Residual disease, cure rates, consolidation treatment & time of change Thursday, 7 July 2011 at 18:47
Taken from my original diary on Facebook
On our visit to Southampton last Friday I was able to ask the Consultant Jan more about the 'indeterminate' residual disease results. She explained that since 2003 they have been able to look even closer (closer than a microscope) at any tiny residual leukaemia cells. Although the basic bone results showed Charlotte was in remission this other test looks for markers such as proteins on the surface of any residual cells, from these markers they can re-assess the level of risk of Charlotte's disease. Unfortunately Charlotte is one of the 10% of children that don't have any markers...therefore they can't re-asses her. The Dr had got me the very latest cure rates based on these risks. For children under 10 that are classed as low risk they now cure 96%!!! For children under 10 who are high risk they cure 86%. Children who are classed as mid-risk have an 88% cure rate. Due to not being able to get a result for Charlotte we can only assume that at worst theres an 86% cure rate, however, because of all her previous results, cell genetics, age & sex they are not classing her as high risk....which is really good news because high risk means going on the strongest regime of chemo. However, they won't class her as low risk, so although she can stay on her current level of chemo (lowest), she has to repeat the 7 week intensive phase. Her 1st 7 weeks is due to start early September and I was concerned they would want to make that 14 weeks. However, I was relieved to hear that she has 7 weeks, then a 10 week interim phase of treatment then repeats the 7 weeks intensive phase. They have also said that if she is very poorly or reacts badly to the first 7 weeks they may consider not repeating it.
We're back at Southampton tomorrow which is the start of week 8 of treatment. This is the last week of a 3 week phase called consolidation. This is aimed at maintaining the remission (this is done with an oral chemo drug which I give to her every evening), and also preventing the spread of leukaemia cells into her brain and spine (this is done by injecting a chemo drug into her spine via a lumbar puncture, on 3 Fridays at Southampton). After this phase we go into a 7 week interim (less invasive) phase of treatment which leads up til her 1st intensive phase. Charlotte is taking in more & more about her treatment and quite often will out of the blue ask me about something. Last Friday after her lumbar puncture & she'd come round, she sat up & said "did I have a bone marrow test done mummy or just a lumbar puncture"..the nurses were gobsmacked! Then the other day she said "mummy, what's spinal, is that where they do my lumbar puncture?" - she obviously listens to everything being said around her & takes it in.
We've just come out of hospital after a 3 night stay. I have to take Charlotte's temperature morning & evening and if its over a certain level I monitor it and/or ring the hospital. On Sunday it was slightly raised, she wasn't eating, didn't look well & had a rash. If she hadn't of had the rash I would have just monitored to see if anything came of it but rang the hospital because of the rash...which it turned out they wanted to see. Although Charlotte's blood counts & immune system are good at the moment they still wanted to keep her in & give IV antibiotics in case she had an infection. As it happens some of her cells counts jumped up high which did indicate something was going on. We have to stay in for at least 48 hours until cultures are grown which would show if she had an infection...these were clear, so they assume she had a virus. Whilst we were in the play worker looked after her for a couple of hours in the play room, so after a sleep I went to the Patient Liaison and they have raised a 'concern' on my behalf to the Dr who back in February stated he "could absolutely rule out cancer as the cause of her illness" and that if she was ill again "she did not need to have her bloods checked & should be treated as a normal child". Obviously hindsight is a great thing, but he was obviously wrong and because of that its been very hard emotionally to deal with & also meant unnecessary pain & suffering for Charlotte - I await his reply!
Since Charlotte stopped the steroids 2 weeks ago its been a very slow gradual reduction of the effects. Her chubby cheeks & tummy are gradually going, as is her massive appetite, she's sleeping through the night (mainly cos she's not waking up hungry) and sleeping in til normal times in the morning instead of the 5am starts! She's also getting the strength back in her legs more & more which is great to see, and most of all to my relief a lot of the awful moods & aggression seem to be almost gone...in fact today she's been pretty much back to my gorgeous & funny girl. Apart from a couple of hours over lunch she's spent the day back at pre-school, albeit with me or my Mum staying with her, but she was smiling & playing and not clingy at all. The other thing that's changing is that her hair is getting thinner & thinner but she's still got a fairly good head of hear and its really only at her parting that it notices a bit, she's not bothered by it all, its all very much a matter of a fact thing! I'm so proud of how she's handling it all....despite the times she's screamed and hit me in recent weeks, but thankfully that part is mostly behind us now because in the future she will only have short courses of 5 days or so of steroids
On our visit to Southampton last Friday I was able to ask the Consultant Jan more about the 'indeterminate' residual disease results. She explained that since 2003 they have been able to look even closer (closer than a microscope) at any tiny residual leukaemia cells. Although the basic bone results showed Charlotte was in remission this other test looks for markers such as proteins on the surface of any residual cells, from these markers they can re-assess the level of risk of Charlotte's disease. Unfortunately Charlotte is one of the 10% of children that don't have any markers...therefore they can't re-asses her. The Dr had got me the very latest cure rates based on these risks. For children under 10 that are classed as low risk they now cure 96%!!! For children under 10 who are high risk they cure 86%. Children who are classed as mid-risk have an 88% cure rate. Due to not being able to get a result for Charlotte we can only assume that at worst theres an 86% cure rate, however, because of all her previous results, cell genetics, age & sex they are not classing her as high risk....which is really good news because high risk means going on the strongest regime of chemo. However, they won't class her as low risk, so although she can stay on her current level of chemo (lowest), she has to repeat the 7 week intensive phase. Her 1st 7 weeks is due to start early September and I was concerned they would want to make that 14 weeks. However, I was relieved to hear that she has 7 weeks, then a 10 week interim phase of treatment then repeats the 7 weeks intensive phase. They have also said that if she is very poorly or reacts badly to the first 7 weeks they may consider not repeating it.
We're back at Southampton tomorrow which is the start of week 8 of treatment. This is the last week of a 3 week phase called consolidation. This is aimed at maintaining the remission (this is done with an oral chemo drug which I give to her every evening), and also preventing the spread of leukaemia cells into her brain and spine (this is done by injecting a chemo drug into her spine via a lumbar puncture, on 3 Fridays at Southampton). After this phase we go into a 7 week interim (less invasive) phase of treatment which leads up til her 1st intensive phase. Charlotte is taking in more & more about her treatment and quite often will out of the blue ask me about something. Last Friday after her lumbar puncture & she'd come round, she sat up & said "did I have a bone marrow test done mummy or just a lumbar puncture"..the nurses were gobsmacked! Then the other day she said "mummy, what's spinal, is that where they do my lumbar puncture?" - she obviously listens to everything being said around her & takes it in.
We've just come out of hospital after a 3 night stay. I have to take Charlotte's temperature morning & evening and if its over a certain level I monitor it and/or ring the hospital. On Sunday it was slightly raised, she wasn't eating, didn't look well & had a rash. If she hadn't of had the rash I would have just monitored to see if anything came of it but rang the hospital because of the rash...which it turned out they wanted to see. Although Charlotte's blood counts & immune system are good at the moment they still wanted to keep her in & give IV antibiotics in case she had an infection. As it happens some of her cells counts jumped up high which did indicate something was going on. We have to stay in for at least 48 hours until cultures are grown which would show if she had an infection...these were clear, so they assume she had a virus. Whilst we were in the play worker looked after her for a couple of hours in the play room, so after a sleep I went to the Patient Liaison and they have raised a 'concern' on my behalf to the Dr who back in February stated he "could absolutely rule out cancer as the cause of her illness" and that if she was ill again "she did not need to have her bloods checked & should be treated as a normal child". Obviously hindsight is a great thing, but he was obviously wrong and because of that its been very hard emotionally to deal with & also meant unnecessary pain & suffering for Charlotte - I await his reply!
Since Charlotte stopped the steroids 2 weeks ago its been a very slow gradual reduction of the effects. Her chubby cheeks & tummy are gradually going, as is her massive appetite, she's sleeping through the night (mainly cos she's not waking up hungry) and sleeping in til normal times in the morning instead of the 5am starts! She's also getting the strength back in her legs more & more which is great to see, and most of all to my relief a lot of the awful moods & aggression seem to be almost gone...in fact today she's been pretty much back to my gorgeous & funny girl. Apart from a couple of hours over lunch she's spent the day back at pre-school, albeit with me or my Mum staying with her, but she was smiling & playing and not clingy at all. The other thing that's changing is that her hair is getting thinner & thinner but she's still got a fairly good head of hear and its really only at her parting that it notices a bit, she's not bothered by it all, its all very much a matter of a fact thing! I'm so proud of how she's handling it all....despite the times she's screamed and hit me in recent weeks, but thankfully that part is mostly behind us now because in the future she will only have short courses of 5 days or so of steroids
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| On the Mum's & Toddlers trip to Adventure Wonderland |
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