Bone Mets Thread
Comments
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Thank you all for your comments and wisdom. This is such a great, caring group. I hope when my mom feels better and is up to it (she cries daily about cancer and dying) that she will join the group. For her first round of bc she had no support, no one to discuss it with, etc. I remember her telling me her own mother told her to "just get over it" when she was upset about the cancer and treatment.
Anyhow, a couple more questions... I live far away but can access some of her medical records on line. What do I look for in the basic blood tests? I see the results but don't know what they mean. Also In the bone scan report what to look for?
And a more philosophical question I guess...I don't want a debate about religeon. I am Catholic but not too religious. My kids do attend Catholic elementary school so they can learn more than the little I remember (and they can celebrate Christmas and Easter). How do you reconcile the terror, agony of bone cancer, treatment crap you go through (I.e. why would God let this happen to good people) with the belief of Heaven when the suffering ends? Not sure I can put into words what I mean...how can there be a God that allows this but I still believe in Heaven.0 -
Dear Kitty:
I am also a Catholic. I can't offer much insight into the mystery of suffering, but I like to think that those who suffer much have been chosen to take part in Christ's suferring.
Take care,
Laura
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Kitty, I'm not sure how old you are, but I'm in my mid 50s. Over the years, through all different kinds of circumstances, God is what helped me through, and helped me keep my sanity.
I have't ever gotten angry at God about getting a stage iv diagnosis. God is not "santa claus". He doesn't exist just to make sure your life is always sunshine and roses, blue skies and happy happy smiles. We don't sit on God's lap, tell him what we want and he delivers if we're on the good list. Some people, and I'm not saying you, but I know some people personally, who think believing in God is going to prevent bad things from happening to them. That's not what God is all about. But they will be all about believing in God, talking Him up big, and then *bam* some tragedy strikes, and they put all their anger in God, how did He let this happen? They are 'fair-weather' Christians, ones who don't feel like riding the storm out when the big waves hit.
My marriage is almost 25 years old, and has seen its share of ups and downs. I think a relationship with God is like that, too. Sometimes I feel closer to God than at other times. I still always believe. These days, I find myself wanting God to be present in my earthly life in a realistic way, and not in some unattainable heavenly atmoshere above. I want Him, need Him, to be walkin more right by my side, and in my prayers and conversations with Him, I tell Him that.
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Hi Kitty,
I am so sorry to hear about your mom. One small correction that might help you understand her condition. She does not have bone cancer. She has breast cancer that has metastasized to the bones. They will continue to treat it with drugs for breast, not bone, cancer. Let us know, specifically, what you're looking at on the blood tests ( calcium, creatinine etc) and we may be able to help but remember that we are not doctors. As to the issue of G-d and suffering, there is a classic book on this, When Bad Things Happen to Good People by Rabbi Harold Kushner. Well written and relevant to people of all religions. Lastly, pain management to key to dealing with bc. Some of us with bone mets have little to no pain, others have considerable pain. A pain management specialist should be consulted. They can work wonders.
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Kitty, can't help with religion as I am a long since lapsed Presbyterian. However in the bone scan what you are looking for is the comparison with the last scan. The report should comment on that point -- more here, less, there, etc.
That will help you see if the treatments are working.
second the suggestion about pain management if your mother is suffering. Best of luck to you and your Mom.
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Kitty3BS--I'm so sorry that your Mom is in pain. I hope she can find some relief through a pain management specialist. Hopefully, the radiation treatments will kick in for her. I have bone mets in my spine but, my pain originates from slipped vertebrae near my tail bone (My cancer is located a little higher.) I've been blessed because I have no pain with my cancer.
Unfortunately, the pinched nerve causes off and on pain in my legs. At first, it was pain in my left leg. Now, it is in my right leg. It's a kind of numbness that tingles then shoots pain from toes to buttocks. It follows no pattern, it's completely unpredictable & frustrating! Most narcotic type drugs make me very sick to my stomach. For some reason, I can take Vicodin so, I take it, along with Lyrica and Alleve. I've had several kinds of injections to my spine & some have helped for a short time or, not at all. No luck with the pain patches, either. I've never had pain like I have now. It can be very depressing so, I find anti-depressants to be helpful. AS FOR RELIGION--
I've tried out about a dozen denominations in Protestant Christianity (I was raised Lutheran). I'm 60 years old so, I was into the Christian Charismatic movement in the early 70's. (Sang in a choir that traveled to sing in different churches during summers). I learned a lot from my experiences and have been a believer in Christ, since childhood. Plenty of bad things happen to lots of people, from all walks of life.
I feel I've had my share of bad things, as well. I have been angry and I have lots of questions for God. I trust, that someday, all the reasons will be revealed. The Bible says that, in this life, we see "through a glass darkly." I believe that. We don't see the big picture and must trust the wisdom of God. A book, "Making Sense OUt of Suffering" by Peter Kreeft helped me. Also, C.S. Lewis's "The Problem of Pain." The whole cancer experience is hard to make sense of--I hold on to the love of friends and family, the love of God, & I put my trust in doctors/science (when I have to)! Faslodex and Zometa have kept me stable for almost 2 years. (Never had a port, never had chemo). I hope for many more years--FOR ALL OF US! (((((hugs)))))
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Kitty,
I have bone mets from the start. I believe as the Divine MRSM believes. I've had questions in my life about the very same topic you talk of "how can God allow good people to suffer" I've read so many books and found comfort and understanding in a few, which helps me understand the Bible better. If you are Christian, then you know what Jesus went through for us. His suffering and pain covered our sins so that we would be heirs to God the Father.
The only explanation I can come up with for why bad things happen to good people is God giving each of us free will. I know heavenly intervention happens at times to protect us.
Life on earth is not our only life, with Christ's sacrifice, we will be living a eternal life with God and meet our treasured family members who have gone before us.
Keep your faith strong and personally ask God whatever questions you have. God will answer you if you keep close to him.
Terri
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My mom always tells me that God never promised that there wouldn't be trials and challenges in life. He did promise to walk along side us through it all. I don't believe God "lets" bad things happen. They just do.
Your mom is lucky to have you. Hopefully she will be comfortable enough to join us soon. We would love to meet her.0 -
I try to remember that this is not our only life like ibcmets says. I also think we have a purpose for this life and maybe when we have to leave sooner than we like, we have fufilled that purpose. Also, when you look at the big picture, the difference between 40 years and 80 years is like a second.
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If you believe in reincaration, we all live many lives, some shorter and some longer than others. I agree that the difference between 40 and 80 years in eternity is very small. This life is precious however, and we need to live each day to the fullest and try to learn the lessons that we're meant to learn sothat we can move on. Perhaps the illness is part of the lessons in this life. I am not 100% a believer in reincarnation, but i have to say that I am definitely open to the concept.
Kitty I know it's difficult to see someone you love so much in pain. I went through that with my mother who died 30 years ago from lung cancer. Perhaps some of the lessons in this life for you are to take care of your mother. I fel that I was meant to take care of my mother. Your mother is very fortunate to have you in her life. I feel that way about my husband. If I didn't have him on this journey, I don't know what I'd do. Anyway, it would be a much different journey.
Kaymic you are right. God never promised that life wouldn't be difficult. Jesus suffered for us and we are perhaps taking on burdens for others. When I was first diagnosed in 1997 I used to ask, "why me?" Over the years I started shifting my thinking and felt, "Why Not Me?"
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Hi Pearlady, I actually do believe in reincarnation and love to read all kind of books about that and astral projection and the old Seth books! I read that we all choose our life when we are in the spiritual world. My nephew used to say he chose his mom, and he was only 3 when he said it. I was so excited to hear him say that! I asked him when and he said a long time ago, when I was still a spirit. Another thing he used to say was that he used to live in the big city with his mom in an apt that was on the corner of a building, and ever since he was little he loved going to "the big city" which is downtown Harrisburg.
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Hi ladies, just a bit of good news that for the first time in 18 month there were no new lesions on my bone scan ! However, I kind of wonder how they can tell because it literally is in every bone one would expect but I welcome the good news. My liver looked better also. I have been battling congestive heart failure and I have been so tired; hoping that it soon resolves. Think it came from a medication they gave me and it just is going to have to work its way out of my system. My bones are just so sore; even if our dog jumps up on my thigh it makes the bone hurt. That I don't understand,
Religion is a very personal thing for each of us. For me, I believe Christ is my personal Savior and my life has not been easy in many ways but yet in other ways I have been blessed far beyond what I have deserved. God has always been faithful. Have I questioned, wondered if at times it was all real, yes. I think we all do - that is why as a Lutheran I was taught in prayer to say help my unbelief.
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yay Nan...congrats....
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When I was first dx it crossed my mind to question God Why Me!!! But before it fully formed in my mind I said Why Not Me!!I have been through a lot in my lifetime, I lost my sister, father, mother and brother and they were all I had no other family except my 3 kids. Even going through all that I ask God to give me the strenght to handle what was happening and he did. I will fight this BC battle until I can't anymore. I have a wonderful husband, children and extended family and I am content with my life, and loving every minute that I am Blessed with.
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Yay Nan! That's great news!
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Very good news nan!!!
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Nan congratulations on the good news! What treatment are you on?
I agree that religon is personal and different for each of us. Although I sometimes get angry and frustrated with the whole cancer thing, many other times I realize how fortunate I've been. No one told us that life would always be easy and pain free. Certainly not God. I've had bone mets since 2001 and am still here to talk about it. Also, I still have a full time job and am very blessed that I have such a great onc. I try to stay focused on the positive.
I have recently been on TDM1 as the treatment I had before, Perjeta/Herceptin was killing me with the big D. For the first time in two years I am not in the b-room constantly. It certainly makes all this easier to take. Also, my oncs office called yesterday to tell me that after 2 treatments with TDM1, my TMs have come down significantly. So I am so happy with the good news, but sometimes I still have that worry creep in that asks me how long this will work and if the next treatment won't be more difficult. I know, we have to live each day and not be so focused on the futuure. But it's not always easy. For me, that's where the spirituality comes in.
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Naniam, so glad to hear the good news!
Leah
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Pearlady so wonderful that the TDM1 is showing such fabulous promise for you.........and very glad that it is much easier on your GI system.
Love n hugs. Chrissy
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Hi. Just asking how long everyone has had bone mets? Some women live for 20 years?! Hugs, Renae
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Hi Renae, I'm just over four years with bone mets.
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Renae I have had bone mets since 2001. I have felt well and virtually pain free the entire time. My onc was joking a few weeks ago and told me that I'd be around for a long time. I grab on to any positive that I can. I have also heard that people can live 20 years with bone mets and that many times the mets stay confined to the bone. SO hoping that is the case for all of us.
Chrissy Thanks. It's amazing but I'm actually now able to plan an evening out and not worry that I'll be in the ladies room the entire evening. I'll take a bit of fatigue any day over GI issues.
Hope everyone has a great weekend.
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Nan, great scan results! Pearlady, congrats on your Women's Room Liberation!
Renae, it will be 6 years in August for me. (I hope I'm not getting too far ahead of things.)
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I love you guys! What a beautiful morning in Chicago, oops the clouds have just rolled in. Not to worry, I plan on living a long time. Thank you for your encouragement! Hugs, Renae ( I live in Australia but I am back home visiting family, had a wonderful trip out West, you girls in CA, AR are so lucky!)
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Renae,
Glad that you are enjoying your trip. Yes, I love living in CA but have always wanted to see Australia. Will be going to Australia and NZ around Christmas time this coming year. Can't wait! Hope the rest of your visit is fabulous.
Caryn
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I am only 14 months in with bone mets. Everyday I pray it stays in the bone. I read a book by Katherine Russell Rich who had bone mets for 17 years. She just died a year ago this past April. And now I can add pearlady to my list of inspiring people. Thanks for asking this question Renae.......we need success stories to give us hope!
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One year since last chemo. No progression and still only in the bone. TM's are good. My onc says he will just do bone scans and tumor markers unless I have pain that doesn't go away. I haven't had any other scans for 18months. He says i am disease free. Oh how I hope he is right.
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Caryn, so glad you are going to New Zealand! I am from there and it is amazing. I hope that one day I will be well enough to go to visit family and friends there. At the moment I can't manage to travel.
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Barb that's awesome!
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Barb that is such great news. So happy for you. So happy to share in this great news.
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