Please read the house rules and keep this community safe for yourself and others.
Minimal Residual Disease after transplant
My husband had a bone marrow transplant in January & the first bone marrow biopsy result done on day 30 has shown minimal residual disease of 0.2. We spoke to my husband's consultant yesterday & he said 'it's not good' but didn't elaborate. He the reduced my husband's immune suppressant drugs. How bad is 'not good'? I'm so utterly confused and stressed by all this.
Comments
Hi there and welcome to the forum. I'm Steve, one of the online community champions and was a transplant recipient seven years ago. I'm sorry to hear that your husband has had some cells show up in his bone marrow biopsy, which I'm sure is disappointing and distressing to you both.
I'm not sure what the measurement of 0.2 means in particular but I can understand that any sign of minimal residual disease is worrying for you and your husband. I'm sure one of the Anthony Nolan team may be able to elaborate on what this means in more detail.
The fact that it is 'minimal' perhaps gives some hope. There are several patients here on the forum who have relapsed after their transplants and have had signs of their illness come back similar to your husbands case and who have been treated successfully. There are probably a variety of courses of treatment that can be followed to get your husband back into remission and if necessary undergo a second transplant or a stem cell top up. Second transplants and top ups are more common than you might expect and thanks to campaigns by organisations like Anthony Nolan they are routinely funded by the NHS.
I know it is a shock, but my advice would be to concentrate on finding out what the next plan of action is and to speak to your husbands medical team to find out what options are available and what they are considering. They will have seen this in patients before and will probably already know what they can do to resolve it and they need to discuss that with you both.
If you feel you need independent support don't hesitate to contact the Anthony Nolan patient services team by telephone or email. See https://www.anthonynolan.org/patients-and-families/get-support-us
I hope this helps a little and I'm sure that others will offer their support too. It's important that you have support yourself too, as it can all be as stressful for relatives as it is the patients. I hope you have family and friends that are helping you but again, the Anthony Nolan team can offer support, and this forum is always available for you to ask questions.
Please keep us updated as you get news, and please let us help you through this.
Wishing you and your husband all the best,
Steve
Hello, I am the lead nurse in patient services thank you for posting.
I am sorry that this was not explained to you and understandably you feel anxious about what this means for your husband. Very early after transplant bone marrow samples are taken for two reasons, one is to ensure that the new stem cells are regenerating and another is to ensure that there is no disease.. Detection of disease can be seen by looking through a microscope, which is how we see 'blasts' or it can be seen at an even deeper level using special tests and this is how we see minimal residual disease (MRD). A positive MRD result means they have found evidence of the disease but at a relatively low level that cannot be seen through a microscope. Understandably this is a concern to you and your husband, it is not relapse but can be an indication of a potential relapse if nothing is done. MRD is very useful to enable early intervention that could prevent relapse in the future.
The consultant has reduced his immune suppressant drugs to try and cause some graft versus host disease (GvHD). This is when the new donor cells (graft) recognise your husbands cells (host) as being different causing a reaction. The reaction can also cause graft versus leukaemia effect (GvL) and can help fight any remaining disease. You might have been told about GvHD and that it’s good to get some GvHD and fighting disease and keeping people in remission is the reason why. At this early stage this would be called acute GvHD which affects the skin, liver and gut so you should be looking out for signs of a skin rash or changes in bowl habit such as increased diarrhea. Changes in the liver are normally seen on routine blood results so will be monitored by his transplant team. If your husband notices any changes you must inform his transplant team, please do not wait until the next appointment. If he does not experience GvHD initially the team will continue to reduce the immune suppression and might do this quite quickly. This will sound daunting but as long as you monitor for any changes and let the team know GvHD can be controlled. For more information you can download our booklet here https://www.anthonynolan.org/sites/default/files/Essential_GvHD_2018.pdf
I realise this is not news that you wanted but your husband is very early post transplant and although this is disappointing for you both there are ways that MRD can be treated to stop it becoming a relapse. Maybe when you next see the consultant ask them to explain the plan so you know what to expect in the next few weeks. I am happy to discuss this further or if have any more questions please feel free to call me on 0303 303 0303.
Keep on touch with his progress.
Best wishes
Hayley
I know I should have asked for more detail from the consultant but the truth is he's rather an abrupt intimidating guy so I never feel like I can say anything. I now commonly refer to our meetings as my 'nodding dog' moment as I feel that pretty much sums up my contribution.
I will continue to hope there is no evidence of the MRD in the next bone marrow bipospy result. Many thanks for your replies.