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Frightened about reults
Really need some help my world is falling apart 💔 The CNS has come in to see my husband today and basically said they don’t know whether it’s the original Leukaemia or secondary leukaemia it’s really rare to relapse after all this time (16yrs post bmt)and there isn’t enough study’s to show how to treat. If he doesn’t get remission after this she basically said he’s coming home to die 💔 but if it’s down to just above remission he might be able to have another round of FLAGIDA. I’m feeling completely heartbroken as yesterday we were fine and now he’s arranging his funeral. They also said they’ve only had 3 patients like this and both died. I’m so sorry for the constant posting but I’m feeling so alone right now.
Comments
Hi Beaglegirl,
There's probably nothing I can say that will help you feel any better as it does sound like you are going through some very difficult times and it is hard to come to terms with what might happen.
It sounds to me like you need to speak to someone directly who can hopefully provide you with more support than we can give here on the forum. I'm not sure if you've contacted the Anthony Nolan team previously but you can contact the Helpline directly on 0303 303 0303, Monday to Friday, 9-5 - excluding Bank Holidays. They will be able to talk more openly about what is happening with your husband and help you yourself.
The Anthony Nolan team can also refer you to specialist help via the Telephone Emotional Support Service, provided by Working to Wellbeing, which is a team of wellbeing specialists including qualified psychologists. They may be able to give you more specialised support to help you deal with what is happening to your husband. Drop the Anthony Nolan team an email to patientinfo@anthonynolan.org and request a referral. There's more details about this service on the link below.
https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
I really hope that a way can be found to treat your husband and that the outcome is successful. I'm sure everyone here on the forum feels the same and is with you every step of the way.
Please do contact the Anthony Nolan team directly by telephone or email and seek help from their specialists. I know you feel alone which is why you need their help.
Sending best wishes.
Steve
Hi Steve,
I’ve already been referred to the support team but I’ll be honest it isn’t helping. Now after this blow I’m feeling very low and I can’t hold on to any hope and just keep thinking the worst. My husband is very much doom and gloom as the nurses are really in supportive although he doesn’t like to speak to anyone about how he’s feeling. He’s had DA and the blasts went down to 29% so now on day 14 of FLAGIDA but he doesn’t feel I’ll so he keeps saying it hasn’t worked. Last time his hair fell out and he had real bad mucositis but this time nothing. I’m beginning to think that the hospital is very limited and can’t afford treatments. Thanks Alison
Hi Beaglegirl,
I'm so sorry to read this update from you, I can only imagine what you and your husband are going through at the moment. It's an incredibly difficult situation to be in, particularly when you're waiting to see what the results are, to know what the next steps will be.
As you've been made aware this is a rare scenario but the hospital will be used to dealing with relapsed disease even if it isn't in these circumstances. The chemotherapy regimens you mention are well utilised where relapse or new diagnosis has occurred. It may be worth asking the clinical team if there are any research trials that your husband could be considered for, it's likely they have already scoped this out, but it may help you to know?
If you'd like to talk any of this through further please don't hesitate to contact us on our patient helpline: 0303 303 0303, Monday to Friday, 9-5 - excluding Bank Holidays.
Sending best wishes
Rachel Miller- Lead Nurse