The Leukemia & Lymphoma Society - Fighting Blood Cancers
1 2 3 10 Previous Next 148 Replies Latest reply: May 5, 2012 7:00 PM by chicagorose RSS

Where are all the MM'ers?

ArizonaGirl Registered Users
Currently Being Moderated

Hi Everyone!  Made it to the new board.  Was hoping to see some familiar faces.  Walt, Susan, Jennifer, everyone, where are you?  Just hoping everyone makes the transition to the new board!

 

Hope everyone is doing well!

 

Kris

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

    I was "lurking" on the old board :-) My husband was diagnosed last September with MM...we live north of Tucson.

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

    It's so nice to "meet" you! Glad to see a friendly face on the new board.

     

    Sorry to hear about your husband's diagnosis.  Is he getting treatment now?  How is he doing?

     

    Welcome and I'm glad you decided to post.   Looks like we are almost neighbors. :)

     

    Kris

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

    He is doing well with Velcade -- his bloodwork has improved significantly over the past three months.  Unfortunately the MM caused renal failure, and he is probably on dialysis for the long-term. Trying to stay positive, though -- we are renewing our season tickets for U of A football

     

    Thanks for the friendly welcome!

     

    Kat

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

    Go, Wildcats!

     

    I actually have several friends who are ASU fans, but I went to NAU so I am fairly neutral.

     

    So sorry to hear about your husband's renal failure!  I haven't "met" too many with renal problems...mostly bone issues.  I have renal problems as well from the myeloma though not to the same extent.  I initially presented with renal failure, which is what lead to them finding the myeloma.  My kidney function went down to 15% and my nephrologist had scheduled me to begin the dialysis process when lo and behold the Velcade kicked in and "saved" my kidneys.  My  kidney function is still low (30%) but high enough to remain off dialysis and I am very grateful.

     

    So, I consider Velcade my wonder drug!  How does your husband do on Velcade...any side effects?

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

    Wow, that it great that your kidney function got better! It is nice to hear positive news, and it gives us some hope. Hard to say if the symptoms Buck has (fatigue, itching, digestive problems, etc.) are from the MM itself, Velcade, dialysis, or a combination of everything including stress and anxiety. It is kind of funny that the nephrologist says "it must be the chemo", and the oncologist says "it must be the dialysis"!

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

    Funny you should mention that Kat, because I've noticed my docs tend to blame the other doc's treatment for things too!

     

    Your husband's symptoms sound like ones I have had that I attributed to the renal failure.  It's so hard to say with something like fatigue though...your husband has so many things going on and any ONE of them could cause the fatigue.

     

    Glad to hear you are both being optimistic though.  I was at the point 2 years ago where my nephrologist called my oncologist and told her she was killing me and killing my kidneys because she couldn't find a chemo that worked.  Ever since then, everything has improved.  I have gone from that to almost 2 years in remission with no sign of myeloma.  ALL my labs are normal (except creatinine which will always be elevated) and my quality of life is excellent.

     

    Sounds like things are beginning to turn around for your husband too.  Glad the Velcade is working and hope he continues to improve!

     

    I will be thinking of you both.

     

    As you know we have some other "regulars" who usually post, but may be hesitant to try out the new board.  Hopefully we will see them soon!

     

    Walt, Susan, Jennifer, etc. where are you?

     

    Kris

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

    Well, here I am.  I think this will be pretty good board, with lots of "bells and whistles" .

     

    I just got back from seeing my onc.  He ran a bone marrow biopsy to see why may kappa light chains were going up.  I was pretty happy with the results.  I have a 10% plasma cell count, which equates to "smoldering myeloma".  Prior to my SCT it was 58%. 

     

    The doc elected not to put me on medication and just keep an eye on it for awhile.   If I ever have to go back on chemo it will be thal and dex.  I'll have to sign another form saying I will not get a woman pregnant while on thal (thalidomide).  At 72 yrs old, that's pretty unlikely.  But it's good for the ego.

     

    Looking forward to seeing some more folks showing up from the old board.  Best of luck to all.

     

    Walt

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

    HAHA!!  Thanks for the laugh Walt!   I forgot about all the legal stuff that comes with thalidomide.

     

    It's good to "see" you here.  It's been pretty quiet here so far.

     

    So glad to hear the good news and that you get to stay off treatment for a while!

     

    Best Wishes,

     

    Kris

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

    Hi Kris, I thought I could find you here:)   I was just thinking of you and hope you are feeling fine! hugs, nicole

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

    Hi Kris, Walt, everyone!

     

    My computer was having problems with this new site.  My husband fixed it for me.

    I am so so so happy to hear that Kris and Walt had good test results.  I have been anxious to hear your results.

    Congratulatons!

    This news made my day!!

    I had my Vel infusion yesterday and learned the my onc will do a bmb on 4/24. He must think that I am ready for my sct.  He does not like doing bmb's.

    He said that I need to have 5% plasma cells to be referred to Stanford.  ( I was dx with 25% in 7/07)  My last Kappa light chains were 1.9.on my last 24 hr. urine.  that was 15.6 when dx. Coming down!! Yea.

    I am trying to get big projects down before the sct.

    My life is centered around my M and the upcoming sct.

    Interesting,  my onc. said that he might use Vel. as a maintenance drug for me.  I don't like Rev. and Dex.  He again mentioned the new version of Vel and Rev. so better is coming very soon.

    I am excited about the upcoming IMF patient and family seminiar in San Francisco this coming weekend, 4/17-4/18.  I will try to get a face to face with Dr. Brian Durie. I am interested in maintenance therapy after sct.

    I will fill you in on any new positive news from the seminar.

    Is anyone else attending?  Please let me know.

    Walt, don't feel bad about the preg. issues w/thal.  I have to get a preg. test every 3 weeks!!! (for my Rev.)   and take a survey from Celgene about my sex life!!!

    I am surprised that your dr. wants to put you back on thal and not a newer version that has less side effects.  Thal really knocked me out!!  It did work for me though.  I was living on the couch and taking a lot of naps.  Rev has been better.  You may want to ask him about this.

    You know how I went to Tahiti in between 4 chemo for breast cancer 4/07, the 3 weeks in Asia 2/08, well now my husband and I will try to go to Vegas right before my sct!!!  When you have M now is the time to life it up!

     

    It was so good to get in contact with you again,

    Susan B-H

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

    Hi Susan,

     

    Good to see you here.  It sounds like you're well on your way to your SCT...the numbers sound good.  Like I told my onc "a stem cell transplant is not something you'd give as a gift certificate".  But the results are so well worth it.  Keep us posted as things progress.

     

    As for the Thalidomide, my onc said I had such a great response to it, and it didn't make me feel real bad, so it sounded like the thing to do.  (Love this spell checker).

     

    Walt

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

    Hi Susan!

     

    So great to see you!  I was worried you got lost in the transition to the new board.  Glad you made it over!  Congrats on your great results!  Sounds like you are close to SCT.  Walt is right, transplant is hard but I am so glad I did it.  I have had almost 2 years now with NO treatment! (turns out my previous light chain levels were just a "blip" and came back down to normal range...I am so thankful).

     

    That would be so amazing if you got one on one time with Dr. Durie!  I, too, would be interested in his take on maintenance after SCT.  Let us know how the seminar goes!

     

    I love that you are taking trips when you can.  I think you have the right idea to live it up while we can.  I love Vegas!  In fact we are flying to Vegas Mon. for my husband's 40th birthday...can't wait to get a way and have some fun.

     

    Thalidomide...hate the red tape involved.  It's worth it though if it works for you (didn't for me).  But the pregnancy tests and 3rd degree about your sex life is a little much (rolls eyes).  Interesting that your onc. is thinking of Velcade for maintenance, Susan.

     

    Hope the BMB goes well...let us know the results.  Are you getting any sedation or just local?

     

    Glad to hear things are going well and glad you are taking trips when you can.  It's so great to hear from you!

     

    Kris

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

    Thank you Kris and Walt.

     

    I just told my husband that I am "hanging out with the two of you who are in remission!!!"  I love it!

    I went on the ancorlist myeloma web list for a while.  It is set up whereby you at least  get 25 emails a day in your mailbox.  Some of the topics are upsetting and I found that by reading them or some of them every morning that I was getting depressed.  Too much Myeloma and too much negativity. I got off that list.

    I have identified with the two of you and I choose to be a survivor

    I am 48, next week I turn 49 yrs old, otherwise healthy.  I choose to have sct, then remission, then drugs if need be, then they will come out with our cure.

    Thank you for all of your support.

     

    Walt,  I am so glad Thal works so well for you.  It was very powerful for me  and worked well too.   I am just trying to keep you up on what's been happening in our M drug world while you are in remission. We have to stick together and keep each other informed.  Thanks for the info on the spell check,  I found it. How was your recent bmb?  Is your hip sore?  I appreciate any heads up on my sct.  I know it will be quite an adventure.  I plan to take it step by step.  There is nothing I can do but just go along with the process. I hear they give you two chemos, the 2nd is called "Obliterating "chemo. Oh my.   I hear that I can only eat boiled or frozen foods, nothing fresh.  Stanford gives you a huge binder of protocol to follow.

     

    Kris,  Have a great time in Vegas!  Your husband is so young,  I am jealous.  We enjoy a casual lower priced Mexican restaurant in the Venetian Hotel along the canal called Canonita ( something like that ).  We also like Sushi Roku at the Ceasers shops area near the main blvd.  More pricey but nice and try to get a upper level booth, Kenji is the manager.  I hope you have good weather.  We like to stay at Mirage and sit by they tropical lush pools. ( I  was bald last time and met another breast cancer bald lady at the pool! ).  We really did not like the Penn and Teller show, FYI.

    I'm sure that you are so relieved about your light chain blip.  I guess we have now learned that this can happen. I will tell you all about what Dr. Durie has to say at the seminiar. Stanford uses a chemo drug called BCNU that I have learned can cause lung damage.  I will ask him what he thinks about this and what he thinks about Stanfords sct program.

    For my bmb, I will take 2 viocodin and an ativan.  The onc., of course, uses a local as he drills into the hip bone.  This will be my 3rd bmb.  I am sure not my last. I have found that another aspect that can be "a pain" is that my hip is sore for up to 2 weeks after the bmb.  They don't warn you about this my husband will come with me, I also have Vel. infusion that day.

     

    Today is Easter, a time of renewal,  Happy Spring.  We will be celebrating with some loving friends.  Life is good. I feel good today!

     

     

    Take care,  Susan  B-H

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

    Happy Easter Everyone!

     

    Susan, I love your positive attitude!  I struggled with that a little after my SCT but now I am actually happier in some ways than I was before...I think because I really appreciate every day now.

     

    Happy upcoming birthday!  I hope you have fun celebrating!  Any plans? I went to Vegas when I turned 40 last July and now we are going back for my husband's birthday.  Some people hate getting older but I loved my 40th birthday because I was just so grateful to be alive.

     

    I have 1 piece of advise on the SCT (not that you asked).   Try to get up out of bed every day while you are in the hospital to walk, etc.  I had some complications with my transplant and was on a lot of pain meds.  I could barely walk without falling over so I stayed in bed except to shower.  Had I been more active I think I would have recovered a lot more quickly.  If I have another SCT in the future, I will be sure to get out of bed more to sit in a chair, walk, even get on the exercise bike a little, etc.  It doesn't take long to lose your strength and it's so hard to get it back once you lose it.

     

    I have some other insights if you want them as you get closer to transplant.  I was very hesitant to undergo SCT bec. I was feeling so great prior to the transplant.  I almost backed out but I am SO glad I went thru with it!  AND the transplant centers are filled with wonderful people who treat you like family and seem genuinely interested in your well-being.  I actually still feel really "safe" and at home in my transplant center.  They take over all aspects of your care, do all the scheduling, etc. so it takes away a lot of stress.  I actually miss my transplant center!  lol They made life so easy!

     

    What is BCNU?  When is it given?  I had Cytoxan 1 month prior to transplant as my conditioning chemo and to release the stem cells for collection.  My high dose chemo was Melphalan, which I think is the main drug given for myeloma.  Cytoxan can be hard on the bladder (I had no issues though) and the heart (I had some issues but am fine now).  Will you have those drugs?

     

    I am lucky in that my doc is AWESOME at BMBs!!  I had NO drugs last time and even drove myself because that's how much I trust her.  She said I didn't even flinch during the biopsy.  It's because I know her really well and she tells me stories and fills me in on her life while she is doing the BMB.  Honestly, it only hurt for like 30 secs. and I was barely sore the next day.  She is only 5 feet tall so she practically has to sit on me to get the sample, but she does a great job. :)

     

    It's great talking to you and Walt because I STILL have not met anyone else with myeloma.  Talking to the 2 of you is the closest I've come.  I've seen a myeloma patient in the distance once or twice, but that's it. lol

     

    Hope things continue to go well for you!  You are certainly responding very well to treatment, which is great!

     

    Hope everyone has a Happy Easter!

     

    Hugs,

    Kris

1 2 3 10 Previous Next

More Like This

  • Retrieving data ...