A support group for anyone affected by leukaemia to come together, share experiences...
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My mum has ALL and is about to start chemo and then a stem cell transplant or a bone marrow transplant i think they are the same thing but not sure?
She is trying to protect us from the worst i am sure when i ask about her prognosis she says it is not good but that is all. I want to say what does that mean? Does it mean that treatment is really hard and long but doable or does it mean that treatment is hard and probably wont work? I am so scared. We have never been the kind of family to talk about our fears but i know that we all worry a lot internally.
She is 66 with no white count to speak of which i thought was a good thing the but Doctor said but that mums marrow is choka block with leukemia at 90% blast cells. Sometimes i read that there is no cure does that mean they are on chemo until the end of their life.?
The good thing thing is that mum is great health otherwise and so will start aggressive chemo on monday but their was a delay with mum diagnosis of 4 weeks becast the blast cells had not made their way into her blood stream with being so aggressive 4 weeks is a long delay.
I'm sorry to ramble on but i have so many questions i understand there are no answers yet to some of them and i am trying to worry about them one step at a time but it is so hard.
I also have one large problem on my mind my mum is bit of a hoarder and the house is not in good condition its also very old. There is no central heating or double glazing or downstairs loo. But my parents are always immaculate and very proud and stubborn obviously i have offered to help but i just get told if i need help i will ask honestly. she cant go home with no immune system can she?
Update today they say that she has Philadelphia Negative ALL and transplant and intensive chemo are not needed which is great news but i would still love some information about this turn of events... My mum and Dad are over the moon which is great news but its such a huge change of circumstances i worry it will change back again...
I hope you don't mind me getting back to you - my name's Ellen and I work on Macmillan's Online Community. I hope you're finding the Community a warm and supportive place to be and thank you for your question to Caroline. I just wanted to let you know that we've let Caroline know your question is here and she'll get back to you as soon as she's able.
Macmillan Community Team
Apologies for taking so long to get back to you. The treatment for ALL is long and protracted. At 66 a transplant would have been quite risky so it is good news that she doesn't need one!
ALL in adults carries a poorer prognosis than AML, however, I have many older adults your mums age, who have come through treatment and are well.
Treatment generally can take up to 2 years for a female- however it will be dependant on how your mum responds and what happens as she goes through. It is not uncommon for treatment to be modified due to toxicity. Treatment is given in phases and generally there are bone marrows between phases. The initial phase is 28 days, followed by a bone marrow biopsy to determine response. If she has had some response, she moves onto phase 2. If she doesn't, then the treatment maybe changed or stopped, depending on how the disease has behaved.
I am sorry that I cant give you a hard and fast answer, but treatment decisions are taken as your mum progresses and her disease responds.
You mentioned about the delay in diagnosis- this is the frustration of working in haematology. You probably knew that your mum was unwell, the doctor was doing the tests and knew something was happening, but the blood tests showed nothing. This is very common. There can be lots of reasons that someone's bloods maybe deranged and it not be cancer. The fact that she is fit and in great health will stand her in good stead.
I agree with your concerns about the house. She will be in hospital for sometime initially, so you have time. I would suggest that you ask to speak to the social worker attached to your mums team and explain your concerns. They will assist you and advise. The consultant having a word or two with your mum may help too- never underestimate the power of an outsider to make your mum see that she will need help!
This is a long road and you are bound to have more questions- please come back to me or contact the support line on the number below and we will do our best to help. The carers forum will also give you a space to talk, ask questions and get support.
Caroline - Macmillan Information Nurse Specialist
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.
No apologies needed. That is really helpful but they have already let my mum go home with chemo tablets I guess there was s nothing we can do except wait and see how she does...
Thank you again for your time I know it is precious with so many of us and so few of you.
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