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AML- prepping for SCT

StayStrongShan
Posts: 1
Joined: Feb 2016

Hello- I'm new to this forum-- finally just had time to sign up!

I was diagnosed with AML 2/6/2016 and immediately put inpatient, ended up being there for 7 weeks, 3 rounds of chemo, and still not in remission.  

I was told relatively soon in the process I have several chromosomal abnormalities (one I know for sure is deletion at chromosome #7, but I'm not 100% sure what the others are).  Because of these, 'no amount of chemo will be sufficient to kill off the leukemia, therefore I need a Stem-Cell Transplant.  Thanks be to God that my younger brother is a "PERFECT" match, matching at 12/12 sites.  YAY!

I have been home the past few weeks (YAY!) just monitoring my counts, and had my 5th BMB yesterday.  Today we are (patiently....HAH!) waiting results.  Last BMB while I was inpatient a few weeks ago, showed about 5% leukemic cells.  My transplant team has said I need to have 5% or less to proceed with transplant.

I am 32 years old, a mother to my sweet beautiful 10 month old daughter, and have an amazing husband who has been so supportive through all of this.

I should also mention I am a Family Nurse Practitioner, so being on the 'patient' side of things has been....interesting!  I have receieved EXCELLENT care thus far, and am fortunate to have accecss to such state of the art medical facilities not too far from my home.

Just looking for others who have gone through Allo SCT/BMT and how you did through that process, and how far along you are now/how you are doing now.

The nurses all tell me if I've 'survived 3 rounds of chemo' (each one progressively stronger) than I will do very well with the transplant.  Still...we all know the risks, and my body is STUBBORN! :)  (as in I had to undergo surgery to drain an abscess from my parotid gland while I was inpatient those 7 weeks...SO ODD the stuff that showed up!!!)

I believe in God, and I believe He is in control, and that He has my best intentions in mind, will bring me to complete healing....but it's nice to hear other's stories along the way.

 

Blessings,

Shannon

Marda
Posts: 1
Joined: Apr 2016

Hi Shannon!

It's great to know how positive you are and how supportive your family has been. My mother has just been diagnosed with AML, but the subtype is still undetermined. I have a lot of questions medicallly, but for now, I want to know what made you this strong? I'm asking because I want to support my parents through this, though I don't know how yet since I'm also 30weeks pregnant now.

Hoping for your reply and God bless you!

Muncher1's picture
Muncher1
Posts: 2
Joined: Oct 2015

AML CR - I was in and out of the hospital for 3 rounds of chemo. received a stem cell transplant from my sister (10 for 10 match) almost a year ago (5/22/15). So far on remossion and have a biopsy coming up on 5/22/16. It's not an easy journey, but I thought it would be much worse. The isolation is the toughest for me. Drink lots of water, and I have never stopped exercising. I would do laps in my little unit at the hospital each morning and night. I have also kept busy with beadwork. Hang in there and stay calm and positive. Take care, Susie 

 

reggie6901's picture
reggie6901
Posts: 2
Joined: May 2016

Dear Shannon,

I was diagnosd with AML Jan 3, 2016. I am 43 years old.  I am so glad to hear your story.  When I was diagnosed, the twins were 18 months old.  I miss them everyday. I think besides how I feel physically, missing my babies gets me most of all. Now, after 2 rounds of chemo, only the 1st I went into remission, I am up for a BMT May 17th.  My younger brother is my 100% match.  I would love to share my journey with you.  I know I have been through chemo twice, but I am still a little nervous about the BMT.  When is your BMT scheduled?

Neenie1961's picture
Neenie1961
Posts: 2
Joined: Sep 2016

Hi Shannon,

First of all, you sound very positive and that is SO wonderful. I was the same because I too have a strong faith in the Lord and have a hubby who was walking with me every step of the way.

I had MDS / AML. It took about 6 months to find a 100% match for my bone marrow transplant. I too was immediately tossed in the hospital for my first round of chemo. I was hospitalized for about 6 weeks the first time and was hospitalized for another 4 weeks the 2nd round of chemo & the time surrounding the transplant itself.

The last round left my poor body SO broken down that I developed a horrible infection and ended up in a drug induced coma for 10 days to help my body to rest and be able to heal. I am SO grateful to God that I got through that rough patch. I had 3 rounds of chemo, being hospitalized each time for a month or more and finally had my bone marrow transplant in April of 2014. I went into remission just a few months later. The transplant itself is pretty uneventful (as you probably know) but I developed Graft VS Host and that was probably the worst part. I don't know your chances of getting it, having a brother as a donor (what a blessing!!!). You may be less likely to get "GVHD" because your sibling is your donor.

God bless you and feel free to message me if you have questions. It's scary, I know, but bone marrow transplants are VERY effective. I've heard of people who are in remission for decades after their transplant. You should be very hopeful for your recovery. I know you're in good hands!

 

Janine

 

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