Any experience with MDS relapse and DLI?

[Paulag]

I have been reading these forums since my husband (now 59)was diagnosed with MDS (RCMD) (blasts under 2%) in November 2012. The advice, insight, and support has been extraordinary. thank you.

Now, I'm seeking some advice to see if there are others who know about or had experience with a Donor Lymphocyte Infusion (DLI). "A boost of stem cells from your donor."
My husband had a SCT on July 16, 2013. He was part of a clinical trial for an ATG. As I understand it, this manipulates the donor cells and reduces (not eliminates) T cells. In recovery, he had some bumps--he had severe headaches when he was home, but Dr. believes that was most likely due to the EBV virus. Was treated with Rituxin. No more headaches and EBV gone. He has had no GVHD, but does have high ferritin due to the transfusions he was receiving before the SCT and while in the hospital. The Exjade has been amazing and his ferritin has declined dramatically and liver and kidney numbers are all normal. His January BMB was good (don't have his numbers in front of me)

All his counts were rising, but then they started to stall and, then whites and reds started declining. He has been off his immunosuppressants. Doctor ordered another BMB and his MDS is back. Doctor said he needs DLI and has started process to contact donor (I hope she is willing and able to give again.) Dr also talked about the possibility of giving him Vidaza (which my husband never had) in conjunction with the DLI or if he thought the donor would be delayed too long. He also mentioned that there were a few clinical trials, but for now. the DLI is the best route. He said it was outpatient and my husband could continue to work. (He started working from home mid-March and just started going into office beginning of May and then, this all started.)

I trust his doctor and sometimes have trouble keeping all of this straight, but I just wanted to see if anyone on the forum has gone through a DLI and can offer some insight. When my husband said he wanted the SCT, I was most nervous about the GVHD--I guess I didn't think about this scenario as much especially after 9 months. Looks like the GVHD is a big concern again.
Thanks for any info.

[DanL]

I am very sorry to hear of your husband's relapse. I do not recall anyone on the forum going through DLI, but there are a few articles discussing its use in relapsing blood cancers. It appears that the ones that were successful had DLI with some form of chemo to reduce the relapsing MDS, whether it was induction type chemo or whether it was vidaza.

I wish that I could provide more information for you. Hopefully this will help with questions when you speak to your husband's doctor next time.

Dan

[sbk007]

One of our members goes by the handle "Jill2008" relapsed and has been on Vidaza for 3 years. Here is her thread:
http://forums.marrowforums.org/showthread.php?t=3882

All the best - Steve

[Jill2008]

Hi,
I had a SCT on May 25, 2010 and relapsed the following January. I was told I had three weeks to maybe a few years to live. I started IV Vidaza in Febuary 2011 and will begin my 26th cycle on Monday. I started out every 4 weeks and they had to move it out to 6 because my counts were not recovering fast enough. It's been 3.3 years and as you can see by my counts I'm doing good. It took until about cycle 14 to start working for me and it was a little rough going, but everyone is different. I have been transfusion free for almost two years! I just had a BMB on Friday to see if I am still 100% donor. If not, my hematologist talked about this procedure of infusing stem cells to help boost production. We are just waiting on the results. Keeping my fingers crossed! A second transplant is just too risky according to my transplant doctor. Best wishes to you and your husband!
Jill

[Paulag]

Thank you for your responses. Jill, I wish you the best with your latest BMB.
The donor has agreed and my husband will be having the DLI. We are just finalizing the date--some time in June.
This last visit his whites bumped up slightly and after transfusion of two units the prior week, his reds held so he didn't need a transfusion . We were back to going to doctor weekly, but now bumped to two weeks--great visit for us.
This Sunday, I, along with my daughter, niece, and some friends, will be doing a 5K fundraiser (I walk, daughter runs) for Leukemia and Lymphoma. He will come to cheer us on. So, we're moving forward with optimism.

[Jill2008]

This is great news! I'm glad his donor has agreed and they are working on a date. In my case, my donor is now 50. Not sure how they will proceed or if I am even a candidate for DLI yet. Still waiting on the BMB results. I'm hoping to hear something in the next few days. Praying that everything goes well for your husband. Please keep us posted.
Jill

[Paulag]

I just wanted to give a quick update. My husband had his DLI on June 13. He was given a small amount and the rest is frozen in case he needs more at a later time. He started showing signs of GVHD on July 7--very slight rash and slightly elevated liver numbers (ALT, AST). Rash increased--Dr. called it "stage 1" and gave him prednisone. Rash cleared up quickly, they are tapering prednisone and liver numbers heading towards normal range. Prior to this, all of his counts low--WBC bounced between 1-2, HCT down to 22--getting two units every 10days, platelets 8-12 (but clotting fine).
Since last Wednesday, his whites started increasing and now in the normal range (5.5) reds holding since last transfusion two weeks ago (HCT 29), platelets still low, but holding (12-15.) Chimerism has donor at 49% (was 14% on July 2) so we are making progress. Continuing to reduce prednisone. We don't have to go back for check up for 10 days. Slow and steady-- headed in right direction.
On another note, July 16 was one year and under ordinary circumstances we would have been able to make contact with his donor (if she agreed). Since he asked for a second donation before one year, we need to wait another 60 days. We owe her a double thank you!!

[katgio50]

Thank you for the follow up report on your husbands DLI. We are most interested in any info that you can continue to report as we may be headed down that road. It is interesting how different doctors use different protocols. Your husband has not had Vidaza and my husband is starting that prior to any DLI.

[Paulag]

It has been a while since I've posted--not the best journey, but hopefully back on track. My husband did have his first DLI in June and then, needed a second DLI beginning of September. After a couple of weeks he wasn't feeling well and started running a low grade fever. Dr. thought he might have pneumonia, but had several tests and not the case. They did BMB and unfortunately he had AML with 33% blasts. He was in hospital beginning of October for 33 days. Just got out two weeks ago. He had induction chemo 7+ 3 protocol. First BMB showed no blasts so fortunately he did not need the possible second round of consolidation chemo. He was in hospital a little longer than the expected 30 days because his ANC was slow to come back. He really felt fine and was going a little stir crazy. He is now considered in remission and his chimerism showed 100%donor. He just had another BMB and we will be meeting with doctor this week for results. We will then need to discuss choices for next steps--do nothing and watch; another DLI (he has two more frozen bags);Vidaza; or, another transplant. Not sure of the timing on anything--will know more once we meet with doctor. Hopefully this next BMB will continue with no blasts and 100% donor.

[Whizbang]

Prayers go out to Paul, that his remission may be durable...

I'm on a similar path, although with slightly different numbers, the 7 + 3 never got me into remission, so I'm on a clinical trial that has slowed the progress of my RBC Leukemia... DLI is on the table for later this year / early next year...

All the best, and may God Bless!!! (us all)...

[Whizbang]

Not sure if this was posted before:

http://www.9news.com.au/health/2014/...a-breakthrough

3:01pm November 14, 2014

Qld scientists make leukaemia breakthrough

Australian researchers have made a breakthrough in the treatment of leukaemia patients undergoing bone marrow transplants, finding a way to reduce the incidence of a potentially fatal complication.
The researchers say their discovery will change international practice for the treatment of leukaemia patients undergoing bone marrow transplants.
In trials at Brisbane's QIMR Berghofer Medical Research Institute and the Royal Brisbane and Women's Hospital, researchers have made significant gains in reducing the incidence of "acute graft versus host disease", a potentially fatal complication that can arise from stem cell transplants.
They did this by adding the drug Tocilizumab - currently approved for use treating rheumatoid arthritis - to the transplant medication regime.
The incidence of acute GVHD was reduced from the usual 50 per cent, to 12 per cent of transplant patients in the trial, they said.
Severe cases - which often result in death - were reduced from 21 per cent to four per cent.
Queensland Health Minister Lawrence Springborg has praised the outstanding research work.
"We all stand to gain from advances in medical research, and yet again QIMR Berghofer is producing results that add to the world's knowledge and change lives," he said.
A phase three study now underway will be the final test before the addition of Tocilizumab to the GVHD prevention regime is registered and adopted in clinical practice.
© AAP 2014

[Cheryl C]

Fantastic news Whiz - and from my home state of Queensland! Hopefully it won't be very long before this drug will be available to many more people.

[Chirley]

And to think I worked for this research centre for a couple of weeks on a casual basis and they never did get around to paying me! Oh well, maybe the money went to a better cause than paying their casual staff.

[italianburrito]

Originally Posted by Paulag

It has been a while since I've posted--not the best journey, but hopefully back on track. My husband did have his first DLI in June and then, needed a second DLI beginning of September. After a couple of weeks he wasn't feeling well and started running a low grade fever. Dr. thought he might have pneumonia, but had several tests and not the case. They did BMB and unfortunately he had AML with 33% blasts. He was in hospital beginning of October for 33 days. Just got out two weeks ago. He had induction chemo 7+ 3 protocol. First BMB showed no blasts so fortunately he did not need the possible second round of consolidation chemo. He was in hospital a little longer than the expected 30 days because his ANC was slow to come back. He really felt fine and was going a little stir crazy. He is now considered in remission and his chimerism showed 100%donor. He just had another BMB and we will be meeting with doctor this week for results. We will then need to discuss choices for next steps--do nothing and watch; another DLI (he has two more frozen bags);Vidaza; or, another transplant. Not sure of the timing on anything--will know more once we meet with doctor. Hopefully this next BMB will continue with no blasts and 100% donor.

Hey Paul, any updates on how you are doing?