Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Aug 6, 2014, 09:40 AM
Laurie S. Laurie S. is offline
Member
 
Join Date: Aug 2014
Location: New York, N.Y.
Posts: 11
new to site

My husband (63 y/o) has PRCA and CLL; started treatment 1 year ago. The CLL treatment (FCR) was interrupted last fall after 2 cycles due to the PRCA. Cyclosporine helped, he was then tapered off and he relapsed in June, back to weekly transfusions. He's back on cyclosporine, but it's not kicking in again. I gave him Dr. M.'s contact info (from this forum , and his doc said she'll consult with him. Any support/suggestions would be much appreciated...this is a very scary time for us both...
Reply With Quote
  #2  
Old Wed Aug 6, 2014, 12:56 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Dr. Maciejewski is great. It is worth a visit to him even for a second opinion.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #3  
Old Wed Aug 6, 2014, 01:55 PM
Laurie S. Laurie S. is offline
Member
 
Join Date: Aug 2014
Location: New York, N.Y.
Posts: 11
Thank you for replying; we'll reach out for the 2nd opinion if my husband's doctor doesn't follow up next week. He's been on the cyclosporine for 7 weeks so far, but I'm encouraging him to go to Cleveland if his response doesn't kick in by his next appt on Tuesday. I've been reading about Zenapax, too...is it potentially effective for both the CLL and and PRCA?
Reply With Quote
  #4  
Old Wed Aug 6, 2014, 05:06 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by Laurie S. View Post
Thank you for replying; we'll reach out for the 2nd opinion if my husband's doctor doesn't follow up next week. He's been on the cyclosporine for 7 weeks so far, but I'm encouraging him to go to Cleveland if his response doesn't kick in by his next appt on Tuesday. I've been reading about Zenapax, too...is it potentially effective for both the CLL and and PRCA?
My experience is only with PRCA. I know he has patients with combinations of conditions. I believe there are several options for treatment, but every person responds differently.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #5  
Old Thu Aug 7, 2014, 10:34 AM
Laurie S. Laurie S. is offline
Member
 
Join Date: Aug 2014
Location: New York, N.Y.
Posts: 11
My husband's CLL doctor has seen 10 other people with PRCA over the years, which I understand is more experience than other doctors generally have. I'm hopeful that Dr. Maciejewski's PRCA expertise can better inform the next step. In the meantime, I so appreciate this site and your participation; we haven't found any other people with this combination, so we're back and forth between CLL and PRCA to gather as much info as we can.
Reply With Quote
  #6  
Old Thu Aug 7, 2014, 07:17 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by lainnyc View Post
My husband's CLL doctor has seen 10 other people with PRCA over the years, which I understand is more experience than other doctors generally have. I'm hopeful that Dr. Maciejewski's PRCA expertise can better inform the next step. In the meantime, I so appreciate this site and your participation; we haven't found any other people with this combination, so we're back and forth between CLL and PRCA to gather as much info as we can.
That is a great amount of experience with PRCA.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #7  
Old Thu Aug 7, 2014, 07:28 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
I just sent you a private message (I guess it was actually an email) regarding a member of this forum who has PRCA/CLL.

Let me know if you are able to send a message..
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Thu Aug 7, 2014 at 07:47 PM.
Reply With Quote
  #8  
Old Fri Aug 8, 2014, 06:59 AM
Reneesctmiller Reneesctmiller is offline
Member
 
Join Date: Jul 2011
Location: Clermont, FL
Posts: 8
Hubby with PRCA - sort of :)

Hi there, my husband has PRCA (5 years now) and originally they thought he had CLL as well. The CLL has not shown itself now since that first year of his illness. We go to see Dr. M now too and highly recommend it. He has the most up-to-date and OPTIONS! While my husbands condition remains the same (he transfuses every other week), we've been trying alternative treatments to see what might work. Our challenge is that he has Red Cell Aplasia, but not necessarily all the markings for 'Pure'.

We now joke that of the rare, he really is unique wish it had been the lotto instead!

Let me know if you have any questions - we've been dealing with frequent transfusions and travel to Cleveland now for awhile. Our local dr. is great, he actually did his residency in Cleveland with Dr. M (what great luck to find him here in FL, in our town!!!). We've tried a host of treatments, right now after this year's visit 3 different, fairly non-invasive drugs. Then we might be doing ATG next year. So we still have a journey ahead of us!
__________________
Renee, wife of Brian age 44; dx Prca 2009 & possibly CLL, w/iron overload; treated with prednisone, cyclosporine, rituxan/cytoxan, Exjade & Desferal; spleen removed ‘10; currently transfusion dependant w/iron overload; on Exjade & pending next step in treatment. Patient at Mayo Clinic, Jax, FL.
Reply With Quote
  #9  
Old Fri Aug 8, 2014, 11:32 AM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Thanks for posting.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #10  
Old Fri Aug 15, 2014, 11:03 AM
Laurie S. Laurie S. is offline
Member
 
Join Date: Aug 2014
Location: New York, N.Y.
Posts: 11
Good morning, I'm just catching up w/emails, I sent a private msg to Renée, too. My husband was just approved for the new CLL drug, Imbruvica, and we'll see his CLL doc on Thursday to get her recommendation re: next steps. The cyclosporine doesn't seem to be working; after 8 weeks, Larry is still getting transfusions every week or two, his hgb is in the high-6's, low 7's, and the fatigue is very hard on him. If his doc hasn't called Dr. Maciejewski, we'll call his office on Thursday to get an appointment for a 2nd opinion.
Reply With Quote
  #11  
Old Fri Aug 15, 2014, 11:58 AM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
I see him on Sept 17. If you get that day, let me know. We can do lunch.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #12  
Old Fri Aug 15, 2014, 12:43 PM
Laurie S. Laurie S. is offline
Member
 
Join Date: Aug 2014
Location: New York, N.Y.
Posts: 11
Sounds good
Reply With Quote
  #13  
Old Fri Aug 22, 2014, 07:06 PM
Laurie S. Laurie S. is offline
Member
 
Join Date: Aug 2014
Location: New York, N.Y.
Posts: 11
my husband spoke w/Dr. M. today; it sounds as if he's had fewer pts with both disorders than the current doc, who's recommending Campath if Larry husband doesn't respond to the cyclosporine. It's very confusing, I made several calls today, and I haven't found someone who's seen a substantial # of both. Larry's doc did report that he's showing a very slight sign of retics, but she's not ready to say it's a real response yet... wants to give it another couple of weeks to know for sure. Campath would be a shot 3x per week for 6-8 months! A real jolt for us after a year of several of them.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Sloan Kettering Herbs/Supplements site & App dfantle Alternative Treatments 1 Fri Nov 14, 2014 06:07 PM
How did I just now find this site??? Brendan AA 10 Fri Dec 2, 2011 04:04 PM
I am an AA spouse and new to this site.... trialad2 AA 9 Tue Apr 7, 2009 02:23 PM
New to Site nana of sadie Tell Your Story 4 Thu Mar 13, 2008 03:59 PM
Caring for the IV site (Hickman catheter) magpie75 Questions and Answers 2 Fri Jun 15, 2007 10:56 AM


All times are GMT -4. The time now is 04:01 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org