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Thread: new member diagnosed with multiple myeloma

  1. #1
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    new member diagnosed with multiple myeloma

    hello,

    I am a 39 year old mother of 2 boys that was diagnosed today with Multiple Myeloma. I had severe rib pain that started a few months ago. My back always hurts. I had lumbar fusion 11 years ago for lumbar instability. I have had anemia for over 4 years. I am now in the staging process. I had a lytic lesion on one of my thoracic vertebrae that was biopsied last week, the result of the biopsy was positive for MM. I am having a PET scan this week and a bone marrow biopsy on Friday.
    I am hopeful that this is contained to the thoracic vertebrae and can be treated with localized radiation. The doctor feels that it is probably past that stage and has talked about treating with chemo and a stem cell transplant.
    My question is about the calcium level in the blood. Mine has risen dramatically in the past 3 weeks from a 9.7 to a current 12.8. Did this happen to anyone else?
    I see some people talking about it being too late to have a stem call transplant. What would determine that? Also, is there anywhere on this site that talks about breaking the news to their children? I'm hoping that if I just have to undergo radiation that they won't need to know. Any thoughts on this? They are 9 and 18.
    Thanks!

  2. #2
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    Hi,
    I am so sorry to hear that someone so young has MM.
    My mom who was 72 passed away 3 weeks ago from MM althoug she was supposedly responding to Chemio(VELCADE + THALIDOMIDE) and having high Calicum levels is typical. She had anemia & bone tumors on her femur, which after biopsy confirmed MM.

    In your case talk with your oncologist to see whether a stem cell transplant is still possible as it is more efficient than just radio + chemio.

    MM is quite vicious and as you have noticed with anemia and hypecalciema, you will have certain symptoms which may affect your family like: losing your appetite and therefore alot of weight, being listless, having little or no energy to move about, local infections, etc. Maybe your eldest should know that you have a serious ailment and he can give support and feel useful.
    I was in the denial phase for a long time and I pushed my mom to eat, to walk , to take vitamins to fight....while she was so weak that she wanted to sleep all day. I personnally believe that knowing and being prepared for the care you will need after each chemio, will be beneficial for your children.
    Last edited by Yegil; 01-23-2014 at 12:10 PM. Reason: spelling mistakes

  3. #3
    Hello,
    Sorry to hear about your diagnosis. Let us know how your treatment is going. I was treated in 2001 (Stage 1 when diagnosed). I hope you have had that talk with your children, esp. the 18 year old. My kids were 5 & 7 when I was diagnosed, so I know the difficulty of the situation. Your 18 year old especially needs to know everything; your 9 year old needs to know you are sick but maybe not the seriousness of the disease at this point.

    I want to encourage you to embrace the stem cell transplant route. You have your kids to live for, and it is the best treatment available. It is difficult, but I have met many people who have had good results. I have been disease free since treatment in 2001. I have never once regretted my treatment decisions. I have had the good fortune to see my kids grow from little ones into college age. I hope you will also be blessed with many years to come.

    Don

  4. #4
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    When I was diagnosed at age 56, my kids were 31 and 26. I also have grandkids, 6, 4 and 2. But because my kids were older, I believe the news may have affected them more because they knew how active I had been with them growing up, and they had watched my energy level decreasing and the joint pain increasing. But I was glad that I told them, even though my daughter burst into tears. The grandkids were less dramatic but they asked questions and I did my best to answer them. When I went for my stem cell transplant, the clinic provided coloring books depicting the process, so my grandkids and I read the book together and colored some of the pages. After the transplant, we talked about "Granny's" hair loss (I took my wig off). Now that I'm in remission, I really am glad that I included the family during the process.
    God bless and be with you.

  5. #5
    2001? Wow, thatís a long long time. Iíve always wondered how long I was carrying this around prior to diagnosis. Because the symptoms are not extreme or severe, but they rather seem to be cumulative. When I was diagnosed, it did come out as a surprise for me: stage III multiple myeloma, chronic lymphocytic leukemia. The average survival time is usually put at 4 to 7 years, so Iíd say youíre doing great so far! My compliments. (This reply directed at Don; sorry if this newbie posted in the wrong spot!)

 

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