Sunday, 10 February 2013

Living with the unpredictable Cycle 6, week 2

As each cycle of Steve's pemetrexed/Alimta and carboplatin chemo has been different in terms of side effects, we had no idea what this final cycle of treatment held in store.  The answer so far?  A little bit of everything...

The horrible "off" tastes which dominated last week have subsided, although not gone completely.  The runny nose which has happened at some point during every cycle has returned, bringing with it on occasion enough blood to stain a tissue.  Also making what we hope will be a last appearance are the sore, stingy eyes - starting earlier in the cycle than previously, so hopefully finishing earlier as well.

There has been the usual nausea, but this time occasionally at night as well as in the morning which is what happened in previous cycles.  Luckily it seems to go as soon as soon as Steve has something to eat in the morning or lies down at night.  

A sore mouth made a brief appearance, finishing as abruptly as it started, not lasting long enough to need to use the numbing mouth wash. No itchy rash this time, at least not so far....

The impact of last week's blood transfusion has been subtle. Rather than giving him enough energy to dance in the street, it has allowed Steve to keep going for longer without an afternoon nap, early night or dropping off to sleep at the drop of a hat at awkward times. 

Confidence boosted that he won't keel over during the day, we managed two whole days out last week;  a trip to the Heritage Motor Centre at Gaydon, where we enjoyed looking at some classic cars, and a day in Bristol, progressing matters relating to the Lasting Power of Attorney for Steve's mum; collecting some things from her old house and photographing/cataloguing a few bits and pieces for sale now that an offer has been accepted on the property.

The final week of the final cycle of this chemo regime is almost upon us, so we won't have long to wait and see what other surprises are lurking in the wings in terms of side effects.  

We will have to wait rather longer to find out what impact the treatment has had on the meso.  Steve's next assessment is not until the end of the month and we are still waiting for an appointment for a scan.  Bearing in mind that it usually takes at least two weeks for the radiologists to interpret the results, opportunities to fit in the scan in time for the report to be ready by the next assessment are now getting uncomfortably tight. 

If nothing comes in the post tomorrow, we'll have to start making phone calls to hurry things along, or risk arrangements going pear-shaped again as happened over Christmas/New Year when scans, tests and assessment got out of sync, with consequent delay in treatment.

We are not the only ones getting frustrated whilst playing the waiting game.  Meso Warrior Tess in Kent was told she would be starting chemo in a fortnight, only to find out subsequently that prior to treatment she would need a kidney function test which took 10 days to get an appointment and another 10 days to get the results.  As she says in her blog, you get yourself all psyched up for treatment, then are made to wait which adds to the stress and anxiety. 

Living with the unpredictable is an inevitable consequence of mesothelioma, and we have no choice but to learn to get on and deal with it.  However, the time required for various medical procedures and tests IS predictable.  Why then is it so difficult to organise appointments in the right order at the right time to start treatment within the planned timescale?

Although personalised treatment plans is a growth area in research, at present no one can predict how an individual will respond to a specific course of treatment.  That has been brought home to us vividly this week by news from two other meso warriors, both of whom have recently had the pemetrexed/Alimta and carboplatin chemo regime.  

Debbie in Plymouth was told that although in some areas her meso was stable after a full six cycles of treatment, there has been some disease progression in other areas.  As a result, she will be starting a new regime of Vinorabline next week.  Debbie, along with the wider meso community, we send you lots of love and hugs to help you in this new attack on Theo.  He won't know what's hit him!

In contrast, Jan was forced to stop her chemo regime after having a very bad reaction on her second dose.  She was convinced that the disease had progressed and was getting herself psyched up to hear bad news at her assessment last week.  When it came, the news was not at all what she had predicted.  In fact, there had been a very widespread positive response to chemotherapy, from virtual dissolution of the disease in some areas and a 50-75% reduction in other areas :-)  Wooo Hoo!  Who could ask for anything more?  So pleased for you Jan!

Meanwhile, like Mavis and Ray, Amanda and her Ray and many other meso warriors and partners worldwide, we are looking at dates scans and assessments looming on the horizon.  As always, we hope for the best news but prepare ourselves for the other type of news, which is how we live with the unpredictable these days.  But the important thing is that we and our partners are LIVING with it!  

Pancakes and Valentines on the horizon next week.  I wonder what else we will get up to?  


  1. My thoughts are with you both as the anxiety of waiting for the scan date looms. Everything that has happened to Steve shows a promising result anything less would be too unbearable to comprehend. Good luck thinking of you and my digits are all crossed. xx

  2. Sounds as though Steve has gone for the full pick and mix side effects option, just to make sure he packs it all in during this last cycle.

    Here's hoping for good news all round at scan time, Ray is actually handling it better than me at the moment.