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Auto Stem Cell Transplant

nickydog
Posts: 76
Joined: Nov 2010

Can someone who has had a auto stem cell transplant share what their experience was after they were released from the hospital?  My daughter had one just over month ago, and I was wondering what others experienced.  I have noticed that she seems to be a experiencing a bit of shortness of breath.  She did have a bit of a head cold but no fever.  There is a bit of a cough but no mucus.  She will be checking with her doctor tomorrow to make sure she is okay.  

coachmike
Posts: 155
Joined: Oct 2011

hi

im mike, im two and half years out from my transplant.

i too dealt with symptoms, shortness of breath was a biggie. in fact I dealt with that for quite some time.

fatigue, weakness, and anziety were some other effects i had

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi nicky,

I had ASCT in August 2012 preceded by high dose chemo which took away my bone marrow. The ASCT gave me back my stem cells which created new bone marrow.

After the ASCT I was weak and tired for months, and it took at least 3 months until my stomach was reasonably in order again. All this trouble was due to the high dose chemo.

But ASCT is the best treatment for my disease, primary central nervous system lymphoma (PCNSL), and it gives you the best chance to avoid a relapse. The trouble passes.

Now I have been NED (no evidence of disease) for more than 2 years.

Sten

allyd424
Posts: 1
Joined: Nov 2014

Hi! Sorry to hear that your daughter isn't feel great. I had an auto transplant in 2012 on my 30th birthday! Recurrent stage 1 hodgkins with large mediastinal tumor.  Had pretty much the same symptoms everyone is describing. I was also permanently sent into premature ovarian failure and developed Lhermitte's sign (which they say should go away...but it hasn't yet). I struggled with severe anxiety for about 2 weeks after I was released from the bospital--im pretty sure this was withdrawal from the massive doses of meds I received in the hospital. I slept a lot for about 4 weeks after returning home. I had a horrible transplant experience, far worse than I was prepared for, and I think I just needed a lot of rest as I regained my strength and appetite. I also had trouble with balance and coordination for quite some time after my transplant. Even my handwriting looked weird during that time. I was convinced I'd never be "normal" again, but I was wrong! Shortness of breath was definitely a problem that gave me trouble for a long time. I joined my local bike club about 6 weeks post transplant and I know the regular exercise (and encouragement from my new cycling friends) helped me a TON. For some crazy reason I also decided to sign up for my first ever triathlon, learned how to swim, and raced just 5 months after my transplant! In hindsight, I have no idea how I pulled that off. I'm telling you this because I really believe that setting those goals sped up my recovery, plus those postworkout endorphins worked wonders for my spirit. Once her doctor clears her for exercise and she feels up for it, i would encourage your daughter to invest in some kind of physical activity that's fun for her.  Exercise during that recovery period is truly awesome because the improvement curve is so dramatic. When your body has taken a beating, it doesn't take much to notice the subtle improvements that exercise brings. You don't have to wait forever to notice progress, you know? The shortness of breath, tightness in my chest, balance...all of those crappy side effects just melted into the background day by day.

One last thing---keep an eye on the cough you mentioned. 1 year post transplant I developed a dry cough, daily lowgrade fever, low blood pressure, and just started feeling worse and worse as the weeks went by. I went to the ER several times, but they couldn't figure out what was wrong. I was finally diagnosed at a 3rd hospital with PCP, a fungal infection of the lungs that shows up in immunocompromised patients. It hard to detect and doesnt always show up on chest xrays.  It wasnt until I begged for a CT scan that they saw the inflammation. The only way to confirm PCP infection is with a bronchial swab, which requires light sedation. Its not super common so it usually doesnt even cross the minds of many physicians. Scary because its deadly. I was very fortunate to find a doctor that was really willing  to listen to me and go beyond standard protocol. I seriously doubt that's something you should be concerned with, but I wish someone had told me because it wasnt on my radar and I almost died from it before it was found! 

Take care and Happy Thanksgiving. :)

nickydog
Posts: 76
Joined: Nov 2010

My daughter has pneumonia.  She is being treated with antibiotics and is feeling better. She has an appointment with her hemotologist on Wednesday.  It is her first check up since her SCT. 

nickydog
Posts: 76
Joined: Nov 2010

My daughter has her appointment in one hour to see if the stem cell transplant worked!  I am so nervous...

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

I hope your daughter get's good results.  Nervouseness is so understandable.  Please let us know how things went.

Hugs and positive thoughts,

Jim

nickydog
Posts: 76
Joined: Nov 2010

Her appointment went well. The oncologist/transplant doctor is pleased. (it hasn't been two months since thetransplant). She still has a long road ahead of her.  I often hear people making reference to the 100 day mark, not really sure what it about though.  The doctor also mentioned possible maintenance drug-brentuximab.  Anything they have to do to keep this ugly disease under control is ok with me.  Giving my daughter a healthy happy life is what matters!

nickydog
Posts: 76
Joined: Nov 2010

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nickydog
Posts: 76
Joined: Nov 2010

My daughter has another appointment tomorrow with her hematologist. it has been just over 3months since her stem cell transplant.  She seems to be doing well.  We live quite a distance from her doctor so her weekly blood report is sent to her from our hospital here where we live.  There doesn't seem be any concerns because she would call if there was she told us.  She did have another CT last week that she will get the results of tomorrow too.  I am so nervous!

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