Stem Cell Transplants

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited February 2010

    Maryiz--I'm interested in what recent articles you are referring to.  I know that City of Hope in California was doing clinical trials with stem cells about 5 years ago but they stopped the trials and concluded that there is no difference in outcome between Stem Cell and high dose chemo. As far as I know, only MDA is continuing the stem cell trial for IBC. 

    Thanks, Carole 

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

    I like my ONC But i'm kinda frustrated. everytime i mention stem cell he says the support (this is not verbatum) just isn't there. I guess what i'll do is get my facts from these bigger treatment centers. I will keep watching for Dorothy's journey with her stem cell. So Dorothy First of all i want to thank you for taking that stem with your Onc And heres to GREAT success. Take care Heather

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

    I like my ONC But i'm kinda frustrated. everytime i mention stem cell he says the support (this is not verbatum) just isn't there. I guess what i'll do is get my facts from these bigger treatment centers. I will keep watching for Dorothy's journey with her stem cell. So Dorothy First of all i want to thank you for taking that stem with your Onc And heres to GREAT success. Take care Heather

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

    Dorothy there is a gal on the stage four thread that went thru a stem cell transplant many years ago

    her name is kathy36. if it's okay i'll asked her to bump over here.  She is so wonderful. We have pm'd one another. She is very helpful. I believe she17 years out. which to me is very exciting.

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2010

    Carole, I believe MD Anderson, NIH and perhaps Duke are doing stem cell transplants.  These articles I am referring to are current, that is, January 2010.  The biggest fear with stem cell transplants is damage that can occur to other organs, but with that said, we have newer drugs to combat graft versus host disease.  I do know people it has worked for. Here is the site.  If you have any other questions, let me know.  Maryiz

    http://www.sciencedaily.com/releases/2010/01/100112122427.htm


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  • cwrightrn
    cwrightrn Member Posts: 242
    edited February 2010

    Thanks so much Maryiz for the article link.  Very interesting.  My Aunt had a different type of BC than I do and had a stem cell transplant at UCLA over 10 years ago and was NED at the time of her death (unfortunately suicide).  I also talked to someone who had one done at City of Hope during their trial and are doing well.  Thanks again for your quick reply

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2010

    Carole, It is kind of hard for us to balance all of the therapies available, not knowing which ones will work.  The lure of the stem cell transplant is that you COULD, NOT WILL, but could get a complete response.  It is a very tough treatment, but is tempting.  I asked my onc. about it and although he didn't do cartwheels, he did say he has some women who have done it and remain cancerfree.  I think the more they do, the better.  Maryiz

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2010

    Anyone hear from Dorfar?  She has not been seen for awhile.  Please chime in, Dorothy, if you feel up to it, I am hoping everything is going well with the transplant.  Maryiz

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited February 2010

    To anyone thinking of going to MDA for stem cell, you might want to check out  http://www.hospitalityapartments.org/   Cam and I stayed there.  It allows up to 3 months free housing only blocks from the hospital.  MDA even provides a shuttle that runs every 15 mins, or its only a 10 min walk to the Mays Clinic.  All utilities, utensils and linens provided.  Min stay is 2 weeks, no kids and a caregiver is required to be with you. 

    Most of the guest are stem cell transplants so a lot on first hand experience

    Herbie, 

    Cam is now in Hospice,

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  • Maryiz
    Maryiz Member Posts: 975
    edited February 2010

    Herbie, sorry to hear about Cam's move to hospice.  Thinking of both of you.  Maryiz

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  • dorfar
    dorfar Member Posts: 52
    edited March 2010

    Hi Everyone,

    I'm sorry I have not posted in a long time. I was released from the hospital about 5 days ago. I underwent 4 days of high dose chemo 2 days off and then had my stem cell transplant which was basically just an infusion. I was in the hospital for 19 days. The chemo was really strong and I had a lot of nausea and vomiting. The mouth sores I developed put me on a morphine pump for a few days. They did go away pretty quickly once my counts started to recover it was amazing. I'm not going to sugar coat it, it was really hard. I have been down here in Houston since the beginning of December and the time has felt like an eternity. It is so hard being away from home that long and then being so sick on top of it.

    I'm still pretty weak and have almost no energy. I'm trying to walk daily and not focus too much on how weak I feel. Its super frustrating because I just want to wake up and feel better but its a process and my patience has worn thin.

    The next step is to continue to get stronger and I have a bunch of tests late next week to re-stage the disease. (pet scan, ct scan) I will also have my port pulled soon which I'm excited about.

    I don't mean for this post to sound like a downer. While this experience has been really difficult it has given me a new appreciation for life in every way. I feel very positive about the outcome and that the IBC will stay in remission. I know being down here at MDA is the best possible place I could be. Everyday I count my blessings and I thank the Lord for getting me this far.

    Thank you all for the posts and all the positive messages. I'm so thankful for finding this group of wonderful ladies who know what its like to live with something so huge. If anyone has any questions about the stem cell transplant I would be happy to answer.

    Dorothy

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  • lorieg
    lorieg Member Posts: 802
    edited March 2010

    Dorothy,

    Thanks for posting, and I am glad you are out of the hospital and doing ok.  I hope you get stronger each day!! 

    Hugs,Lori

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  • lorieg
    lorieg Member Posts: 802
    edited March 2010

    Herbie,

    Keeping you and Cam in my prayers.

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  • Maryiz
    Maryiz Member Posts: 975
    edited March 2010

    Dorothy, sooo glad to hear from you.  I have been thinking of you often, knowing you probably felt poorly.  Please keep us informed.  We love these uplifting stories.  I am sure you will gain strength each day.  Maryiz

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited March 2010

    Dorothy,

    I pray you regain your strength back very soon.  I know it was a very long time for you to be feeling so sick.   I pray that this gives you many years left of a full life.  My prayers go out to all of you with ibc.

    Terri

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  • dorfar
    dorfar Member Posts: 52
    edited April 2010

    Hi Everyone,

    Well I have been back home in CT for two weeks. Its really great to be back home. I'm still recovering slowly. My counts have been pretty low but I have not needed a Neupogen shot in two weeks. My doctor says that it will take about 6 months for my counts to get back to normal so I need to be patient. I've been trying to get plenty of rest and stay hydrated. My appetite is still pretty poor but my nausea has improved. Its all a process but its hard when all you want to do is get back into the swing of things.

    I'm happy to report that my scans were great. Before my SCT I had a node lighting up behind my colar bone as well as thickening of the skin on the IBC side. Now the node is no longer lighting up and the skin thickening has decreased and the rash (my skin mets) is completely gone. My CTC were also zero which is great. Dr. Ueno at MDA was really pleased with the results. So right now I'm considered NED. It feels really weird typing that almost scary. Even with all the good news I have been feeling a little down. I still have a lot of precautions and I'm also just really scared it will come back. I really try not to think about it otherwise it consumes me.

    So for now I have weekly blood draws with my onco to make sure I'm ok and in about two months I will need to go back to MDA for scans. My main goal is still to avoid infection and try to stay as healthy as possible.

    Thank you so much for all the well wishes and prayers. I really appreciate all the outpouring of love and support!!

    Dorothy

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  • lorieg
    lorieg Member Posts: 802
    edited April 2010

    Thanks for the update, Dorothy.  I hope you continue to get your strength back and stay well.  Awesome news about the scans!

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  • Maryiz
    Maryiz Member Posts: 975
    edited April 2010

    Dorothy, so glad you are home.  I think it is natural to be a little down, especially when you feel lousy and I am sure all you want to do is resume living.  This whole disease is emotionally and physically a shock to the system.  Keep us posted on how you are doing.  NED is awesome.  Maryiz

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  • zabeth101280
    zabeth101280 Member Posts: 1
    edited May 2010

    I have triple negative adv breast cancer, with skin involvement as well. When you went for the stem cell treatment, were you in remission at the time? And now? Did cancer recur while in treatment? How long were you in Texas? Did your insurance pay for any of the stem cell treatment? If not how much did you pay out of pocket? ANd finally, who was the doctor you were working with at MD Anderson? A breast oncologist? sorry for all the questions

    Have you ever had Zometa treatment? It can prevent and treat bone mets. Triple negative breast cancer commonly recurs in skin and bone. I did it monthly for six months, then quarterly for a year. Now I do have bone mets so I am back on it monthly. 

    I'm about to start a trial for women with inflammatory breast cancer/recurent to the skin. It involves a cream, Ubiquimon, four days out of seven, and weekly Abraxane infusions for up to three months. My cancer is progressing very quickly. I was on a parp inhibitor trial for the past few months, meant to resolve triple negative cells up to 75% of the tim, but if didn't work for me.

    Warmly, Elizabeth. 

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited May 2010

    Elizabeth--I PM'd you but forgot one thing.....I googled the cream you are on and it says its an anti-wrinkle/ antioxident cream.  Do you have any links or more info on the cream?  Thanks.  There is a cream that you can get from Germany (the Dr has to get it)....I think its called Miltox or something like that and that's the only cream I've heard of for skin mets...

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  • dorfar
    dorfar Member Posts: 52
    edited May 2010

    Hi Elizabeth,

    When I went in for the transplant my skin mets were almost gone but still present. I did not have any kind of recurrence while undergoing stem cell transplant. Im actually about three months out from the transplant and am preparing to go back to TX for the three month scans. I am nervous because I've been feeling some pain in my collar bone on the ibc side and am scared it might be a recurrence. I guess I will find out in two weeks. I was in TX for about four months and my doctor is Dr. Uneo. He is a stem cell doctor who also works in the breast clinic. My insurance did pay for the transplant and my out of pockets expenses were my living expenses for the four months.

    I have not ever been on Zometa. I do think my oncologist did mention that as a possibility for me going forward, Right now I'm not having any kind of treatment. I'm just being monitored as I am still recovering from the transplant. My counts are still pretty low.

    I'm sorry that the Parp was not sucessful for you. I get it!! I live in such fear that the stem cell transplantdid not work, especially now that I have these pains. I really just try to stay focused on the outcome I want - NED- but some days it is so hard. I really hope that the cream is successful. Please let me know if you have any questions and keep us posted on your progress.

    Dorothy

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