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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Wed Sep 8, 2010, 10:45 PM
Flamingo Jim Flamingo Jim is offline
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Post SCT Mid Sept 2010

Greetings all, I am preliminarily scheduled to start the Stem Cell Transplant process around Sept 15 at Barnes Siteman Center in St Louis. Wondering if anybody on this forum has been treated there and advice on what to bring for hospital stay beside the usual stuff recommended.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #2  
Old Thu Sep 9, 2010, 08:17 AM
squirrellypoo squirrellypoo is offline
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Congratulations, Jim! I don't know anything about that center so I can't comment, but I'll be thinking about you. It sounds like you might be undergoing your conditioning regime while I'm at the altar! Have you got details on what conditioning you'll be having?

And learn from my experience - don't get too hung up on the day they tell you because you can get delays and date changes right up until the second you're admitted (I had one change the day before and then another the night before).

There's a thread here on what to pack which might help you.

Have you got any other questions? There are several of us who had our transplants last year (and unfortunately Vera isn't with us anymore, but her thread is still very helpful).
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)

Last edited by squirrellypoo : Thu Sep 9, 2010 at 08:18 AM. Reason: added packing link
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  #3  
Old Thu Sep 9, 2010, 02:25 PM
Flamingo Jim Flamingo Jim is offline
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You are psychic, my date has changed already to Sept 21.

I am all checked out ready to go. My brother is getting final tests Friday..we were waiting for insurance approval.

As far a chemo regime when I am admitted, I know it is two more powerful drugs for up to eight days before the actual transplant. I will lose my hair.

When I was first diagnosed, I was on Decitibine for a week..but once they found a match they stopped the rest of those treatments. Right now, all I am getting is blood or platelets once a week.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #4  
Old Thu Sep 9, 2010, 03:42 PM
crpa crpa is offline
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Hi:
Just writing to wish you good luck on your SCT.
My husband is in his last days of hospital stay for a sct mud donor, he was diagonosed in Feb, 10.
He is doing well with most counts now up ,we are waiting for his wbc to come up more so he can be released.

During his hospital stay he enjoyed his own brands of toothpaste, good reading materials, dvds and a laptop commuter is helpful in passing the time.
Very comfortable lounge pants and shirts.
I brought along a brand new comfortable throw that was his favorite thing while resting, bring items to make it more like home.
Keep in mine new unopened due to the germ factor, each hospital is different
in what they allow, so it is best to ask.

Best wishes for a quick recovery.
Christine
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  #5  
Old Thu Sep 9, 2010, 05:04 PM
Laura Laura is offline
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I echo Melissa's post.

If you read threw some of the other posts you will find very useful information.

Best of luck and keep us updated.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #6  
Old Thu Sep 9, 2010, 05:37 PM
Debbie W Debbie W is offline
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Jim

Good luck and keep us posted, my husband is scheduled for 9/21 as well.

Best wishes,
Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #7  
Old Thu Sep 9, 2010, 10:06 PM
Flamingo Jim Flamingo Jim is offline
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Thanks for ideas. Is it better to bring in "old" clothes that has been laundered multiple times or buy new things, from a germ/infection factor?
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #8  
Old Thu Sep 9, 2010, 10:56 PM
Laura Laura is offline
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I am assuming that if the clothes are washed and clean then they should be fine. Because even if you buy new clothes they will still have germs on them from the store and people touching them and trying them on. Your germs on your own clothes are probably safer then other people's germs on new clothes.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #9  
Old Mon Sep 13, 2010, 05:16 PM
Flamingo Jim Flamingo Jim is offline
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Thanks for the info, looks like I should get some more warm, front opening shirts

Is there a page on the forums that has an explanation of all the abbreviations, especially the ones people use in their signatures?
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #10  
Old Mon Sep 13, 2010, 07:46 PM
flyguy flyguy is offline
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Quote:
Originally Posted by Flamingo Jim View Post
Thanks for ideas. Is it better to bring in "old" clothes that has been laundered multiple times or buy new things, from a germ/infection factor?
Hi Jim,
Good luck with the SCT. I know you are anxious but am so glad you have a sibling match. Re clothing, I spent 12 days getting ATG last year and went thru the same questions re clothing. I went to K Mart or Target and got sweat pants and shirts and it worked very well. I got the shirt a bit large and could pull it down for access to the port and could lounge, sleep, and walk the halls with the same outfit. I agree that I'd wash them well before wearing them though. I'd also recommend sandals so you can get up when you need without finding sox to wear.
Best of luck!

Flyguy AKA Ron
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  #11  
Old Mon Sep 13, 2010, 09:52 PM
Laura Laura is offline
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Quote:
Originally Posted by Flamingo Jim View Post
Thanks for the info, looks like I should get some more warm, front opening shirts

Is there a page on the forums that has an explanation of all the abbreviations, especially the ones people use in their signatures?

Not sure about that. But which abbreviations are you wondering about? Maybe I can help out?

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #12  
Old Mon Sep 13, 2010, 09:53 PM
Laura Laura is offline
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I echo the comfy clothes. I brought lounge pants and tshirts. Much more comfortable than the huge hospital gown!

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #13  
Old Fri Sep 17, 2010, 10:32 PM
Flamingo Jim Flamingo Jim is offline
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Thanks for the advice. My hospital admission date is Sept 22. Another question, I am single and normally live alone. When I get out of hospital, will I need someone with me 24/7? My girlfriend will be with me a lot, but she has to work during the day. I have other options, like staying with family or having someone stay with me, but curious how independent I can be for first few weeks post-SCT. Any thoughts?
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #14  
Old Sat Sep 18, 2010, 04:41 PM
Neil Cuadra Neil Cuadra is offline
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Jim,

When patients are just home from the hospital after a transplant, they might want to have other people around as much as possible, "just in case", but it's not always necessary. What I think is important is that you have a way to get to your doctor's appointments when you don't think you can drive yourself. You can call an ambulance for a real emergency (probably unlikely) but it would be reassuring to have somebody you could count on to help you with routine transportation.
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  #15  
Old Sat Sep 18, 2010, 09:27 PM
Flamingo Jim Flamingo Jim is offline
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I definitely have people that can take me for appointments, that is not a problem. I was more wondering how much I can do for myself in my house...people are worried I need someone around all the time. From what I understand from talking to some people who have gone thru process is that I will be able to get around my house, cook some simple things, etc while my caregiver is out working.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #16  
Old Sat Sep 18, 2010, 10:37 PM
Laura Laura is offline
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For my transplant my center would not allow me to be alone. If they knew I was alone they would admit me until I would have a caregiver with me 24/7. Thankfully my husband is a teacher and has summers off so it worked okay for us. But honestly, I feel as if there were moments that I could have been alone and okay for a little bit. The funny thing though, is the one time I was by myself (my husband had an apt at the clinic), they called and said I had positive blood cultures and needed to come ASAP to the clinic. Of course I had to tell them I was alone and had to wait until my husband came home. They were not too happy Oh well.

I think as long as you are feeling good you should be okay by yourself. It is nice to have someone around to help you with things if you don't feel good or are not strong enough. But if you feel okay, there is no reason to have someone with you.

Like was said, for an emergency there is always 911.

Laura
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  #17  
Old Sun Sep 19, 2010, 03:03 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Flamingo Jim View Post
I definitely have people that can take me for appointments, that is not a problem. I was more wondering how much I can do for myself in my house...people are worried I need someone around all the time. From what I understand from talking to some people who have gone thru process is that I will be able to get around my house, cook some simple things, etc while my caregiver is out working.
You may be rather tired, so it's not as easy as you might think to manage everything yourself. The key is to do what's necessary (like getting proper food and rest) and not worry about things that can wait. If the house is messy, so be it.

If friends offer to help, take them up on their offer and let them help. Let them cook for you or bring you meals, for example. That's what we did and it helped, and they felt better that they could do something for us.
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  #18  
Old Tue Sep 21, 2010, 11:51 AM
flyguy flyguy is offline
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Quote:
Originally Posted by Flamingo Jim View Post
Thanks for the advice. My hospital admission date is Sept 22. Another question, I am single and normally live alone. When I get out of hospital, will I need someone with me 24/7? My girlfriend will be with me a lot, but she has to work during the day. I have other options, like staying with family or having someone stay with me, but curious how independent I can be for first few weeks post-SCT. Any thoughts?
Hi Jim,
I am afraid I can't give you first hand advise but one of the ladies in my Wellness center had a SCT this year and she definitely needed her husband's help. Some things you don't think about that she used him to do was open doors for her and answer the telephone so she didn't get contaminated. I'm sure you will be on immune suppressant therapy and I can definitely tell you that they wipe you out (in addition to SCT). I'd line up the help you can get and cancel if you don't need it. Wish you the best of luck and hope all goes wonderful for you.
Ron AKA Flyguy
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  #19  
Old Tue Sep 21, 2010, 12:26 PM
Flamingo Jim Flamingo Jim is offline
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Thanks for the advice! I guess each case is different. I have talked to some people who were alone a lot of times during day because spouse had to work and others who basically had 24/7 caregiver. Bottom line is work with my coordinator on post recovery scheduling.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #20  
Old Mon Sep 27, 2010, 05:42 PM
Flamingo Jim Flamingo Jim is offline
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I am in the hospital on day -3 going through conditioning regimens. Bulsafan up to this point and today first of two treatment of cytoxan. I have had no side effects other than loss of appetite and a slight burning/runny nose right after getting cytoxan. My brother is getting his shots in preparation for his donation on Thursday.

So far, the biggest issue has been boredom and lack of sleep...let's keep it that way
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #21  
Old Mon Sep 27, 2010, 06:35 PM
mausmish mausmish is offline
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Sounds great so far, Jim! Hope everything continues to go well for you.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #22  
Old Mon Sep 27, 2010, 09:40 PM
Laura Laura is offline
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Jim,
Glad to hear things are going well for you. Thinking of you.
Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #23  
Old Tue Sep 28, 2010, 05:51 AM
starz starz is offline
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Hi Jim,
I wish you a very boring transplant. Boring is best.
Gem
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  #24  
Old Wed Sep 29, 2010, 12:53 PM
Flamingo Jim Flamingo Jim is offline
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Chemo done, I am on my rest day now, day -1. Last day of chemo was the worse, but only nausea and general run down feeling.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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  #25  
Old Mon Oct 4, 2010, 02:29 PM
Flamingo Jim Flamingo Jim is offline
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On Day +4 with not too many issues. My appetite has been spotted, but I have been using the exercise bike and walking around hospital floor. My White and ANC counts are way down but not really causing any problems for me. Mainly it is boring...hope to keep it that way
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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