ADELAIDE: JULY 2015 update

Had my usual 3 weekly chemo this week. Then developed problems with my legs: swelling, numbness and nerve pain. When I talked to my oncologist he asked if I would like to stop chemo to have a better quality of life – so …. if the only thing which is keeping the mesothelioma at bay, does dying earlier give me a better quality of life? LOL. I think NOT!

I choose to keep on with Alimta and put up with the inconvenience. Hoping that the magic bullet is just around the corner, there seems to be so much research into alternatives to chemo, we just have to live long enough! However, I really can’t complain, as you only have to look around d and see that there are so many people far worse of than yourself.

Love and light to all my followers. Thanks to everyone for your continued support.

IMG_0683

Advertisements

ADELAIDE – APRIL 2015 – ‘NEWS FLASH’

Over the Easter weekend, I was interviewed for a story about the third wave of mesothelioma, quite timely as Global Asbestos Awareness Week was 1 – 7 April: “hear asbestos, think prevention – asbestos, 1 word, 1 world, 1 week”.

I have been told that the story will feature on CH10 The Project on 14 April – but I can’t confirm this date.

I believe that my interview will be part larger cross section of people discussing their involvement with asbestos, so I just might have my 15 seconds of fame as a survivor! (following my terminal diagnosis, and a life expectancy of around 4 months, on 12 December 2007)!

Loving thoughts to all the Mesowarriors fighting on! Love and light to you Lou.

Best wishes,

Lorraine

ADELAIDE: April 2015 – going forward

Just a quick catch up.

I have been on a regime of 3 weekly chemo for a while now, on Pemetrexed and Cisplatin. Unfortunately around December I had an allergic reaction to Cisplatin, so that’s now gone for good. Only on Pemetrexed (Alimta) which means shorter time having chemo. This 3 weekly cycle will go on for the future, only when I go on a holiday will the time between chemo be lengthened.

Life is good, just a few ongoing problems, but hey I can’t complain – 7 YEARS and counting!

Love and light to all!

IMG_4253 - Version 2

ADELAIDE – AUGUST 2014

Hi there, current update:

Still have lingering remains of viral chest infection.
This week’s surprise is DVT in left leg, on blood thinners.
Having another chemo chest port put in next Monday in time to have 2nd chemo on Tuesday.

Other than that, life is peachy keen! Onwards and upwards!

Send positive thoughts – love and light to all. L

ADELAIDE, JULY 2014 – gone viral!

Hi family and friends, spent 3 nights in hospital from Monday. Had a viral infection in my lung which was not good due to still being in compromised immunity from chemo last week. Coughing, temperature spikes, feeling generally pretty tired and sorry for myself (boo hoo to me). Here I am a few days later, almost shiny and new. Having another new chemotherapy port put in before the next round of chemo in 2 weeks. My oncologist will try to tailor the dose a bit so I am not so affected next time. So now on a low listeria diet as well.

Living life to the full! Have a look at my new friend, brought into my hospital room by grandchildren – he is so cute and looked after me well – his name is CJ Hedgehog!

Lorraine in hospital with new friend CJ Hedgehog (gift from grandchildren)

Lorraine in hospital with new friend CJ Hedgehog (gift from grandchildren)

ADELAIDE, JULY 2014

After 7.5 years of successful treatment to halt the progression of  mesothelioma, my condition has been considered stable with the disease confined to the left lung only.

Around 6 weeks ago, began to have severe pain in my back which inexplicably moved around with treatment so after having no real success, my Doctor suggested I have a CT Scan.  Even my Doctor was amazed at the results of the scan, having had so much success in keeping the mesothelioma stable.

The scan revealed that whilst there was no activity in the areas previously treated in China, there was new activity in three areas in the left lung and now in the right lung.  Wow!

My Oncologist in Adelaide advised that there has been no different treatments available today than there were 7.5 years ago when I was first diagnosed, even more so now that it is in both lungs.  The first thing to do was give me a number of pain killing drugs to give relief from the pain – I need not describe it to my other Meso Warriors!  On Monday next week I start with 2 chemo drugs every 3 weeks.

I am feeling really  confident that the chemo will again stop the progression, then I can look into the China option again.  After my problems with chemo before, I always said I would never have it again, but when your back is against the wall there are no nevers!   I told my oncologist that we have booked a cruise to New Zealand in November – so get cracking with the treatment.

Keep me in your thoughts and prayers – love and light to everyone !

 

CHINA 2014

10010540_10201563696128626_8383662524531947684_oHappy Mother’s Day from my lovely Girl!

ADELAIDE 2014

12 MAY 2014

Just a general chat.  I went in today to have my infusion port removed from my chest.  The titanium power port was inserted in March 2009 because it was not possible to access my tired veins for chemo, blood etc.  Over the years it has been a very good friend, having had no trouble with it, but in recent times the upkeep has been a bit cumbersome, as even though not used so much recently it has to be flushed and heparin dose block put in, around every 6-8 weeks.  I spoke to my surgeon before he removed the port and he was surprised to see me, as usually mesothelioma patients don’t come back for removal.  Although he did say that port removal was his favourite operation – very simple and quick.  Just a few dissolving stitches (I can’t tell you how many as it has a dressing), not too much discomfort, another problem solved!  In our discussion my surgeon did tell me that I was one of the first power ports he installed and is now the only port he considers to have such a good track record, less infections, less clots and good blood access.  Our parting comment to each other was that we hoped we would not see each other again!

Of course my main problem currently is the abysmal condition of my back due to a couple of car accidents long, long ago.  My ongoing attempts to keep on top of the pain is boring in its regularity.  My practitioner said about my current very painful episode, that it is the first time in 22 years of treatment the has seen problems in 4 areas  occurring at the same time – so again, I am ‘special’ for something not generally favoured!  I live in hope of a speedy recovery – until next time!

Came across a really good read recently – ‘The Emperor of all Maladies.  A Biography of Cancer’ by Siddhartha Mukherjee, a cancer physician and researcher at Columbia University.  Winner of thePulitzer Prize for Non-Fiction 2011.  Sounds very dry and boring – but is is such a good read,  from the very early cancer treatments to modern times in layman’s language about various cancers, trials, patients, and the science explained – not many words about mesothelioma though, but still very interesting.

Love and light to all, L

CHINA 2014 – 11th VISIT TO CHINA , 14 April 2014.

TREATMENT PHASE:

I arrived at Southern Medical University Renkang Hospital, Houjie, China on 14 April 2014, to meet up with Professor Dr Wang Xiaohuai and Dr Kun Li to discuss my treatment for my Left Pleura Malignant Mesothelioma. It was decided that I would go to Guangzhou Military Hospital on 15 April to have my blood taken to be cultured for DC-CIK Immunotherapy (Dendritic Cell–Cytokine Induced Killer therapycells with a precise role in killing tumour cells). This was done, although this time my veins did not co-operate so not able to go on the machine to separate the white cells, consequently the nurse just removed about 100 mls of blood and it was whisked away to the laboratory to extract the white cells and have all the exciting and wonderful things done to the blood over the next 14 days!

DC-CIK – Laboratory Guangzhou

So then I was free to have 12 days free time before I was to return to the Renkang Hospital for 2 days of IL-2 (Recombinant Interleukin-2) only, then a further 3 days of both the IL-2 and the DC-CIK. This process occurred between 26 – 30 April. Dr Li is always surprised that I do not get a high temperature after the IL-2 infusion as his belief is that a high temperature means the IL-2 is working (which is not really the case with me), and he was disappointed yet again – no temperature. I had no other problems during this time, and the treatment caused me no discomfort.

Image

Nurses looking over me

Image

Administering DC-CIK through chest port

I met with Dr Wang on the morning of 30 April for the plan of my future treatment regime. (A recap up to this time: on Dr Wang’s advice had 1 year of DC-CIK at 3 monthly intervals, 1 year at 4 monthly intervals, 1 year at 6 monthly intervals – which brings me to the current treatment.) Dr Wang said that he was very pleased with my current condition, also taking into account that the CT scans I had in Australia in February showed no change in my left lung compared with the previous study 6 months ago, and the right lung remains clear with no pleural thickening and the conclusion is a stable appearance compared with the previous study. This being the case, Dr Wang has suggested that I continue to have DC-CIK on an annual basis for the next 5 years – I am so overjoyed – I DO NOT HAVE TO HAVE TREATMENT FOR ONE WHOLE YEAR! Woo Hoo! What an important step forward for me, considering it is just under 6.5 years after diagnosis. I will continue to take the medications Dr Wang prescribed for me previously, namely Metformin (nb: google ‘metformin and cancer’) and the Salvestrol supplements.

What great news to take home to my family and friends. It has been a long journey, but the destination at this point is a good place to be in. I am so blessed and grateful to everyone who has played a part in my success up to now and the continued support that I have been given. A big thank you to the medical fraternity also everyone in China, from Drs Wang, Li, Lu, Zhang, nurses, translators – too many people to mention – but they know who they are (this also means you Geoff K, and my wonderful MD in the Barossa Valley).

Image

The Renkang Hospital ‘gang’ – April 2013

The last very important thing I would like to mention are the other patients at Renkang Hospital, past and present, who are all coping with the repercussions of the worst possible news anyone can get regarding your health. The strength and optimism displayed during their treatment is very humbling – you can’t help but admire each and every one of them, especially the bond of friendship and social interaction they freely share with each other on a daily basis. Of course, the partners / wives / mothers / sons etc. who are there keeping everything happening on a day to day basis, are a tower of love and strength to each and every patient, you are all great – take a bow and a pat on the back! Sending love and light to each and every one of you, and I wish you all the very best of everything always.

Image

My friends Polly, Sammy & Dr Zhang

HOLIDAY’ PHASE:

During my 12 days between treatment, my husband and I visited a number of areas in Dongguan. We usually go on a holiday to places further afield, but this time decided to stay locally.

Firstly we went and spent a few nights at Well Garden Hotel in Houjie near the hospital, this allowed me to meet up with the new patients from Australia, Hungary and Indonesia, many of whom had read my blog. It was really great to spend time with them. We were also able to go to a few of our favourite Italian Restaurants in Houjie, and also do a spot of shopping.

Image

Grand Noble Hotel, Humen.

Then went to Humen and stopped at Grand Noble Dongguan Hotel for 4 nights. We usually take the fast train from Humen to Guangzhou, a trip of 17 minutes travelling at over 300 kph – on the road it takes up to 90 minutes. This time we took the hotel bus which was dropping off guests to the famous Canton Fair in Guangzhou. We taxied to the centre of Guangzhou and visited a number of places where we have purchased articles previously and renewed our association. Then caught the Metro – they have a wonderful substantial underground Metro system in Guangzhou which is very easy to use as the ticketing machine has English options. It’s a great people mover. Our first option for the return to Humen was of course the fast train, but it was booked out until 10.30pm, and as it was only 4.30pm, then the next option was the Guangzhou bus station, where we caught a local bus non-stop back to Humen, about 1 hr 20 mins. We always enjoy our time in Humen, the hotel is good and has a nice Italian Restaurant, good breakfast buffet, there is Starbucks in the lobby and the shopping nearby is excellent.

Image

Kande International Hotel, Nancheng.

For something different we then went to Kande International Hotel in Nancheng. This is a 5 star hotel which only just opened in December 2013, so we were very lucky that we got very good opening rates, including breakfast. Our room was on the 35th floor, verrrry nice, everything high tech., even the room safe was fingerprint recognition to open/close. The bed had electric controller, so made it great to watch HBO movies in bed! The breakfast buffet on the 37th level was great – we had the best coffee we have had, served by white coated waiters with bow ties, very special. Whilst in Nancheng, we did a bit of walking around looking at the local shopping centres, then went to lunch 2 days in a row to one of our favourite places, ‘One for the Road’ – a British Pub – great food. Then back to the Well Garden to await the start of the immunotherapy on 26 April.

 After I finished treatment on 30 April, we spent one night at the Well Garden Hotel, Houjie, then 2 nights at Grand Noble in Humen – where we catch the ferry back to the Hong Kong Airport, which takes about 70 – 90 minutes and drops you off in the Departures area. During our time at Grand Noble, we caught their free shuttle bus to the Canton Fair in Guangzhou, managed to register and had a really great day looking around just about everything China has to offer to the world – an amazing exhibit of merchandise from medical equipment, sporting gear, clothing, shoes, accessories, jewellery, and the list goes on and on.

Image

Inside entrance Hall A, Canton Fair

We will be glad to get home and hug the family.   Over and out for this visit!

Image

One of the many McDonalds at Canton Fair, huge!

Image

Professor Dr Wang Xiaohuai

PS: I think it is worthwhile revisiting Dr Wang’s professional story, so here it is – my Chinese Oncologist, Doctor, friend and hero:

Professor Dr. Wang Xiaohuai

*World renowned oncology expert – both at home and abroad countries including Japan, Korea and Malaysia and commended by medical experts and patients from many countries.

*Much sought after by foreigners and overseas Chinese for diagnosis and treatment.

*36 years of experience in clinical work in oncology.

*Specialist in internal oncology, tumour biotherapy, photodynamic therapy for tumour and diagnosis and therapy of advance stage tumour patients with all its inherent complications.

*Studied in the USA in his early years and undertook advanced studies for 3 years in a famous cancer centre in Texas USA. Well regarded as an oncology specialist and scholar in the US.

*Inventor of the SPDT machine for treatment of cancer.

*Has served as: a long standing council member of the Standing Committee 
of the China Medical Association -Oncology section; a co-editor of ‘Oncology Magazine’; Director of the Guangzhou Military Oncology Profession 
Committee; Director of the Guangzhou Military District Hospital 
Oncology Department.

*Currently serving as mentor to Doctoral and Masters Degree candidates at The First Army Medical University and South China Science Polytechnic Institute. Most of his students have gone on to become the backbone support for their respective hospitals.

*Highly regarded by the World Health Organisation for the advances and breakthroughs he made in the field of photodynamic therapy. He is the inventor of an advanced version of the PDT equipment called SPDT.

*A senior medical expert who receives monetary subsidies from the State Council in recognition of his work.

*Currently doing research on photodynamic therapy combined with special chemotherapy to effect a cure for tumours. The success of his research will herald a revolution in oncology and give the cancer patients worldwide new hope for a better life.