Blog | frasergo.orghttps://www.frasergo.org/blog/2009-03-12T20:03:32+00:00BlogCarrying on with chemo2009-03-12T20:03:32+00:00david/blog/author/david/https://www.frasergo.org/blog/2009/03/carrying-on-with-chemo/<p>After <a href="http://frasergo.org/node/123">last week's liver troubles</a> there's been a lot of <b>emotional up and down</b> - waiting to hear whether James could still have the <a href="http://en.wikipedia.org/wiki/Methotrexate">Methotrexate</a>, and pondering the consequences of stopping it (with a risk of relapse) or the potential damage to his liver of continuing it.</p>
<p>Today we had a <b>very helpful appointment</b> with the Prof in charge of his treatment. He has spoken to his colleagues overseas who deal a lot with paediatric leukemia, and gone through James's case with them. They said that their practice is to <b>continue the Methotrexate</b> in spite of the raised <a href="http://en.wikipedia.org/wiki/Liver function tests">liver function tests</a>, but to keep monitoring the liver closely. They would only consider stopping if the <a href="http://en.wikipedia.org/wiki/Bilirubin">Bilirubin</a> levels go up (James's have never been a problem) or if the liver becomes enlarged (James has so far had no sign of this). In their experience, in every patient they've had with these liver symptoms, after the treatment is finished the tests go back to normal.</p>
<p>In the near future this means James will:
<ul>
<li>have his liver tests monitored every second week (along with his normal blood tests)</li>
<li>see his paediatrician every two weeks instead of once a month
<li>have an ultrasound every two months or so</li>
<li>go back onto Methotrexate, and they will gradually increase the dose to the normal levels</li>
</ul></p>
<p>This is good news for us because the alternative of dropping the Methotrexate would have definitely increased James's risk of relapsing. So we are grateful. However, it is likely that James will have to deal with <b>ongoing nausea and tiredness</b> if his liver keeps on as it has been, which has been very difficult to deal with. His eating has improved considerably with being off the Methotrexate this last few weeks. The prospect of him being nauseous and struggling to eat for the next two years is quite scary!</p>
<p>Last month James also went to see a specialist at the <a href="http://www.ssisa.com/">Sports Science Institute</a> on Prof's recommendation, to see if there's anything more to be done about his <b>leg pains and falling</b> which continues to happen intermittently. He was incredibly excited because he met someone who trains with the <a href="http://www.thestormers.co.za/">Stormers rugby team</a>. This doctor in turn referred us to a <b>physio</b> who happens to be a friend of ours from hospital! She and her colleague assessed James and said that he has good co-ordination and muscles except that he has low <a href="http://en.wikipedia.org/wiki/Muscle_tone">muscle tone</a> in the core (trunk, shoulders and thighs). So her colleague's going to come to our house and help us with exercises etc that could help him.</p>
<!--break--><br class="clear" />More liver troubles2009-03-06T22:15:27+00:00david/blog/author/david/https://www.frasergo.org/blog/2009/03/more-liver-troubles/<p>Last week James started feeling a bit nauseous around food again, and so we asked them to test his <b>liver condition</b>.
(This is after his liver <a href="http://frasergo.org/node/121">apparently recovering</a> from his <a href="http://frasergo.org/node/120">two</a> <a href="http://frasergo.org/node/119">episodes</a> last year). The results showed that his liver is struggling again - this time, only one of the four <a href="http://en.wikipedia.org/wiki/Liver function tests">tests</a> was abnormal, but it was 10 times the normal level. This was apparently a fairly clear indication of drug-related liver problems, and so we were told to not give James his weekly <a href="http://en.wikipedia.org/wiki/Methotrexate">Methotrexate</a> this week and then to test again. Today he was tested and the level that was high has dropped significantly, which seems to strongly indicate that his liver is <b>not handling the Methotrexate</b>.</p>
<p>This is (as his pediatrician said) "<b>unfortunate</b>", as that is one of the three regular chemo drugs that James gets and an important part of his treatment. We don't really know what the options are from here and are waiting to hear more from the doctors - basically whether they have to discontinue the Methotrexate permanently, whether there are any alternative drugs, and how likely this is to affect the success of the chemotherapy. We'll discuss this with the doctors over the next few weeks...</p>
<p>In other news, we're getting used to the new daily routine of James going to school and he's doing well there. David and James had a great time at the <a href="http://www.jubilee.org.za/">Jubilee</a> Fathers and Sons camp (they just went through to Palmiet for the day and swam in the lagoon - both James and Charis are getting to be real lovers of swimming!) All four of us went away as a treat to a <a href="http://www.rietvlei.co.za/eng/home.htm">farm</a> outside Montagu for the weekend (and saw the most incredible starlit night with no light pollution - the kids had a fantastic time playing with the animals and we came back with huge butternuts and vegetables etc) and we're keeping on rethinking priorities in life!</p>
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