Stem Cell Rescue

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SandyN
SandyN Member Posts: 6
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I am searching for anyone who underwent a Stem Cell Rescue. I was dx in 1997 with IDC with 20 of 22 lyumph nodes positive. I had a mastectomy followed by  FAC chemo then the Stem Cell Rescue then radiatition. 

   I have tried to find another survior every where. I KNOW I can not be the ONLY survior of a Stem Cell Rescue.

  SandyN

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  • London-Virginia
    London-Virginia Member Posts: 851
    edited October 2009

    congrats on being a survivor!

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  • kaitig
    kaitig Member Posts: 21
    edited October 2009

    Hi Sandy - I was dx'd in 1994, Stem cell early '95.  Stage III very high grade, er-pr-.  I had just had a baby.  whatever we did worked - that cancer is gone.  I was dx'd with second primary last year.... had surgery, chemo, hormonal treatment.   Glad you posted, I don't know any others that had it back then. 

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  • SandyN
    SandyN Member Posts: 6
    edited October 2009

    I didn't think I would ever find another survivor.  It feels really good to know I am not alone  Have you found any iother survivors?  I was dx Stage IV back then and they threw everything they had at me (including Tamoxofen even tho I was er/pr negative.  What long term effects (if any) are you experiencing.  I have searched so long to find a survior.  Early on I found a couple of survivors but they died several years ago.  I KNEW I couldn't be the only survivor. I just want to hear everything about you.

    Thank you sooomuch

    SandyN

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  • kaitig
    kaitig Member Posts: 21
    edited October 2009

    It's so good to meet you too.  I don't know any others either, I was in contact with a few from the old CompuServe cancer forum (many moons ago), but they passed away.  I had just moved to Hawaii, had a baby and then was dx'd.  Had my HDC/SCR at City of Hope in California.  Those were the days of throwing everything at it, had aggressive FAC, Taxol, Cisplatin/VP-16/cytoxin, then chest wall rads... and also had tamoxifen for ER-PR-.  Would have done anything else if they had offered.  I do have hearing loss and ear ringing from the cisplatin, and wear hearing aids.  I have some lasting neuropathy from the balls of my feet to my toes.... but I'm so used to it now it seems normal.  I'm living on the East Coast now for the past 10 years.  Once treatment ended, it was hard emotionally... I was so used to fighting it... but got my feet back on the ground.  I still am very thankful I got to go through it.... we are lucky people aren't we.  This time I was dx'd just from a thickening my gyn felt - that didn't show on a mammogram and was questionable on the ultrasound.  My previous history was the only thing that prompted the biopsy.  Times have really changed - no more throwing everything at it.  How are you?!  Did you have your transplant at MD Anderson?  I am so glad we've connected!! 

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2009

    So glad to hear you are both doing well.  Is stem cell rescue the same as stem cell transplant?  Maryiz

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  • kaitig
    kaitig Member Posts: 21
    edited October 2009

    Hi Maryiz - yes, its the same thing.

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2009

    Thanks.  I know there are quite a few women on here doing well. I know Kasey pops in once in a while, she went to MD Anderson and is doing very well 2 years out.  Also, another member here, can't remember her name, will have to look it up, but she is many years out from transplant.  I know they are still doing them and reducing the side effects from graft versus host disease.  Let's hope, they become more mainstream.  I will get back to you on the names, sorry, chemo brain.  Maryiz

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  • SandyN
    SandyN Member Posts: 6
    edited October 2009

    WITH a stem cell rescue first you are hooked up to a mahcine tat removes stem cells from you.  It usually takes about 3 days.  Then yoyr stem cells are treated then frozen.  Then you are pumped full of high dose chemo, about 30 times the normal dose, then you are left like that untill your bone marrow is destroyed.  While you are laying there so weak you can't even raise your head you have a cath because your urine would scald you.  YOU get blood transfusion of red blood cells and platlets to stop the bleeding.  You are in isolation for over a month then they transplant the frozen stem cells.  You stay in isolation untill the stem cells start to mature.  When you leave the hospital you still have to wear a mask because you are still at risk of catching anything and everything bcause you still don't have enough white cells.

      You could liken the process to being in a concentration camp.  Your very life is completely in the hands of other.

     Even when the procedure is over and you are home, it is still in your mind.  You never feel safe again.  All of the other people who had the procedure when I did died.  Then you are also left with 'WHY NOT ME:  You find yourself avoiding any and all cancer patients.  Ah yes, it is the gift that just keeps on giving.

    SandyN

    They stopped doing it for solid tumor cancers many years ago.  It was no more effective than the FAC chemo I had in the first place.

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  • kaitig
    kaitig Member Posts: 21
    edited October 2009

    do you have lasting physical side effects?  Reading your description did bring back memories... I guess I'm pretty good at burying those memories, 15 years sometimes seems ages ago.

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  • SandyN
    SandyN Member Posts: 6
    edited October 2009

    No a Stem Cell Rescue is not the same as a Stem Celkl Transplant.  As the procedure says it is a rescue.  You are left just barley alive for a couple of weeks to totallky destroy your bone marrow.  You throw up geen drugs and you can not control your bowels and your taste buds are destroyed.  When your red count is destroyed you see the walls melting and you can not tell what is real and what is not.  My sisters came in to see me but I told them I was too busy to talk because I was hanging clothes out then I could not talk bevause I was on the phone.  I carried out a full conversation even tho there was no one on the phone.  You look like someone has jumped up and down on you because you are hemmorhing from the inside out.  You have an itch on your nose or mouth but it is not an itch it is blood and then you wait for them to ciome and tranfuse platlets to stop the bleeding.  I could go on and on but I think you get the jest of it.  The nurses  and doctors told my fanilt in advance that they would wonder if it was worth it because it would get so bad.  I told them njot to stop it no matter how bad it got.  I was left with soooooooo many problems that have gotten worse as time has gone by.  It was all for niothing.  I was one of the last one to have this procedure.  Results worl-wide; it was no more effective for solid tumor cancers than the FAC chemo I had firs.t

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  • TOB
    TOB Member Posts: 74
    edited October 2009

    It is my understanding that a stem cell rescue is simply one step in an autologus stem cell transplant using the patient's own stem cells rather than those of a donor. The term "rescue" is used because the patient's own stem cells are removed prior to chemotherapy, treated, preserved and re-infused during transplant to "rescue" the patient's bone marrow and immune system. 

    I have a friend who underwent a stem cell transplant/rescue more than 15 years ago for Stage 3B Inflammatory BC.  The chemo prior to the procedure made her sicker than I thought possible, but she has had no recurrence of her BC.  Her doctors view her as a real success story.

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2009

    TOB, thanks for the information.  Do you know if your friend has had long-term side effects?  I know they are doing stem cell transplants again at NCI, MD Anderson, among others.  So obviously someone believes they will work in solid tumors, but I question the long-term side effects.  Can anyone report back?  Thanks, Maryiz

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  • kaitig
    kaitig Member Posts: 21
    edited October 2009

    maryiz - I can't speak for all protocols... but i have been able to live a productive "new normal" life without major issues.  I know the heavy pretreatment from the first one may have changed the treatment of my second primary.... but ?????  I really think they are learning on us, still. 

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  • TOB
    TOB Member Posts: 74
    edited October 2009

    Maryliz,

    She was one sick puppy, but is very grateful to have survived.  Her kids were only 6 and 8 when she was diagnosed.  Now, they are young adults. She has some neuropathy in her feet and hands and some tinnitus (ringing in her ears), but I think the most serious long term side effect is her PTSD related to nonstop vomiting.  When she gets nauseated or vomits now, she has flashbacks and has to take anti-anxiety drugs. 

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2009

    Thanks, TOB, for your information.  I do appreciate in case I go that route.  Stay well.  Maryiz

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2009

    bump

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  • Jollymom
    Jollymom Member Posts: 37
    edited November 2009

    Hey ladies!I  I know its been awhile since most of you have posted.But I recently saw a doc at MD Anderson who actually wants to do a stem cell transplant on me if my scans on Tues show shrinkage.

    SandyN~When you say all the other patients died, do you mean during the procedure or that their cancer came back?

    He explained it as a Stem Cell Transplant, but your saying thats its a rescue.  Everything you explained as a rescue is what he is calling a transplant.  I'm confused.  Scared to death of this, although it all hinges on my scans on Tuesday.

    He said that I would be given chemo then given Nupergen shots to boost my stemcells then they are taken,  then a week later I'm given the super bad chemo and will be in the hospital for a month. Then as I'm coming up then I'll be given the pristine cells as he called them.  Theres another lady on our stage 4 boards that is having a marrow transplant by the same doctor at Md Anderson, Dr Ueno, its actually a clinicial trial.  Have any of you met him? or know someone who has?

    Thanks in advance!

    Cheryl

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Cheryl, keep us posted.  I am very interested in this also.  I didn't know they would do stem cell transplants if you had other than bone mets.  Is it true that you can have mets to lung or liver to have this transplant?  Thanks for sharing.  Maryiz

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  • Maryiz
    Maryiz Member Posts: 975
    edited November 2009

    Cheryl, I sent you a PM.  Maryiz

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  • dorfar
    dorfar Member Posts: 52
    edited November 2009

    Hi Cheryl,

    I saw your post and I was wondering if you will be going through with the stem cell transplant? I am heading down to MDA in two weeks to begin the process. Dr Ueno is my doctor as well. I am nervous but also anxious to begin. I was diagnosed with IBC 16 months ago and treated successfully. I had a recurrence of skin mets while on some maintenance chemo in May.

    Thanks

    Dorothy

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  • Maryiz
    Maryiz Member Posts: 975
    edited December 2009

    Sandy, would you mind sharing the long-term side effects you have for those of us who are not sure whether to embark on the transplant or not? I am glad you are here to share and glad the transplant worked for you.  Maryiz

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