Hi, I was diagnosed withAML again in April this year. The first time being in 1981 when I was 12 years old. They don’t know whether this is a reoccurrence of the original leukaemia or another episode due to the lack of gene testing in the early eighties.
Despite my history, it came as a complete shock back in April, I’d put all my symptoms down to stress, but had a blood test to rule out anything else. I got the telephone call whilst at work, and was told to go to hospital immediately.
They also found I had long standing heart failure which had been asymptomatic, which they think was due to the chemo, back in the eighties as scan showed no sign of heart disease. The result of which is that I’m not a suitable candidate for high intensity chemo, despite being 54 and active prior to diagnosis. I’ve now had 2 rounds of azacitidine and venetoclax and went into remission after the first round (0.4% blast cells) but my neutrophils are taking a serious hit and have been 0.01 for the past few weeks which has delayed round 3. In the meantime I’m terrified of getting another infection as I’ve been hospitalised twice and treated for neutropenic sepsis.
I met with the transplant consultant on Tuesday, my brother and sister are being tested but I don’t expect them to be a match as they weren’t in the 80s so I’ll probably need an unrelated donor if one can be found. The survival rate for someone in my position was less than I expected, but without the transplant he felt sure it was only a matter of time before I relapse.
Husband and I are reeling from this information, and both of us are tearful most days. We’re trying to just focus on 1 day at a time, get out for walks and try and carry on living, whilst trying to avoid people and infections.
I’ve worked in the NHS for 31 years and am trying to get early retirement on health grounds, but it feels like I’m having to jump through hoops. I’m not sure how I’ll you have to be before you can get this, but I can’t see me working back on a mental health rehab ward with a weakened immune system
Dear @Kate1
Thank you for posting and welcome to the forum. I hope being here will help you find support and feel less isolated. I am so very sorry that you are going through a diagnosis of Acute myeloid leukaemia (AML) again, it is no wonder you are in shock and tearful.
May I ask if you have a Clinical Nurse Specialist that you can talk to and discuss treatment plans with? Venetoclax and Azacitidine is a very successful treatment even though given as an outpatient. Often the Venetoclax can lead to your blood counts taking some time to recover and delay consecutive courses. It sounds like you are doing all the right things with exercise and avoiding infection risks.
Would you like to talk through things with one of us here at Blood Cancer UK, you can either call through when you have a chance Blood cancer information and support by phone and email | Blood Cancer UK or we can schedule a nurse call?
In the meantime please do have a look at some of the resources below and know that we are here if you should need us.
Take good care,
Gemma Blood cancer: money and work | Blood Cancer UK Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop
Hi @Kate1 and a big welcome to the forum.
I’m so sorry to hear you are going through this again. It must be bringing with it a roller coaster of emotions for you and your husband and I understand you are just taking a day at a time.
Jumping through hoops for early retirement is not an added stress that you need so I do hope you manage to get this sorted out. Are you able to get support with this from your union?
Getting out is so good for your mental health so keep up with the walks.
I can see Gemma has given you lots of useful information and the support line number. Please give them a ring if you need to. They are great and sometimes it helps to talk things through.
In the meantime please keep posting. We are all here for you X
Hi @Kate1 I would like to welcome you as well, you are not isolated on your own now as you are part of our forum family.
I am not surprised that you and your husband are in complete shock, I think any diagnosis shock and scares most of us.
The first time you had leukaemia at 12 yrs old I would have thought must have been really isolating and scary.
I believe treatments have really changed over the years. @GemmaBloodCancerUK and @Nichola75 have given you brilliant responses that I will not repeat.
I have heard that the talk with the transplant consultant is also a bit of a shock and scary.
Perhaps your husband and you just need time and I think tears are far more healthy than stuffing your emotions down as I did.
Yep, taking it one day at a time sounds good to me, it is an emotional, medical, physical and practical journey, I am far more emotional since my diagnosis and my thoughts and emotions can be really conflicting.
Yes, try and carry on living and I personally am a great believer in fresh air and walking.
As for work just take it steady, your health comes first you have your Occupational Health, the Union and ACAS you might contact in time.
Please keep posting how you are.
Be kind and look after yourselves
Gosh, I can only imagine how afwul it is to be diagnosed with Acute myeloid leukaemia (AML) for a 2nd time, many years after the first diagnosis. Once is enough! And you must have reached a sense of it being firmly in the past. You must be so shocked and worried. I’m so sorry.
If it helps at all, the transplant talk for all Acute myeloid leukaemia (AML) patients is pretty grim, and we’re all given statistics that do not fill us with hope. There was a thread here containing this conversation just last week (involving me and Sarahmum, if you want to look it up.) I was given a 45-50% chance of being alive and disease free two years after transplant. That terrified me! But the fact is, every Acute myeloid leukaemia (AML) patient who is offered a transplant has either got gene mutations with a poor prognosis, or has had a relapse, like you - so they remind us of the severity of our situation in this conversation, not realising we take it so personally to our individual situation. I expect you were given similar stats. They have to make us aware of the risk to gain our consent, but I personally feel the conversation is too much for most people, and scares the bejesus out of everyone, at a time when we are all terrified anyway. I think they should tone this talk down a notch. I walked away thinking I would likely die. It sounds like you have too.
Another of my consultants reassured me that these stats are very conservative; are based on old figures, and that transplant techniques and responses to subsequent issues, have improved hugely in the last few years - and these figures don’t reflect current outcomes.
I’ve spoken to and met many dozens and dozens of transplant patients now - all with serious situations which necessitated a Stem cell transplant - and we’re still here. I’m 2.5 years post-transplant (hoorah!) and I’m in fine fettle. I’ve only heard of a couple of sad situations. There are many tens of thousands of us stem cell transplant patients alive in Britain today. Please hold on to that and believe you will get through it. It’s not fun, but it’s the gold standard of Acute myeloid leukaemia (AML) treatment with the goal of ridding you of the troublesome mutations permanently. I’ve heard of quite a few people (especially on the Acute myeloid leukaemia (AML) FB group) who have had Acute myeloid leukaemia (AML) twice (or more) and who have gone on to have a Stem cell transplant, and then been able to put it behind them. There IS hope. Your consultants wouldn’t put you forward for a Stem cell transplant if the chances of survival were so slender and you weren’t well enough, because it is a gruelling old procedure, and it’s bloomin’ expensive! Your consultants believe you can get through it. Hold onto that. You CAN do it.
Well, on that note I’ll finish - but please do ask any questions you might have, or just come back for a chat during what must be an horrendous time. Everyone here is so nice. We all genuinely want to help others who are going through the misery we’ve been through. Time is not an issue. We’re here for you.