Having told you all about ALL, I’d better explain a bit more about the treatment. Again I’ll probably borrow heavily from my handbook, though as everyone’s treatment is individual I’ll be giving a lot more information that websites etc won’t be clear about.
The aim of treatment for ALL is to destroy the leukaemia cells and allow the bone marrow to work normally again. Chemotherapy is the first and main form of treatment given. The chemotherapy is carried in the bloodstream to nearly all parts of the body, but does not reach the brain and spinal cord, and in men it does not reach the testes. For this reason, additional treatment may be needed where chemotherapy is given into the fluid around the brain and spinal cord. This is sometimes combined with radiotherapy to the brain. Men may be given radiotherapy to the testes.
Chemotherapy can get rid of the leukaemia cells in up to 8 out of 10 people with ALL [statistics shmatistics… will post about them about some point]. This is known as remission. In some people the ALL will come back (relapse), usually within a few years of the treatment. If ALL does come back, further treatment can be given either with standard-dose chemotherapy or high-dose chemotherapy. This treatment can give a further remission in about 1 in 3 people.
In some people with ALL, certain factors make it more likely to come back after treatment. This is known as being at high risk of relapse. In this situation a bone marrow transplant from a donor may give a better chance of curing the leukaemia than standard-dose chemotherapy and may be recommended as a treatment option [I mention this as the book does, though I haven’t been told I’m at high risk].
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy the leukaemia cells. These work by disrupting the production of the leukaemia cells. The drugs circulate all over the body in the bloodstream. As some of these drugs cannot get into the fluid around the brain and spinal cord (cerebrospinal fluid) they need to be injected directly into the fluid through a lumbar puncture. This is done even if leukaemia cells cannot be detected in the cerebrospinal fluid, since research has shown that there will almost always be some leukaemia cells in the cerebrospinal fluid which need to be destroyed..
When chemotherapy is given for ALL [as indeed it is to me] it is divided into three different phases.
This is the initial intensive treatment, aimed at destroying as many leukaemia cells as possible. It usually achieves a remission of the disease, which means that the leukaemia cells can no longer be seen when a sample of bone marrow is examined under the microscope.
…For me: this is of course the phase I’m on at the moment, and the drugs I’m getting are daunorubicin, vincristine/vinblastine (the former I had the first two times, but now I’m getting the latter because I’ve got a little peripheral neuropathy, ie tingling at the ends of my fingers and thumbs: expected and not worrying, but obviously preferable not to have!) and asparaginase. The daunorubicin and vinblastine I’ve had three times (days 1, 8 and 15), and will have once more, on day 22. They go in intravenously: one is just a syringeful and the other comes in a drip which takes about an hour. As they go in the PICC line and straight into the bloodstream, I don’t even feel them go in. The asparaginase I will feel go in, unfortunately, as it’s injected intramuscularly. I haven’t had any yet, but as it’s Day 17, I’ll now be getting it every other day, starting today, until Day 29. I actually just had the test dose intradermally to make sure I don’t have an allergic reaction to it, and though it stung I don’t seem to have reacted against it, so will be getting the proper injections (it’s strong stuff so half the dose will go in different sides… it’ll probably be a pain (two pains) in the ass, if you’ll forgive my openness). Also part of my treatment for this phase is steroids, which I get every day and started a few days before Day 1: the book says ‘Steroids are drugs which are often given with chemotherapy to help destroy the leukaemia cells. Prednisolone is the most commonly used steroid for ALL’ and is indeed what I’m having. I’ll also get a lumbar puncture on Day 24 (I think). Day 29 (5th December) marks the end of my Induction phase.
2. Intensification (consolidation)
A second, third or occasionally fourth intensive course of chemotherapy is usually given to increase the chance of a cure.
…I’m not sure yet exactly what this’ll be for me, but it has already been plotted: I think it’ll be more chemotherapy, some radiotherapy and some lumbar punctures. It’s probably best to concentrate on getting through Phase 1 before thinking too much about Phase 2! I do know that I’ll be back in hospital for at least four weeks, from whenever my blood recovers to a certain level after Phase 1 (the doctors have estimated between a week and two weeks).
Continuing therapy (maintenance)
This is a less intensive course of chemotherapy given over a prolonged period, mainly as tablets. It is aimed at killing any remaining leukaaemia cells. Steroids and antiobiotics may also be given.
Instead of standard-dose chemotherapy some people may have high-dose chemotherapy with stem cell rescue or a bone marrow transplant, as part of research trials, at this stage. The high-dose treatment may include radiotherapy to the whole body and high doses of a chemotherapy drug such as etoposide or busulphan.
…At the moment there are three possibilities for this phase: autologous transplant, allogeneic transplant or standard-dose chemotherapy. In short, the first is high-dose treatment and stem cell support, whereby my bone marrow gets knocked out and replaced with my own ‘clean’ stem cells. The second is the same but it gets replaced with someone else’s stem cells or bone marrow. The third is chemo via tablets for a while, (?a couple of years?). While my first two phases are all set and planned, the third is not, as it depends on various factors. If a match is found for my bone marrow (and I’ll post again about that, as I know a few people have wondered about getting tested), then they’ll go for that option. If not, one of the other two options will be randomly chosen, as they don’t actually know which is the best option and I’ve signed up to be part of a trial to find out. Of course, if in the meantime they discover one option is best, or would be best for me, then I’ll get that. I’m not too curious yet about Phase 3, as again I’ve plenty to get through before then anyway!
As Daddy Norton mentioned, none of my siblings is a match, but it is very important to note that that is not a big blow to my treatment: though siblings have a far better chance of being a match than anyone else, that was only one option anyway, and even that’s not disappeared yet, as there’s still a chance there may be a match registered somewhere in the world. As my registrar, Kevin, put it: ‘it’s not good news, but it’s not bad news. Just ho-hum.’ Ho-hum is a great philosophy.
Though I’m concentrating on getting through bits as they come, I am aware that this is going to be a bit of a long haul. If I have a transplant, the book tells me ‘It may take up to a year to recover from high-dose treatment and you will be carefully monitored during this time’, and that’s once I’ve got through the actual treatment itself. The standard-dose option for Phase 3 might take a couple of years. Furthermore, there’s this mention in the ‘What is remission?’ section: ‘However, once you are in remission there may still be a very small number of abnormal lymphoblasts left. To destroy these, your doctor may prescribe maintenance or continuation chemotherapy which may last for several years. These drugs are mainly taken as tablets and you will need to have regular check-ups to monitor their effect.’ Patience is a virtue etc… A more cheerful note to end this post on, though: ‘For many people with acute lymphoblastic leukaemia the remission lasts indefinitely and the person is said to be cured.’