Tuesday, February 16, 2016

Keytruda infusion, scan and Tasmania!

Hi all
2 week's ago just after my no.15, or was it no 16 Keytruda infusion I did a lengthy blog and forgot to save as I went along - guess what happened!  Yes my blog disappeared!

I had CT scans just prior to Keytruda on Feb 3 then blood tests before my admittance overnight for Keytruda. Blood tests were fine and my Haemoglobin (an iron-containing protein in red blood cells) was 126, considering this time last year it hovered around 76 requiring fortnightly blood transfusions it is amazing thanks to Keytruda that it is so healthy!  My check in to the Epworth hospital oncology ward for Keytruda went smoothly, I saw the chemo/immune nurse and left the hospital for a lovely light lunch with Keith at a little French cafe, Laurent (really nice baguettes and coffee), within walking distance to the hospital.  A tram ride into the city and walk around the beautiful old shopping malls for 2 hours before heading back to my hospital room. My reason for escaping the hospital for a few hours is the fact that I am so WELL thanks to Keytruda!

Into bed, immune/chemo nurse found a vein in my arm for a Cannula (thin tube inserted into a vein or body cavity to administer medication, drain off fluid, or insert a surgical instrument) insertion for my Keytruda infusion.  A couple of tablets - antihistamine, emend and panadol then saline flush followed by Keytruda for 30 minutes with another saline flush.  All up about an hour!  A rest for another hour then out to a light pizza dinner with Keith until about 8.30pm.  Back to bed, catch up on some computer work helping others worldwide navigate the mesothelioma trail, Keytruda emails and posting news items on deadly asbestos globally.  Unfortunately as limited computer access in the hospital this is all that I can do, plus a couple of phone calls and it is midnight!  Just in time for the nurse to check my blood pressure and turn the light out!

4.47am woken by the night nurse to check my blood pressure!  My oncologist Dr Allan Zimet did his rounds at 6.15am (I had showered, dressed and tidied my room including stripping the sheets off the bed (again thanks to Keytruda I am eager to be discharged as I feel so healthy and well, and by helping to tidy my room it will be a quicker turnaround for the cleaner to clean the room for next patient!)

Dr Zimet asked me if I was having any problems with breathing.  My reply was yes I am noticing slight shrinkage of chest at times.  I asked Dr Zimet if he had seen my scan of yesterday.  He had read the report however had not seen the scan as yet.  "Appears to be nodules (tumours) in the lung(s)".  I, myself,  have since received a copy of the scan and there is a mixed bag as looks like some shrinkage and stable too of tumours and fluid.  We both agreed that Keytruda is still working and it is keeping me alive, healthy and fighting fit!  We will see Dr Zimet on Weds 24 Feb and review the actual pictures of scans prior to my next Keytruda infusion that night!   If Keytruda stopped working for me tomorrow - I have had my life back with quality and living to the full, because when I commenced Keytruda early in April 2015 my body was shutting down, 24/7 oxygen, weight 42 kilos and on morphine for heavy pain and at the time I was within a few days from death's door. 

Upon my 7.30am discharge, I walked through the beautiful leafy suburb of East Melbourne, through Fitzroy and Treasury Gardens then all the way up Collins Street to Southern Cross railway station where I caught my hour long train home.  1.5 hours of a brisk walk and the train ride home, by the time I walked in our front door I was pretty tired, half of this is due to my lack of sleep in the hospital and the other half to Keytruda fatigue for a couple of days.

KEYTRUDA IS STILL WORKING - we have been in Tasmania for nearly 2 week's now enjoying walking along the beach, looking out to sea at the gentle waves flowing in and out over the sand and looking across to Low Head lighthouse with the her light flashing to warn passing ships - so peaceful, relaxing and perfect for healing!  It is thanks to dear friends who are minding our home and Charlie (our siamese cat) that we can be here and recharge our immune systems to fight cancer.

Happy birthday Sandra! Enjoying dinner with friends at Riviera Hotel, Beauty Point, Tasmania.

Rotunda Cataract Gorge

Beautiful Cataract Gorge, Launceston, Tasmania. Just walked along the gorge uphill!
Looking out to sea, sending big hugs to all who need them!

Valentine's weekend we shared a Swiss chalet at Grindelwald, Launceston, Tasmania overlooking beautiful Lake Louise.  Grindelwald is modelled on the real Grindelwald, Switzerland.  Saturday evening with friends we enjoyed a meal at Rosevears waterfront tavern situated on the picturesque Tamar River in Tasmania’s Tamar Valley. A fabulous dinner with jazz singer background music.

Swiss chalet where we have enjoyed Valentine's weekend with friends.

Valentine's day we enjoyed a champagne breakfast at our chalet then a lovely luncheon outside on the terrace with friends including another mesothelioma warrior Rohan and his lovely wife Barb.  Gabby their 7 year old golden labrador joined us for lunch - Gabby enjoyed a boiled egg and cheese!

Monday a visit to Launceston's Cataract Gorge - walk along the gorge and a pitstop at the outdoor cafe with a visit from the resident peacocks!  That night out with more friends to the Riviera Hotel, Beauty Point and to celebrate Sandra's birthday.

Today a drive 20 mins away to Beauty Point, River cafe sitting outside overlooking an amazing view of the river.  Very relaxing sitting there!  Home to a walk along the beach, and a meal at home here of  Tasmanian salmon that I lightly grilled.

Why am I writing all of what we are doing while in Tasmania?  It is to highlight my quality of life to be able to enjoy living free of pain thanks to Keytruda.   For me, without Keytruda my life had almost ended.  My life last April consisted of my bed and painfully with the aid of my husband Keith to sitting in a comfy chair in the living room for an hour or so before I had to go and lie down as I was so weak, in pain and needed 24/7 oxygen.

Keytruda fast track on PBS petition update
Below is my latest petition update.  In this update, a dear friend, Kylie sharing her story of her young husband, Nick who has esophageal cancer and as unfortunately all normal avenues of treatments have failed.  Now he has been given a life line of  Keytruda.


Nick aged 40 years, Tasmania, Esophageal cancer given lifeline of Keytruda

Lou (Louise) Williams
16 Feb 2016 — (Lou's comment: I have known Kylie for 15 years. Kylie bravely is sharing their journey with cancer. Nick has just had Keytruda infusion no. 2)

In January 2015 my husband, Nick, at 39 years of age was diagnosed with stage IV esophageal adenocarcinoma caused by reflux. Since diagnosis Nick has had multiple types of chemotherapy with varying levels of success, each time though the cancer takes over gaining momentum again.

We are now at the bottom of the barrel so to speak, with limited options left. Keytruda is the only option offering any real hope and quality of life for Nick. However, Keytruda is not on the PBS and is extremely expensive, costing thousands of dollars per treatment every three weeks. Patients with this disease and their families suffer enough, without having the financial burden and stress added to this associated with working out how to fund treatments, so they can be given the best possible chance to prolong their life with some kind of quality.

Keytruda needs to be fast tracked now to help patients like my husband.