The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 105. Re: Where are all the MM'ers?
    misskitkat Registered Users
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    Hi, all,

     

    I'm so thankful to Susan, Kim, and Lois for posting their experiences -- best wishes to all of you! Also to Walt and Kris for your words of wisdom :-)

     

    I was wondering if it would be possible to split this topic up into separate threads -- it maybe would be a little easier to follow each person's journey through their SCT?

     

    Buck is doing okay, he is on his break from chemo, and will have his monthly blood test June 8.  He did have another hospital stay for an infection, which was kind of scary.  Also will have a follow-up endoscopy (by a different GI specialist!) to make sure that his ulcer is healing and there isn't "anything else".  So we still have that hanging over our heads.

     

    I was reading an article about a new type of dialysis that was used in a small trial in England for MM patients with kidney failure.  It was able to help a significant number of patients to get off dialysis.

    It also mentioned the statistic that the average life span for someone with MM on dialysis was only four months.  Yikes -- I guess I had read that before, but had blocked it out of my mind.  Buck has been on dialysis since September, so I guess that he is beating the odds already.  I did ready that kidney failure does not rule out a SCT.  We are interested in what the oncologist recommends after the next lab results.

     

    Hope everyone has a wonderful June!

     

    Kat

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

    Hi Kat,

     

    Great to hear from you!  Thanks for the update on Buck.  Sorry he is continuing to have problems with infections. 

     

    That's great news about the trial.  I hadn't heard that about life span for someone with MM on dialysis.  That IS scary.  But I would question if a person is getting treatment that is helping wouldn't that make a difference and extend life span?  I'm SO glad Buck is defying the odds!  I have kidney issues as well (although not to the same extent as Buck).  I will be interested what his onc. recommends after his next labs.  I sure hope you get some good news!

     

    I think your idea of individual threads for those going thru transplant would be wonderful!  It would be so much easier to follow them.  So Susan, Lois, and Kim I hope you will all start threads...

     

    Best wishes to all!

     

    Kris

     

     

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

    Susan, thinking of you and hoping everything is going smoothly.  Any word on when you will begin the pre-transplant testing? 

     

    Kim, hope Russ is continuing to have a smooth time of things.  How is he doing?

     

    Lois, I know you are in the midst of the hardest part of transplant.  Hoping engraftment begins soon so you will begin to feel better.  Thinking of you and hoping to hear from you when you are feeling up to it.  Hang in there...

     

    Hey Walt!  Haven't heard from you in a while.  Hope you are busy enjoying your grandkids and reading your Kindle.   Read any good books lately?  When is your next onc. appt? 

     

    Thinking of all of you and wishing you the best!

     

    Kris

     

     

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

    Hi Kris...things are sailing along smoothly. I'm still feeling real good and just returned from a trip to Ohio.  It was my middle daughter's 50th birthday and the whole family got together to celebrate it.  Her kids put together a great party and we had a lot of fun.  The trip back to Virginia was rain, fog, traffic, etc.  We were completely worn out by the time we got home.  We're just not real good road warriors anymore.

     

    As if MM and prostate cancer weren't enough, I had to have a skin cancer removed from my forehead.  Luckily it was a basal cell and was just an office visit to get it removed.  The surgey was just above my right eyebrow and caused a lot of bruising around my right eye.  It looks like I've been in a bar fight.

     

    I'm still reading a lot and am geting ready to dig into the biography of "Lawrence of Arabia"  I just finished a trilogy of the Civil War.  So many significant battles were fought in this part of Virginia,  it made a very interesting read.

     

    I get all my blood work and Zometa done the 11th of this month.  I will see my onc for the results the first part of July.  I'm not too concerned.  Hopefully the light chains will stay down and I can continue to avoid more chemo.

     

    That's one thing about MM.  Many cancer patients in remission dread thinking about if the cancer will return.  With MM you know it's just a matter of when, so it's something I know will eventually happen and do not spend too much time worrying about it.  Besides, after having 72 great years I figure I've had more than my nickels worth.  Not everyone gets to stick around long enought to see their great grandchildren.

     

    Hope this finds you and yours doing well.

     

    Walt

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

    Hi all,

     

    Yes, it would be good to separate out all of our transplant journeys.

     

    I will really  need your help, support and fabulous invaluable knowledge.

     

    I may start whinning.  You have all seen me be so positive, well, you just may see a new side of me!!!  ha.

     

    I will still have a sense of humor though.

     

    I am going to have a transplant blog on caring bridge,org,.  I think called Susan's Transplant.  I don't know how much energy I will have to email.

     

    Kris,  I don't know if I told you,  after I was accepted to "Stanford University"  well the hospital anyway,  I became scared.  Lois and you had such difficult side effects.  I talked to my transplant Dr. on the phone the next day.  I told her about heart attacks, diabetes, bad mouth sores, nausea etc..  She calmly said, "Susan, I don't foresee any problems with you."  Okay,  I believe her!!!!  She was able to calm me right down.  I just love her personality!!!  Works for me!!!

     

    I have done, my skeletal survey, blood work( all normal, creatinine 1.2) they can use my recent bmb thank God,I have pulminary function test tomorrow, and echocardiogram will be next Thursday.

     

    Kris,I live 20 minutes drive north from the Golden Gate Bridge.  My health plan will pay $100 an night for me, us, to stay in a hotel, apt. if I have consecutive appts..

     

    I start at Stanford 1 1/2 hr drive on 6/15.  They do 2 mobilizations so the whole "process" takes 3 months.  Two months before transplant then my husband Tim and I need to live near the hospital for 1 month.  Did you all have to wear a hepa filter mask!!!  Bald with a big mask, what a beauty!

     

    Kris, if you are comfortable, I can send you my treatment calender to your personal email.  I think that you would find it interesting.  There is so much I can't rewrite it.

     

    I will going to the onc. dept here near home daily, weekends too!

     

    so far,  I am very tired and have about 6 good energy hours a day. Then I crash hard.  I am off my meds so I am very happy!!!

     

    I too, would like to know how Lois is doing.

     

    Thanks again for caring,

     

    Today I am going into San Francisco to the Museum of Modern Art to see the Georgia O' Keeffe and  the Ansel Adams exhibit.

     

    Sunday I am having 9 girlfriends over for lunch by the pool, and 7 little dogs, for my Yorkies ( Katy) 7th birthday party!!  Obviously,   I need a distraction from all this medical stuff.

     

    Take care,  Susan

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

    Susan,

     

    So great to hear from you!  Wow, things are moving along quickly.  That's great your bloodwork is normal and you are off treatment for a few weeks.  That's so great that you are continuing to have fun and enjoy life...Happy Birthday to Katy. :) 

     

    I don't blame you a bit if you "whine" a little during transplant...it's not a fun process and we don't expect you to be upbeat 24/7.    We will be here to offer support throughout.  Please post the link to your caringbridge site when you get it up and running...I will want to follow your journey and cheer you on.  I would really like to see your treatment calendar...you can email me anytime at grandinetti1@cox.net

     

    I think you will do great thru transplant!  I had my head buried in the sand during the process and I think if I had done a little more research and talked to more people (like you have) I would have been more prepared.  Knowledge is power and you are definitely knowledgeable!  One thing I can say is I never regretted doing the transplant.  As you know I have had a wonderful 2 years (it's my 2 year anniversary of my auto 6-7) on no drugs.  I never imagined such great results.  The few side effects I had were only temporary and well worth it to feel so great for the past 2 years!  Sounds like you have a fabulous dr. who will take great care of you.  I found everyone at my center to be so nice and I really felt "safe" there.  I hope you have the same experience.

     

    Thanks so much for the update...Hope you enjoyed the exhibit...sounds fabulous...I love art museums...I've been to a bunch. 

     

    Best Wishes!!

    Kris

     

     

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

    Walt,

     

    So glad you are having fun with your family and enjoying life!  What fun the 50th birthday party must have been.  I think it's great you were able to make the trip to Ohio.  I get tired from trips and I'm only 40.  

     

    I'm sorry to hear about the skin cancer!  I think 2 cancers was more than enough, Walt..you surely didn't need a 3rd.   Wouldn't be surprised if you end up being written about in a medical journal someday.   Just glad the skin cancer was a relatively easy fix.  Just hope you can continue going without chemo...it's so great to not have to think about treatment for a while.  You have such a great attitude..that's great you can not worry about the myeloma and just concentrate on enjoying life.  I have had a challenge with that over the past few years but I am doing better at that now.  Talking to you and others on this board has helped me.

     

    It's great to hear from you and I'm glad you are feeling well!!  Try to steer clear of those "bar fights". :D

     

    Best Wishes!

    Kris

     

     

  • 112. Re: Where are all the MM'ers?
    wdrowns Registered Users
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    Hi Kris...where did everybody go??  Seems like a very quiet board.

     

    Walt

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

    Hi, Walter and everyone else:

     

    I've noticed how quiet it's been, but I haven't really had much to say lately.  After sixteen heinous days in the hospital,  I'm now home and finally beginning to feel human again.

    I don't have the energy to do much chatting (or posting), but I hope I'll soon have something to contribute.  Suffice to say, a stem cell transplant is nothing to sneeze at!

    Lois

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

    Hi Lois!  SO great to hear from you...welcome home!  I appreciate the post because I know I wasn't up to posting for quite awhile after transplant.  It's hard when there is nothing really good to say.  I sure hope you start feeling better and a little stronger each day!  Are you still going to the center daily to do your counts or get fluids?  Are you able to eat?  I understand if you aren't up to answering.  Just if you feel like it I am interested in how you are doing.  Sure sending good thoughts and best wishes your way...I remember how hard it was!  Hang in there.  Hope you are getting lots of rest and being well cared for!

     

    Kris

     

     

     

    Hi Walt!  It HAS been quiet around here...I have been checking ifor updates but haven't really had much to say lately (which I guess is a good thing).   I have just been trying to enjoy my remission time and spend some time away from oncologists for awhile.  I actually got a 4 months reprieve from the onc. which is a record for me. Sure hope you are still feeling well and enjoying spending time with your family! I hope you have a nice Father's Day!!

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

    Hi Lois...it's good to hear that you're home and feeling a little better.  At least the worst part is over and the transplant was successful.  Kris and I can identify with the  "sixteen heinous days in the hospital". 

     

    Keep on getting better and post when you feel up to it.

     

    Walt

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

    Hi Kris...just got back from seeing the onc for my three month workup.  All is well.  Light chains have risen a little bit, but not enough to consider putting me back on chemo.  I'm still in "smoldering myeloma".  I see him again in September and will be getting another BMB and skeltal survey.  So. all in all things look pretty good.

     

    Walt

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

    That's great news Walt!  At least you are not back on chemo and can continue with a relatively "normal" life...so glad to hear it!  And that the dr. doesn't need to see you back for 3 months is great.  The longer we get to be off of "treatment" the better...no side effects to worry about that way.

     

    It is time for my yearly skeletal survey as well.  I'm not in a big hurry to get it done.  My myeloma has affected my kidneys more than the bones but I know these yearly tests are "important". :-)

     

    Hope you and everyone here have a wonderful 4th of July!  Looking forward to the long weekend!!

     

    Kris

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

    Hi everybody.  I just joined the group.  I am new to myeloma, having been diagnosed on May 1 -- a day that I will no longer enjoy.  I'm a 52 year old single mom, and this hit me, like I'm sure it hit all of you, totally out of left field.  Mydaughter just graduated from college and, luckily, found her dream job, so this is not where I expected to be at this time in my life.  I had been dealing with pain in my ribs all spring, finally went to the GP, then to the rheumatologist, then to the oncologist.  Do not pass Go.  I'm currently on thalidimide and dexa and getting Zometa drips once a month.  So far, so good.  Early indications are that I'm responding -- protein levels going down in a urinalysis. Tomorrow, I hope to get back the first results of the more extensive blood tests.

     

    Thanks for all of your posts, especially about the stem cell transplants.  This is so helpful to prepare me for what yet lies ahead.

     

    Dana

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

    Hi Dana...welcome to the board.  Sorry to hear about your diagnosis, but it sounds like all the right things are happening.  I was also on thal and dex and had excellent results with the regimen.  In three months the treatment bought me down to a level that made me eligible for a stem cell transplant.  I still get Zometa every four weeks.

     

    I had no protein in my urine, so it sounds like you may have a different type of myeloma from mine.  All my protein shows up in my blood.  It's amazing how so many people have different symptoms of myeloma.  Mine started off with an intense back pain.  Am MRI showed a plasmacytoma on my sacrum.  Further tests confirmed myeloma.

     

    I had two weeks of radiation, three months of chemo, and then an auto stem cell transplant.  The stem cell transplant put me in remission, and I have been in remission for almost three years.  No treatment other than Zometa.  The stem cell transplant is no fun, but it's very effective.  I was almost 70 when I got mine, but I went through everything pretty well.

     

    Please ask any questions thaty come to mind.  The folks on this board have "been there, done that" and will be glad to share our experiences.  Please let us know how the blood work came back.

     

    Best of luck,

     

    Walt

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