A little legless, but not so bad....

Hi folks,

I think I should check in with everyone. Yesterday, (Wednesday) I went in for my usual Day 8 Chemo. I had bloods done, the had my hair trimmed to number 1 at the hospital , as it is all falling out again anyway- wait for the new look!

Then went up to Chemotherapy Day Unit at 12pm. We waited a while and then a nurse came up and set she needed to take a blood sample to do an antibody match for a blood transfusion. I couldn't believe it as I was feeling fine. Apparently my heamoglobin (HB) had dropped since the previous week, and so my Dr had ordered the blood for me as a precaution due to the timing of the chemo. Usually, if HB is low, they delay chemo, but mine was not at dangerous levels: "89" is low, but not dangerous.

Chemo took until 5pm and then the transfusion of 1 litre (1 bag) took 2 hours. It was a long day- Sarah is a trooper and doing the hard yards helping me on Chemo days. She is the best!

So, I took Thursday off, but the weird thing is I felt worse as the day went on, my legs lost power- I call it feeling legless! So, I will take Friday off work as well, drink lots of water to get my blood pressure up a bit!

I took the Day 9 injection again today, so will wait for the possible aching in my bones in a day or so.....remember- this is a good thing!

I believe all is going very well. I am not on Pain medication anymore- this may be because of many reasons, 1 possibility is that the tumours are being attacked! We shall see.

I have a series of appointments coming up soon, but no chemo now till the new cycle- 3 starts on 13 June. Yey!

I have a CT scan to check the tumours on 8 June. On 13 June, I will see the Sarcoma Fellow and discuss the results.I am expecting to continue with Chemo and Cycle 3. We did not do a baseline just before this chemo treatment began. I know the tumours were growing fairly rapidly over March to May, so if things are neutral that will be a good result.

On 11 July, I am having my next Echocardiogram to check if my heart is on the improve or not. I will see the cardiologist on 13 July to get the verdict.

By the way, this time round I am being careful with Dexamethasone- no crazy highs to speak of....

Just one last thing: To Lucy who I believe was beautifully cared for and had a rich and loving life- a beautiful soul - may you rest in peace!

Love Your Life,
Georgia

The new look

The new look, the new hair piece....at Conservatory near Peter mac

CYCLE 1 - All is well

I have reflected on the last month- lots of ups and downs on the blog!

Cycle 1 on GEMTAX has been OK. My old band - the "side-effects" have struck a chord  again to say a lovely hello- remember me? a little earlier than expected, I am surprised to say.

I have the obligatory sore mouth and gums and have some minor trouble swallowing food- so I have started taking Somac which is helping.

I experienced some severe pain from the injection, which for some reason I had forgotten about from last year's chemo. The injection came Day 10 in the cycle, the pain came Day 12, 13 and 14, so I had to go hard on some Oxynorm (fondly known as Oxymoron tablets!!!!), as I persisted in going to work at the time.....

The pain is a "good thing". No-really, it's a sign that the bone marrow is being produced, which in turn means that more white blood cells are being produced, which means my immune system is being more protected at my most vulnerable time during the Chemo cycle, which means I am less likely to get sick, or get a high temperature or fever and possibly end up in hospital.... and we don't want that!

The tongue is a bit crazy white and sore and yes I have to mouth wash very regularly to help with swollen gums and to avoid ulcers. I also have this interesting thing happening to my heels- huge deep big-mumma blisters developed Day 16, so I have taken to lovely warm foot salt -soaks to help ease the pressure there.

I won't say too much about my digestive system at this stage- suffice to say I am always planning ahead and trying to make sure the situation is not too hard to manage wherever I may be. I keep hearing my Research Nurse from 2011 saying "drink Georgia, drink lots of water, before, during and after chemo! Water, water, water!"  I feel it was such good training, that I know what to do for myself this time around.

So, Cycle 1 ends in 3 days- Tuesday, so all is well. I have pretty much stayed at work through Cycle 1, it has been Ok, for the most.

Cycle 2 begins in 4 days- Wednesday 23 May  (Day 1)- where I have bloods to check white bloods cell levels and other things..., then meet with the Sarcoma Doctor, then have Chemotherapy: Gemcitabine.  the After that, the whole 21 days of thing repeats as per the first Cycle. I will also see a psych at Peter Mac on Thursday (Day 2), so I can continue to ear-bash someone apart from my dearest loved ones and friends. Some things I don't say on the blog, but I may get there yet!

I am in good spirits and doing well.

Love your life,
Georgia

WIRED UP ON DEXAMETHASONE- YEEHAH!

Hello Team Georgia - wow, great to catch up- what a day!

So, I have been working this week as per normal and had a hypo kind of do everything, run around a lot few days- did not get puffed out once - how about that! Only thing is, my abdomen did protest a little on Wednesday, so I sat from time to time!

Anyway, long story short, I forgot to take pre-chemo meds for Thursday's Chemo, and when I got home , I tried to make up for it and took too many.So I turn up for GEMTAX today and they gave me more with my chemo so I am still on double-time right now with no-one to talk to, all by myself, I'm home about 8 just me and my FOXTEL, ain't misbehaving etc..........

So, Chemo did go well today, beloved sister 2 came with and special cousin S popped in for a treat and I chatted all through my day!!!!!!!!!!!!!

I had bloods done at 9am- only 2 attempts - pretty good compared to last week.

I saw a psych - yes me- I know first time ever even though I am Psych trained myself- pretty awesome step in life  -    so why not take a risk now?  -     it won't kill me   -      (too much? .... OK....try to calm down.......)
I don't think the psychologist got a chance to speak - no surprises there!

Then I had two lots of chemo: Gemcitabine 1520mg and then Docetaxel 170mg

Sent home with strict instructions on :
1. How to give myself and Injection of Pegfilgrastim  (Neulasta Ang) and
2. To not touch DEXAMETHASONE TONIGHT!!!!!!!!!!!

Taking day off tomorrow again, this time to see the cardiologist and rest due the chemo today,

Love your life, but don't take too many drugs, 
Georgia

Some progress on Picasso III Trial and Information about ULMS

This was the trial I participated in in 2011:

Copied from Ziopharm Press Reslease press release May 3, 2012
http://www.marketwatch.com/story/ziopharm-reports-first-quarter-financial-results-2012-05-03


Palifosfamide (ZIO-201), a novel DNA-targeted cancer treatment that
bypasses drug resistance mediated by ALDH (aldehyde dehydrogenase), an
enzyme associated with cancer stem cells, and has a favorable toxicity
profile. Intravenous palifosfamide is currently being studied in a
randomized, double-blinded, placebo-controlled Phase 3 trial (PICASSO
3) for the treatment of front-line metastatic soft tissue sarcoma.

* PICASSO phase 3 enrollment is nearly completed
* Results of the PICASSO 3 study expected in the second half of 2012
* development of a oral capsule form of palifosfamide with a clinical
study plan is underway



This is  infomation on ULMS:
Standard treatments and Prognosis for Stages. (Only for the very brave of heart!)
www.curesarcoma.org/index.php/patient_resources/subtypes/uterine_leiomyosarcoma


Patient Resources
Sarcoma Subtype Information
Uterine Leiomyosarcoma
Uterine leiomyosarcoma (LMS) is a smooth muscle tumor that arises from the muscular part of the uterus. Leiomyoma, or fibroid, is a very common benign smooth muscle tumor of the uterus. A LMS may develop in approximately one to five out of every 1,000 women with fibroids. Uterine LMS appears to behave in a slightly different way from LMS in other organs.

Epidemiology
Uterine LMS is a rare tumor. Only about 6 out of one million women will be diagnosed with this rare cancer in the U.S. annually. The average age of diagnosis is 51 years. Uterine LMS is most often discovered by chance when a woman has a hysterectomy performed for fibroids. It is difficult to accurately diagnose LMS before surgery because most women with LMS will have multiple fibroids making it difficult to know which ones should be biopsied. Magnetic resonance imaging (MRI) might offer some information but is not entirely accurate. A special MRI exam in combination with a blood test for serum lactic dehydrogenase (LDH) level has been reported to be accurate in diagnosing uterine LMS. MRI-guided biopsy of suspected LMS has also been reported. These things appear to be promising approaches. However, they should not be routinely performed until we can further test their value.

Surgery is the primary therapy for patients when they are first diagnosed with uterine LMS. The cancer has not spread beyond the body of the uterus (stage I and II) in approximately 70-75% of patients. This tumor tends to be aggressive. The 5-year survival rate is only 50% with patients whose tumor is confined to the uterus. The 5-year survival rate for most other gynecologic cancers can be more than 90% if the tumor has not spread outside the organ of origin. Women with uterine LMS that has spread beyond the uterus and cervix have an extremely poor prognosis.

Various characteristics of uterine LMS have been suggested to affect the prognosis of a patient with this cancer. Features such as tumor size, DNA content, hormone receptor status, cellular division (i.e. mitotic rate), and tumor grade have all been reported by different investigators to be related to prognosis. However, none of these things can reliably predict what will happen. In addition, none of these features should influence a physician’s treatment recommendations.

Despite complete surgical removal and best available treatments, approximately 70% of patients will develop a recurrence within an average of 8 to 16 months after the initial diagnosis. Recurrent uterine LMS is difficult to manage. Options include surgery, chemotherapy, and radiation therapy.

Clinical Features
There are no reliable methods to diagnose a uterine LMS before surgery. It is almost always found by chance at the time of a hysterectomy for what was thought to be benign fibroids. There are no specific signs or symptoms, especially in young women. Rapidly changing, or enlarging, fibroids in premenopausal women should be investigated. The vast majority of the time these are not malignant fibroids that are growing in a menopausal woman are concerning and should always be surgical removed.

This cancer can grow to be very large and often recur. Nearly 70% of women with stage I and II uterine LMS will develop a recurrence. Tumor size and mitotic rate do not appear to be associated with prognosis unlike LMS from other sites. Uterine LMS tends to metastasize to the liver and lung frequently. Surgical removal, if possible, is the best treatment. Chemotherapy and radiation therapy have limited roles in the treatment of these tumors.

Treatment and Follow-up for Local Disease (stages I and II)
Surgery is the primary therapy. All patients with stage I and II LMS should have a total abdominal hysterectomy (TAH) performed. Removal of both fallopian tubes and ovaries (known as a bilateral salpingo-oophorectomy or BSO) is recommended for women who are menopausal or have metastatic disease. The value of performing a BSO in younger women with normal appearing ovaries is unclear. Microscopic metastases to the ovary occur in only 3% of women with uterine LMS. Many physicians have recommended BSO in all women with uterine LMS because of the fear that these tumors are stimulated by hormone (estrogen and progesterone) production from the ovaries. It is also feared that the chances of the cancer coming back (known as recurrence) are worse if the ovaries are not removed. This is a valid theoretical concern. However, there was no difference in recurrence or survival in a recent small report comparing women with uterine LMS who had a BSO and those who did not have a BSO. In addition, the receptors for estrogen and progesterone are found less often in LMS than in fibroids.

Removal of the ovaries will make you menopausal immediately. Menopause, especially one that is induced so quickly, can create significant symptoms, such as hot flashes and mood changes. These can often be controlled somewhat with medications. Menopause also increases the risk of bone loss or osteoporosis, which makes the bones weak. This makes it easier for bones to break or fracture. Complications from osteoporosis-related fractures are one of the leading causes of sickness and death in menopausal women. All of this must be carefully considered when deciding whether to have your ovaries removed. It is a very difficult and personal decision. The information that we have to help guide us is based on experiences with very small numbers of women.

It has also been controversial as to whether “staging” procedures, in which lymph nodes are assessed, are necessary. The rate of lymph node involvement is less than 3%. It is not beneficial to perform another surgical procedure to sample lymph nodes in patients whose diagnosis has been confirmed after hysterectomy and in whom there was no obvious evidence of cancer spread outside the uterus. Such procedures have associated risks and will not change the management of this cancer.

Currently, there has been no proven overall benefit of using any further chemotherapy or radiation therapy after complete surgical removal of all visible uterine LMS. Chemotherapy and/or radiation therapy given after complete surgical removal of all tumor is known as “adjuvant” therapy. Adjuvant radiation to the pelvis has been shown to decrease the chance that the cancer will come back in the pelvis. It does not change the chance of the cancer returning in other areas, such as the lung or liver; this happens nearly 80% of the time when a recurrence develops. Pelvic radiation to all patients who have all the cancer removed should not be routinely offered. However, some physicians and patients do elect to try radiation therapy to reduce the chance that the tumor returns in the pelvis. This is done with an understanding that the chances of surviving are no different than for those who do not get radiation therapy.

The use of adjuvant chemotherapy has also not yet been proven beneficial. The largest trial of adjuvant chemotherapy in patients with all types of uterine sarcomas, using one of the most active drugs, doxorubicin, showed the chances of recurrence and survival were the same in patients who either received or did not receive doxorubicin. Currently, the use of routine adjuvant chemotherapy is not recommended, except in the context of a clinical trial. Recently, a combination of two other drugs, gemcitabine and docetaxel, produced a dramatic response in patients with recurrent or advanced uterine LMS. This combination is being investigated in the adjuvant setting. Patients on this trial are given gemcitabine and docetaxel in the adjuvant setting to hopefully decrease the possibility of recurrence and improve the chances of survival.

Patients should be followed very closely after surgery. Many physicians will recommend that patients are examined every 3 months for the first 3 years after diagnosis, every 6 months for 2 years after that, and then annually. A computed tomography (CT) scan is often done every 6 months to one year. It might be useful to have a CT scan done soon after surgery or completion of therapy in order to have a starting point for future comparisons. Any unusual symptoms should be evaluated by a physician.
Surgery is the primary therapy. All patients with stage I and II LMS should have a total abdominal hysterectomy (TAH) performed. Removal of both fallopian tubes and ovaries (known as a bilateral salpingo-oophorectomy or BSO) is recommended for women who are menopausal or have metastatic disease. The value of performing a BSO in younger women with normal app

Treatment and Follow-up for Metastatic (stages III and IV) (ME- Stage IV) and/or Recurrent Disease
The treatment of patients with metastatic and/or recurrent disease needs to be determined on case-to-case basis. The best possible treatment is surgery to completely remove any and all tumor. However, this is not always possible. Radiation therapy to try and shrink the tumors and help improve the chances of surgical removal may be considered but is not always successful. Responses to radiation therapy and chemotherapy alone are limited. The most active drugs in the past, doxorubicin and ifosfamide, provided a 30% response rate when used in combination. A recent trial using the combination of gemcitabine and docetaxel found a 55% response in patients with advanced, primary, or recurrent and surgically unresectable uterine LMS. Other drugs, such as vincristine, cyclophosphamide, dacarbazine, topotecan, paclitaxel, etoposide, and hydroxyurea have been used, either alone or in combinations with disappointing results. In addition, the average time until the tumor progresses or recurs after using any of these drugs, including the most active ones, is less than 1 year.

Follow-up is based on case-to-case basis and should be discussed with your physician.

Targeted Therapies
There are no known effective targeted therapies for uterine LMS. Clinical trials are investigating new treatments. All patients with this disease should strongly consider participating in clinical trials.

Uterine LMS is a rare cancer that requires specialized care. All patients should seek the opinion of physicians who are trained to treat this disease, such as gynecologic oncologists or specialized surgical oncologists.

From The Sarcoma Foundation of America



You have to, got to, absolutely need to
Love Your Life,
Georgia

We're off the blocks

New treatment has begun on Wednesday 2 May: GEMTAX
I went in for a consultation with the doctors, to hear the plans for the next treatment. It was set to be initiated on May 17. By the way, the Sarcoma Fellow did say the Pazopanib is not off the table forever. If my heart improves over time, it may be an option in the future. After my medical exam , the doctor felt that another strategy was required. I then had bloods done and no-one could get a line in for an IV drip. Four puncture wounds later, we just stuck to doing bloods.

Had a break for lunch at Treasury Place Cafe - very nice, then went into hospital- literally, signed in , got into bed, then waited to get Chemotherapy. Apparently, this was the way to get me started as the CDU (Chemotherapy Day Unit) was booked out completely. The actual chemo took a while to begin. Again, trouble getting a line in - 6 puncture wounds for the day! It was quite painful once things got started, they had to stop the drip line, then slow it right down for me-a complete surprise as I experience no pain with chemo last year.

The new chemotherapy is one that is well known in the United States it is called GEMTAX., and is the first standard treatment applied for Leiomyosarcoma cases.It usually requires payment when given to patients in Australia, but yet again, Peter mac is covering the costs for me. This includes the post-chemo injections that I will have to have to avoid potential white blood cell decline around the day 7, 8, 9, 10 mark during each chemo cycle.

What is GEMTAX?
It is a combination treatment of two types of chemotherapy drugs called Gemcitabine and Paclitaxel.
My regime will be to have 6 cycles of GEMTAX. Each cycle lasts for 3 weeks. My treatment will be set for Day 1 and day 8 treatment every cycle, bloods to be done on Day 8 to check if chemo is safe to go ahead that day. Day 9 will be the day for the injection to help with white blood cells.
This cycle, they are having difficulty squeezing me in so I am going in Day 9 (Thursday 10 May for chemo instead of day 8). I also have the Cardiologist check up on Friday 11 May to see how I have responded to the Coversyl heart medication.

There will be side-effects , but so far just some fatigue initially, so I took an extra day off work. I expect some similar effects to last year, but one extra one is hypersensitivity in extremities - I have to avoid very cold and very hot fingers and toes as a way to watch for this one. I will have hair loss again, shame I went to work without the wig oh well, vanity, vanity all is vanity!!!!!
Cheers,
Georgia