Cure Alveolar Soft Part Sarcoma International (iCureASPS)

In 2008, during my husband's second deployment to Iraq I had been working out with a personal trainer. My leg kept cramping really hard. At first it was just when I would do squats. Soon it began to cramp even when I would just use the treadmill. My trainer suggested I see a doctor. I scheduled the appointment and went to my last training session. In that session I did yoga for the first and last time. My leg cramped so hard that a bump appeared. I had an MRI and took the images home with me. Every image I found that was similar online was cancerous. My doctor recommended resection with good margins as the biopsy. My husband was brought home. For the surgery to take care of the kids (ages 4 and 2).

The tumor was 5x7 cm. the doctor was able to get a good margin around most of it, except near the femur bone. There was only 1 mm margin there. He said it was stage 4 because of the size. My doctor conferred with Dr. Lor Randall, who is now my oncologist here in Utah. (He works at Huntsman and many ASPS patients come to him from US and Canada. He was part of the recent study that came out about lactate and ASPS.) I was in hospital for 5 days and needed two blood transfusions from blood loss. The doctor said that my tumor had blood flow to it but not coming out of it. My mom checked up on the pathology reports and talked to the doctor. She and my dad came over to my house with a stack of papers. She told me It was cancer and what type. She had printed everything she could find from this website and others.

I scheduled more scans and was relieved to hear there was no sign of spreading. During my second CT scan we learned I was severely allergic to the dye. I began radiation about 3 months after the tumor was removed. I did as many regular follow ups as I could afford once we were off military insurance.

My main regret about radiation is that I have keloid scarring so the radiation deeply scarred my leg. It was hard to walk normal for a long time. That being said, I have always been grateful it hadn't spread. The cancer led me to get my degree. I graduated April 2014.

Good news for you Theresa!

Your testimony brings me a great relieves- even mine when diagnosed was only stage II.
The radiation could help the prevention of reoccurence, so don't take it as a bad decision.
Did the doctor gave you any treatment besides resection and radiation?

Hi Teresa,

this is very encouraging for all of us here that read this forum.

can I ask you to write little bit more regarding your story if it is no problem for you. You mention Stage IV? Did you have mets that were successfully treated?

Sorry I didn't post more detail. I have updated it. I have been so nervous about reaching out. I feel like I had to go through the experience in silence. My husband has never talked about it with me. He shuts down when things get rough.

Theresa, thank you for reaching out, it is really helpful by so many reasons. My husband too could not really speak about what is happening to our son for the first 10 years of our sarcoma journey:) (my son was Dx in Nov. 2003).
Probably your dr incorrectly staged you, it should be Stage 3 regardless of the size, IMHO.

I thought more Stage 3. I just didn't get a consensus. Is it only stage 4 if it has spread? Did your husband eventually talk to you about it?

californiaresa wrote:I thought more Stage 3. I just didn't get a consensus. Is it only stage 4 if it has spread? Did your husband eventual talk to you about it?

Hello again Teresa

Thank you for sharing valuable information so we can all begin to understand ASPS and it quirks.
Your scans have been constant since 2008.. ie leg follow up and lungs, lower extended lungs ?

What's your degree?

Write when able or PM anytime.
Glad to have you on board.

Love
Debbie

Hello Debbie,

My scans have been consistently clear of ASPS. I had endometriosis travel to my scar site in my leg and some kind of embolism type thing in my left lower lung. There haven't been any other developments and I was told right before graduation last year that I was officially in remission.

My degree is Family and Consumer Science Education (a.k.a. Home Economics teacher). I specialize in child development, Food science, and most especially sewing. I am a great seamstress and sewing is very therapeutic. I taught my first year in a Charter school during which I learned a new baby would be joining our family. She is almost 5 months old now and I am happily with her all day.

Beautiful 5 month old is priceless and precious
My husband and I were blessed with a new grand daughter on October 30. I am stoked !!

The babee is such a social little person .
Smiling and giggling ,but rather fearful of new / different visual situations. Seeing things definently for the first time .

SCAREY to them sometimes . Beards were our kids buttons

Your were called A home ec ( economics ) teacher in my day Very important for female AND males as we were wanting both genders to be on board.

The edomitreosis was the cause of the keloid or in addition to and was biopsied to determine that ?

Love
Debbie
Wish I had the time to sew. You are so right
good for the soul!

Pss is your birth given name "Teresa or Theresa"?

thanks Teresa for updating your story. I'm sure you had a tough period.

it is very interesting regarding the blood flow that they noticed coming in but not out, I've been asking a lot of regarding this to the oncologist that I saw but none could give me any details on this unfortunately.

Probably like you I'm having very bad reaction to the dye of the CT. Last one I did without contrast. How did you deal with this, did they changed something or suggested anything to you?

Debbie,
My given name is Theresa. I was named after my Grandma who recently died from Alzheimer and recurring Breast cancer. She was an incredible woman who helped start a camp in Missouri for children who are or have struggled with cancer. It is called Camp Quality.

The endometriosis is separate from the keloid scarring. Endometriosis can travel to surgical locations if it is bad enough. There is an 8 year has between my two daughters. I was afraid we wouldn't have any more so I am thrilled about our newest addition!

Martin,

The plan for the CT scans has been to pre-treat me for the allergic reaction. I will look it up because it has been a while. If they needed to do a scan with dye they would pretreat me with prednisone 24 hours before the scan to prevent the reaction. It did work effectively.

I thought the blood flow thing was interesting to and I wonder if that is why it didn't spread.

Theresa

Thanks for the response
Found this pharmacy link on all you want to know about scan contrasts and options

http://www.uspharmacist.com/content/d/i ... 0Treatment

"As mentioned above, the purpose of using these contrast agents is for diagnosis, but like any medical procedure in any radiological study, the right dose or volume of contrast media needs to be determined prior to a procedure. The total volume or dose is dependent upon several factors: iodine concentration of the contrast media; type of injectable contrast media (ionic or nonionic); patient’s body weight, anatomical structures or regions; speed of the injection; and age or disease process that could increase the risk of an adverse reaction. The treatment of an acute reaction to contrast media is no different from any other anaphylactic reaction. Treatment may include injectable epinephrine and antihistamines, as well as the use of IV fluids for low blood pressure and shock.7
Contrast media reactions can be prevented by a test dose for the intended contrast or the use of an alternative; the use of nonionic versus ionic media if applicable; and the use of certain medicines prior to the administration of contrast media such as prednisone 50 mg orally taken at 13, 7, and 1 hour prior to procedure, or diphenhydramine (Benadryl) 50 mg orally, IV or intramuscularly, 1 hour prior to receiving radiocontrast media.7"

I was wondering about the transfusions and their effect on the lack of spreads as well. Was the tumor in a main artery?

Love
Debbie

Hey all

" The immune system and cancer"

In choosing your treatment prior to scans, review the risks of using steroids.

http://www.cancerresearchuk.org/about-c ... and-cancer

Benadryl is being used in animals with mast cell type cancers with good results in anti inflammatory effects .

http://www.dogcancerblog.com/blog/why-b ... ll-tumors/

Mast cell
noun
noun: mast cell; plural noun: mast cells
a cell filled with basophil granules, found in numbers in connective tissue and releasing histamine and other substances during inflammatory and allergic reactions.


http://medical-dictionary.thefreedictio ... ll+sarcoma
alveolar soft part sarcoma one with a reticulated fibrous stroma enclosing groups of sarcoma cells enclosed in alveoli walled with connective tissue.

Debbie