Had stem cell transplant the start of June and recovery thankfully has been somewhat positive. Mental health has took a severe hit due to the change in life and brought up past problems. Drs are aware though but my local team are sometimes difficult to work with and ignore my mental health issues as opposed to my transplant team. And main thing is last Bone marrow transplant was no signs of Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) at all.
So anyways reason of post, I got my chimerism done a month ago roughly and due another beginning of December. Last one showed 100% myloid but lymphoid had dropped to 26% and they talked about a dli. Then the held of to await this chimerism saying sometimes it does take a few weeks longer than they were expecting ao im really hoping it does go up.
Im nervous about the dli, I know wat to expect but mentally this has all left me in such a bad state that they suspect the hospitals have become a part of my ongoing struggles with ptsd relating to other things. So im trying very hard to manage that the best I can.
But does anyone have stories of their experiences after stem cell in terms of the chimerism and also the dli if they needed it? Hearing others experiences somewhat helps.
Thank you and I hope everyone’s journey is going well.
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Hi @Lopsided and welcome to the forum.
I can sense how worried you are and I am sorry that you are not supported by all of your medical team with regards to your mental health.
I’m really glad your recovery is going well. However, you have been through so much in such a short space in time and I’m not surprised your mental health has taken a hit? Have you been offered any help for this?
The blood cancer support line is amazing and is a really good place to talk things through of you think it may help. Here is the link.
I’m hoping others will be able to share their experiences with you and have copied in the @BloodCancerUK_Nurses as they may be able to provide you with more information.
I’m glad you have found the forum. It’s such a supportive place and I hope you find it a space where you can say how it really is for you.
Please look after yourself.
Nichola 
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Hi @Lopsided
Welcome to our forum.
I am sorry to read all that you have been through with your diagnosis of Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) and having a stem cell transplant. This has been a really difficult and challenging time for you. I am pleased to hear that your recent bone marrow showed no signs of Acute myeloid leukaemia (Acute myeloid leukaemia (AML)).
Its understandable that you are nervous about your chimerism levels and requiring DLI. Often, the chimerism will be monitored for a period before DLI is decided as it can fluctuate. The chimerism looks at the ratio of stem cells from your donor versus from your own cells and is monitored regularly post transplant. I have enclosed some information from our colleagues at Anthony Nolan which explains this in more detail Anthony Nolan Donor lymphocyte infusion
You have been through so much both physically and mentally these past few months. Sharing how you are feeling is so important. The feelings you share are something we hear often so please know you are not on your own in feeling like this.
Some people find hearing from people who are going through similar things useful, so you may find this particular blog useful to read through -
- The emotional impact of treatment | Blood Cancer UK
Have you been offered any psychological support from your team? I have enclosed a link to our health information pages on mind and emotions. It discusses things that you might find helpful and ways to look after your mental health Mind and Emotions
If it would be helpful to talk to the nurses or we can support you in any way, @Lopsided please do not hesitant to contact us on our confident support line 0808 2080 888.
Take care
Fiona (support services nurse)
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