    Thank you for your response! Blue skies to you! :-)

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355
    edited September 2015

    GDFrasier,

    I don't much about lobular bc, but I hope someone who does will come along soon.

    Check out this thread on oligometastasis:

    https://community.breastcancer.org/forum/8/topic/7...


  • GDFrasier
    GDFrasier Member Posts: 4
    edited September 2015

    Oh, I thought your first diagnosis was lobular. Isn't that what ILC is?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355
    edited September 2015

    Oh my goodness! I just looked at my signature line and saw ILC !!!!!!. It never said that beforeand I have no idea how it got there (I haven't edited my signature line in over a year). I'm going to correct it right now. Thanks for your good eye.


    PS: I just read over my signature line and there were more errors. For instance, it showed I had rads to my bone met 2x on different but overlapping time periods ! I never read my own dx, but I'm so glad you brought it to my attention. It'svery weird.

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited September 2015

    They messed around with the settings and profile stuff (I think) Caryn. Mine is close enough to being right that I won't bother with it unless I get very bored.

    Hydranne, the reunion is 10/10; but thanks for asking. I'm procrastinating on the last few things I have to do. I hope I will get a lot of help with the decorations. I hope we will have at least $500 to donate to the school. I hope everyone has a good time, and basically, I can't wait until it is over. LOL

    I need to go to the drug store tomorrow to pick up prescriptions, and I'm glad. It will help me get out of the house on my own for a little while. Mama Bear wants me to leave her my credit card so she can pick up my scripts. If I am out of it because of pain medicine or unsafe to drive because of pain, then I will gladly accept help. However, I'm hoping to feel well enough to get out -- and while I am there I will go to the gym. I will only do 15 minutes on the treadmill, but I really feel the need to move my body. I think I should be able to walk moderately for 15 minutes without too much blowback.

    If it is nice, maybe I will even take some pictures. I'll get the camera out now. 55-200 mm lens and 18-55 mm. Maybe I will see what happens when I play with the 18 mm zoom. It could give me some interesting pictures. Maybe I will buy a close-up lens for it. I love close-ups, especially for flowers. I'll wait forever for an insect to crawl into an open flower. Now, the Kodak point and shoot I was telling you about earlier is such a great vacation camera. It uses regular batteries, so you don't have to worry about running out of a charge. The zoom range is from 26 to 624 mm. I can zoom the damn moon right to my dinner table. It was one of the first to come out with semi-auto stitching, permitting amazing panoramas. And it wasn't even expensive.

    My brown mark came off my finger. Well, most of it is off. There's just one little spot left. I have no explanation, but obviously I'm not going to the dermatologist.

    I think it is time to switch wardrobes. I love Autumn clothes: flannel and fleece and cords and long-sleeves. I hope I embrace this Winter. It is what it is. Why throw away 3-4 months moaning about the cold, my fear of driving on icy roads, and the bulky coats. Could be, it might be another chance to learn my Nikon better. I know I have to give it an extra 1-2 f-stops to get a true white.

    I think I'm getting sleepy. It might be time to tuck Dusty in.

    TTYL

  • Wendy3
    Wendy3 Member Posts: 872
    edited September 2015

    Good evening ladies I was wondering if any of you have had any experience with Clodronate? This is supposed to help build up bones. After reading the SE s I'm not so keen....

  • steelrose
    steelrose Member Posts: 318
    edited September 2015

    Sue2009,

    I wanted to respond to your question about chemo for bone mets. I progressed on Faslodex and was switched to Doxil (chemo) in June. My mets are spine and ribs. The chemo definetely reduced the pain, which was out of control before. Couldn't radiate the spine again. My MRI showed mixed results... some healing and some slight progression. Very confusing really, but my guess is that I'll be moving on to Ibrance/Aromasin next month.

    I'm sorry for your pain. Did you progress on Ibrance? Seems like we're passing each other, going in opposite directions! But chemo's effect on bone mets is hard to predict. Seems like blasting the body and hoping something sticks. At least enough to hold us steady. Wishing you good luck!

    Rose.


  • Wendy3
    Wendy3 Member Posts: 872
    edited September 2015

    Rachel that's super great news freaked me out that it that would be even possible to change from positive to negative. I guess with this disease anything goes. So happy for you

  • chelleg
    chelleg Member Posts: 396
    edited September 2015

    Hello ladies. It has been a very busy Saturday. I Took my 13 yr. old Katey to her riding lesson. It has been a great diversion for her. Also gives her the incentive to stay on the honor roll. Then I was off to see a " Doctor" in Boulder. I walked in and saw psychedelic posters on the wall and grateful dead songs on the radio. There was a little pooch running around and everyone in the office were in jeans and band T. Shirts. I was really wondering why in the hell I thought I should do this. In Colorado we can buy all kinds of marijuana, but if you have a prescription, it's half the cost. So I thought I'd give my sad story and get the "red card". Of course the "dr" approved my eligibility. He proceeded to tell me about something called Phoenix tears or Rick Simpson oil. I watched the videos on you tube regarding this. I am wondering if anyone has heard of this, or tried it? Very interesting. My mind is on overload and should probably sign off. Hugs all around. chell

  • Wendy3
    Wendy3 Member Posts: 872
    edited September 2015

    HI ChelleG Yes I have been doing the PHEONIX tears stuff since June, my tumor has been shrinking since July. Now whether that is from the pot oil or from something else idk but I'm not stopping yet. Since seeing "Run for the cure" I have learnt of many success stories from fellow cancer patients specifically breast cancer, lung cancer and brain cancer. I figure what the heck try it......it taste awful but three little rice size drops a day is not a big deal to add in to my drug regime.

  • Chattykat40
    Chattykat40 Member Posts: 37
    edited September 2015

    Hi Frasier... welcome! I also have lobular and I was told by the onc that it is a cancer that loves to travel with a buddy. This was before I found out I was stage IV. She said it is very common for it to show up in the other breast down the road so originally we were looking at double mastectomy. So, yes it is a traveling cancer and is common for recurrence. Of course, now that I'm stage IV mastectomy is off the table. I was stage IV straight out of the gate. Lobular got me good...

    Haven't been on the site for over a week and I've missed too much to respond to everyone. I've been trying to get out more and walk and stuff because it's supposed to be good for me or something... lol. So, every day I waddle around the block like a snail. I will admit it makes me feel better but I don't think I'm getting stronger which has me worried. Only 3 months into my diagnosis and I am just so tired all of the time. My rib hurts, my back hurts... and I have a lot of pain in my right arm. But, I'm having my PET scan on Friday and my onc said that after my scans they will look into the possibility of doing some radiation to relieve some of my pain but first they have to determine whether or not my arm pain is the cancer or something else. I do have mets in my clavicle which is next to the arm that hurts and she is wondering if that might be the cause. So, we'll see.

    Sending out big hugs to everyone and I hope all of you have had a restful, peaceful weekend...

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