Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
My son's mother and ex wife was diagnosed with the above approximately 3-4 months ago and has been through chemotherapy for most of that. She was told about 2 weeks ago that the latest tests had come back clear but the tests sent to London could still detect a minute part of the disease.
She was sent home for a few days to await the next set of treatment (I think Nelarabine) to attack and last bit. Also there was a 9/10 possible donor for the bone marrow transplant. So the news was great.... however.
Unfortunately a few days at home she was readmitted with a high temperature and has now been told after tests that the disease has returned as aggressive as ever.
So my question is really, I'm assuming they will try and get the disease back to 0% again by means of an intense regime etc... but if the cancer has come back at such a rapid rate, is this possible and does the original prognosis change based on the aggressiveness of the disease? In a nutshell really (and I realise this may be a case of "how long is a piece of string") what is the long term prognosis, how many times can they treat with chemo?
Wrlcome to the ALL section of the community but I am obviously saddened that due to your ex wife’s illness you find yourself here.
Everyone must be in a rollercoaster of emotions with the bad news of diagnosis being followed by the good news of a probable remission followed by the white blood cell counts rapidly increasing again and the deflation it must have made you all feel.
The treatment for ALL can be a rollercoaster ride and often feels like one step forward and two steps back. The reality is that whilst it feels like you are back to square one the hospital now knows what hadn’t been successful and will be putting a plan into action to try either more of the same but maybe more higher doses or perhaps a different approach.. but for sure they will be trying.
It is a tough disease to beat and the treatment is hard and long but it can be done. I was diagnosed with T cell ALL in Sept 2012, had a 9/10 unrelated donor stem cell transplant 8 months later. I am still doing fine.. it did take me a good couple of years to get back to normal after the transplant but it can be done.
With regards to your “medical” questions in your last paragraph can I suggest you give the helpline a call (number below in my signature) as there you will be able to speak to a qualified nurse who can talk more about this with you and hopefully offer some reassurance to you.
Feel free to come back to me with any questions and I will happily tell you about my experience with ALL and the treatment I received.
You can read more about my journey here in my profile. https://community.macmillan.org.uk/members/paul1969
Goid luck to you all.
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First of all thank you for your reply and the warm welcome to the group. It sounds as though you have been through a tough time (as I'm sure all cancer patients do) and that you have come through it... I know from a lot of research that it is indeed a long term struggle to beat T cell ALL. So a very big "well done you". In fact I have a good friend who went through a similar sort of struggle to yours and he is now 9 years the other side and yet he does not forget how hard it was.
Yes you are correct that at least they now know what didn't work and I'm sure that they will be trying something else or upping the intensity of the treatment. It astounds me though, that it looked like it was beat only to return and such a rapid rate after being given the all clear and to be honest is the source of my concern and worries, is this the norm... and have there been people with similar stories that have survived long term? Sorry not a question directed at you. I think the thing that worries me the most is of my son and how he is feeling and how he will cope if things were to turn to the worse.
Anyway thanks again for your reply and support.
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