Living With Mesothelioma-My Diary- A message from The Marsden. A message from MARF about Trials, and a message that they have sold all those wonderful Poppies

Got up yesterday and felt fine but as I made the beds my blood sugar dropped to the floor. I was sweating and felt like my head was caving in with a tight band around it. Oh dear !!!

Ray made me a sweet coffee and I ate a biscuit and sat around, I had no energy from then on. Wandering wether I out to phone the Doctor I had a phone call from the Royal Marsden. The Doctor told me that my water infection was ok when testing but when they grew it the bug was still there She emailed the report to me and to my GP.


Final report MSU 21 October 2014


White Cells


None Seen

Red Blood Cells

None Seen

Epithelial Cells


Urine Organisms


Urine Crystals


Urine Casts



Enterococcus faecalis


10,000-100,000 cfu/ml








Enterococci are intrinsically resistant to cephaloporins and ciprofloxacin and these antibiotics should not be used in their treatment.

Of coarse I googled and came up with

Vancomycin resistance is acquired when a sensitive Enterococcus acquires a special piece of DNA called a plasmid that permits the bacteria to become resistant to vancomycin. The new strains are called vancomycin-resistant enterococci (VRE). One concern is that VRE strains appear able to transfer vancomycin resistance to unrelated bacteria such as MRSA(methicillin-resistant Staphylococcus aureus) and these strains are renamed VRSA. In addition, VRE organisms, like MRSA, are usually resistant to more than one antibiotic.

VRE can be spread from person to person and are an increasing problem in hospitals and chronic-care facilities. Approximately 30% of all enterococcal infections are now caused by vancomycin-resistant strains (VRE).

Caused by a low Immune system.

Seeing that this can be contacted through hospitals worried me so Ray ordered bottles of sanitisers like you have in hospital and we will have them around the house from now on. I use wipes and gels but with my low Immune system we thought it was best. The drug may have turned my Immune system on but I dont know o what extent.

My GP emailed to say he had put the prescription into the chemist for me so that will be delivered today. What great service. It must save him time to be able to do it by email than have people in the surgery. I love this modern approach to the NHS.

The Marsden Doctor isnt to worried by my low blood sugar either she will look at that when I go to have my drug next wednesday,

I have porridge this morning for breakfast and will eat healthy to combat any problems I might be having. Brown bread for lunch and Jacket potato for dinner.

I stayed in all day as I had lost energy to face a long walk so Ray did all the dog walking.

Today I just feel like a cold coming maybe thats the problem.

MARF have written a great piece on trials

Dr. Lee Krugby Lee Krug, MD, Memorial Sloan Kettering Cancer Center








This week, a notification was sent to investigators on the DETERMINE Trial that accrual will be completed by the end of October. DETERMINE is an international, randomized trial comparing treatment with an immunotherapy drug called tremelimumab to treatment with placebo as second or third line therapy in patients with malignant mesothelioma. The trial opened in May, 2013, and in just 17 months will have enrolled 542 patients! This is a notable achievement. To put this in perspective, the last phase III of this magnitude testing vorinostat in a comparable group of patients (VANTAGE Trial) took 5 1/2 years to enroll 660 patients. There are differences between these two trials that could have accounted, in part, to the more rapid accrual. In DETERMINE, 2/3 of the patients receive the study drug, 1/3 get placebo, while in VANTAGE it was half and half. Also, immunotherapy drugs such as tremelimumab have garnered tremendous excitement in the oncology field due to their promising results in numerous cancers such as melanoma skin cancer and lung cancer. Yet, despite these differences, this accomplishment of completing a trial of this size in such a short period time should be a wake-up call to the pharmaceutical industry. Historically, drug companies have been reluctant to undertake large trials in mesothelioma due to concerns about feasibility and slow accrual. But this trial demonstrates the potential. Patients with mesothelioma urgently need better treatments, and with only one chemotherapy regimen approved, there is a tremendous opportunity to impact the outcomes for these patients. So here is the message to pharma: Large trials in mesothelioma are possible, and the community of patients with mesothelioma is eager to participate.

Lee M. Krug, MD, is an Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center in New York, New York where he completed a fellowship and chief fellowship in medical oncology. Dr. Krug is the Director of the Mesothelioma Program at Memorial Sloan-Kettering Cancer Center. Read more about Dr. Krug’s work here.

We need to get our NHS to read this so I hope all the Doctors and Nurses that read my blog will take note and take this thought into their meetings and conferences. This is what Lord Saatchi and I talked about when he introduced his Bill. We the patient are willing to try the trials no matter what as we have nothing to loose and we sign to say we wont sue anyway. Just give us more chances.

I sign off with this wonderful photo

The ceramic Poppies have been placed in the moat of the tower of London.

How wonderful that they have sold them all.

We are delighted to announce that we have sold all the poppies. We do realise that this news may be a disappointment for those unable to purchase one of these unique pieces of art.

We will be confirming orders in the next few days and should any further poppies become available we will put details on our website.





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