Thursday, January 28, 2010

5 Month Anniversary of Mini Bone Marrow Transplant

So the transplant is behind us and it was indeed a journey to be sure. My husband was in the hospital for a total of 39 days. Admission was one week before the transplant which was done using bone marrow not peripheral blood - more common as we came to find out. The chemo given pre-transplant consisted of fludarabine and melphalan.

The time spent in the hospital was one of the most intense and hardest things we had ever endured, but it went amazingly well, all things considered. I met so many incredible people - nurses, aides, doctors, other BMT patients and all their family members. On the same floor were other leukemia patients some of whom did not leave the hospital and I felt the pain and agony of their wives and children as they prepared to take them home to say good bye.

As far as complications and side effects, of course the usual happened. His counts were very slow to come back up and at times this was very discouraging. We were told this was due to the usage of marrow and also his age (65.) But with the help of growth factors and a few bags of blood and platelets, they did finally get up to a point where he could come home. That was one happy day, but at the same time, the day I joined a profession I had no interest in - Nursing! Administering IV magnesium, flushing of 3 central lines, changing a dressing under 'sterile' conditions, taking vitals and just watching him like a hawk was a challenge like no other I had ever experienced.

Some way, some how, God gave me and my husband the strength to endure the days to come as we counted down to the first milestone - Day 100! He was taken off immuno-suppressant drugs earlier than usual because once again his counts were slow to come back up.

Fast forward to today - 5 months later and 5 bone marrow biopsies and mixed chimerism tests later - all news is good! Last tests showed no abnormal blast cells (no evidence of CD52 on the Flow Cytometry) and donor cells on the increase in the immune system. GVHD has been limited to a few episodes which included a slight skin rash, minor eye irritation (did not last long), a period where his liver function tests went off the charts and his Eosinophil count was above normal. We are now praying that was what they want to see - a little but yet enough to cause the GVL effect. He had his central line removed this week and that was another day to celebrate!

For anyone contemplating this procedure upon recommendation from your medical team, I would suggest you get second opinions, make sure you have a solid support team ready to be there for you during and after you come home, and most of all have a positive attitude and solid faith to get you through the roller coaster ride.

We know we are far from done with the recovery, but feel we are on the road to what is called our 'new normal' and can resume our so called former lives when the springtime rolls around!

Feel free to contact me if you want more details as I am more than willing to share my insights with you.

7 comments:

Leslie Kerrigan said...

Shirley, I have you and your husband in my thoughts and am very happy for the positive stuff that's been happening!! I cannot thank you enough for everything you've done for me (thus far); and all of the lovely and encouraging words you've offered to Mark and me. I'm really thanking my lucky stars that I stumbled upon this site. Love to you and your hubby!! -Leslie Kerrigan

the_doggman said...

Shirley, i am so pleased to hear that so far all the milestones are being met... i too am grateful that i stumbled across this blog... since my girlfriend was diagnosed in september its been a constant battle... but she is fighting... we have her counts down to under 70,000 and after 2 near fatal infections.. the latest she is still getting over Pnuemonia but has focus on getting into remission and has now realised that infection control is key... She has kept a journal of all the events but as of the moment is too private to share... Thank you all for your support all the best xxx Steve and Leah

Mark said...

Steve and Leah,

The infections are so difficult, stay on top if it!

Feel free to write if you wish!
mgross [at] integrity [dot] com

T-PLLWife said...

Steve & Leah,

Happy that you found the blog. It is nice to connect with others who have the same experience.

My husband continues to do very well. Our last test results were all positive as we move toward month 7 post transplant.

Yes, the infection control is key and can be challenging at times. We have kept a very low profile throughout this journey and it has paid off.

Please write again if you have questions of just want to chat.

Best to you both - stay strong and keep fighting!

Shirley

Elaine said...

Hi, I found your blog thru google - my mum has tpll - found out at xmas thru routine test as she was very tired. WBC are 600 (were 747). campath wasnt working, so theyve paired with pentostatin - so far 2 doses. the doc didnt seem to hoepful of the outcome if this doesnt work. she's fit and healthy otherwise - lost 2 stone and gets tired -but hey, she's 63! is the outlook really as bleak as most of the google items say? its so hard to find info in the UK.
Thanks,
Elaine (elaineellison@hotmail.co.uk)

bill c said...

I am new to the blog. I am a 56 year old male.

I was very happy to find this blog and it has been a breathe of fresh air to know that there is hope. I hope all who contribute to the blog are doing well.

I have LGL and T-cell PLL and I would welcome any information that can help me on this journey. I was diagnosed 7 months ago.


I am being treated at the Moffitt center in Tampa,FL. I am intrested in feedback from others who have been treated at other locations and the physicians. At this time have have not received any treatment. My neutophils are currently at 750, WBC is at 21,000, slightly enlarged spleen and lymph nodes

Since I have not been treated yet, I am very concerned about the warning signs that I should be watching for so I know when I need to get help.

Thanks
Bill

the_doggman said...

Hi all, i am sorry to report that Leah passed away at the end of may, she fought hard, but hadso many other things against her, her diabetes and more importantly her breast cancer spread due to not being able to have the right treatment for that and the campath... I will always be so grateful to the people who helped and shared the info that they had regarding this and i will always be available via email if anyone needs to know anything that we did well or the mistakes we made...

My best wishes to everyone in your fight, stay positive, stay strong and more over dont give in....


Regards

Steve Dyson (the_doggman@hotmail.com)