Wednesday 21 October 2009

Full steam ahead......Cycle 5, Day 2

We set out for the hospital yesterday morning in a rather sombre mood, convinced that Steve's white blood cell count would still be below par because of his cold and worried about the answers we might get from the doctor in response to our questions....

To our amazement, the white blood cell count was up to scratch - just.  The long discussion with the doctor was reassuring and seeing the latest scan brought home to us how small Leo is relative to the lung he is living in. 

It seems that when researchers assess the effectiveness of chemo, they look at a whole range of responses; not just any change in the size of the tumour, but a whole load of other symptoms of the disease such as pain, breathing, mobility problems and such like.  Positive symptomatic responses contribute to the "effectiveness" of a treatment.  

As Steve's quality of life during his rest periods from chemo is good (no pain or breathlessness, good mobility) there are no symptoms of that type that the drug trial treatment could make better. Plus, measuring pleural thickening accurately is notoriously difficult. Seeing the CT scan helped us appreciate that problem. The standard treatment would not necessarily produce a better response in terms of tumour size. In retrospect, perhaps we were setting the drug trail benchmark too high.  No wonder we were feeling disappointed.  

Steve will be able to have the standard chemo treatment to help manage any deterioration in the future, should that become necessary.  Radiotherapy is another option to deal with any specific areas of pain.  Steve will be monitored every 2-3 months after the current treatment regime is completed.  There is no evidence to suggest that having a gap between finishing one course of chemo and starting another is harmful - Doctor Louise says it's better to have a rest, let the body recover from the toxins, enjoy life free from nausea and fatigue for as long as you can, before starting over again. 

Drug trials aren't rationed - in fact researchers are crying out for people to take part.  If another came along which Steve was eligible for and was well enough, he could take part if he wished. This would give him further chances to keep the cancer at bay.  

These answers made us feel much more positive...and seeing the very large expanse of good, clean lung on the CT scan was the icing on the cake.  Steve decided to finish the last two cycles of Velcade and Cisplatin.  The bottom line is that we don't really know what effect it's having, except that things are not getting worse. He says would rather live with an uncertainty which allows for hope, rather than a certainty which rules it out.  So we look forward.  

After Tuesday's session, there will be only one more L O N G chemo day and seven not-quite so-long chemo days...the light at the end of the tunnel is getting bigger.

We also heard that Steve is no longer alone on the Velcade trial - a new man was due to start on Tuesday.  We didn't meet him then, but I'm sure our paths will cross at some point during the one of the remaining visits.

So -  it's full steam ahead again - back on the anti-nausea drugs, afternoon naps and early nights, with the occasional dash to the bathroom.  But every day that passes now is another day closer to completing the full six cycles of treatment.   Then, all being well, we can look forward to some real quality time when the side effects wear off.  Oh yes, please.  Bring it on!

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