Hello Friends and Family.
Tuesday 19th May, Bobbie Head's office
told us, our chemo regime of Abraxane and Gemcitabine is no longer working.
From examinations of the CT Scan the week before, the cancer has
spread to Johnny's lungs. “Innumerable bilateral pulmonary cavities in his
lungs which have increased significantly”. “The lung walls have thickened, along with accumulation of fluid
in his abdomen”. Johnny's breathing is laborious, considerably so.
Chemo has been hell! But without the chemo, Johnny would not be here. The chemo was our army, killing the cancer on our behalf. And, now with no more chemo there are no soldiers to fight on our behalf. As, Johnny become weaker the cancer becomes stronger in the body.
No more chemo. That is it. Done.
The news was given with the greatest care, respect and sadness. Dr.
Lucas, head of Marin Cancer Care, was sincere with her kind deliverance.
Again, not the news we wanted to hear. Deep
down Johnny knew, his body has changed, incredulous drop in weight, the slowest of movements, the feeling
of cancer, the return of the heavy nightly sweats, the return of seven shirts a
night, the numerous bed linen changes.
I awake at the slightest movement of Johnny, I watch how he awakes
during the night, removes a shirt, wipes his body down with a towel only to put
on a fresh shirt. This is all
done eyes closed, in mid, deep, sleep.
The pain has increased ten
fold, dosage of medication, doubled and intake doubled/tripled.
What next?
Clinical Trial at UCSF.
What is a Clinical Trial? What does this
mean you might ask? It’s a
study. There are currently two clinical trials. One we know of, is GVAX Pancreas
Vaccine, sponsored by Aduro Biotech. Only 240 people nationwide will be enrolled, from
different participation centers. The GVAX pancreas vaccine is made from other patient’s
pancreatic cancer cells. The cells
were changed in a laboratory to make a protein called GM-CSF. This is done by putting the GM-CSF gene
into the pancreatic cells. A gene
is a piece of protein (DNA) with a message on it that tells a cell to make
something. In this case the message
is to make more GM-CSF than it would normally make. GM-CSF helps to activate the immune systems cells to
recognize and attack the cancer cells.
Because a gene was inserted into the cells of the other patient’s cancer
cells to make this vaccine it is therefore called “gene therapy”.
With participation within a trial, it is accompanied
by a 43-page consensus document, criteria, screen procedures and pre requisite requirements.
A computer program will incorporate all of his data and place Johnny in one of
the three “Treatment ARM(s)”. It is randomized, neither Johnny or our doctor can dictate or know which Treatment ARM
Johnny will be selected for.
Our appointment with Dr Andrew Ko at UCSF is
scheduled for Monday 15th June. If not earlier.
Johnny wanted to go away. Memorial Weekend. I was set
against, foreseeing health issues and struggles. But I have to allow Johnny to
be able to live. Cabo and
sunshine beckoned us, shared with good strong solid friends. Moments,
cherished, building another layer of memories. Our friends understand
Johnny, understand his pain, his struggle. They have shared the path
together with Johnny. Their patience, love and care makes Johnny feel
loved. Choosing carefully restaurants Johnny would like, only to change the
timing for Johnny at a moments notice in order for Johnny to rest more. Chilled moments poolside, cocktails and
laughter. For one split second it
was a normal day. Holidaying with
friends.
United Airlines were superb. We had wheelchair
access throughout the air trip, pre-boarding with excellent seats. Once landed in Cabo, a turbo charged wheelchair met us at the gangway. Whilst seated, Johnny looked down at the ground, before looking up at me saying "Is this not for old people"? "Sit and relax honey" was my response. We bypassed five plane loads at customs, immigrations forms were completed on our behalf and in a taxi headed to our hotel. From what could have
been a 90-minute wait at immigration, turned into a 10-minute trip, from
landing, immigration and taxi. Superb. No
wait, no line, no silly questions. All paperwork was done for us, out and back to San Francisco. Lovely.
Until then friends, we await Monday 15th
June at UCSF.
Please send Johnny your love your funny stories
what has been happening with you
He would love to hear from you. His email: johnnypye@yahoo.com
He would love to hear from you. His email: johnnypye@yahoo.com
With love and tears
Michelle & Johnny
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