The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 135. Re: Where are all the MM'ers?
    brixonhastings Registered Users
    Currently Being Moderated



    Kris and I were worried about you!!!  It was so good to hear from you!!!


    Thank you.


    If you are up to it, please go to my caringbridge web site.  Type in,    susanstransplant     ,  exactly like that and then your personal password.


    It would be nice for you to give me your opinions.


    It is unbareable to be the the hospital for 17 days!!!!  I am so so sorry.  Just horrible. I was in the hospital for Cytoxan and then again for VP16 chemos and it was a nightmare.  I am so glad that this is behind you now.  Not me!


    Very interestring that your Dr. wants to put you on maintenance Thal.  Don't forget Revlimid is a better tolerated Thalidomide.


    Take care,  I hope to have my second harvest tomorrow.  Melphalan on Aug. 11th, transplant on Aug 13th.  I do not stay in the hospital.  I will live in an apt. near the hospital and wear a fanny pack, pump thing and go to the clinic every day for maybe a month until my levels are safe for me to go home.


    What a crazy ride this has been!!!!


    Take care, Susan

  • 136. Re: Where are all the MM'ers?
    Jozee Registered Users
    Currently Being Moderated

    Hi everyone my name is Joanne and I live in New Jersey


    I was justed diagnosed with MM last week and very upset, I m 50 years old and in good shape , they found out by a routine blood test, I m having all the test done and doctor told me at I m 15% and cells are smoldering, I still really dont understand whats going on just starting to research.  Right now there is no treatment for me, I just want to know if that true or not.  I want this cancer out of me I cant deal with it.

  • 137. Re: Where are all the MM'ers?
    darnold Registered Users
    Currently Being Moderated

    Hi Joanne.  I'm sorry to meet you over multiple myeloma. Finding out at first that you have cancer, and a blood cancer that no one has heard of, is devastating at first.  I went through the equivalent of the grieving processs -- angry, sad, resigned.  When I think about it, I'm still sad, mainly over my shortened life expectancy and it's effect on my daughter, who is 22, very close to me, and way too young to lose her mother.  But I don't focus on the negative and quickly became very determined to get into remission and have remained very positive.  My daugher is also very determined and very positive.


    Like you, I'm relatively young to have myeloma.  I'm 52 and was diagnosed this past May, after months of pain in my ribs.  I thought I had an autoimmune disease, but it turned out to be myeloma.  Mine is more advanced than yours, so I've been undergoing treatment -- taking medications -- since then. I've also reached out to my friends, my work colleagues, and my synagogue community.  The support has been incredible.  The amount of positive energy and prayers has been amazing, and I think, helping me to get to remission.  So please reach out and don't face this alone or just with a few family members and friends.


    As you've probably found from your research, multiple myeloma is treatable but not curable at this time.  There is a tremendous amount of research going on now into treatments, bone marrow and cell compositions, and, especially, genetics.  The knowledge about multiple myeloma is so much better than if we had been diagnosed 10 years ago.  It is possible that there will be better treatments and even a cure in our lifetime.  Keep your fingers crossed!


    Please ask your doctor about managing your calcium levels.  One of the things multiple myeloma does is leach calcium from your bones, so it is important to achieve a balance of calcium -- keeping a good level but not taking in too much calcium.  It is also important to drink a lot of fluid to keep the calcium and your kidneys flushed.  I learned this the hard way when I was first diagnosed and hadn't yet had a chance to talk to my oncologist about managing the myeloma and ended up in the hospital for several days with a calcium spike.


    Also, please talk to your doctor about vitamins and supplements.  Some are good for you, some are neutral, and some are not good for you.  For example, my oncologist recommended against taking the new wonder berry, acai, because there is no evidence that it helps with multiple myeloma and no completed research yet into whether it can be harmful (e.g., interfere with medications).



  • 138. Re: Where are all the MM'ers?
    Jozee Registered Users
    Currently Being Moderated



    Thank you for your advise, but I still cannot accept that I have multiple Myeloma and  I don't want anybody to know I have it.  I have no pain but since finding out my spirit left my body.  I work out 3 times a week and now my husband has to force me to go to my spinning classes.  I don't want it!! I can't accept it!! I have two daughters ages 20 and 16 and I want to see them get  married and have children of their own.  All my MRI's came back ok and I just had x rays taken. I just can't sit and wait doing blood tests every month to see if I need treatment.


    What are you doing about it now? How many doctors did you see?  and  how are you doing on the medication


    Thank you


  • 139. Re: Where are all the MM'ers?
    darnold Registered Users
    Currently Being Moderated

    Hi Joanne.  I hope in time that you will be able to accept that you have myeloma and find out what you need to do to take care of yourself.  I also hope that yours stays quiet.


    Finding out that you have it sucks.  Like you, I would love to be able to dig every last cell out of my body.  But I've accepted that I can't.  I am determined to make as much progress into remission as I can, take care of myself, and live as long as I can.  My daughter is a similar age to your oldest.  She has told me that I have to live to see my grandchildren, which I plan to do.  Of course, that requires that she have a boyfriend first......


    In retrospect, myeloma was probably attacking me two years ago.  I found out then that I was anemic for the first time in 20 years, but it's not unusual for a 50-year-old woman to become anemic.  This past spring, I had increasing pain in my ribs.  After ruling out a muscle pull, I thought maybe I had autoimmune-related inflammation, but it turned out to be myeloma. I knew the rheumatologist from my synagogue, and he consulted some of the other doctors in the congregation in making a recommendation for an oncologist.  Trusting their combined knowledge, and liking the oncologist, I didn't consult other oncologists.  I do a lot of reading and ask lots of questions, which my oncologist encourages, and I'm comfortable with the treatment I'm getting.


    I have damage to my ribs on both sides.  I am fortunate that the myeloma has not attacked my kidneys, my large limbs, or my spine.  I've been taking oral medications since May. From the blood and urine protein tests, I know that I am responding well and quicker than expected to the medications.  There are some side effects, but they are all manageable.  Next week, I'll have a bone marrow test, which will tell me how much the myeloma has been reduced and how far into remission I am.  At that point, I will probably get a referral for chemo and a stem cell transplant.


    This is life-changing, Joanne, and as I said, it sucks, but in some ways, it is liberating.  Since I got past my initial anger and sorrow, I have been very positive.  I belive that you plan the hand your dealt, and I plan to win this one.  I've done a lot of thinking about what I want out of life and how I want to live my life.  I am determined to get into remission and do the things I've always wanted to do but always put off.  Work will absolutely no longer be the reason for putting off the things I want to do.  And I will be there for my daughter, just like I have for the past 22 years.  My biggest sorrow is that the time I have with her has been shortened but I will make the most of what time I have.  She is the love of my life, and I will do whatever I have to do to get into remission to be there with her.



  • 140. Re: Where are all the MM'ers?
    HeatherLouise Registered Users
    Currently Being Moderated

    In reading your reply to a different question I was struck by some similarities we share, although you are further along than I am. I am new to this community and made an error in replying so that it went to someone else instead of you. Hope it works this time.


    I was diagnosed about 8 months ago presenting with compression fractures. I was 40 years old and 7 months pregnant at the time. I was told I had stage IIIB MM.  I was able to start with Dex during the pregnancy. Once the baby was delivered I began five cycles of Velcade and Dex. It worked right away and brought my numbers tumbling down. By the end of May I was technically in remission and had a stem cell transplant with my own cells. I'm closing in on the 100 days post transplant and will get news about the status of my remission next week after bone marrow biopsy, 24 hour urine, and multiple blood tests.


    I read you had a three year remission, that is wonderful, and are heading in for a second transplant. I sure hope they got enough cells the first time so you can skip the whole collection process.


    I'm curious about what post transplant treatments you used while in remission. My oncologist has mentioned Revlimid, but we haven't made any decisions yet.


    Also what type of bisphosphonate treatment are you using? 


    Thank You.

  • 141. Re: Where are all the MM'ers?
    ArizonaGirl Registered Users
    Currently Being Moderated

    Hi Heather,


    Sorry I haven't been around as much lately but I'm really glad you posted.  I am amazed to "meet" someone else close in age with the same diagnosis as it is so rare in people our age (as you know).


    We do have a lot of similarities, and I don't meet many people "like me".  I'm so sorry you have to deal with all this, but it is nice to talk to you.


    I'm so glad your treatment has been successful and I hope you get great news from your 100 day work-up!!  Crossing my fingers for you...please let me know!


    Yes, I had a 3 year remission and it was so fabulous I almost "forgot" I had myeloma.  When I did this 3 years ago maintenance wasn't as common so I actually had no maintenance drugs.  This time will be different and I will get Revlimid.  I think at our age the doctors want to be a little more aggressive and studies are showing the Revlimid can prolong remission significantly.   


    Fortunately I did not have bone issues.  I only had 1 lesion and it has healed, so I have never needed biophosphonates.  My issues are with kidney failure. 


    Please keep me posted on how you are doing...sounds like you have done great so far!!  Best of luck to you and thanks for writing.



    PS Where did you have your transplant?  I will be at a different center for my 2nd one...

  • 142. Re: Where are all the MM'ers?
    Walt Registered Users
    Currently Being Moderated

    Hi Kris,


    I'm guessing from your post that you have relapsed.  If so, you were in remission about as long as I was.  What type of kidney issues do you have?  Will dialysis be required?.


    My MM went active last September and took my kidneys out with it.  I'm on dialysis three days a week.  It's a drag, but it's keeping me alive.


    I'm back on Thalidomide and Dex and it's bought my plasma cell count down to 10%  and my light chains have come way down.  I'm only seeing my onc every two months, so it's looking pretty good.


















  • 143. Re: Where are all the MM'ers?
    ArizonaGirl Registered Users
    Currently Being Moderated

    Hi Walt,


    It's great to hear from you!  Glad you are responding to the thal/dex.  Sounds like things are good except that darned dialysis.  I'm so sorry you have to do that...I know it takes up a huge amount of your time.  I was ready to start dialysis when I was first diagnosed (that's how they found my myeloma was my kidneys were failing), but Velcade brought my kidney function up just in time that I didn't have to do dialysis. That must be such a pain to have to go 3 times a week, but I guess we do what we have to do to stay around.  I'm glad to hear that overall you are doing better.


    Yes, I have relapsed but my doctor caught it very early, before it affected any organs and started treatment right away.  I am on my 3rd cycle of Velcade/Revlimid/Dex.  I've been really sick from the chemo but forgot I had some Zofran on hand.  When I started the Zofran I felt so much better!  I am able to still work, although I can't really do much else.  Grateful that the drugs are working though.


    My dr. is scheduling me for my 2nd auto transplant in Nov. after I finish 2 more cycles of the VRD.  Here is the part I can't believe....after transplant, he wants to resume the 3 drug combo right away!  That's a lot of chemo!  I didn't do so great on the last transplant and can't imagine how I will start chemo right away after.  But he is being aggressive and trying to give me as many years as possible so I am grateful.  Just trying to psych myself up for transplant #2.  I said I would never do another transplant, but we do what we have to to live (just like you and dialysis).


    I'm just so grateful we have these great drugs that weren't even available a few years ago. 


    Great to hear from you and glad for your good report.  I wish you the best on your journey and please keep me posted.  Oh, my husband got me an iPad for my birthday that I take to all my appts.  Books, games, internet, movies, can do everything on it...really helps pass the time!





  • 144. Re: Where are all the MM'ers?
    HeatherLouise Registered Users
    Currently Being Moderated



    Hello again. I'm glad my message made it to you. I'm trilled to hear that your remission was so positive, and at the same time so sorry that you have to head back for a second transplant. I had mine at the University of WIsconsin Hospital in Madison. If you can say something like a stem cell transplant is a good experience I guess mine was. The nurses were great. The side effects were really awful but only everything that was expected - no surprises. I was in for 16 days and lost 20 pounds. I go back tomorrow for the 100 day results. Will let you know.


    Why are you going to a different center this time? Have you moved or did you have a bad experience? I hope you're feeling well today. My back usually feels the best in the morning so I'm starting today feeling good.



  • 145. Re: Where are all the MM'ers?
    ArizonaGirl Registered Users
    Currently Being Moderated



    So glad you had a "good" experience with transplant.  I had a rough time, but I'm hoping it's a little easier this time.  Not sure if knowing what to expect is a good or bad thing.


    I really hope you get great results tomorrow!  I must admit for the 3 years following transplant I didn't feel like a person with myeloma.  It was so nice not to have to take all the drugs and to get a long reprieve from treatment.  I hope you have the same experience!  It was definitely worth doing the transplant to have that time in remission!


    I have a new hematologist now who is fabulous and he is at Mayo Clinic, so I will go to Mayo Hospital this time.  It's also much closer to my house than my previous transplant center. 


    Glad you are feeling good today.  I'm so sorry you have bone pain issues...I think that would be really difficult.  I hope you get great results tomorrow and please keep me posted.



  • 146. Re: Where are all the MM'ers?
    Walt Registered Users
    Currently Being Moderated

    I just got an I Pad and I'm  looking forward to passing some time while hooked up to the machine.


    A question...I haven't been on the board for quite awhile and I've forgotten how to post., and I can't find anything on the board that would allow a post.  I'd appreciate a little help.

  • 147. Re: Where are all the MM'ers?
    ArizonaGirl Registered Users
    Currently Being Moderated

    Walt, I'm so glad you got an iPad!!  I have found it really helps to pass the time! Hope you love it.


    As far as the posting, it's been a while for me to and I had to look around.


    I am assuming you are talking about posting a new topic?  If so you go to the main thread page of whichever thread you want to post in (ie Living with Myeloma).  On the right hand side you will see "Actions" and under that is "Start a new conversation" on that.


    Hope that's what you meant and hope you are having a good day!



  • 148. Re: Where are all the MM'ers?
    chicagorose Registered Users
    Currently Being Moderated

    Hi everyone, I'm new here and I just found out on February 29, 2011 that I had Multiple Myeloma. After some tests, I was told that it's smoldering multiple myeloma. I've heard that I'm pretty young to have this; I'm 44, will be 45 in August, and I was completely crushed when I heard the diagnosis. How does everyone deal with this diagnosis? I feel so alone with this.

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