Looking for the post on the stage 2 trial of treatment of AIHA (anemia)

[Ezjacobs]

I had seen this post recently and could not find it when I wanted to share it with my oncologist. I have AIHA associated with CLL was treated with Rituxin + steroid. The treatment did not work and I would like to avoid general treatment of the CLL for the time being. I would appreciate help in finding this post. Thanks, ezjacobs

[Psmithuk]

I'm sorry I can't help you, hope someone more tech savvy than me can answer.

May I suggest you lock your post to CLL members only.

Good luck!

[Ezjacobs in reply to Psmithuk]

Will do, good idea! Elaine

[AussieNeil Administrator]

Was this AIHA posted recently or did you come across it recently. I know search doesn't work very well on this site, but if you can't find it here: healthunlocked.com/search/a...

try here: google.com.au/?gfe_rd=cr&ei...

(or just use a Google search for AIHA and any other key words you remember from the post and include site:healthunlocked.com/cllsupport with the search terms.)

Hope this helps,

Neil

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

Is this it - The only one that comes up active and recruiting on clinicaltrials.gov -

ClinicalTrials.gov Identifier:

NCT02612558

First received: November 19, 2015

Last updated: March 16, 2017

Last verified: March 2017

Type the Identifier into the search box. Locations are at the bottom of the page.

[Ezjacobs in reply to AussieNeil]

It was a recent post- (in the last month). I flagged it but it hasn't come to the fore. Thanks, Neil. Tried google and will try again. Elaine

[Hidden]

My 82 y/o mother has CLL and since beginning treatment in December, she has developed AIHA, with quite catastrophic effects on her haemoglobin levels, dealt with repeated (almost weekly) blood transfusions. (Will they ever say "you've had enough - you're depleting the blood banks!"?).

Steroid treatment for AIHA seems to have resulted in very bad/ unacceptable swelling in feet and legs, so that she can't really walk. Anyway the steroid treatment has been reduced and she has been taking "water" tablets and keeping her feet elevated. As a result, the feet/legs are improving.

My reason for posting is I that I have seen very little on AIHA on this site and I am interested in any information/ experiences. The doctors told me that AIHA is not uncommon in older CLL patients. Can anyone point me to further information on/ other experiences of AIHA?

Thanks

[Ezjacobs]

I was treated with a combo of Rituxin and a steroid. I had 4 infusions one each week fir 4 weeks. Unfortunately I didn't respond. Many do! Next I will probably try Gazayva another monoclonal antibody. Good luck!