Tuesday, November 17, 2015

Mesothelioma scans tomorrow and ASEA Asbestos International Conference Brisbane, Queensland

My 2 monthly scans are happening tomorrow for chest/abdomen/pelvis at John Fawkner Hospital, Melbourne.  Prior to this I will have a blood test, fast for 2 hours and drink 1.5 litres of water.
I only have to wait 2 hours after the scan to see my oncologist and get results!  I have a good feeling about this scan however it is always scanxiety that kicks in no matter how many scans that we have had over the years as the results are a do or die situation with mesothelioma cancer.  It determines whether treatments are/ still working or have stopped.  Shrinkage/stability is what we want to hear and breathe a sigh of relief when this happens!  When the scans say tumours/fluid on the rise, then it is usually back to the drawing board with our medical team to see what other treatment options we have or to leave the situation for a while as quite often the current treatment is slowly working its magic and takes longer than a few weeks to show success.

I am busy organising my presentation for the ASEA (Asbestos Safety Eradication Agency) International Asbestos Management Conference happening from this weekend to 24 November in Brisbane, Queensland.  I am speaking on Keytruda and with the help of my brother Matt, putting together a series of powerpoint slides.  Now all that I have to do is to get my speech organised to co-ordinate with this and I will be fine lol!  It all comes together on the day and that is what counts.

On Saturday 21 Nov I am hosting/organising a meso warriors get-together in Brisbane, more details after the event - it is to be a really fun and pampered afternoon as I believe warriors so deserve this!
Pictures to come later! Linda Reinstein (CEO/ADAO) will be guest of honour at our get-together!

Well Keith has only one more zapping of radiation to go tomorrow!  Yay!!  Paperwork to be finalised and blood tests then he is out of there!  So he will drop me off at my hospital for appointments then head over to his hospital for radiation across Melbourne city.

 On a lighter note, I put our Christmas tree up on Sunday with decorations and lights as this year it is extra special to me - as NO WAY did I ever think I would be here!  Thank you Keytruda!

To all warriors doing it tough atm my heart is with you.  A young Australian family has just found me through my blog.  He has just been diagnosed with pleural mesothelioma aged in his mid 30s.  Now they are not on their own, as I will gradually introduce them to the warriors and support with others.

Lou xx


Monday, November 9, 2015

Presenting at International Conference on Asbestos Awareness and Management, Brisbane, Qld 22-24 Nov 2015

The Asbestos Safety and Eradication Agency was established on 1 July 2013 to provide a national focus on asbestos issues which goes beyond workplace safety to encompass environmental and public health concerns.  The agency aims to ensure asbestos issues receive the attention and focus needed to drive change across all levels of government.

 International Conference on Asbestos Awareness & Management.

22 to 24 Nov 2015, Brisbane Convention & Exhibition Centre, Brisbane, Queensland, Australia

The final conference programme is now online with a fantastic line up of domestic and international speakers in asbestos management, health, advocacy and governance to look at what is best practice in managing the dangers of asbestos in our community and abroad. Registration is still open.
All exhibition packages have now SOLD OUT however advertising opportunities are still available and you can still join us as an event contributor at the conference. If you would like to know more, details and benefits are outlined in the prospectus. You can also get in touch with our events team to find out more.


I am looking forward to presenting in the concurrent session 'Australian trials and treatments' on day 2.

Very exciting news as my oncologist Dr Allan Zimet will also be presenting on 'An update on key treatment studies in Australia to support people with an asbestos related disease.'

Tanya Segelov is a member of the Asbestos Safety and Eradication Council and will be the facilitator of this session.

I will be speaking in this session and providing an update on my treatment with Keytruda and also my very important campaign to have Keytruda fast tracked onto the PBS for those living with Mesothelioma.

This session will be held on Tuesday 24 Nov afternoon. 

Keytruda update:
No. 11 infusion overnight in hospital last week.  Main side effect was fatigue for a few days, this could also be the result of little sleep in the hospital due to noises, being waken up for blood pressure to be taken, patients who are unwell and having to be monitored hourly and just in general NOISE!!  Now if I was very unwell this would be okay and the hospital would be the place to rest and be monitored overnight, however as I am well - it is very unsettling to the point of having anxiety feelings most of the time that I spend in the room.  Having been in and out of hospitals since 2003, I'd so much rather be able to have my infusion of Keytruda as a day patient and go home to sleep in my own bed. 

My petition to fast track Keytruda on the PBS for Mesothelioma and other rare less known cancers will be able to alleviate this stay in hospital and when this happens, I can happily every 3 weeks be a day patient for 2 hours then walk out of the hospital and home!  It will be wonderful when this happens for all those living with Mesothelioma!!

The campaign is moving steadily along and I now have a scheduled appointment with the Health Minister, Sussan Ley's Advisor to present the petition, tell my story and also other stories that need to be told of Mesothelioma warriors who are anxiously awaiting Keytruda coming on the PBS (Pharmaceutical Benefits Scheme) - where it will cost $6.10 to $35 per infusion instead of the expensive cost that it is now for those who have the lifeline of Keytruda.  After meeting with the Health Minister's Advisor, my next goal will be to meet face to face with Sussan Ley!

Keytruda is now on our Australian PBS for Melanoma - which is fantastic and such a huge financial burden lifted for those with Melanoma cancer.  It came into effect 1 September 2015. 

Please continue to sign, comment and share my petition - we are making a difference!


(To sign please copy and paste the above link).

Keith's radiation update:
35 doses of radiation daily with weekends off, he now has only 8 to go!  3 years ago Keith had this robotic 4 hour surgery - Robotic prostatectomy is gaining popularity as a less traumatic and minimally invasive prostate cancer treatment. The da Vinci robotic prostatectomy enables surgeons to overcome many of the shortcomings of both open prostatectomy and laparoscopic prostatectomy.

Due to detected traces of cancer in his prostate area, he is now on this trial.

Clinical Trial: PINPOINT

A clinical trial to investigate using a new imaging test to find where prostate cancer has recurred after surgery, and; using implanted radiofrequency emitting beacons to precisely locate and treat recurrences in the prostate bed.
Technical name: Phase II trial harnessing PSMA-PET and Calypso® real-time tracking to precisely locate and treat recurrent prostate cancer.
Principal Investigator: Dr Patrick Bowden (Radiation Oncologist)
Basic Information:
The PINPOINT study is testing a new way of identifying and treating prostate cancer that has recurred in the same place where the prostate was removed from during surgery (prostate bed). There are two parts to the study and not all patients will the requirements to participate in both of them.
The first part of the research involves a new way of identifying prostate cancer cells using a Positron Emission Tomography (PET)/Computed Tomography (CT) Scan sensitive to the biological marker, Prostate Specific Membrane Antigen (PSMA).
The second part of the research involves a new way of treating prostate cancer using very small beacons called Calypso® beacons, which are inserted into the prostate bed and emit a radiofrequency (RF) signal. These allow us to locate and track the prostate bed during radiotherapy.
The aim of this trial is to utilise PSMA PET scans to more accurately identify men who have no metastatic disease and only offer those men salvage radiation therapy, using the Varian Calypso® advanced target localisation technique. This will also allow for early identification of men who have metastatic disease, and thus ensure that they receive the appropriate treatment rather than salvage radiotherapy, which would be futile.