Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I found a lump in my left leg in August of last year but I just thought my muscles were knotted up. Plus I didn't have time to worry about it. My husband was gearing up for a deployment to Iraq and I was getting ready to move to Missouri so that I could be near family. I started exercising with a trainer to try to lose weight. All of a sudden the lump was very large and it seemed to come out of no where. I had an MRI done and finally got to Dr. Rosenthal at Menorah Medical Center in Overland Park, KS. He removed it and did an amazing job with the surgery. That was on Feb. 25, 2008. I am able to walk without help now, thank goodness. A week later he informed us what it was and my family and I started researching Alveolar Soft Part Sarcoma like mad. Some reports have really scared me, but it has been refreshing too. I like knowing what to expect.
Surprisingly my Oncologist, Dr. Mark Myron has seen this type of cancer before. I brought my research with me to our first appointment with him yesterday. He said that we would hold off on radiation or chemo until we found if there were any clinical trials I could participate in. He seems very competent and I am again thanking the Lord that I was able to find a good doctor. Tomorrow I get my brain MRI and bone scan, and Friday I get a CT scan.
The military has let my husband extend his leave for 30 days from Iraq and we are trying to get him transfered to Fort Leavenworth so that he can be with me through this. I don't know if we will be able to get the paperwork done in time, but I know that the Lord has a plan. It has been such a blessing to be near family and to have my husband here during all of this.
My biggest fear in my life has been cancer because I watched my favorite grandmother die a very painful death from leukemia. Now that I have it, I am more afraid of leaving my beautiful children, ages 3 and 1 behind without a mother's love. I am weighing my options and hoping that all of the rest of you will recover well from this challenge.

You have located a great resource. This website provides data from different perspectives and experiences. Keeping informed and being your own advocate is most important with determining the best treatment. If you have any questions, please let me/us know!

Sincerely,
Elaine
Unionville, PA

Dear Theresa,
I am so deeply sorry for your recent ASPS diagnosis, and my heart breaks for all that I know that you and your family are going through right now. I am so grateful that in the midst of your numbing shock and immense anguish and worry that you were able to find your way to our Web site, and that you have reached out to all of us. This Web site and its members are an invaluable source of researched and anecdotal information, strengthening support, and shared caring and encouragement for ASPS patients and their family members facing the challenges of fighting this extremely rare and little understood disease. You sound like an incredibly strong and resourceful young woman with wonderful family support, all of which is so very important in this difficult battle with this challenging cancer. I am so glad that you have found a good doctor who is very competent and knowledgeable about ASPS. I know that you must be extremely overwhelmed and emotionally and physically exhausted, so I won't burden you with addtional information right now, but please know that I am here to help in any way that I can, and feel free to contact me by e-mail if you or your family would like my phone number to talk in person. My most special thoughts and prayers will be with you tomorrow for a good outcome to your scans, and I will be prayerfully awaiting an update when your time and the situation allow. In the meantime, please take care dear Theresa, stay strong, and let the bright light of Hope lead you through the coming days.
Heart to heart with special caring thoughts and continued Hope,
Bonni Hess, mother of 25 year old ASPS patient Brittany

Hi Theresa,
Thank you so much for writing and sharing your story with us. I am so sorry you are having to go through this. And I am so glad that you have found this website. You will find lots of support here and you will find people who honestly understand what you are dealing with.
I, like you, found a bump in the muscle of my thigh and was told it was just a tight muscle. I eventually had it biopsied and had my muscle removed and did radiation and chemo. Much has happened since then and I would be glad to share more if you want. I, also like you, worry most about my two young children.
I live just north of you in Lincoln, NE and have found some great medical care here, just as you have there. You had mentioned a clinical trial. I had never done a clinical trial until now. I am involved in the ARQ 197 trial. I just started and do not have any scan results yet. However, if it is something you want to know more about, I would love to share more with you.
Mostly, I just wanted you to know that you are not alone. I sounds like your faith is strong. As you said, God always has a plan and God's blessings are always there. Please feel free to e-mail me. I would love to talk to you more as you go through this journey. Please know that you and your family are being prayed for and thought of.
Keep the faith.
Karen Imm

Blessings to you Theresa,

We'll add you to our regular prayers. This is a very helpful forum. Although this cancer is rare, there have been significant molecular advances into its biology and now promising medications in clinical trials.

Our 11 year old daughter had a pelvic ASPS successfully removed and we are now considering a course of neoadjuvant medication before pulmonary nodules are removed surgically.

Also do not hesitate to contact me offlist with any questions or shared experiences. My husband and I are both physicians, but not oncologists. We have tried to learn a lot to make the best choices for her. She is back in school and feeling great.

'F'