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-   -   Happy 1st re-birthday to me! (http://forums.marrowforums.org/showthread.php?t=5009)

rar Thu Jul 2, 2015 08:03 AM

Happy 1st re-birthday to me!
 
Yesterday was my first re-birthday. I celebrated by going to the hospital and having a battery of tests. I passed them all except it takes 2 weeks to get the bone marrow bisopy results. The doctor is confident that I will have no problem passing it and that I may be on my way to a cure. Keep tuned for a year or two for final results. This is the first time in over a year that I was in the normal range for all three of my blood counts (red, white and platelets). Even though it has been 6 months since my last visit to the hospital close to a dozen people remembered us upon sight. We had a good time revisiting with them.

I am suffering some problems, notably eyes, mouth, throat, rash, and fatigue. Doctor said it is a combination of graft vs. host and prednisone withdrawal. He put me back on immuno suppressant and steroid in addition to antibiotic and antiviral. I was taken off these too quickly. With the restoration of the drugs I should feel as good as a month ago which was pretty good. The GVHD is only mild to moderate but he does not want it to become severe like the last time it put me in the hospital for two months. Perhaps the most lasting side effect is that transplant causes dental decay. I ended up with 6 or so cavities that are deep below the gum line. Dentist does not think it practical to fill so 2 or 3 teeth will have to be removed.

I received 5 1st birthday cards. One year olds get very cute cards. I think I am among the very few who can actually read and appreciate their birthday wishes.

Ray

vickij Thu Jul 2, 2015 10:48 AM

Happy 1st Birthday Ray
 
I had my 2nd birthday on June 25th. I have some problems with fatigue & muscle pains but thankful to be alive.

Neil Cuadra Thu Jul 2, 2015 11:12 AM

Congratulations, Ray! One year is a big milestone and having normal counts is a great achievement.

I don't think they can predict how long GVHD symptoms will linger, but you'll definitely feel better after a careful taper of meds is finally complete.

DanL Thu Jul 2, 2015 04:06 PM

Congratulations on completing year 1 Ray. You have done a great job battling through that first year. Here's hoping for a completely healed year 2!

Dan

bailie Thu Jul 2, 2015 04:32 PM

That is great Ray. Your perseverance has been rewarding for you and all who have followed your experience. Thank you for posting all of your information this past year. Keep up the good work.

maggiemag Thu Jul 2, 2015 04:45 PM

Hooray!
 
Congratulations, Ray! It brought tears to my eyes when you mentioned that you got first birthday cards; how touching and so very meaningful. May you celebrate many more years!
Mags

Bossywife Thu Jul 2, 2015 10:38 PM

That's wonderful news! Happy 1st re-birthday!!

Bhutt Fri Jul 3, 2015 10:34 AM

Great news rar glad your doing well.

Blair

PaulS Fri Jul 3, 2015 10:45 AM

That's great Ray - congratulations. I wish you continued improvement and health. Paul

traceyn11 Fri Jul 3, 2015 09:42 PM

Congrats Ray and Vicki!
 
Glad to see you both made milestones! Hoping for continuing good health!

Tracey

tom30 Sat Jul 4, 2015 11:28 PM

Happy Birthday, My personal experience with Dentists varies, 20 years ago when my dentist of several years retired I had a checkup at a recommended dentist and got mis diagnosis of gum disease and a recommendation of 4 quadrants of gum surgery. Lucky I went to a different dentist. The guy I've been going to the last 20 years has been great, explains what he is doing and is always up on the newest technology. I have all my teeth which I would did not expect at this point. Maybe a second opinion would be helpful.

Cheryl C Mon Jul 6, 2015 04:32 AM

Congratulations, Ray! Well done. I like your honesty and admire your courageous spirit.

rar Wed Jul 8, 2015 01:03 PM

BMB test results
 
I wish to thank all for their prayers, advice and congratulations.

As the doctor expected my BMB came out good.

CHIMERISM RESULTS:
Donor Alleles: detected
Host Alleles: not detected

No molecular evidence of residual pre-transplantation host cells is detectable in the CD3, CD33, and CD56-enriched cell fractions of the peripheral blood specimen from 07-01-15 by our PCR-based STR chimerism assay. These findings represent an increase from 70% donor cells in the CD3-enriched cell fraction and from greater than 95% donor cells in the CD33 and CD56-enriched fractions compared to the prior peripheral blood specimen from 09-18-14 (see MD14-3276). These findings are consistent with complete donor cell engraftment in all three cell lineages

I had been concerned with the CD3 line. It all looks good now.

Now all I need is a little better control on the GVHD. It may be improving slightly after restarting the Tac and Pred.

Ray

KarenE Wed Jul 8, 2015 05:54 PM

Happy Re-Birthday!

Fana Thu Jul 9, 2015 09:28 AM

Congratulations Ray! So happy for you :):). Love your comments about the birthday cards:D my son is also nearing the one year mark.


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