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Bone Mets Thread

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Comments

  • annieoakley
    annieoakley Member Posts: 653
    edited October 2015

    Deanna, oh my goodness I am in disbelief as well, I didn't think that you could lose that much height. So glad to hear all your counts came back up and everything else looks so positive, I'm happy that you received some good news. 

    AmyQ, best of luck on your MRI's, praying for good results.

    Linda, thanks for the Thanksgiving wishes, I have to get up early to make stuffing for the turkey and an extra casserole of stuffing because there's never enough for all of us. I best get to bed.

    Hugs to all, Annie

  • jobur
    jobur Member Posts: 495
    edited October 2015

    Have not posted on this thread for a while, but lurk here every day.

    Just wanted to wish all you Canadian gals a very happy Thanksgiving. With all the ups and downs of MBC there is still so much to be thankful for!

    Warm thoughts and hugs to you all.

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

    Good morning all!

    My infusion yesterday is really kicking my butt today, pretty achy & tired. My lower back is so sore, feels like it's sunburnt, could this be from rads a couple of weeks ago? Annie, did you have this onset so late after your rads?? It started about 5 days ago, don't know if I pulled something working in the garden, but would the skin feel so burnt?

    It's Thanksgiving weekend here & the whole of our tiny island is crawling with tourists doing the Gabriola Studio Tour. We're glad that it's so successful for our local artists but it means it's so busy. Luckily I don't have to cook this year, usually I have house guests & do the whole turkey thing with all the fixin's. It will be nice to just come back to our quiet little house.... aaaahhhhh!

    Happy Thanksgiving to all Canadians (and get out & vote!!) Wishing everyone else a pleasant fall weekend. Cheers, Dee

  • dlb823
    dlb823 Member Posts: 2,701
    edited October 2015

    Happy Thanksgiving to all the Canadian gals!

    Sorry you're so achy and tired, Dee, but glad you've adjusted your usual holiday routine and can hopefully just relax today.

  • AmyQ
    AmyQ Member Posts: 821
    edited October 2015

    Happy Thanksgiving to our neighbors in the north.

    Amy

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2015

    I echo the Happy Thanksgiving wishes to all the Canadian ladies. You are right Jo, we have a lot to be grateful and thankful for.

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

    Happy Thanksgiving Canadian ladies! Have a wonderful holiday!

  • chelleg
    chelleg Member Posts: 396
    edited October 2015

    I must again echo Happy Thanksgiving to all of the wonderful Canadian ladies!Have a wonderful holiday!

  • annieoakley
    annieoakley Member Posts: 653
    edited October 2015

    Hello everyone,

    As one of the Canadians celebrating Thanksgiving this weekend I want to thank all of you for your well wishes. We're having our turkey dinner today and I've been preparing stuff all morning. Needless to say my back is rebelling. Tomorrow I am going to see Shania Twain at the Air Canada Centre in Toronto so it's a busy weekend for me. I plan to spend Thanksgiving Monday relaxing.

    Dee, I had reactions to my rads even 3 weeks later so I'm sure that's not at all unusual and with all the work you've been doing I bet it's a combination of both. My rad onc had told me that I could have side effects up to a month after my rads ended and he was right.  My last infusion really kicked my butt too! Rest up this weekend and Happy Thanksgiving!

    Hugs to all, Annie

  • mimipickle
    mimipickle Member Posts: 160
    edited October 2015

    Deanna-can you explain more about the cannabis oil?

    Wendy-thanks for the tea suggestion. I will check it out.

  • dlb823
    dlb823 Member Posts: 2,701
    edited October 2015

    Ellelou, a few months ago, when I was having a lot of pain, my son had coincidentally looked into medical marijuana for migraines. He never pursued it, but while he was researching he came across this chart and sent it to me. http://sclabs.com/learn/ailment-guide.html It shows which forms of medical marijuana are suppose to help each condition.

    Then, last week, I read this article in CURE Magazine, which, surprisingly to me, didn't poo-poo even the possibility that it can eradicate tumor cells. http://www.curetoday.com/publications/cure/2015/Su...

    Other than this, all I know about it what I've seen in TV documentaries, such as WEED by Dr. Sanjay Gutpa, where it seemed to greatly help children with various serious medical conditions, including cancer, when other txs had failed them. In those cases, families were moving to Colorado to get their children access to THC or CBD.

    Anyway, bits & pieces of info' like the above are why I decided to ask my UCLA onc what she thought about it, as mentioned above.

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

    Thanks for answering Annie. I know I've been doing too much, but even when I lift rocks & stuff I've never had the sunburnt feeling before. I will mention it next week when I see my RO, more rads then too, hopefully she will confirm what you've said. I'm going to get her take on the CT scan results & see if she agrees with the radiologist that I'm stable.

    Have fun at the concert!

    Deanna, I am taking it very easy today. I feel kind of crummy, but it's also a very rainy & windy day here. I'm going to make pumpkin creme brulee to celebrate TG. Cheers, Dee

  • aoibheann
    aoibheann Member Posts: 259
    edited October 2015

    (belated) Happy Thanksgiving Day to all our Canadian sisters!

    Deanna, just to chime in and say that I have lost over four inches due to compression fractures and bone mets - gone from 5' 8" to 5' 31/2". DH says it's difficult to find me if I wander off when we're shopping, he can't get used to searching for a little, white-haired, stooped old woman instead of a tall, dark-haired woman. Another thing this horrid disease takes away.

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2015

    Deanna and Aoibheann, I see my primary on Monday and I will get measured. My shoulders have been getting more and more rounded so I may be joining you in lost height. Deanna, thanks for the links....can't get medical marijuana here....

    Dee, I want some of your pumpkin creme brulee. I had burning when I had rads to my ribs. It felt hot all the time. I used Aquaphor and a cream from my dermatologist called Biafine. ( by RX) It helped some. I did end up getting small blisters but I had a really high intensity rad treatment.

    AmyQ- good luck with your MRI's coming up.

    I went to a Melissa Etheridge concert last night. Her second song into the set was about her breast cancer. She said she is 11 years out. Then she sang a beautiful song on her piano for those of us in the audience going through treatment now. Lots of tears. She still has the smokey gravelly voice that is her signature. She was amazing. Annie, be sure to let us know how Shania Twain concert went.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,356
    edited October 2015

    Happy Canadian Thanksgiving

  • Myra1211
    Myra1211 Member Posts: 532
    edited October 2015

    I too have lost at least 2". I had to have DH lower the upper pole in the closet since I almost hurt myself getting something from it last week. I know I could reach it last year! Myra

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

    Lindalou, (and Annie) I went back to the calendar & looked at when I had my sacrum radiated & it was 9 weeks ago, so I'm pretty sure that the pain is not from radiation, I think I've just been really overdoing it out in the garden & helping DH get the site ready for the carport. I told him that I'm not doing anything physical all weekend.

    The pumpkin creme brulee turned out so delicious! So easy yet elegant. Everyone's invited for creme brulee!

    Terrible about all of you losing height because of compression. Will my pamidronate infusions help prevent this?

    Goodnight everyone, cheers, Dee

  • annieoakley
    annieoakley Member Posts: 653
    edited October 2015

    Hello to everyone, 

    Myra, I'm finding there are things I can't reach anymore either, now I'm wondering if it's because I have lost some height? I was almost 5' 7" so I'm going to have to have that checked. I feel like I look shorter but maybe it's just because of all the weight I've gained.

    Dee, it's already been 9 weeks since you've had your sacrum radiated? Ok now that I'm thinking about it you said a burning feeling right? My L5 burns and I can feel it down into my sacrum because that met is very close to S1. I usually feel that when I've overdone it, like I did yesterday with the turkey dinner! So my back is burning today and I have the Shania Twain concert to go to. I like to put essential oil of peppermint on it, I find it very soothing and it helps with inflammation. Your pumpkin creme brulee sounds amazing. My daughter that is a chef makes a pumpkin cheese cake every year at Thanksgiving, omg I can't stop myself from eating it!!!

    Wishing everyone a pain free and relaxing Sunday. I'll talk to you all tomorrow.

    Hugs, Annie

  • Myra1211
    Myra1211 Member Posts: 532
    edited October 2015

    Annie, I bought peppermint oil, but I don't know how to use it. Do you apply directly out of the bottle or dilute it with something? Of course, since I bought it I have not had pain!

    Glad all you Canadiens had a nice Thanksgiving. Living in Florida, we are awaiting our huge influx of "Snowbird" Canadiens.

    Happy days to all. Myra.

    P.S. Dune, how did the reunion go





  • annieoakley
    annieoakley Member Posts: 653
    edited October 2015

    Myra, I usually get my husband to apply it for me. He puts 3 or 4 drops in the palm of his hand, rubs his palms together and massages it into my back. Omg it feels so good! If I do it myself I put a couple of drops on my fingertip and reach to my lower back and rub it in, I can't go without it. I'm glad to hear you've had no pain, that is great! 

    Hugs to you, Annie

  • Myra1211
    Myra1211 Member Posts: 532
    edited October 2015

    Thx Annie

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

    Thanks Annie, I'll see if I can get some today. Enjoy your concert! Cheers, Dee

  • AmyQ
    AmyQ Member Posts: 821
    edited October 2015

    Peppermint oil - that does sound healing. I'm heading out to Whole Foods to grab some and have my DH apply to my back and shoulder area. Thanks for the tip!

    Amy

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2015

    Beautiful here today....

    image

  • dlb823
    dlb823 Member Posts: 2,701
    edited October 2015

    Gorgeous photo, Linda!!!

    I'm also a big fan of peppermint oil and can vouch for its effectiveness in alleviating pain. Well worth trying. Just be sure not to get it too close to your eyes, as the fumes can be very strong.

    So sorry to hear that I'm not the only one with significant height loss! It was just one of those things that hit me in the face and snapped me out of my usual state of denial. Does anyone know if PT might help? I'm going to at least ask about it. Maybe my posture -- compensating for the achiness -- is part of the issue.

    Amy, good luck with your MRI tomorrow. I'll be thinking of you!

    Dune, how was the reunion?

    I hope all the Canadian members had a wonderful Thanksgiving. Any photos to share?

    And here's to a coming week of improvement and no bad news for us all! Deanna

  • annieoakley
    annieoakley Member Posts: 653
    edited October 2015

    Hello to all,

    Lindalou, your picture is beautiful and so colorful! It was a gorgeous fall day here yesterday too.

    Deanna, good tip about the peppermint oil! And also if you apply it yourself wash your hands later. One time I forgot and rubbed my eye and omg what a strange sensation, it burned and yet felt cool at the same time.

    AmyQ, best of luck with your MRI tomorrow, sending positive vibes! 

    The Shania Twain concert was absolutely amazing and a night I will never ever forget. Wow what a performamce she put on, we were in awe. Needless to say my back hurts and my hips are aching from all the dancing so today is a day of rest.

    Wishing everyone a pain free and relaxing day. We're getting a high of 22 here today so I'd like to get some nice fall pictures but not sure it will happen.

    Hugs, Annie

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2015

    Annie......So happy that you were able to make it to see Shania and that you danced!!! A special memory for sure.

  • Wendy3
    Wendy3 Member Posts: 872
    edited October 2015

    Lindalou great picture love the colors.

    Thanksgiving this year was definitely different my husband is still working down in Oregon so he was missing and one of my sons had to work and my daughter is studying in another town. So we had a small dinner with my sister and her family was very nice. But I kept sitting there thinking "Wow will I be there next year?" What a bummer cancer is it never leaves. I want to be upbeat and happy for everyone but I feel like the air has been let out...

    AmyQ I will be thinking of you and your MRI tomorrow sending good vibes.

    Annie dancing to Shania Twain must have been a blast. Rest up today so your ready for your next night on the town.

    I wish all you ladies a lovely day

    Wendy

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

    I have to catch up from page 301 but I'll share this first.

    Here's the latest news: The oncologist at Carroll County confirmed that the lymph nodes are growing, so she cancelled my treatment that was scheduled for today and everything else that had already been scheduled. I said my goodbyes to the fantastic oncology nurses there and am now in contact with the oncologist at Johns Hopkins with whom I will be working. Most likely it will be an Ibrance trial. Apparently, they like you to be 30 days free of chemo first, so I should be feeling pretty good for a month.

  • dlb823
    dlb823 Member Posts: 2,701
    edited October 2015

    So sorry to hear your current chemo has stopped working, Dune; but glad you already have another game plan in place. I hope you can get into the Ibrance trial, or at least get on some sort of regimen with Ibrance.

    I took a scary tumble this morning, trying to move furniture (yeah, I know, really stupid...) for the carpet cleaner who should be here any minute. I was wearing flip flops that caught on the carpet when I turned and sent me into a twisting fall. I managed to catch myself on the edge of my dressing table which broke the fall somewhat, or it would have been much worse. But I twisted my reconstructed hip and leg, and now it pops when I move it. It's probably nothing serious, but definitely wanted to warn others, b'cuz it literally came out of nowhere and scared the cr*p out of me! I had cut back on wearing flip flops, and the ones I had on this morning are already in the trash, with others to follow. That was really scary, especially since my UCLA onc had told me after my hip replacement that I needed to be very careful about falls, and I never saw this one coming.