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Bone Mets Thread

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Comments

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2016

    Lindalou, Seven years, wow! Congratulations. What a wonderful thing your friend did for you. Diana Ross is such a good performer. People with as much talent as hers humble me. She has such a gift. I have always wished that I could sing or dance or paint or play the piano or create. Actually, I do sing, especially in the car, but others suffer for that. Anyway, I am glad that you enjoyed such a great celebration.

    Lynne

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2016

    Aurora, I congratulate you on your scan results. WOOHOO! The results look great. I could not be happier for you. I am doing the happy dance. Unfortunately, my dancing is even worse than my singing, but there is a lot of happy movement involvedin the effort.

    Lynne

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited July 2016

    Congrats Lindalou! 7 years is wonderful to hear! Glad your friend helped you celebrate with Diana Ross! Nice!

  • silviah
    silviah Member Posts: 35
    edited July 2016

    Thanks everyone!!! I'm still new to this site. Not good with all the abbreviations yet.

    My kids took it better than I thought. They actually took it better than I did!!! I've told mostly everyone in my family - just not my mom. She's 75, old school from Greece and she doesn't speak English very well and just doesn't really understand the whole thing. I will tell her - and soon too - I just have to figure out a way that she can understand. My Greek isn't good enough for that explanation.

    Every little ache freaks me out. I'm not really having any bone pain - every once in a while my right elbow is sore for a few minutes. In reading the possible side effects of the Tamoxifen - I see muscle aches. That might freak me out even harder.

    Maybe whoever has taken it can give me some input??

  • cive
    cive Member Posts: 265
    edited July 2016

    Aurora - They are saying that there is some activity going on in your lungs, but say it maybe due to an irritation/inflammation. You will want to discuss it with your MO, but my guess is that unless you have other symptoms, they will just watch it.

  • Kaption
    Kaption Member Posts: 2,934
    edited July 2016

    silviah

    I'm glad you found these great people for support. I feel for you having to tell your mom. She will gain strength as she watches you be ok and live your life.

    Tamoxifen was what I was on between my two bcs and before mbc. I had few side effects, but I was already in menopause. I did have foot and leg cramps at night. Hot flashes were the same as before. But, everyone is different. Keep track of se that stay with you and/or get worse. You will learn to listen to your body.

    Take care and rely on your friends and family. ((Hugs))


  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    hi all,

    Firstly, Lindalou, seven years!! celebration time, bring on the cabana boys! :)

    Aurora, my scans show ground glass as well, I think mine are from radiation. Dr's are never concerned about it.

    silviah, welcome to our little corner of the MBC world. The reason to be here isn't great, but everyone here is.

    I'm still not feeling great. My PCP is coming in today from his vacation to see me & another patient. geez, I must be special.... I'm hoping that my ongoing crappiness is being caused by the antibiotics.

    hello to everyone else, hope you have a great weekend. BBL, cheers, dee

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Dee- I see a cheer there...

    Hugs CarolWinking

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2016

    Congrats Lindalou! Seven years is really great!!

    Love n hugs. Chrissy

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2016

    WooHoo for 7 years, Linda, and here's to many, many more! And what fun seeing Diana Ross! I always thought she was so glamorous when she was younger. Glad to know she still has it and is still performing.

    Dee, I'm so sorry you're still struggling. Glad your onc could see you today. Let us know what you found out. Hopefully by tomorrow, you will have turned a corner and be much improved.

    Silvia, I'm so sorry about your restaging, but I'm glad you've found us. What part of CA are you in? I'm out near Palm Desert.

    And welcome, Tee. I'm sorry you, too, have reason to be here, but glad you've found us.

    Aurora, your scan report sounds very positive! I had to look up hypermetabolism, which I'm sure you've done by now as well. I think Wendy and cive both gave you good info.

    Hi, Chrissy! Love seeing you post here! Best wishes for fast healing from your recent surgery!

    I hope everyone can enjoy the weekend! We're miserably hot & humid here, and boy, does the humidity add to the achy bones.



  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    hi all,

    Carol, it wasn't a very cheery cheer but beginning to feel like myself a bit more.

    Saw PCP today, not MO. He took me off one of the antibiotics, he felt that because I am highly sensitive to "cillins" that that one could be making me feel like I'm not getting better. They are still watching me carefully, but fingers crossed, I think my WBC may finally be on their way up. We will find out on Tuesday labs.

    I think I've missed some new folks here, sorry, no slight, but not feeling my best but welcome to the place no one really wants to be, but it's good place.

    Where I live it the BC Day long weekend which takes on a whole new meaning now, but stands for British Columbia Day. The population on our little island swells to about 3x as many bodies, no restaurant meals out, if you didn't buy it in the grocery store or drug store today you won't be getting near there tomorrow! Fun & games! :)

    cheers, dee


  • Lindalou
    Lindalou Member Posts: 598
    edited July 2016

    Dee, It is good to hear that you are starting to feel better. Your pcp sounds like a great doctor that has your back.

    Good weekend to all...

  • Kaption
    Kaption Member Posts: 2,934
    edited July 2016

    Hi All,

    Hoping for fun weekend plans for everyone.

    The last couple of days the area under might left knee has been swelling. It gets worse as the days go on. No pain, no redness. I'm on Faslodex and xgeva only. When do you worry about blood clots???Wish I had called the nurse yesterday morning.

    Just don't know whether to be concerned or not.

    Thanks for any suggestions.

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2016

    it's the year of bunny rabbits and poisonous snakes. Both copperheads and cotton mouths. Thank god my hubby is strong and courageous. This one is missing the head - dh already chopped off - must be nearly 6'

    image


  • silviah
    silviah Member Posts: 35
    edited July 2016

    dlb- I am near Sacramento - been 100+ for like 6 days in a row.

    when i was going to have chemo, they told me to be careful of my immune system....is it the same with taking tamoxifen?

  • nancyartcrafts
    nancyartcrafts Member Posts: 24
    edited July 2016

    just must chime in now. I have read or scanned through all posts since the beginning of this thread, almost 14,00 of them, but I may be wrong since I have pain pills on board before trying to sleep...

    1. This seems to me to be a process of accepting these metastasis. So many of you are more aware of their diagnosis, more informed of choices, and greatly involved of processes leading to better outcomes. My numbness of being aware of my metastastases is just sinking in after two weeks, When I was informed of the nine mets in my bones, I figured I had less than a year to get my ducks I a row before making end Of life decisions. Now I realize there may be many more years ahead of me. I am through crying. Now I am pulling up my drswers, ready to learn from my sisters whohave gone before me, wow. We are never through until we are through.
    2. Thank you for this forum. God bless you each and every one
  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2016

    Nancy! I'm so sorry about your re-dx, but I'm glad you've found us! Yes, I think just about every one of us went through that feeling of doom at first, and I think most of us attribute this website and the women here with helping us realize that life does not end with a Stage IV diagnosis! But even so, I think it takes a few months to make that mind shift to living with mbc. You're very recently dx'd. Give yourself some time to adjust. And wow, I'm impressed that you even skimmed 472 pages of this thread!

    Silvia, no, Tamoxifen, as far as I'm aware, does not impact your immune system. I never took it b'cuz I was post-menopause, and I'm sure others can chime in with firsthand experience and any SEs to watch for. But I don't believe it affects your immunity, although it's always wise to be prudent about hand washing, avoiding people who are ill, etc., when our bodies are already dealing with mbc.

    Yikes, Patty! That's some snake!

    Kaption, you've probably already looked this up, but here are some warning signs of a DVT. http://www.healthline.com/health/how-to-tell-if-yo... The other possibility that comes to mind is a Baker's cyst. Here's info on that. http://www.mayoclinic.org/diseases-conditions/bake...

    Dee, glad you're feeling better!


  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2016

    Nancy, accepting this diagnossis definately takes some time. I felt like I was in shock for about 3 months. Couldn't concentrate, looked at other people and thought " they don't have cancer and I do". I have widespread bone mets in almost every bone in my body. My onc told me to not focus on how many bones were involved and said that it doesn't matter treatment wise, if one bone responds to treatment, they all do. Sure enough I am NED after 13 months. You will learn more here then any doctor can ever tell you

  • Kaption
    Kaption Member Posts: 2,934
    edited July 2016

    Thanks, Deanna. Yes, I poured over all the dvt sites and Faslodex sites. I would have called the nurse, but the worst time was late Friday night. I knew if I went to urgent care and they heard "stage 4 cancer...Faslodex" I'd be in the hospital. So, waiting it out till Monday morning- keeping an eye on it and not sitting for too long. We are only 5 minutes from an ER (I've used a couple of times!). Proving my DH's saying 'the older you get, the closer you should be to the hospital." Don't believe it's a Bakers cyst as there is no pain. Fortunately I have an appointment with MO Wednesday.

    Nancy, so glad you found us. As you have already read, there is much support and inspiration here! It's also a good place to vent frustrations. We've all been there! ((Hugs))


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2016

    Wow Nancy, I am impressed that you read all the posts here. I get overwhelmed and have trouble catching up when I am away from the thread for a few days. As you have discovered, there is a wonderful group of people here. It's good to have you join us.

    Patty, That snake -ewwwww! I would not want to meet up with a snake that size.

    Lynne

  • babs6287
    babs6287 Member Posts: 1,619
    edited July 2016

    Lindalou. 7 years. That is just the best news to hear!!!! It's an inspiration to us all!

    Dee. Glad you're feeling better and that your pcp was there for you

    Silvia sorry you find yourself here but you couldn't have found a better group to help you through all the challenges of this dx

    Patty. That snake is scary to me!

    Nancy. Wow you read all the posts! Impressive!!!

    Happy Sunday to all

    Babs




  • Kendrasue
    Kendrasue Member Posts: 107
    edited August 2016

    Hello, dear ones. Happy and sad as I catch up as well as I can reading everyone's posts. Results from my six-months bone and CAT scans show no progression and still only in bones, TMs in normal range, slightly less activity than six months ago, everything fine in the BC blood tests. My onc said my treatments (Arimidex and Xgeva) are still working. However, the radiologist observed a cyst on my kidney, and my onc wants me to call the hospital tomorrow to make an appt. for an ultrasound. She said the risk level is low, so I should not worry about it.

    I read about Rachel1. I don't want to believe it. I don't know if anyone remembers, but she was the reason I wrote my first post here. She wrote about a horrible physician at Dana Farber who terrified her out of her mind. I had just recently been terrified out of my own mind by that same DF physician, and based on that I had some private messages back and forth with her. When she was staying with relatives in MA, I told her about my wonderful local oncologist, and invited her to my city in Western MA to go and see her. It was too far away for her. I'm having a lot of trouble with this.

    This month, July, is my 24th month out from my diagnosis. August begins my third year.

    Sending love and all good and positive healing thoughts to each and every one of you, dear ones.

    xo,

    Valerie

  • annieoakley
    annieoakley Member Posts: 653
    edited August 2016

    Kendrasue, so nice to hear from you and your CT results are really good! Try not to worry about the cyst on the kidney, I'm sure the ultrasound will clarify that it's nothing worrisome. I do remember you corresponding with Rachel1 and I'm so sorry you're having a hard time with it, it is very sad. You did your best to try to help her and I'm sure she appreciated that. I'd like to know what this Dana Farber physician is doing to traumatize his patients like that, that's terrible. Sending you big hugs, Annie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited August 2016

    Valerie, Woohoo for the CT scan, TM, and blood test results. The fact that it is still only in your bones with no progression is great news. I have a cyst in my kidney, too. I have been seen regularly by a urologist for other issues, and I was told that the cyst was nothing to worry about. It will be checked at my next appointment with her. It seems that it is not uncommon to have them. Hopefully, yours will be harmless, but it is good to have it checked. I remember the posts that you and Rachel had about that DF onc. At the time I had noticed that the onc was going to be a presenter at last October's MBC conference at DF, and I was thinking about attending but would have avoided his presentation based on those posts. I understand why her loss is difficult for you, but it sounds like things got bad for her fairly suddenly. It is hard for us to lose our friends here, and we need to grieve those losses. I do miss them. I try to move forward and appreciate each day I have. I think that is what they would want.

    I will have my PET scan early tomorrow morning, and I have to admit that I am nervous. I know I will deal with whatever happens, but this has reminded me of all the harshrealities of our disease.

    My DH will have cataract surgery tomorrow afternoon. I know it sounds odd, but it is nice to deal with a normal issue rather than all the dramatic medical developments we lived through during the past year.

    Have a good night.

    Lynne

  • Kaption
    Kaption Member Posts: 2,934
    edited August 2016

    Prayers for a good scan, Lynne.

    I know exactly what you mean about the cataract surgery. When my DH had it a couple of years I was sort of "happy" to be the waiting for him and getting to help him a bit. We laugh about how much time he has spent in doc waiting rooms, ERs, and hospitals for me. Not to mention all the caregiving.It was nice to be needed for once.

    Best to you both.


  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited August 2016

    Hi all,

    I am pages and pages behind. welcome to the new folks and hi to everyone else! Sorry to be so out of touch; my travel schedule for work has been insane. Lynne - good luck with the PET scan.

    NED anniversary people (such as ChrissyB)...Congrats! And congrats on all the good scan results.

    Momallthetime- you and Dani have my prayers.....as do all of you.

    Miss you all, and hope to get caught up and back to participating soon.

    Sending hugs,

    Terre

  • Kendrasue
    Kendrasue Member Posts: 107
    edited August 2016

    Good morning, Lynne. Just woke up, and am thinking of you. Waiting to hear that your PET scan is over and behind you. I just feel that your results will be fine! Sending my love. xo

    Valerie


  • Kendrasue
    Kendrasue Member Posts: 107
    edited August 2016

    Dear Annie, so good to hear from you. Thank you for the welcome encouragement, and sending you great big hugs, too.

    xo,

    Valerie

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited August 2016

    Kendrasue- I go to Dana and have the most genuine sincere encouraging MO. I also took the news of Rachel1 hard.

    Congrats on the great scan results.

    Hugs Carol

  • silviah
    silviah Member Posts: 35
    edited August 2016

    hi again,

    thanks everyone for welcoming me. I, too, wish we were "meeting" under different circumstances. I have a few questions (when I can't sleep at night, which is often - my mind is going)...

    I started taking tamoxifen Friday - I have had no SE - is that normal?? I feel like I'm sitting here waiting to be sick.

    Every little ache makes me think that I have cancer everywhere. Is that common?? My PET scan was clear except for an area at my T12.

    If there is bone pain from the mets, does it go away if the tamoxifen is "doing it's job" ??

    I'm sure I will have more questions..........



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