Have you had a BMT?

Hi Kestral

You know all of the following who I will mention who had DLI post BMT and I think you have there email address. Elizabeth Rees, Sandy Craine and Richard Constable to name but a few.

I am sure they will be happy to assist you further.

Lots of Love

Steven D

Hi Kestral,

Yes I have had DLI after sct. It was planned as part of my reduced intensity SCT because it is known that in most cases RICsct's do not get rid of all residual disease.

After my sct I took 400mg imatinib to guard against relapse until 11 months post transplant and to make sure I had the best chances of avoiding GVHD. It is known that the longer the gap from sct to DLI the less the chances of serious GVHD.

My pcr's during the following 12 months were stable at 0.002%.

At 12 months post transplant (OCT 04) imatinib was stopped and pcr's were monitered every 2 weeks.
bcr/abl% rose (very slowly) over the following 25 months and when pcr's reached 0.4% I was given my first DLI, which consisted of 2.5 million mature donor lymphs (not stem cells)

This is a deliberately low dose as too many DL's at one time can induce life threatening GVHD.

Monthly Tests showed if there is any response (none in my case) and after 12 weeks another infusion was given. This time double the dose at 5 million.

To cut the story short.... I was given 4 DLI's in total before a response was seen (4th DLI consisted of 50 million donor cells) and after approx 12 weeks after that all traces of bcr/abl vanished.

The time line for all this was:

*RICsct October 2003
*400mg imatinib started at day +35 post sct.
* " " stopped 11 months later...October 04
*monitored by pcr until a rise to approx 0.4%
which in my case was over 2 years from initial SCT
*DLI introduced- 2.5million Dlymphs on 15th November 2005
*total of 4 DLI's -each increasing the number of donor cells- over the following 12 months
*4th DLI (50 million donr cells)given on 5th October 2006
*Monthly PCR's show decreasing bcr/abl levels
*December 06 shows very low levels and by March 2007 all traces of CML gone.

In my case the response to DLI was only to the higher level of donor cells... some patients respond to much lower doses and respond to 2nd or 3rd.

Patience is needed to see this through, but in the end it is worth it.

I now have PCR's at 3 monthly intervals and remain negative.
I do not need to take any drugs... and have a healthy immune response to infections etc. I do not even need to take antibiotics.

I know both Rio and you must feel disappointed, but DLI is a known 'curative' procedure for relapse post transplant... which can and does happen.
I hope this is of some help.
Please read my diary for details of my experience.

Sandy

Hi Kestrel
Aaron also had DLI - in fact we were told that it would more or less be expected to have this.
Much love
Jayne x

my name is robert fox. first , let me say i've had 3 bmt's and 3 or 4 dli's. the 3rd bmt plus the dli (dli done feb 22,08)seems to have done the trick (so far) but it made me very ill with acute gvhd. i was in the hospital for nearly 3 weeks but we achieved the desired result: namely, the graft-vs-leukemia effect that is apparently the "good" part of graft vs. host. you can't have the graft vs. leukemia effect without some graft vs. host disease, which can be very nasty because it involves high-dose steroids(namely prednisone in my case) that destroys muscle and can cause early-onset osteoporosis, cataracts, muscle pain, etc. which are symptoms of the speeded-up aging process prednisone can cause. of course, it also saved my life! graft vs. host is no picnic but, as steve miller so eloquently sang, "you gotta go through hell before you get to heaven!" this is the longest i've been undetectable since diagnosis in feb. 02. 7 years this month. i'm not sure of the statistics on graft vs. host post dli and it can be acute (usually within the 1st 40 days post dli) or chronic,(usually after the 1st 100 days) both of which i am lucky enough to have experienced. chronic involves nasty little things like rawness and burning in your mouth, mutation of finger nails(very ugly), early-onset cataracts (easily taken care of, usually) and paper-thin skin. some others i've forgotten. but dli has (i believe) a high rate of cure post bmt(this you can check with your docs.) that's enough now, i think, and some people experience the g v leukemia effect without developing acute g vs. host disease. in this cml business, everything can and does seem to occur. best of luck. robert p.s; whereas sandy said only the last dli with 50 million cells worked, i received 580 million cells! (no t-cell mediation which can increase chances of gvh but also increases likelihood of gvl effect.) the more mediation in the donor t-cells, the less chance of developing gvh, as i understand it, but the mediated donor t-cells also increase the chance of relapse. r.f.