Monday 22 June 2009

The action plan takes shape

Back from today's visits to the hospital - both of us feeling more positive as the action plan to treat Steve's mesothelioma begins to take shape.  

The good news is that his right lung remains clear of fluid, so the pleural effusion was effective.  

We saw the CT scan and faced the uninvited guest.  Not quite what we expected - there is no tumour/lump as such.  However, the thickening of the lung lining can be seen in places on the right side - more like layers/sheets than a single ball-like mass.  

Phase 1 of the plan is to zap the "ports' where the chest drain and camera were inserted with high intensity radio waves - this has proved to be very effective at preventing the cancer cells spreading into these vulnerable areas.  Side effects are few (possible tiredness, occasional nausea; the skin in the area can become red and itchy, but nothing that can't be dealt with by a dollop of aqueous cream - and long term change of skin colour, but not in a place where it's noticeable when dressed).  The treatment involves four hospital visits - one to target the area precisely and three to do the zapping - every few days as an out-patient. Should get an appointment for the course of treatment in the next few days.

Phase 2 of the plan is to start chemotherapy when the course of radiotherapy has been completed.  Steve has been offered the opportunity to take part in a clinical trial of a drug which has proved successful at managing other cancers, to see whether it works as effectively on mesothelioma. We are going to be sent more information on that option, but our initial reaction is that's it's worth a go.  If it proves not to be effective, he can go on to the more usual treatment - a combination of two drugs (pemetrexted/Alimta and cisplatin) with supplements of vitamin B12 and folic acid. This is is usually given in six 21-day cycles (1 day treatment, 20 days rest) over a period of five months.  There are various side effects and risks, but the evidence suggests that these are outweighed by the benefits in terms of quality of life after the course of treatment

Ongoing monitoring on a regular basis (every few months) with chest X rays to see what effect the therapy is having.

Alternatives - there are several other non-traditional options which we can explore if the standard approach doesn't work for him.

Prognosis is uncertain - the honest answer is that nobody knows.  Survival rate statistics are skewed by an enormous number of variables - so shouldn't be applied crudely to individuals.  

The important thing is that Steve is being actively treated.  We are learning to LIVE with Leo the cancer, not thinking in terms of him dying because of it. 

PETAL (see earlier post) is a good philosophy to live by under any circumstances, so help us to be positive by treating Steve as a normal human being (I know it's hard - he can be a bit of a pain at times!) rather than someone with a terminal illness.  

Future plans - Please come and see us (but check first in case we're off galavanting somewhere!). Only stay away if you have a nasty cough/cold/infection - it's easier to deal with one illness at a time!  Don't feel awkward, or be worried about what to say - a big hug and kiss is enough to show us you care, then carry on as normal.  Invite us to your parties and celebrations - we promise not to bring everyone down.  Don't be alarmed if we suggest visiting you - mesothelioma is not catching.  Steve doesn't look like Dracula (just his normal handsome self) so he won't frighten the children or pets.  Being human, there are bound to be times when we find things a bit difficult in spite of cultivating a positive mental attitude, so bear with us if/when that happens - we will bounce back again, especially with the help and support of family and friends.  

Steve is working on his goals/targets/to do list - more of that some time in the future.  

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