Back to work: December

Why celebrate going to work........?
On 1 December, I returned to work and I cannot begin to explain how good it felt. The school holidays actually begin on 23 December, then I will have a long break again until late January.
I had a blood test today 21 December, and discussed my progress with my doctor. I am doing very well, but need to watch my iron levels and some side-effects.

Why did it feel so good to go back to work....?
Because I could!
Because I wasn't on my way to hospital!
Because I wasn't having chemotherapy!
Because I wasn't lying in bed feeling sick with side-effects!
Because I was driving to work in the "Leap of Faith"!
Because I got to sit in my office again and at one stage I didnt know if that was a possibility!!!
Because I felt connected when I got there!
Because I feel healthy and great to be alive!

What happens next year?
On 24 January I have my next CT scan.
I go to work for the 2012 start to the school year!
On 31 January I see the Doctor to check the results- is the cancer still stabilised or have the tumors grown since chemotherapy ended in November? The answer to this question will determine the next step in treatment. It is possible that treatment will remain on hold if the tumours remain stable.If so, I will continue to be monitored via regular CT scans.It is possible that the cancer has been active and that my team of doctors will then need to meet in February to discuss my next treatment regime. We shall wait and see!

In the meantime, we will have a wonderful holiday season!

MERRY CHRISTMAS to all at Team Georgia
Love Your Life

Looking to the future: December, January and Beyond!

It's been a busy month. The past week has seen me in and out of Peter Mac Hospital. I have needle marks all down my arms from doing bloods, CT scans, heart tests, and more!

My results are in from the end of Picasso III Chemotherapy. The overall result shows that the cancer has stabilised and has been Progression Free (PF), for the duration of the trial. This is a very good result according to my doctor.

I am disappointed in one sense, as it leaves me basically where I started at the beginning of July. Healthwise, I am better than I was pre-operation as I was experiencing debilitating pain throughout April and May 2011 (Hysterectomy to remove a cancer-ridden uterus on 25 May 2011.)

I have been experiencing an array of Chemo side-effects from the accumulation of 6 rounds of therapy, but am told over the next few weeks these should gradually become more manageable. I am starting to regain my energy levels and am feeling positive about getting out more often.

Today, 30 November 2011, I had bloods done and met with the specialist to discuss my progress and future treatment. A return to work is to occur (finally!!!!!) and further blood tests and consultations will occur on 21 December to check my heamoglobin levels and general health. I will have a two month break from treatment with my next CT scan scheduled for the end of January to check on the tumors. From there, new treatments will be introduced based on these 2012 results.

For now, I am grateful for what I have and look to the future.

Love your Life,
Georgia

Cycle 6 Chemo: All done for the time being!

On Rememberance Day, 11-11-11, I am happy to announce I have now gone through the 6 chemo applications for the Picasso III Trial! It is now time for a small break in treatment. YEY!!!!!!!

It means I will now still have a series of very important tests over the next 3 weeks on my major organs to ensure all are functioning properly. Even more vital, I will have a CT scan to again assess the effectiveness of the treatment delivered in this trial. This will all be followed up by monthly checks and surveys over the course of 2012.

Following the final CT scan at the end of November, a team of specialists will meet and assess my progress and decide the next course of treatment as we head into 2012.

For the future, chemotherapy is definitely on the table; Ifosfomide is the next standard treatment, and this typically requires a stay in hospital as it has highly toxic side-effects. Another possibility is a hot off the press medication which is an alternative to chemotherapy and is given orally in tablet form. It is called PAZOPANIB. It would mean having a longer break (potentially), from chemotherapy. It is a treatment in the USA, but not currently available in Australia. My specialist may be able to apply for it  on compassionate grounds.

For now, I need to continue to manage the known side-effects from my latest chemo and still avoid contact with infection. Thanks for your understanding by staying away when illness has struck. Remember, Skype is a fantastic form of contact and I am loving it when some of you folk get in touch. Cycle 5 was rough and I am expecting the same for this one.

A special thanks to our wonderful friends who visited from Adelaide for my chemo session at Peter Mac today- you know who you are. It was such a treat, and the Movido lunch afterwards capped it all off!

Love your life,
Georgia

Taking it slow after Cycle 5 Chemo

Well, I'm certainly feeling it after 5 cycles of chemo. I feel like I've taken a pounding in my abdomen. I hope a lot is going on in there- like some death and destruction to some cancer cells. I am resting a lot as I react to some side-effects.

It seems like there is so much in the media at the moment in regards to fundraising for different cancer causes.The latest stat is that 1 in 2 people will have cancer at some stage in their life. There is also a big cycling fund-raiser for Peter Mac Hospital being launched at the moment. Everyone is affected to some degree ;we are all connected by our humanity and our vulnerability.

My plea is that we all may live healthy and happy lives every day and live the joy of life in every moment; personally I believe it is all part of the cycle of life. There is a season for everything.

I do believe in fighting against illness and being as healthy and as content as I can be. I do believe in doing damage to the LMS and pushing it back, and I intend to have further success!

Cheers,
Georgia

Glad Tidings as Cycle 5 Chemo Flows In

Greetings to you all,

I have results from the CT scan post Cycle 4 treatment. Again, all is well! We give thanks for this result.

The target tumours are stable, showing no growth since the CT scan post Cycle 2. YEY!!!!!!!!!!
We celebrated by going out to Vietnamese for a light post-chemo meal.

Chemotherapy for Cycle 5 began today (Wednesday) and we'll be back for more on Thursday and Friday this week. The side-effects during Cycle 4 were more persistant when compared to the previous cycles, so I am going to take this one cautiously. I met with the Doctor today and he felt I was handling the chemo extremely well, dealing with the side-effects in a positive/preventative manner where possible. It just is the reality that the toxicity levels rise the more chemo cycles you have so the effects are longer lasting over the three week period. It was great to get this feedback as I don't have much of a frame of reference.Apart from some international forums I am participating in, I haven't actually met an LMS contact in Australia yet.

I have one cycle to go after this one (Cycle 6). The Picasso III trial should close by the end of November, apart from having monthly checks to add more data to the study.

I thought you might like to see me out and about so here are some pics:

georgia with great niece

georgia for brunch at williamstown

georgia visiting roxy in geelong 

Love your life,
Georgia

A Leap of Faith

Today I received a wonderful package that arrived in the driveway.
I have called it : The Leap of Faith. It is a brand new Holden Cruze II 1.4 Auto SRi-V.
I have taken out a four year lease on this vehicle...

Enjoy:

"leap of faith"

Cheers,

Georgia

Cycle 4 Underway

Hi All,
I am sure that news about the AFL Grandfinal (Go 'Pies!) is much more interesting, but to catch you all up with my news:

Cycle 4 Chemo is now over - I was in all day as usual on Wednesday, and spent 3 hours at Peter Mac Hospital both on Thursday and Friday. Apart from being a liitle unwell Friday morning, it all went smoothly. Thanks to my hero Sarah who has absolutely magic and my number 1 support since Day 1, I was driven in comfort and well looked after for each session this week. To make up for feeling unwell this morning, we had a great Japanese meal on Smith St Collingwood (go the 'Pies), on the way home!

I have bloods to come as usual on Wednesday morning week 2,  then in week 3 I have my next major CT scan on the Friday. This one is important as it may signal which direction my health is going towards.
Three options:
1. Tumour growth or new tumours will mean being taken off the trial and put on other meds.
2. Progression Free Comparison to the last CT scan - good news for me, and will mean staying on the trial (ends in November) with a prospect of knowing what new treatments might be going into next year.
3. Progression Free and reduction in size and/or number of tumours - great celebrations will occur, and staying on the trial!

I won't know these results until I see my specialist on Wednesday 19 October. I'll keep you all informed of the findings as they come through.

Cheers,
Georgia

Sisters - a little tribute

Hi All,
CYCLE 3
I am travelling well, but with some obligatory side-effects ofcourse...
I tend to lose my taste-buds in week 1 which is immensely frustrating. I spend a fair bit of time resting around day 4 to day 10. The effects of the injection mean that my bones are extra active in producing white blood cells, so I get qiuite achy in the pelvis, chest and limbs. I also get some osophageal and bowel problems associated with the anti-nausea meds.

By the way, my blood tests show I am travelling very well, based on yesterday's results.

Throughout all this, my beautiful sisters are always checking in with me, offering to do the most mundane tasks to lighten our load. They are gorgeous people, so here they are from Cycle 3 chemo days:

At front entrance of Peter Mac cancer centre: 3 sisters

Aren't they cute!

Treasure your family,

Georgia

Making Good Progress- Cycle 3

There is good reason to celebrate, with a good result coming through from the CT scan from last week. The tumours have not continued to grow at their rapid rate! In fact, there has been no comparative growth in number of tumours nor in the size of tumours since the last CT scan which was two weeks prior to Cycle 1 chemo beginning.

We are very happy about this. Ofcourse, I always hope for more than this incredible news and I am determined to make more impact on the DRAGON LMS!

I have just completed my 3rd round of chemotherapy and so am nearly half-way through the Picasso III trial. It is still too early to discuss the future with my Sarcoma specialist. We are just hoping to remain Progression Free throughout the trial. This term is the one used for Leiomyosarcoma patients, instead of the term:Cure! I know the one that I prefer...

I am being careful to not be exposed to much illness, thus the staying away from work, but am thinking more about the potential of when I could return. I know it is early days for this but am going a bit trippy with all the socialising and Foxtel viewing.....

I want to especially acknowlege my lovely sisters who have been so loyally by my side a great deal of the time and have also been a great support to us at home. You guys are amazing!

Hope you can celebrate my good news with me at some stage soon,
Love your life,
Georgia

Cycle 2 - A picture paints a thousand words

In Cycle 2 I am scheduled to have an important test: CT Scan on 31 August. It is significant for me in that it is the first post-chemo test that will measure the tumours and compare them with my baseline data.

I am hoping that the chemotherapy (2 cycles so far) will have stopped the tumour growth, and hopefully have stopped new tumours from appearing. My participation in the Picasso III study will continue if this is the case. My appointment to explore the results of the CT Scan will be on the following Wednesday 7 September. This is also the beginning of Cycle 3 and the next round of Chemo is scheduled for the 7/9, 8/9 and 9/9.

What is CT Scanning of the Body?
CT scanning, sometimes called CAT scanning, is a noninvasive medical test that helps physicians diagnose and treat medical conditions. CT scanning combines special x-ray equipment with sophisticated computers to produce multiple images or pictures of the inside of the body. These cross-sectional images of the area being studied can then be examined on a computer monitor, printed or transferred to a CD. CT scans of internal organs, bones, soft tissue and blood vessels provide greater clarity and reveal more details than regular x-ray exams. Using specialized equipment and expertise to create and interpret CT scans of the body,  radiologists can more easily diagnose problems such as cancers. It is one of the best and fastest tools for studying the chest, abdomen and pelvis because it provides detailed, cross-sectional views of all types of tissue.
It is often the preferred method for diagnosing many different cancers, since the image allows a physician to confirm the presence of a tumor and measure its size, precise location and the extent of the tumor's involvement with other nearby tissue.

What does the equipment look like?

The CT scanner is typically a large, box like machine with a hole, or short tunnel, in the center. You will lie on a narrow examination table that slides into and out of this tunnel. Rotating around you, the x-ray tube and electronic x-ray detectors are located opposite each other in a ring, called a gantry. The computer workstation that processes the imaging information is located in a separate room, where the technologist operates the scanner and monitors your examination.

I will let you know how it all goes,
Cheers,
Georgia

A few personal moments: brothers in arms

Well, to my surprise the brothers have come on board with some lovely No. 3 hairstyles to match my new appearance (a week ago - not much hair to speak of now!) To honour the moment, I will try to feature them in a couple of pictures...

Brother number 2 and georgia in the lovely pre-spring melbourne sunshine last week

Brother number 3 with a surprised nephew - very cute!

Brother number 1 showing us all his brave new world



Brother -in -law extraordinaire!

The new look Georgia during Cycle 2 Chemo at Peter Mac: color coordinated and calm


I hope you liked the show!

Love your life,
Georgia

Cycle 2 is progressing well

Hi to all,

I have just completed Cycle 2: Day 1, 2 and 3 of Chemotherapy. It has been far less stressful doing it all for a second time as Team Georgia is in place, I am familiar with the processes and staff at Peter Mac Hospital, and have been priviledged to meet several of the volunteer staff who have made my visits there relaxed and welcoming. I was offered a beautiful hand massage prior to chemo on Day 1 (Wednesday)

I have experienced a little nausea after Day 1, but am getting better at managing what to expect on certain days. In Cycle 1 my energy levels (now that I look back) were lower in week 2 than in week 3.So I know not to plan much until week 3 now.

I have booked in for a Hair appointment at Peter Mac to do the final deed as my hair now is very short and disappearing fast. Oh well, it was bound to happen. I have plenty of scarves, beanies and hats and may look at a wig as well ....I'm told I look OK but people can be kind at times!

I have also booked into Peter Mac for a "Look good Feel great" session at the end of the Cycle to look good and feel great. It should be fun and ofcourse the Volunteers donate stacks of stuff to give away. They are amazing and worth supporting if anyone is keen to support Peter Mac.

Thanks also to the bloggers who have sent messages. Your words of encouragement mean a lot to me.
I have also had wonderful emails and phone contact with old friends and I have appreciated your mention of love, concern and prayers.

Not that it always has to be that way, but I am in fine spirits and feeling good and strong.

Much love,
Georgia

Cycle 1 Week 3

Greeting to all.
It's the last week of Cycle 1 and this whole cycle has been full of new learnings and discoveries about Sarcoma. I have been very busy trying to relax and not go to work and not do too much at all. This is a difficulty that I am determined to succeed in no matter how hard it may seem....

So, the common side effects of Doxorubicin are very interesting indeed. I am travelling well but not a miracle worker and so yes, I have experenced a few minor side-effects.
Common side effects include:
1.Risk of infection due to reduction of white blood cells.When the white blood cell count becomes low (usually between treatment cycles) this is called Neutropenia, but then blood counts recover by the next cycle. This is why an injection is given straight after the chemo days and why I have blood tests every Wednesday after chemo (Day 8 and Day 15 of each cycle.)
2. Development of anaemia or bleeding more easily. If the red blood cell count becomes low (anaemia), the person may feel tired or look pale, or may bruise or bleed more easily.
3. Nausea and/or vomiting. This is quite common and many medications are given to avoid this problem. I did experience this on Day 7 unfortunately when I also had a terrible migraine for a few days.
4. Tiredness.  Fatigue is common, especially around Day 8, 9 and 10. I am told light exercise can help reduce or prevent fatigue. I have not felt a lack of energy, but am looking into getting an exercise bike to add it to my repertoire.
5. Hair loss and thinning. This will normally occur within 3-4 weeks of beginning treatment. The hair will grow back about 6 weeks after treatment has finished. I have brought some lovely new scarves and as some of you may already know, I have a great collection of hats. Hair loss has just begun and I think I am as ready as I can be for this....
6. Mouth and teeth. Chemotherapy can affect the lining of the mouth and throat. This can cause soreness in the mouth and throat and mouth ulcers and infections can occur. I have had a little swelling around my gums over the past week.
7. Food can taste strange and appetite can change.I have noticed differences from time to time, but I am healthily eating and drinking well, and am still making my way through the Good Food Guide and Cheap Eats of Melbourne. You can't keep a good gal down!
8. Urine discolored. Doxorubicin is orange/red and turns your urine orange/red straight after treatment- it was very exciting... (I have just brought an orange watch off ebay to match!)
9. Treatment may affect how the heart works. After several doses, doxo can cause heart problems (toxicity). That is why I have heart tests before starting chemo and have my heart checked during chemo. All is well with my heart and "it is well with my soul!".
10. Skin may be affected. During and sometimes after treatment, the skin is sensitive to the sun. It may also become a little darker due to an increase in pigment.

So, in all honesty, a little nausea, mixed with a few extra hours of sleep is all that I have experienced in Cycle 1. And vanity, vanity all is vanity, I will lose my lovely locks of hair very soon. When I need to, I will come to terms with that one. Just remember, no jokes about the hair OK! (This message is especially for my brothers, some of whom have lovingly already tried to make references to humour...)

Cycle 2 begins on Wednesday 17 August: Treatment Day 1Wed, Day 2 Thurs, Day 3 Fri

Love Your Life,
Georgia

Cycle 1 Chemo done and dusted

Cycle 1 Day 3
Friday 29-7-11

Another good day but simply a repeat of Day 2
Saline
Antinausea
Palifosfamide/Placebo

Received further meds for antinausea for the weekend :
Dexamethasone and Granisetron
Clearly they are big on trying to prevent side effects.

Will also have a Peter Mac nurse come by on Sunday to assist with an injection:
Pegfilgrastim (Neulasta Ang).
This is to support  the bone marrow and production of white blood cells. It will directly assist my immune system as this is a danger effect of chemotherapy.Good cells are attacked as are the cancer cells.

So far, no unwellness as a result of treatment- so I am in great spirits.
Cheers,
Georgia

Cycle one continues

Cycle One Day 2: Thursday 28 July
Chemotherapy

 As was the case yesterday:

Saline IV for 1 hour
2 anti-nausea drugs
Then Trial drug Palifosfamide or Placebo

Sent home with new anti nausea meds for Weekend to follow chemo after day 3:
Dexamethazone and Granissetron(Kytril)

Feeling Ok so far but I know day 8-11 are to be respected in this regard.

About the trial I am participating in: PicassoIII
Internationally, it was launched late last year. In Australia, subjects have begun participating. So far, several in Brisbane and myself in Melbourne at  Peter Mac hospital have signed up.The research is international and it is necessary to be as expansive as possible due to the rare nature of Uterine Leiomyosarcoma. I believe they are hoping to find over 400 subjects throughout the world over 2011 and 2012 to have a decent-sized sample.

The goal is to see if Palifosfamide-tris can be used with Doxorubicin as a first round treatment for Leiomyosarcoma. As a trial drug, it cannot be used as a standard treatment until research supports its level of success.Palifosfamide has the good bits in it of the more well known Ifosmamide which is used in around the world currently.

This trial can last for up to 21 weeks; each cycle runs for 3 weeks, with 6 formal Cycles included. On Days 1, 2, and 3 I receive chemotherapy. On days 8 and 15  I will have tests done to see how I am progressing. It is a commitment I have made. I intend to help myself and contribute to as much research on this illness as I can. There are a number of International and Australian research groups that are beginning to set up data bases and investigate causes and treatments of this cancer.

Genetic links and family histories are also to be explored. I am keen to explore this angle for personal reasons and I hope that the sensitivities involved for family members in Australia, Greece and the US will be greeted with an understanding that this is for a common purpose for a common good. If there is a genetic link or any history of uterine cancer in the family tree, we should use it to care for each other for current and future generations.I thank all the individuals who have begun this investigation and I hope that you can contribute as much information as you can to this research.

Love your Life,
Georgia

We're off and racing to defeat the Dragon (LMS)

Wed 27 July 2011: Chemotherapy Cycle 1 started today and I feel Ok.
Chemotherapy is done using an IV.

Today: Day 1 Cycle 1
First part Fluid for 1 hour -Sodium chloride
ECG (heart) measured
Antinausea meds given via IV
Palifosfamide or Placebo 275 mg (chemotherapy)
ECG measured
1 hour break
Doxorubicin 134mg over 15 minutes (chemotherapy)
Then sent home with anti-nausea meds just in case.

I am happy to be having this treatment. I am being careful with my diet and appreciate the information you have all provided for me.I feel very fortunate to have so many quality individuals in Team Georgia. You are all amazing- thanks for all the encouraging messages received for my big day today.

Cheers,
Georgia

The beginning in sight...

I went in to Peter Mac Wed 20 July. Blood tests now fit within the range required for the clinical trial. It all begins next week: Wednesday 27/7/11. I will have to call Team Georgia into the first innings (first cycle of chemotherapy Wed, Thurs and Friday next week) to assist with driving and generally being nice! No matter what, treatment with Doxorubicin will begin.

The results from the tests were great in general and somewhat disappointing specifically. The CT scan does reveal some further tumours in the abdomen.

Quite frankly, if it weren't for these amazing technologically astute machines, I would feel perfectly ready to return to work!!!!

Thanks for the posts so far, I appreciate the feedback via blog, email, SMS, phonecalls, skype or meeting for coffee!

Love your life,
Georgia

Trials....

Hi folks,
Chemo is now on hold for this week. I have to have another blood test at Peter Mac on Wed 20/7 am to check further for Trial compatibility; there may be an issue with this. Therefore, I can't start Cycle 1 on Wednesday now. I will still get results on Wednesday 20/7 from all tests I did over the past week which will be helpful. Depending on how the new blood tests go,I may still go ahead with the Clinical Trial as soon as final approval is granted. I was psyching myself up for a huge week of chemo so it is a bit weird trying to readjust....

NB: The Picasso III Study is a random double-blind study in patients with front-line metastatic soft tissue sarcoma which uses the standard treatment in Australia for LMS:  DOXORUBICIN and pairs it with a trial drug PALIFOSFAMIDE-TRIS.

If I don't qualify for this trial, I will still be receiving the standard chemotherapy drug Doxorubicin (unless there are further issues of concern from the tests done last week.)
Take care,
Georgia

What is Leiomyosarcoma? Time for a lesson...

Leiomyosarcoma is one of the forms of a very rare and aggressive cancer called Sarcoma. Georgia has Uterine Leiomyosarcoma (ULMS).

A sarcoma is a cancer of the connective or supportive tissues of the body. These tissues include bone, cartilage, fat, muscle, and blood vessels. The word sarcoma comes from the Greek word meaning 'fleshy growth'.

Sarcomas can invade surrounding tissue and can metastasize (spread) to other organs of the body, forming secondary tumors. The cells of secondary tumors are similar to those of the primary (original) cancer. Secondary tumors are referred to as "metastatic (mets)" These mets are part of the original cancer and are not a new disease. Leiomyosarcoma (LMS) is a type of sarcoma cancer. Leiomyosarcomas are malignant tumors which develop from smooth muscle tissue. Smooth muscle cells make up the involuntary muscles in our body. Involuntary muscles are those which we do not move consciously with our brain. Involuntary muscles are found in most parts of the body: in uterus, lungs, liver, stomach and intestines, walls of all blood vessels, and skin.

The exact causes of Leiomyosarcoma are not known, but studies have indicated that there are genetic and environmental risk factors associated with it. Certain inherited conditions that run in families could possibly increase the risk of developing Leiomyosarcoma. High-dose radiation exposure, such as radiotherapy used to treat other types of cancer, has also been linked to Leiomyosarcoma and it is possible that exposure to certain chemical herbicides might increase the risk of developing this disease, but a direct association has not been proven.

Most patients with Leiomyosarcoma choose to be cared for by a multidisciplinary team of health professionals. Many local oncologists rarely see more than one or two cases of Leiomyosarcoma in their entire career.

Hope you enjoyed the lesson (can't resist a bit of teaching ....)

Cheers,
Georgia

Peter Mac Hospital 13 July 2011

Another big day out! Signed up for the Clinical Trial, got some tests out of the way: bloods,  ECG, surveys, urine.

Have post op follow-up Gynacology appt at Mercy Hospital  14 July

Peter Mac: More  to do on 15 July- CT on upper body region. Also, will meet with Chemo nursing staff for more specific information about how it will all work.

Tentative arrangements in place to start Chemo on 20 July 2011 for first Cycle (20/7, 21/7, 22/7 treatments).

Yey!
Love Georgia

The Story of Georgia and The Dragon (AKA Leiomyosarcoma)

Welcome to Team Georgia blog, created to keep the team informed about Georgia's comings and goings...
You are invited to join us and blog at will, raise issues, provide advice (which may or may not be considered), and generally say nice things.

The story so far:
After many attempts in 2010 and early 2011 to sort out some medical issues, I had a series of ultrasounds and blood tests. Finally, thanks to a wonderful female GP, I was referred to the Mercy Hospital.This referral eventually led to a Hysterectomy on May 25 2011.This went well and I was home within the week.

I then received an early call back to the Mercy Hospital: verdict- the "fibroids" that had been removed were in fact cancerous tumors.A PET scan was then arranged. This revealed that the cancer had spread to other areas as well: in the right pelvic lymph nodes and the peritoneum.The gynacological oncologist at the Mercy has informed me that "this is not a situation where this sarcoma can be cured".

So what is it exactly?
Leiomyosarcoma (LMS) otherwise known as The Dragon.
Standard treatments recommended to me involve chemotherapy.

What next?
A referral to Peter Mac to consider entry into a Clinical trial: The Picasso III trial. I intend to sign up for this and treatment will begin in July - probably week 3.

LOVE YOUR LIFE! Georgia