Friday, March 18, 2016

Mesothelioma progression and a kick up its butt!

I just want to write honestly about my mesothelioma how aggressive, brutal and painful it can be.

No one person deserves to be diagnosed with this awful asbestos cancer.  We did not cause it - thanks to human greed, bribes and unfortunately the need for cheap housing in certain countries many are exploited by the likes of Russia 'mafia' who blackmail poorer countries with bribes, and selling asbestos very cheaply so these countries can house many thousands of their people by using asbestos for roof sheeting, wall covering .... . This is just one example of corruption.  Just imagine in these countries how many innocent people are yet to be diagnosed with an asbestos related disease in 10 to 50 years time!

After 10 years of extreme chronic fatigue I was finally diagnosed in 2003 with peritoneal mesothelioma.  One day I developed an unbelievable pain in the back lower area coming through to my groin area.  After a day it went away, so back to my doctor who referred me to a specialist.  He requested through pathology a biopsy of a large hard area that turned out to be a golfball sized tumour.  I remember the pathologist who performed this removal of fluid saying 'mmm very weird'.  I had surgery for removal of tumours in my stomach, diaphragm, abdomen and pelvis linings area and a hot chemo flush. At this stage my specialist was looking for ovarian cancer.

2 days later in his office he said with a very sad face, "I am very sorry to say it is the worst cancer that you could get - mes .. o ...". I said "not mesothelioma - asbestos cancer!" "He said of U know of this cancer!!" "Yes, my father at 54 yrs died of this cancer in 1985."

Keith and I went home, lay on the bed for over 2 hours hugging each other in total shock.  How could I get this cancer as dad worked with it, I did not.  My close girlfriend broke the ice by knocking on the door with a plate of my favourite muffins, so with a cuppa, chat and Keith on the phone trying to reply to so many concerned family and friends as to our outcome we were forced into reality and dealing with the truth.

I took control of my cancer - I did not want to die.  I will answer this section in another blog as it is important to tell this story and why I am still here today.

I had an appointment with an oncologist, Dr Allan Zimet of which he came highly recommended.
At out meeting I asked if he had any long term patients with mesothelioma - his reply yes I currently have 3 - a 5 yr, 2 x 8 yr patients.  THIS WAS GOOD ENOUGH FOR ME - I knew that I was in the best hands.  I asked Dr Zimet how long did I have.  He said a couple of months without treatment, maybe with treatment a few months to 18 months.

I commenced the chemo gemzidibine (gemzar) and cisplatin.  I helped my body's immune system with antioxidants, vegetable juices, cancer retreats, thought field therapy and for the first few years having a no sugar, no gluten and no wheat diet.

I lived well with peritonal mesothelioma.  In 2009 I was diagnosed with pleural mesothelioma on the right side.   I had VATS, drainage and a pleurodesis in hospital over a period of 3 weeks stay.

Followed by chemo alimta/cisplatin regime.

Altogether 8 different chemo regimes, in Dec 2014 my body was fading, tumours growing and needing fortnightly blood transfusions to stay alive.

January 2015 - my oncologist said 'Louise I am sorry there is nothing we can do - your body is shutting down'

Jan/Feb 2015 - I underwent 14 days of radiation into a massive tumour in my stomach that was dangerously close to arteries.  If this were to burst it would go to my heart and bingo - dead!

April 2015 - Dr Zimet said to me there is an immunotherapy drug showing good promise in some cases for end of life mesothelioma patients.  However it will cost me $7,100 per dose, every 3 weeks.
Keith and I went home and after the Easter weekend rang Dr Zimet and said to please go ahead.  I DID NOT WANT TO DIE.

Every 3 weeks I have had an overnight infusion of Keytruda in hospital.  Up until 24 Feb 2016 I have had many months of excellent quality of life.

A scan on 24 Feb 2016 showed NO FLUID, however it did show new tumours growing inside both lungs.

24 Feb to 16 March, I experienced caving in of the chest upon exertion, blurred vision and extreme dryness of face, throat and skin.  I craved iced water and lime squeezed into it.  Also coffee milkshakes!  Swallowing a bit hard needing a drink with it.  Weight loss of 5 kilos from 55 to 50 kilos.

16 March 2016 into hospital for my overnight Keytruda infusion.  I had the usual blood tests prior to Keytruda - and MY BLOODS WERE EXCELLENT!

However my chemo nurse noticed my distressed appearance and notified Dr Zimet.  He ordered an immediate CT scan of abdo, pelvis and chest that evening.

17 March 2016 Dr Zimet did his rounds at 6.15am.  He said unfortunately the big growth tumour in the diaphragm is growing, and the tumours in the lungs are joining up and there is a new growth above the right lung.  He wanted me to stay another night and have an MRI of the brain to see if the mesothelioma tumours are spreading to the brain (blurred vision etc).  I said I didn't want to stay another night in hospital and he smiled and said "Lou I want to work out a plan before the weekend."

I had the 25 minute claustrophobia, head pounding MRI and waited for Dr Zimet to do his rounds the next morning.

18 March 2016 - 6.30am Dr Zimet did his patient rounds.  MRI clear!  Even though Keytruda has stopped shrinking my tumours, given me quality of life and it has continued to shrink the fluid, no oxygen, NO PAIN and MY BLOODS ARE EXCELLENT, he has taken me off Keytruda and has started me on a weekly course of chemotherapy (Vinorerlbine/Carboplatin) to hopefully stabilise and maybe shrink the tumours.

I had my first dose of chemo yesterday and was out of the hospital by 3.30pm headed for home!

Every day that I was in hospital Keith (my husband) was by my side.  He would leave home 4.45am on the Thursday and Friday in the hope of being there when Dr Zimet did his rounds and be there with me when Dr Zimet discussed my case.  Unfortunately both days Keith walked in the hospital 5 minutes later!  He stayed the 3 days until well after 7pm.  Thank you to my wonderful sister in law Cheryl who came into the hospital on the Thursday as us 2 escaped the hospital to a little Italian restaurant where we shared a plate of pasta!

I AM NOT GIVING UP!  I have too much work to do in helping others get through this nightmare of living with mesothelioma.  Helping to ban asbestos globally.  Get Keytruda on the PBS fast tracked and my playing a global part in advocacy, education and support.

I just want to say thanks to Dr Zimet and Keytruda for my life line when my body was as close to a couple of days/weeks in shutting down in April 2015 when I was on 24/7 oxygen and morphine for unbearable pain.  I was on Keytruda every 3 weeks for 11 months, in that time I received excellent quality of life (from June 2015 onwards), significant tumour shrinkage and fluid too, went off oxygen and best of all NO PAIN and it gave me an excellent immune system back.  Without Keytruda I would not be able to have further treatment of chemotherapy.

Never give up, living with Mesothelioma is not easy for patient and family.  Deal with what happens in the moment and let the universe take care of the big picture.

Thinking of all warriors doing it tough at the time.

Please contact me anytime:

Wednesday, March 2, 2016

Keytruda no. 17 and successful meeting with PBAC to fast track Keytruda on to PBS.

Hi all
Tuesday 23 Feb we returned from our Tasmanian holiday/retreat where we visit to regain strength to fight cancer by walking on the beach, relaxing looking out to sea and the lighthouse, reading a good book, meditating and spending time with good friends.  By doing this it focuses our mind and healing to calm the brain and immune system and to forget about medical appointments/treatments upon our return.

We flew in to Melbourne and by 10pm home.  I made an orange cake and went to bed at midnight.  Weds 24 Feb early start to Melbourne, an appointment with my oncologist Dr Allan Zimet to discuss results of recent scan - all okay as reported in previous blog posting.  Fairy floss nodules/tumours inside the lungs otherwise all okay and continuing to have good quality of life while being on Keytruda.

Across to Epworth hospital for overnight admittance of Keytruda infusion.  I escaped with Keith for lunch and a rest in Fitzroy Gardens where we both laid on the grass under trees and went to sleep for an hour or so as we were very tired from our late travel the night before! 


Keytruda later that evening and I wandered around the hospital for a couple of hours.  I was awake 5am Thursday and Dr Zimet did his hospital rounds 6.15am and I was discharged by 6.30am! 


A brisk walk and a tram ride to my daughter Jo's place to surprise her and family.  Jo turned a milestone birthday and I was lucky enough to be able to share her birthday that day and babysit the kids that evening while Jo/David went out to dinner to celebrate.  We sang happy birthday and ate my orange cake that 2 yr old little grandson Oliver helped decorate.

Home Friday and last few days I have been fatigued, due to Keytruda infusion no. 17 and also our weather has been quite hot and humid.

Keytruda successful meeting with PBAC to fast track Keytruda on to PBS.

Tuesday 1 March 2016, I had a very successful phone conference link up with Professor Andrew Wilson, Chairman of PBAC (Pharmaceutical Benefits Advisory Committee) and the Secretary Greg O'Toole to discuss my petition and fast tracking of Keytruda on to our Australian PBS (Pharmaceutical Benefits Scheme) which will mean the cost of Keytruda will reduce the current costs of $5,000 to $9,000 per Keytruda infusion and currently the patient has to fund this, to the Government PBS at a cost of $6 to $37 per patient per infusion of Keytruda.

A HUGE decrease in costs and a decision that will enable many more patients to access Keytruda for mesothelioma and other rare cancers.

Prof Wilson was aware of my petition and the need to fast track Keytruda and other immunotherapy drugs on to our PBS. Currently most new drugs have to go through years of testings and trials before they are approved for the PBS however in the case of Keytruda it will be assessed on its merits and on real life cases including mine and others who have had access to Keytruda.

He did say that PBAC have not as yet received a submission from MSD (Merck) pharmaceutical company who produce Keytruda. When they do receive a submission from MSD they will decide on its merits.

They are aware of limitations within PBAC and there are 2 processes to make decisions when these applications come to the committee. He mentioned the long process and said Keytruda would not have to go through this process, and they understand it can not go through the same sort of level and trials as other drugs, in particular for RLC including mesothelioma as there is not enough data.

So it is back to MSD to ask them to please put a submission in to PBAC.

PBAC once they decide that the drug is beneficial and safe, then they will advise the health minister to put it on the PBS.

I think my phone conference link up was very successful and it is now time to continue lobbying MSD, and your local federal members of Parliament to write to the health minister to put Keytruda on to our PBS.

We are getting closer to fast tracking of Keytruda on to our PBS!