[Jackson56]

Stem cell transplant

by Jackson56 on Wed Dec 12, 2012 9:37 pm

Can anybody tell me what it is really like having a sct? I will be starting one January15th.
And I am starting to get nervous about it. As we move along the path they throw more info at me.
One of them was after one of the heavy chemo treatments, it will be hard for me to breath. No red blood cells, they will give me a transfusion, how hard is this to go thru? And most of this treatment will be on an out patient basis. And one of the other hard part will be about 5 days after stem cell transplant, I will get pretty sick... Makes me wonder if it is worth it, as some are surviving with out this....

[stann]

Re: Stem cell transplant

by stann on Thu Dec 13, 2012 11:00 am

I had two of them in 2011 and they were not nearly as bad for me as I anticipated.
I was 48 at the time and I do think age plays a role.
It's not something to take lightly, but that being said...
It was the first time since I was a little kid that I had zero responsibilities for 3 weeks. People brought me food, I had the remote, laptop and a brand new Kindle. I had about 3 days where I was sick, but honestly it wasn't too bad. I've had hangovers that were worse. There were a few days where I was too exhausted to do anything besides watch tv or sleep. But most of the other days were very relaxing and...dare I say enjoyable??
I've had no lingering side effects that I can tell.
Another friend my age also had a very similar experience. A friend of mine in his mid 60's had a hard time. No lingering issues, but felt awful for 8-10 days and it didnt' help him at all.
Just my two cents.
Check out the poll on this website regarding "happiness with SCT". 67 replied and the vast majority were happy to have had the procedure.
You can get bogged down in study after study, and all of the statistics where many numbers contradict each other and get confused. But if the vast majority (in this unscientific poll) were "happy" to have had the procedure, that tells me a lot. It tells me it wasn't unbearable and it also tells me they did get some benefit from it.
Good luck to you

[Ritz]

Re: Stem cell transplant

by Ritz on Thu Dec 13, 2012 12:03 pm

I was pushing 64 yrs of age and the sct went off without problems. I did have one small mouth sore that bothered me close a week, just didn't want to open my mouth too wide (couldn't eat hot dogs) and a mild upset stomach. They gave me pills to control the motion sickness for the ride to and from the hospital everyday.
I was in hospital 1 night to have the neostar line placed and the cytoxan and then a couple of wks. later 2 nights for the melphalan and my sct. Entered the hospital on a Monday morn and left Wed. evening.
I made the 45 min. trip from home to the hospital every day for 21 days .
The doc said I went through the sct better than any patient he ever had. I am very thankfull and blessed. I did see a few folks that had trouble and had be admitted to the hospital, mostly fevers and such. Overall for myself and what I saw from others the process was not nearly as bad as I expected.

Hope it goes well for you and all the best to you. Have a great Christmas

[Christa's Mom]

Re: Stem cell transplant

by Christa's Mom on Thu Dec 13, 2012 1:32 pm

Jackson56,

I kept a caringbridge log on EJ's stem cell transplant in 2011, which I updated daily throughout the process. Feel free to read it. ...forgive me my misspellings, caringbridge does not have spell check.

Lyn

http://www.caringbridge.org/visit/erikjohnson2

[Jackson56]

Re: Stem cell transplant

by Jackson56 on Thu Dec 13, 2012 4:16 pm

I just read all of your posts and all of Erik's story. Thanks for your support. I will try to remain calm, and leave it up to my care takers... I just went to my Oncologist this am, I have 2 more compression fractures. I am hoping they can take care of it before January. I really like coming to this site for support, as there isn't any local support groups around here.

[Wrast5423]

Re: Stem cell transplant

by Wrast5423 on Sun Dec 16, 2012 6:28 pm

I'm the caretaker for my dad who is day +10. Like anything, the anticipation and what I imagined was worse than reality. In his experience, the discomfort (very tired, diarrhea, no appetite) didn't start until day +8. We knew it was coming, wasn't sure what to expect. He's already starting to turn the corner because his WBC is picking up. Try your best to live in the moment-one minute at a time! Also-eat like a king so you have some "wiggle room" for the period of time you may not have an appetite. The care team folks are experts and will provide you what you need. Best to you!

[genk]

Re: Stem cell transplant

by genk on Wed Dec 19, 2012 8:03 pm

I am 60 had my first SCT in may of 2012 ( do not think age had much to do with it ). I like you was unsure as to how severe the transplant was going to be. I was told transplant day would be pretty much a non event and that is about how it went. I got two days of massive chemo them my own stem cells were given to me and the process began. I got a bit weak and was extremely tired when my numbers bottomed out . At that point I characterize it as being like a newborn I slept two hours and was awake two hours much like an infant for the first three months after the transplant, then I slowly got to the point I slept pretty much as I had before the transplant. For me it was not nearly as severe as I thought it might be. I suppose everyone is different so a one size fits all may not be the same experience everyone has. Hope that helps.