DLI (Donor lymphocyte infusion)

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Jayne
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Joined: 16 May 2011 11:33
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DLI (Donor lymphocyte infusion)

Postby Jayne » 14 Jul 2013 18:59

Hi Everyone

Last week I celebrated 1 year post transplant (6th July) and I have to say I am feeling really quite ok!

However, I found out on Friday that although my latest chimerism test shows I am 98% donor, my lymphocytes (t-cells) have dropped to 72%. As my consultants don't want them to drop further I am having DLI on Friday 19th July. I feel a bit gutted as I wanted to get to 100% on my own.

I know what to expect and the risks, but I just wondered if anybody had DLI and how they responded?

Thank you
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: DLI (Donor lymphocyte infusion)

Postby janetstanford » 15 Jul 2013 09:37

Hello Jayne
As you know i can not give an insight into this ,just wanted to say i am sorry to hear your news but you have come such a long way over the last 2yrs and faced so much,got through the other end :D i am sure you are able to cope and take it in your stride as you always have :D
Good luck for Friday and reaching 100% yourself in the future
Janet :D
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: DLI (Donor lymphocyte infusion)

Postby chris » 16 Jul 2013 21:59

Hi Jayne

I think John had a DLI top-up from his brother but I guess you are in touch with him through CaringBridge? Goes to show how good it is that you are being monitored so closely so they can jump in and act where necessary. Hope it will be OK.

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
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Re: DLI (Donor lymphocyte infusion)

Postby Sarah Reakes » 16 Jul 2013 23:30

Hi Jayne,

Sorry to hear your news but at least your team are on the case and dealing with it quickly. I have read your Caringbridge Blog and I have already posted there as well and I did note that John Watson has given his personal experience of having a DLI which must be reassuring for you.

I will be keeping everything crossed for Friday and it's good that you are having sedation for the BMB.

As ever, keep positive and try not to worry too much.

Take care.

Sarah x
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: DLI (Donor lymphocyte infusion)

Postby Jayne » 21 Jul 2013 18:53

Hi All

Just to let you know I am fine!!!

Never felt my bone marrow biopsy....I love sedation.

Regarding my DLI it was quite intriguing! They were delivered in a large metal drum, my nurse put large goggles on and when she removed the lid there was loads of white smoke (liquid nitrogen), it was like being in a mad professors lab!!!! She then removed a white box, and my lymphocytes were in there! Such a small bag. They were put in a warm bath to defrost, whilst being careful that they weren't overheated because this would have killed the cells.

They were then transfused in a matter of minutes. Once the flush went through, I was allowed home within half an hour. That said, I was there all day. Mainly because I cocked up and had a cup of tea in the morning which meant I couldn't be sedated until 2pm for my bone marrow biopsy despite arriving at hospital at 10am. This was because there was a risk my cup of tea would come back up and flood my lungs.....better to be safe so I wasn't bothered and enjoyed a day of rest, haha.

Anyway, I feel just fine at the moment and have spent a lovely afternoon in York with Martin, walking round some of the streets we don't usually walk round....we didn't want to shop and it was beautiful. The minster bells were in fine voice and there was a massive cycle race on round the city. A nice afternoon.

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: DLI (Donor lymphocyte infusion)

Postby janetstanford » 21 Jul 2013 19:54

Hi Jayne
so good to hear your news i am pleased for you and all that smoke yes it would seem like a mad profs lab and the bi-op i had 1 in february and had it with no sedation just a muscle relaxant because i wanted a doctor who i knew do it and not go to the surgical unit mind i have to say not too bad only really felt it when sample taken and on the way out :shock:

Glad you had a good day in YORK my daughter was off there today on the 11.20 for 5 days we as a family have been so many days out there in fact when my son was 8 he asked to go there for his birthday to yorvik ( spell ?) i still wear the necklace he bought me out of his birthday money :D
Hope to hear from you again best wishes Janet
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: DLI (Donor lymphocyte infusion)

Postby chris » 23 Jul 2013 13:14

Hi Jayne

Glad all went well. Playing the waiting game again now I guess- for both the Bone Marrow biopsy results and the DLI effect/GvHD - if any. As ever, hope that all goes well for you and glad you had such a lovely day in York - somewhere I really must visit one day. We have just had our first rain for 3.5 weeks and sooooooo glad we haven't got to water the allotment again tonight!!!! I was getting arms like gorillas with carrying all the watering cans back and forth!!!

Take care

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex

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