The Witching Hour

The nights are getting a bit weird; I'm aware of the shifting sands in my body- differences and niggles and annoyances that I have not felt before. Lumps and bumps and gurgling and aches and occasional sharp reminders that all is not a calm still ocean at 3:06 am. I wake up and do the walk to the well endowed medicine bowl- you can get anything you want if you have cancer.......

"A Volcano in my Tummy" - a very apt book title......

It's just an oxymoron- I don't feel these things during the day at work......I have a couple of paracetamol every morning and I feel fine for the day; I just can't get around very quickly and am not on my feet for sustained periods of time.It's when I get home and put my feet up when it starts to send me a hello message- I'm here, I'm a little bit country and a little bit rock and roll....ahh music to my ears.

I had a scare at the local shopping centre on the weekend, I call "Badlands". I felt a bit stiff on Saturday morning but thought to myself it's time to get an ugly passport photo so I can renew my passport- you never know I might do an overseas trip again sometime soon..... I walked around for 10 minutes and I'll be darned if my body completely freeze-framed on me. I couldn't walk to save myself. It freaked me out completely so I found the nearest cafe and had a lovely flat white with skim milk and a gorgeous croissant, while I had my first "Georgia Meltdown". It wasn't pain , it was just pressure and too difficult to move around! It has never happened before so I had to do some psychological aerobics to find my equilibrium.....

The extra night-time pain killers have frozen my abdomen solid so I am working on making my digestive system get back to basics. It is annoying because I am not even on any treatment for cancer at the moment. I am taking the heart protection meds and that seems to have settled me down. I tempted fate on Sunday and pushed it a bit to see if I could.... and did the housework; washing, vacuuming never felt better! It was alright!

I have been eating smaller meals and not taking too many risks with my food intake. Small snacks are more the go, with a nice glass of wine added for good measure every now and then. I have dropped a little weight but it is just levelling out back to what I was a few years ago.

Waiting for the next treatment.....

Love Your Life,
Georgia

Possibilities throughout the universe

I have been like a dog to a bone- determined to find something to hang my hat on - what could be the next best thing to help me out?

My research has led me to practices such as CYBERKNIFE and PROTON THERAPY. These sound like science fiction but are available throughout the rest of the world-just not in the lucky country-Australia!

I have initiated contact with some medical tourism companies, but initial feedback is that my situation is probably too far down the track- my tumours have metastatized too extensively throughout my abdomen for even these high technology procedures to be on the very safe side.

This is hard to process, but it is early days yet. I have a friend Karen, who has been battling LMS for several years and has had surgeries, cyberknife, radiation, chemo and is still giving the illness a really hot go! She is a true champion. Her blog is incredible!

I am also going to investigate radiowavetherapy, another alternative treatment which is available in Perth, Australia.

I have nothing to lose, and lots to gain. I am not going to give up, not by a long shot. The reality check ofcourse is that I am now feeling it - and am working out how to ease in to pain management effectively.

One day at a time....

Love Your Life,
Georgia

One door closes....

Pazopanib is a no go!

Disappointment abounds

LMS is rare

Being treated for LMS with Pazopanib is rare; get funded fully for it by the drug company (over $6000 per month) is rarer still!

The combination of being treated with Pazopanib whilst having my particular heart problem is in the "Unknown" realm and deemed too risky!

I now will start on Heart Protection medication which will assist my left ventricle of my heart to pump blood more effectively.

The Sarcoma team will consult as to the next best treatment regime. It looks like the next door opening will be chemotherapy.

The next appointment is 2 May. I will know more by then......

Time to raise your glass - let's have a pinot,

Love Your Life,
Georgia

Echocardiogram-another word for Heart Ultrasound!

Had a heart check today: via an echocardiogram.  But you've got uterine cancer you say......?

Ah yes, another little complication.... I've been experiencing a little bit of discomfort in my chest. getting a bit puffed out (no I have not been working out, surprise, surprise...). So there is a problem, but it appears it is not with the electrics of my heart as we first thought. It is more likely to be due to a low ejection fraction in my left ventricle....It may be due to effects of chemo-who knows?

I also had a blood test and got the all clear in regards to possible heart damage over the past few days....Yey!

What does this all mean? I don't know, but am meeting with the cardiologist on Friday morning (in two days!) This may require some medication for heart protection. I may still be in the running for Pazopanib which has arrived finally!!!!!!! I will have to wait to get the official word from the cardiologist. After this appointment, I will catch up with the sarcoma doctors on Friday to go the next step, whatever that may be....

There may be good news around the corner, just you wait and see!

Love Your Life!
Georgia

More tests, more delays in treatment

If this was going to be about learning life lessons to let go and not be in control, I think I am on the right path.

I am not in control of my treatment and my LMS status. It is challenging my sense of balance and positivity. And yet, I am still well, and living my life without too much discomfort and restriction.

The call came from Peter Mac 12 April; please come in for more tests. There was an irregularity reported in my heart test yesterday.
What is it?
My heart rate is actually OK, but the problem has to do with Conduction- I believe this relates to electrical activity in the heart:  "The electrical conduction system that controls the heart rate: This system generates electrical impulses and conducts them throughout the muscle of the heart, stimulating the heart to contract and pump blood."
 The issue may have arisen due to last year's chemotherapy.

The medication is on hold now until we know one way or the other if my heart can handle these new meds. The Sarcoma Specialist needs more information from the cardiologist before we can proceed further with treatment. I will have to go in to Peter Mac next week to have this issue checked out. Then go back in again to meet with the cardiologist to receive feedback about the testing. So, first week back at work after a two-week break, but I have to go in for two days to hospital!!!!!

I cannot believe it, it is so frustrating. Could this mean Chemo is the next treatment after all? If so, Ifosfamide or Gem/Tax will possibly be back on the table.

In a follow-up phone call to the hospital 13 April , I have locked in two appointments next week: Wed 18 April at 10.30am for an Echocardiogram, and 20 April at 9am to meet with the Cardiologist to go through the results.
On the phone, the Sarcoma doctor was still keen about the possibility of me qualifying for this medication- it is seen clearly as the best option for me right now. There aren't a lot of other options that could be effective in helping me to be Progression -Free!

We shall see.....
Is it true?: Cancer is just a word, not a sentence..........

Love your life,
Georgia

Update on new treatment

I have been in to Peter Mac on Wednesday this week and had a long consultation with the doctor.
We discussed pain medication and also looked at the new  meds: Pazopanib paper-work. I did have to sign consent forms to use the medication. The drugs unfortunately had not arrived as yet, and are now due by the end of the week. Hopefully they will call me back in for these prior to the start of work next week!

I  needed to do further tests on the day to establish a baseline for comparison once i start on the new meds. I also had a heart test, so I have to wait to get the all-clear on this, as I did have some heart effects from the Doxorubicin I was on. There is a possibility that I may not be able to use the new meds. I was not aware of this being an issue prior to going to the hospital on Wednesday......

It is interesting that the actual drug company is sponsoring this application for my use of Pazopanib. The drug has passed trial phase, but I believe that the drug company will continue to collect data from participating hospitals; thus the baseline tests I did yesterday. There is no limit period per se to using this medication. Itis more about tolerance whilst on it and whether I can return to a Progression-Free status. The side effects are a concern, but we will monitor these as I go.

Cheers,
Georgia

To Viv, who loved her life!

To one who loved their life:

You have lived a wondeful life
You have battled long enough
May you find the peace which passes all understanding

You are fondly remembered
You are my inspiration
You have my admiration and respect for the journey well-travelled,

Vivian, May you rest in peace:  9 April 2012

Love and affection,

Georgia

Good news, drugs are on their way to Melbourne City!



The return of the hair....

 A lovely development today: I got a  phone call today from my Sarcoma Nurse at Peter Mac Hospital to say the drugs are approved and on their way to me......

So, it is predicted that the medication will arrive next Tuesday 10 April. My next consultation has been adjusted to fit in with this- my appointment for this week will be postponed. I will now have an appointment on Wed 11 April, so that the CT scan and the medication regime can be discussed. I assume I will get the run-down on the side-effects as well, and how to look after myself whilst on these meds.

This is not a trial; this medication has already gone through the Phase 3 trial stage and has been approved for use in the USA. The main benefit is that PAZOPANIB has been shown to add Progression Free time to some LMS patients. The meds come in tablet form so I can take it at home, morning and evening, without having to attend at the hospital. It also gives me a further break from chemotherapy, as long as I can be shown to be Progression -Free.

How Pazopanib Works:
Pazopanib is not a chemotherapy drug but one of many "targeted therapies."  Targeted therapy is the result of about 100 years of research dedicated to understanding the differences between cancer cells and normal cells. To date, cancer treatment has focused primarily on killing rapidly dividing cells because one feature of cancer cells is that divide rapidly. Unfortunately, some of our normal cells divide rapidly too, causing multiple side effects.
Targeted therapy is about identifying other features of cancer cells. Scientists look for specific differences in the cancer cells and the normal cells. This information is used to create a targeted therapy to attack the cancer cells without damaging the normal cells, thus leading to fewer side effects. Each type of targeted therapy works a little bit differently but all interfere with the ability of the cancer cell to grow, divide, repair and/or communicate with other cells.
There are different types of targeted therapies, defined in three broad categories. Some targeted therapies focus on the internal components and function of the cancer cell. The targeted therapies use small molecules that can get into the cell and disrupt the function of the cells, causing them to die. There are several types of targeted therapy that focus on the inner parts of the cells. Other targeted therapies target receptors that are on the outside of the cell. Therapies that target receptors are also known as monoclonal antibodies. Antiangiogenesis inhibitors target the blood vessels that supply oxygen to the cells, ultimately causing the cells to starve.
Pazopanib is designed to block tumor cell growth in several ways.  Pazopanib targets  several proteins (called tyrosine kinases) on the surface of cancer cells, as well as targets within the cell. Several of these targets are thought to be involved in angiogenesis (making of blood vessels).  By blocking these targets, it is hoped the cancer will shrink.
Research continues to identify which cancers may be best treated with targeted therapies and to identify additional targets for more types of cancer.



 

A happy snappy ( taken a year ago)


The Journey Continues,

Love Your Life,
Georgia