Lucia is coming to the end of her treatment for T-cell Acute Lymphoblastic Leukaemia. She has just had her end-of-treatment briefing from our consultant John. I will quote her …
- I'll have follow up clinic every 6 weeks for the first 18 months.
- The first 18 months are the most critical for relapse.
- I may need blood transfusions for up to 6 months after finishing.
- My bone marrow will take up to 6 months to recover.
- So will my energy.
- My immune system will be at 90% after 3-6 months and 100% after 12 months.
- If I relapse I will go over to the christie, get a new consulant and will have to have a BMT. (Bone marrow transplant).
- The further out I relapse the better. (The first 6 months have the bleakest outlook).
- T-cell ALL can be v. agressive when it relapses and the relapse protocol would be a whole different ball game.
- BUT, I have a 75% (probably higher) chance of being cured this time around.
- Follow up will be at RMCH.
- I have a higher risk of heart disease, skin and lung cancer than most but keeping out of the sun (which I do) not smoking (duh) and keeping healthy brings my risks down to a normal level.
- When I'm pregnant I will have to have my heart checked and be followed more closely to make sure there's no strain on it. Thanks to the doxorubicin chemo I had.
Depressing. Another 2 ½ years at least … how can I tell Nanda this?
I hate this 75-80% - it means one in four or five will relapse. So the medics are trying to keep our morale up but the odds are not particularly good. Relapse – another two, three, four years … the search for a donor who may well, in our case, have to be black and of which there are not many (please visit and support the African Caribbean Leukaemia Trust), and therefore a much lower chance of survival.
How can I tell Nanda this?
P.S. Lucia has just posted several updates so visit.
P.P.S. I´ve stolen the title to this post from Rob and Lauren whose son Fergus has just come off treatment. In a previous post I mistakenly thought Lucia had come off treatment but it is imminent – her recent experiences show us we cannot rest on our laurels during the second year of treatment.