Justusscrapper I have a question for you?

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Posted 11/14/2012 by 3PSoup in NSBR Board
 

3PSoup
AncestralPea

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Posted: 11/14/2012 2:20:36 PM
I read your thread (and posted) regarding your bone marrow transplant. First, I would like to tell you how sorry I am for you. I can't imagine how scared you must be. Stay strong. It will happen. ((Hugs)) to you and your family.

My question is this, have you had a transplant before? The reason I ask, when it comes time (when my disease can no longer be controlled) I will be on the stem cell transplant list. I want to know what is involved, how long it takes to find a match, what the process is once you are ready to be admitted etc...

Please have faith. I swear by a positive attitude.



3PSoup
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Posted: 11/14/2012 4:57:54 PM
Bumping so she doesn't miss the thread.



lovetodigi
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Posted: 11/14/2012 5:13:43 PM
3PeaSoup. I am not Justusscrapper but did not want to read and run. (((HUG))) and prayers for you too. While you are waiting to hear from justusscrapper, I thought that I would post a link to her original post to give you more information. It might answer some of your questions. She has gone through some really rough times and set backs, but she is strong and she will get through this, as will you.

Link 1

Link 2

Link 3

Link 4

There are more if you will go to her member page and check out previous post.




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justusscrapper
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Posted: 11/14/2012 5:50:53 PM
According to my dr, you cannot transplant more than one time. That is why they are so insistant on getting my cancer as gone as they can BEFORE transplant.
So, no I haven't had a transplant yet.

I'm not sure how the process works with other hospitals, but I was diagnosed with AML Leukemia on Aug 21 and told that transplant is the only way to 'cure' the type I have. The hospital that does my chemo does not do the transplant. The transplant hospital (University of MN) does the most of 'my' type of transplants in the country, and I"m lucky to live an hour away from the hospital. They would not meet with me until I was in my first remission and then they discuss all the options and research trials available. They tested my sister for a sibling match, which took about a week, but we found she isn't a match. They had already found lots of preliminary stem cell matches and would continue to test to find just the right matches. (You don't want too 'good' of a match, because of graft vs. host disease.) They also need to use 2 different stem cell collections because of the volume needed for adults. There is a lot of behind the scenes stuff they have to do with insurance, etc before being ready, which took about 8weeks. Then you begin work up testing week which makes sure you are healthy enough to withstand transplant. If I had completed this week of testing (I got 2 days done before cancelling) they would have begun my transplant process in 2 weeks. They will not move your stem cells until you are found to be fit for transplant after testing. You also have to complete a few days of chemo & radiation before transplant. Then you have a new birthday! My new birthday WAS going to be Dec 11th (one day after my oldest's birthday) but now it will likely be Jan or Feb.

It's kind of cool to think that the stem cells can come from anywhere in the world and actually, stem cells are preferred for my type of cancer. They are 'baby' cells that can be trained to be any type of cells that my body needs at the time.

Good luck with your diagnosis - sorry you have to go through this.



justusscrapper
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Posted: 11/14/2012 5:58:34 PM
eek, I didn't realized I'd posted so much about this. Now I kinda feel like a jackass for being so "LOOK AT ME"!



SueSume
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Posted: 11/14/2012 6:05:37 PM
P&PT for both of you. Keep on keepin' on and use the healing power of laughter every chance you get ((((HUGS)))))


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Christine58
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Posted: 11/14/2012 6:10:19 PM
Will your stem cells be bone marrow or placental cord???



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justusscrapper
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Posted: 11/14/2012 6:13:34 PM
Don't know about 3PSoup, but mine must be cord blood.
The match center said that for white females, the chance of finding unrelated marrow donors are 85% and cord blood is 95%. Depending on the type of cancer, one or the other is preferred.



3PSoup
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Posted: 11/15/2012 2:30:54 PM
lovetodigi thank you for the links. After I posted this I went back and re-read her update. Gave me some insight. Yes, she has gone through a lot. I feel very lucky to be in the position I am right now.

justusscrapper I want to thank you so much for sharing your story with me. Not sure this is the best and most informative way to handle my diagnosis, but I tend to bury my head and forget about the whole disease until someone posts a thread or someone starts talking cancer. I then peek out from under the sand and do some reading. Your thread caused my head to peek out from under the sand. Hence the questions.

You did not go on and on.... You provided me with some good information which I really appreciate! And we SHOULD "look at you". You deserve all the positive attention and hugs you can get. Cancer isn't easy on anyone. You need all the P&PT's you can get right now I'm sending mine your way. Again, thank you for all the infomation you took the time to type!

SuSume thank you for the P&PT and hugs.

Christine58 if you are asking me, I'm embarassed to say I don't know. I figure I will cross that bridge when it is time. This is my way of facing my cancer.

Thanks again to those who posted on my thread



biochemipea
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Posted: 11/15/2012 2:33:11 PM
There must be some variation in practices for stem cell rescues, because my mom has had one stem cell rescue (autologous) and I know her doctor said she could have another one when the time comes, if necessary. Maybe it needs to be exogenous, though?






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3PSoup
AncestralPea

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Posted: 11/15/2012 2:46:12 PM
biochemipea my cancer is treated the same as your moms. I can have as many as my body will tolerate or until the cancer is "controlled."

There are a couple of people in our smalll town who have gone through a number of stem cell transplants for the same disease which I have. One passed away within 4 years the other is very sick and possibly looking at a 3rd (I think it is her 3rd) transplant.

Each disease is different when it comes to stem cell transplants. My doctor insists on autologous transplants.



mikklynn
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Posted: 11/15/2012 3:08:50 PM
3PSoup, wishing you the best!

Justusscrapper, I really don't think you have over-posted or have a look at me attitude. I am happy you have a safe place to vent your fear and frustration.

Stay strong ladies!


Lynn



maryannscraps
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Posted: 11/15/2012 4:17:46 PM
I don't think you've posted too much, justusscrapper, I'm interested in hearing how you're doing and what's going on. I find the topic fascinating -- so many different treatments with stem cells. DH had an autologous stem cell transplant for his blood cancer. The doctors said he'd only be able to have it once. A return of the cancer would require a different treatment. Luckily that hasn't happened so far.

Hugs and many healing prayers to both of you!
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