Stem Cell Transplants

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dorfar
dorfar Member Posts: 52
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi Everyone,

In about three weeks I will be heading down to Houston (MDA) to begin the stem cell transplant process. Just to give a little history, I was diagnosed with IBC in April 2008. At that point it had already spread to my lymph nodes. I treated successfully with 4 rounds of ACT and then 4 rounds of Taxol. I had a mastectomy on the left side only, recovered and completed radiation in Feb. In March my Onco wanted me to do some maint. chemo since I am triple neg. I started Taxotere weekly with Avastin every other week. Well in May I developed a skin rash and it turned out to be skin mets. All my scans and tests came back clean with the exception of the skin biopsy.

My doctor wanted me to get an opinion from MDA. I went and saw Dr. Ueno. He felt I would be a good candidate for stem cell since the cancer was aggressive enough to reappear while I was on Chemo.He felt I should be really aggressive with my treatment plan. In order to get the stem cell I had to be in remission. So I went home and started new chemo of Carbo and Taxol. The skin mets cleared up fairly quickly. I just finished up my 8th cycle of chemo and am now getting ready to go Houston for the stem cell.

I was wondering if anybody has done the stem call transplant? How did it go? My doctor says some really do really well and some don't do so well. I guess that is just like anything though. I would love any feedback about stem cell or MDA and Dr Ueno.

Thanks

Dorothy

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Dorothy, stem cell transplants have emerged with a fresher face after falling out of favor in the 90's.  A lot of it had to do with the candidates chosen, who were not strong enough to go through it.  I know there is another forum called Stem Cell Rescue, and you will find some ladies who did them years ago.  Just remember that the conditioning is very different now.  Are you doing an autologous or an allogeneic transplant? If you can let us know how you are doing, we will be thinking of you.  Maryiz

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Bonnie, thanks for the posting, it was really helpful.  Do you know anything more about Deb, as far as her stage at the time of transplant and whether she used her own cells?  Thanks, Maryiz

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  • dorfar
    dorfar Member Posts: 52
    edited November 2009

    Hi Bonnie,

    Thanks for sharing about Deb and Bonnie. I am really hopeful that this stem cell transplant will put me in the same category as those women. I'm doing an Autologous transplant. Its part of a clinical trial going on at MDA. I have to say that I'm not too worried about being "sick" becuase I feel like I have been through so much already. Its the distance (I live in CT) that is stressing me out and having to rely on other people. I know that probably sounds crazy but I'm somewhat of a control freak.

    I will be sure to keep updating on my progress and the procedure. Thank you for the well wishes!!

    Dorothy

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Hi, ladies, can anyone tell me if the transplant will be covered by your insurance or the clinical trial picks up the cost?  I know it's very expensive.  Thanks. Mary

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  • germangal
    germangal Member Posts: 97
    edited November 2009

    All,

    I don't know much about her dx, but Sue in Mass had stem cell replacement at NE Med Ctr some time ago, I think it was 7 years ago. I don't see her posting here, so I'll send her an email & ask if she would relate her tale for us. She leads our NE IBC Foundation, with the purpose of getting the word out, so I'm sure she will share.

    Karen

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Thanks, Bonnie, and Karen for the information.  It would be great to get more information from anyone who has done a transplant recently, although the news of Deb doing it 17 years ago sounds awesome to me.  I was just wondering if they changed the pretransplant chemo much and side effects.  Still wondering who pays for it.  Thanks everyone.  Maryiz

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  • Jollymom
    Jollymom Member Posts: 37
    edited November 2009

    Hey ladies! Hi Maryiz!

    I too have seen Dr Ueno.  As of my last scan 2 weeks ago I am stable and my onc at MDA wants me to have the transplant at the end of the year if I remain stable.  The insurance factor depends on your insurance.  They have people up there that haggle with the insurance for you.  The procedure is $200,000.00 even tho its a trial. Now you see he told me that I had to have shrinkage but not remission, to have the procedure done.  I'm scared to death about having it.  I have 2 small children and they are both in school so I'm scared that with destroying my immune system that the kids could  bring something home and  I'll end up in the hospital.  Myhusband and I will go up and talk to Dr Ueno again after my next scan in 4 weeks. 

    Good Luck Dorothy!  Let me know when you start your journey down here.  I love MdAnderson.  They have been very good to me and my family!

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Jollymom, I am so glad that you are stable as of your last scan.  I am sure MD Anderson will advise you on what to do as far as catching anything and having two small children.  I believe you are in great hands with Dr. Ueno.  I have been reading the articles he has published.  Are you using your own cells or donor cells?  I hope you don't mind the questions.  I have to say, I am excited for you.  Keep us posted on how you are doing.  I wish I could help you.  I will be thinking of you and your family.  Maryiz

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  • dorfar
    dorfar Member Posts: 52
    edited November 2009

    Hi Ladies,

    Thank you so much for the replies. I'm leaving on Sunday for Houston. I will be down there about 3 - 4 months so I'm feeling a little crazy right now. My insurance will pay for the entire procedure so I am fortunate. I was told that I would be in the hospital for about 17 days straight for the transplant. As far as my staging the doctor told me since the skin mets is a local recurrence I would still be considered 3b. Overall I feel really positive about the procedure but I am scared of infection as well. I just hope it goes by fast and that I do ok.

    I will be sure to stay in contact and let you all know how its going.....Dorothy

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  • Maryiz
    Maryiz Member Posts: 975
    edited December 2009

    Dorothy, I wish you the best.  You are in good hands.  We will be thinking of you.  Stay strong.  On to healing and looking forward.  Maryiz

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  • dorfar
    dorfar Member Posts: 52
    edited December 2009

    Maryiz & Bonnie,

    Thank you so much for your well wishes and prayers. Seeing your messages has really lifted my spirits today. Dorothy

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  • leisaparis
    leisaparis Member Posts: 587
    edited December 2009

    good luck & god bless

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  • lorieg
    lorieg Member Posts: 802
    edited December 2009

    Dorothy,

    I just read through this thread for the first time.  Best of luck to you!  Prayers!

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  • Elzcollins
    Elzcollins Member Posts: 1
    edited December 2009

    Dorothy,

    I also met with Dr. Ueno about a stem cell transplant. I am stage 4, bone mets, and it is under good control. I have finished 5 rounds of FAC, PET shows a response.  The issue now is with my health insusrance. I have Blue Cross/Blue Shield. Would you mind telling me your insurer.  BS/BS initally denied it and we are now in the ;middle of an appeal. I hoping to get it approved so I can have the transplant process begin in January.  Any info you would have in the health insurance area would be appreciated.

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  • dorfar
    dorfar Member Posts: 52
    edited December 2009

    Thank You everyone for all the prayers and well wishes. I have been down here in Houston for almost two weeks. I have been undergoing all kinds of tests and I had the bone marrow aspiration. I am being admitted today to begin high does chemo for five days. I will then be released and getting Neupogen everyday to boost my counts so they can begin to collect the stem cells. Its all kind of overwhelming but i just want to get it over with.  MDA is really a great place and I feel like I am in the best hands, but I am still really homesick.

    Bonnie, thanks for passing along the info from the gentleman with mulitple myleoma. It makes me feel better.  I hope I do just as well.

    Elzcollins, I have Blue Cross and the plan I'm in is called Lumenos. I have it through my employer. It is really good. They have covered everything so far. With regard to the stem cell I had to undergo a review process but i was fortunate because they did approve it. The financial advisor at MDA did tell me that it does not get approved a lot for breast cancer but that they would help appeal if it did happen. I wish you the best of luck with the insurance. Let me know if I can answer any other questions about it.

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  • NYmom60
    NYmom60 Member Posts: 44
    edited December 2009

    Dorothy, 

    Hope you are doing well with the high dose chemo. Will be praying for you.

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  • Maryiz
    Maryiz Member Posts: 975
    edited December 2009

    Dorothy, I am thinking of you and hoping you are managing the high dose chemo and able to proceed to get those nice pristine stem cells. Can't wait to hear you are better and able to return home.  Maryiz

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  • Maryiz
    Maryiz Member Posts: 975
    edited December 2009

    Dorothy, I am thinking you must be done with your chemo and building up those red blood cells.  Hope you are doing well this Christmas.  Maryiz

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  • lorieg
    lorieg Member Posts: 802
    edited December 2009

    Dorothy,

     Thinking of you and praying all is going well.  Lori

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  • dorfar
    dorfar Member Posts: 52
    edited December 2009

    Merry Christmas! Thank you so much for all the well wishes. High Dose chemo was pretty tough. I was really nauseated the entire time, but its now behind me. I'm still really weak, I've been sleeping away most of the days. The nasuea comes and goes but I think I'm starting to get a little stronger. Things are going on schedule. I've been geting my Neupogen shots everyday and I'm hoping my counts start to rebound just so I can feel half way normal. I am overwhelmed but trying to focus on one day at a time and not "how am I going to finish this?" I keep thinking that this time next year this will all be a distant memory :)

    On a side note, the people down here at MDA are all really wonderful. So many people are here and away from their families and the staff and community make you feel like you are where you are supposed to be :)

    I will post my progress as I am able.

    With Much Love...Dorothy

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  • lorieg
    lorieg Member Posts: 802
    edited December 2009

    Glad to hear from you, Dorothy!  Keep up the good fight!

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  • cheers247
    cheers247 Member Posts: 270
    edited December 2009

    Hi Dorothy!  I've just read throught this thread, sorry I didn't find it sooner.  I am very intrested in SCT.  It sounds like the high dose chemo was pretty rough!  I'll be thinking of you,  much love!  Jessica

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  • Maryiz
    Maryiz Member Posts: 975
    edited December 2009

    Dorothy, so glad to see you are able to post.  Yeah, the chemo is behind you.  I understand the transplant itself is less obtrusive.  Thinking of you and can't wait to hear you are feeling well. Maryiz

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  • Maryiz
    Maryiz Member Posts: 975
    edited January 2010

    Dorfar, I know you probably can't post, but just hoping you are getting stronger every day.  When you can, check in.  Maryiz

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  • dorfar
    dorfar Member Posts: 52
    edited January 2010

    Hi Mary,

    Thanks for checking in with me :) I've been doing ok. The nausua has been with me for awhile. I was undergoing twice daily Neupogen shots to boost my counts so they could collect stem cells. That was hard but thankfully on Wednesday they finished collecting all the stem cells they need. It looks like late next week I will be admitted to the hospital to do another round of high dose and then they will give me back my "scrubbed" stem cells. I'm a little worried because the last round of high dose was pretty rough but at the same time I'm anxious to move forward. Being homesick has been half the battle so I'm looking forward to getting it over with. I will try to check back in soon.

    Dorothy

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  • Maryiz
    Maryiz Member Posts: 975
    edited January 2010

    Great to hear from you, Dorothy.  Hang in there. You are getting closer to your goal.  We all want you back in Connecticut.  Maryiz

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  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Hi Dorothy, I just want you to know that I'm thinking of you everyday, and following your progress!  Much Love to you!  Jessica

    (((((((Dorothy)))))))

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  • cheers247
    cheers247 Member Posts: 270
    edited February 2010

    Hi Dorothy, I'm still thinking of you!  Much Love, Jessica

    www.caringbridge.org/visit/jessicam

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  • heatherpalmerton
    heatherpalmerton Member Posts: 2,247
    edited February 2010

    Hi Dorothy I sure hope it's okay to post here. I was very intriged by your ONC suggesting stem cell. I am stage 4 and I also have scleroderma. I have researched stem cell transplant. My onc says no. I begged to differ. I sure hope the very best for you and that all is going very well.  Thank you for listening. Heather

    cheers247 I see your on a vaccine trial. I also hope the best for you too. I think we are so close to nipping this cancer to the curb. Best of luck to all Heather

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2010

    Heather, I, too, think we are closer to nipping this cancer to the curb.  Some recent articles have alluded to stem cell transplant being appropriate in some circumstances.  It also looks like many vaccines are in clinical trials.  

    Dorothy, hope you are doing well.  We are thinking of you.  Maryiz 

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