Just over 9 wks ago I had the news that my treatment wasn’t
working due to progression showing in my liver and spine. It has been an up and down roller coaster
since then trying to get my new treatment plan organised. I thought by signing the declaration for the
Trial immediately would have got things moving more quickly, but how friggin
wrong was I.
Firstly I was delayed due to being admitted to hospital with
severe pain caused by the radiotherapy that was given to my spine and then my
oncologist said he wouldn’t give the go ahead for treatment until pain was
managed and controlled. Due to the CT
Scan department taking it upon themselves to tell me that I couldn’t have the
full body scan done that was requested due to my last one being just weeks ago
I had to wait for another appointment to come through as it was a necessity to
get onto the Trial. Luckily, Jo my nurse
was on the case and managed to get me on the cancelation list.
I had the extra CT Scan along with checking my little old
brain again; which I am proud to say that I still have one. I had the Bone Scan and the ECHO (heart
Scan). I had all the blood tests done,
my height taken along with my ever growing weight and so you would think that
it would just be a simple put my name into the computer to find out if
I was picked for the Trial Drug or the Physicians Choice. But Oh No!, apparently my original tissue sample from my
mastectomy back in 2007 could not be found (and
is still missing) and so another sample was sent in which did not show the
criteria that was needed and so I was refused from the trial. My nurse was very apologetic and relayed all
the information onto me. Luckily, I
still had the C3 vertebra that was removed in 2009 to be sent off, my nurse
said that this sample should show the correct criteria of having a metastatic
breast cancer that is HER2 positive, but due to timelines of scans etc... this
meant that if the testing of my sample wasn’t approved quickly then my ECHO
needed to be redone and so I was on the waiting game once again, but this time
with the anxiety that I could be rejected from the trial.
On Wednesday 20th June, I spoke to my nurse who said
that the Trial company still hadn’t approved my sample and gave me an
appointment for the ECHO to be on Friday the 22nd. Me being me; has to know things and over the
phone asked her if the results of my CT scan were ok. Don’t forget I have gone 9 weeks without any
treatment what so ever since the last CT scan and so the anxiety of the friggin
squatters getting out of control and taking residence in my lungs, kidneys or
any other organ in my body were definitely a big factor that was going around
inside my little old brain. Big sigh of
relief after hearing my nurse tell me that there was no further progression
apart from slight growth in my liver, which to be honest was expected.
Half an hour later and my nurse rang back... My oncologist
wanted to see me, and I was given an appointment for the following day. Cripes!! ... I was up in Yorkshire at my
mum’s so had to get Lee to come and pick me up early in the morning. My stomach was churning, why does my
oncologist want to see me? Is there something in my CT Scan? Has it spread to
other organs? The mind is a very
dangerous place especially when you know there are results to go through. Lee said the appointment is probably to go
through my treatment plan, and like he has done for the past 5 yrs, told me not
to worry.
That night was a terrible night, I daren’t take a sleeping
tablet because I knew I had to be up early and so I tossed and turned most of
the night, with the time being 5.30am the last time I glanced at the
clock. I was shattered and to say that I
had butterflies in my stomach was a big humongous understatement.
Lee was right! Come to think of it, he’s always right but
please don’t tell him I said that. My
oncologist appointment was to discuss my treatment plan. Scan results were good and showed slight
progression in the liver. No other
organs affected by my bloody ugly squatters.
We discussed the loss of my original tissue sample (still not been found) and decided the treatment I would have if I
was picked out for the Physicians Choice (IV chemo of Eribulin). I also signed the consent form for the
Eribulin just incase I was rejected for the Trial of TDM-1.
Lee and I came out of there with the big feeling that the
appointment was to prepare me for being rejected for the Trial. Hense my oncologist saying, “there
isn’t always enough tissue to test from a bone sample” along with
having me sign for the Eribilin chemo too.
Mixed emotions again and back on the waiting game. I so want the TDM-1 trial drug, who wouldn’t,
the results so far have been amazing and is currently being called the New
Wonder Drug, on the other side what is most important to me right now is
actually being approved for the trial as this means that I will be watched and
monitored more closely and so any further spread will be caught early. I have read up on the Eribulin Chemo which
sounds to be another good drug too, this has just recently finished trials and
has had amazing results, but... yes there is a but... if I have this one, it
will mean that my 2yrs of hair growth from the last IV chemo, my staggering 2
inches of growth because the Capcitabine and the Navelbine delayed and stopped growth
would inevitably fall out, turning me into the bald Kazza with the humongous
cheeks from the steroids. Whatever the
outcome, treatment will commence next week.
Luckily I am approved for the trial, another obstacle over come and one
obstacle to go.. Do I get the Trial Drug Of TDM-1 or not?
Monday 25th June and my phone rings. I know straight away who it is and answer the
call with my heart paused. Hearing Jo’s
voice, I knew straight away and butted in quite quickly “I havn’t got it have
I?” Jo seemed to be more disappointed
than me, it has taken what seems forever to get me on the trial and at the last
obstacle, the computer didn’t pick me for the drug anyway.
Am I disappointed?
No! Like I said the
main thing for me was to be on the trial so that I am more closely monitored,
plus treatment will be given in the Research department rather than the normal
Chemo Day Unit, meaning less hanging around, waiting and delays.
Chemo is set for Wednesday at 10.30am. I will have the Eribulin Chemo on Day 1,
again on Day 8 out of every 21 day cycle.
I will also have the loading dose of Herceptin again which will be given
every 3 weeks, but am hoping that because I have done the loading dose twice
before over the last 5yrs that they don’t keep me hanging around for the 6
hours to keep an eye on me incase of a reaction. For my second cycle of chemo, it is also
being sorted for me to go back onto IV biosphosphonate, the bondrant tablet
that I thave taken for the last 3 yrs will stop and I will have once again
Zometa
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