Treatment timeline

Over the last week, we have talked (and listened) to many people about Steve's mesothelioma - GP, counsellor, radiotherapist, medical oncologist, clinical oncologist and palliative care nurse aka Macmillan nurse. Most of these sessions have kicked off with a review of Steve's treatment since diagnosis in June 2009; you should see his hospital files - very thick and heavy....

As Steve starts his next treatment regime tomorrow, this seems like the right moment to set it out in a timeline which pulls together all the clinical trials, chemotherapy and medical procedures he has been through since June 2009, together with the related side effects and outcomes.  

Having everything up together in one blog post will be a handy summary for us the next time we have to talk someone through what's happened up to now.  Some readers may find it of interest and assistance if they are contemplating having similar treatment.  If nothing else, it will set the scene for a future blog post and help you understand why Steve feels the way he does right now....

June 2009

• Pleurodesis - draining fluid which had built up between the two layers of the pleura around the lung and sticking the pleura back together using sterile talc. Biopsy taken at the same time. Four days in hospital. Oramorph given for pain relief (and laxative for constipation, a side effect of the pain relief medication) as part of a clinical trial comparing the effectiveness of oramorph to paracetamol for pain relief.  Stitches to the "ports" removed the following week.  Biopsy results showed mesothelioma.

July 2009

• Radiotherapy to the pleurodesis ports using a Linear Particle Accelerator (LINAC) - a total of four visits; one to prepare for treatment and three to zap the ports to reduce the risks of the cancer seeding along the line of the chest drain and endoscopy camera.  Aqueous cream applied to the site of the therapy to reduce soreness. No noticeable tiredness or nausea.

July - November 2009

• Velcade Early Phase Clinical Trial - aka Bortezomib, a biological therapy which inhibits how proteasomes (which control cell growth and function) work - plus cisplatin.  Six 21 day cycles of treatment, with Velcade and cisplatin on day 1, followed by Velcade on its own on days 4, 8 and 11, then a 10 day "rest" period.  Side effects: nausea and vomiting; tiredness; numbness in feet (peripheral neuropathy); taste changes; loss of appetite; anaemia; muscle cramps in joints.  Two enforced breaks in treatment regime due to toxicity - impact on white blood cells - one break of a fortnight, the other of a week.  Nausea and peripheral neuropathy continued post-trial for some time (the latter getting worse before it got better). 

December 2009 - September 2012 : No treatment, disease stable

October 2012- February 2013

• Chemotherapy - pemetrexed (aka Alimta) and carboplatin.  Six 21 day cycles of treatment, with infusions of chemo at the start of each cycle.  The regime was extended by an unplanned break in treatment arising due to appointment problems over the Christmas/New Year holiday.  Side effects: mouth ulcers; fatigue; taste changes; loss of appetite; breathlessness; itchy rash; nose bleeds; anaemia requiring blood transfusions on two separate occasions. Outcome: reduction in pleural thickening after four cycles of treatment, followed by further reduction in pleural thickening after two more cycles of treatment.

March - September 2013: No treatment, disease stable

October 2013: Scan showed disease progression - minor pleural thickening and a new lymph node about 1.5 cm in size noted.  

December 2013: treatment options discussed

January 2014: decision to take part in the VanSel Early Phase drug trial, dose escalation study

February - April 2014

• VanSel - a combination of two biological therapies. Vandetanib - a VEGFR (Vascular Endothelial Growth Factor Receptor) and EGFR (Epidermal Growth Factor Receptor) inhibitor; VEGF is a substance made by cells which helps new blood vesssels develop and grow. VEGR inhibitors stop cancers developing the blood vessels that they need to grow.  Selumetinib is a MEK (Mitogen Activated Kinase) inhibitor which blocks the pathway along which signals are sent to cells telling them to divide and grow.  Steve completed two cycles on this regime - the first cycle was 42 days long, including a "loading" dose of vandetanib every day for 14 days before taking both vandetanib and selumetanib for 28 days.  Cycle 2 was 28 days long, taking both drugs every day.  The trial period was extended with a week's break from treatment as the drugs were affecting Steve's heart rhythm.  Trial resumed on a reduced dose of vandetanib.   Other main side effects: a severe skin rash (mainly on his face, chest and neck) which required steroid cream medication and antibiotic lotion; fatigue; loss of appetite; stomach cramps; sickness; daily diarrhoea; some hair loss; sensitivity to UV light.  Outcome: disease progression over and above trial protocol guidelines

May - August 2014: continued disease progression; cancer has grown through the chest wall and now visible externally as a lump

September - November 2014: 

• AZD 0424 Early Phase drug trial - a 28 day cycle taking the trial drug every day.  The drug is a tyrosine kinase inhibitor which slows down proteins which are involved in cell growth.  Cancer cells have a higher level of these proteins than normal cells. The drug blocks these proteins, preventing the delivery of nutrients to cancer cells. Steve completed the first 28 day cycle, and 21 days of the second cycle before being taken off the drug as the scan showed disease progression and spread to his liver, as well as experiencing pain for the first time from the lump on his chest, which continued to grow in spite of the trial drug. Side effects: fatigue; major hair loss; stomach cramps; loss of appetite. 

December 2014: 

• palliative radiotherapy for pain relief. One "planning session" followed by five consecutive days of treatment starting tomorrow.  We can expect increasing tiredness with each treatment session, peaking about two weeks after treatment around Christmas.  We will also need to slop on the E45 cream to deal with the effects of the radiotherapy on his skin.  There may be some nausea and breathlessness as a result of the beam affecting healthy tissue in the lung and liver, adjacent to diseased areas.  

Overview

After a long period of stability followed by some shrinkage, Steve's mesothelioma has been growing since October 2013. Although he has taken part in two early phase clinical trials this year, the disease continues to progress and spread.  He has recently experienced pain for the first time where the cancer has grown through the chest wall, and there has been significant weight loss. He now weighs about 55 kilos.   He has yet to recover from the side effects of the most recent trial which has left him feeling weak and tired.  It's been a tough year....

What we can expect after radiotherapy and where we go from here is something for blog post in the future.  

What is clear from writing - and now re-reading - this treatment timeline is that Steve has been very brave and endured some horrible debilitating side effects of drug trials over the last 12 months, with no personal benefits.  Each drug trial seems more difficult to endure and bounce back from.  The gaps between drug trials and chemo regimes when we can enjoy a good quality of life are getting shorter.  

The balance of power between Steve and his cancer has shifted over the last year, accelerating over the last 6-8 weeks.  The mesothelioma journey has changed direction and moved on to a new phase.  We are now focussed on thinking about how to manage this for the best.  More of that in a future blog post.  

Thank you so much for all with wonderful messages of support and offers of practical help which are very much appreciated.  

Lastly, a big hug to all the meso warriors around the world, their families and friends, especially Margaret in Canada xxxx