Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I am currently fighting this ugly disease and first I want y'all to know how I found out I had it. I was jogging in the yard when I felt a pinch on my right knee area. Right away I went to see a doctor to my right knee/thigh area which was swollen with a lump, I was than taken for a MRI and they realized I had ASPS at the time they realized it had spread to both my lungs! I was devasted seeing I thought I was giving a death sentence! I have been on (votrient) from April 2011 till august 2012 right before I had the tumor on my right femur removed! On August 15 2012 at Brigham and woman's hospital dr John ready performed surgery on my right leg and successfully removed my tumor on my right leg Which was 20 cm big! Although they removed the tumor I still had the metts in my lungs! To fast forward a lil bit in November 2013 I was experiencing some major headaches and when I went to the ER they discovered it spread to my brain. The next day I was shipped to Boston and there again at BWH they (DR Marc Johnson) neuro surgeon performed surgery and successfully removed 2 tumors from the brain! I've since had full brain radiation and am back on the votrient! To sum it up I've been on multiple clinical trials and none had worked! I am a very positive person and have the best wife ever to help me fight this battle. I'm excited that I found this page to get feed back on how to continue fighting this disease!!! I am currently on votrient 200mg and rapamune 2mg it's made me feel weak .. I throw up every morning lost 20 pounds in 2wks I stopped taking them for a couple of days now I took 2 last night because I'm scared of getting worst... I don't know what to be aware of any info to help me prolong this disease please help.

Sincerely
Engels Suriel

Hi Engels Suriel

My heart goes out to you and your family. Your positive attitude and open mind will get you far in this roller coaster journey

My name is Debbie and my son Joshua was diagnosed with ASPS in 2012 also. His primary tumor was also on his right leg on the upper front. His tumor was 16.5 cm. After removal of his primary tumor in August 2012 he found out he had tumors in his lungs. He and his wife have made two trips to Germany and have had over 140 tumors removed. To date his brain scan has shown NO tumors.

Did you have radiation performed on your primary leg tumor? What other clinical trials have you been a part of?
I am glad to meet you but so sorry it's under these circumstances .

Sincerely ,
Debbie

I've taken this other drug called crozapanib or something of that nature but it didn't help! Before I had the tumor on my leg removed they gave me 25 radiation treatments to my leg so they can shrink the tumor before surgery but it never shrunk! They performed a full knee replacement and I now have an Olympic looking torch on my leg lol! Sorry to laugh but I find humor and happiness to b a cure for this also! I am also glad to communicate with you Debbie about this matter I hope your son is doing better and winning this battle!!!!

Engels Suriel

Please don't appologize for the joke. Laughter is the best medicine some days!
The tumor encased your knee cap and it had to be removed to clear the cancer? The knees can be replaced, huh?
How is the tumor area on the leg looking according to the doctor or doctors? Its clear of cancer?
How many tumors are in the lungs?

Write when you can
Keep up the great smile and jokes!

Debbie

ps
Engels Suriel

Good job on taking care of the brain tumors.

In reference to Josh. Thankyou for your well wishes

We are ALL winning one day at a time

Love
Debbie

Hi there, welcome to the board. I am Ivan's mom and you can read his topic in the Personal Stories under his name. He was Dx in Nov.2003.
We are glad that you feel some comfort from finding our very friendly community, there are no other people in the world that could really understand what are you going trough with this damn sarcoma.
I have few questions for you:
- when where you diagnosed (I assume it was the beginning of 2011, right?);
- what is the situation with the lungs now - how multiple are the lung mets, sizes?
- what size were the brain mets that you had successfully resected, are you getting the follow up brain MRI now?
I am looking forward to getting the answers so we could better understand your situation.

Dear Engels,
Like the others who have posted, I am very sorry for your ASPS diagnosis and all that you have been through in your courageous battle with this extremely rare and very challenging disease thus far, but I am grateful that you found your way to our Web site and that you reached out to share your information and request input/advice from our ASPS Community members. This Discussion Board is an invaluable source of shared researched and anecdotal treatment information as well as strengthening support and encouragement which will Hopefully be helpful to you. I encourage you to actively participate on the Board when your time and the situation allow. Shared treatment information and knowledge are one of our strongest weapons in fighting this little known and poorly understood disease. It sounds like you have taken a very pro-active approach with your treatment and that you are receiving very good oncology care and treatment. I am sorry that your crozapanib? (was it Crizotinib?) treatment was unsuccessful in stabilizing the progression of your disease, but am very Hopeful that the Votrient (Pazopanib) will be more effective. Regarding the daily vomiting that you are suffering with the Votrient, we have found that intravenous re-hydration every two weeks has been very successful in preventing the severe vomiting that our daughter Brittany was experiencing as a side effect of her Cediranib treatment. Cediranib is a tyrosine kinase inhibitor (TKI) in the same class of targeted VEGF-R anti-angiogenic drugs as Votrient, and both drugs have similar negative side effects including nausea, vomiting, chronic diarrhea, muscle weakness, fatigue, mouth sensitivity, hand foot sydrome and others. Brittany, who was diagnosed with ASPS at age 19 twelve and a half years ago in July 2001 and has had 23 surgeries/ablations/radiosurgeries for tumors in her thigh, lungs, liver, brain, tibia, breast, spine, and abdomen has been on a Cediranib Clinical Trial in Edmonton, Alberta since April 2009 and has thankfully thus far had 57 months of stable disease with no new tumors and dramatic shrinkage/disappearance of all of her numerous and widely disseminated tumors. If you are interested you can read about Brittany's Cediranib treatment experience under her name in the Cediranib topic on the Discussion Board. Given the metastatic nature of this insidious and unpredictable disease, I Hope that you are receiving appropriate regular scans which are critically important to finding and treating any new mets at their smallest most treatable size. Chest CT scans with contrast should be done every 3-6 months, abdominal/pelvic CT scans with contrast or MRI's with contrast should be done every 3-6 months, with your history of brain mets it is essential that you have a brain MRI every 3 months, and a full body bone scan should be done once a year. Please know that you are not alone in your battle Engels, and that those of us on this Board are here to try to help in any way that we can with shared information based on our experience and research. Please take care and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of 31 year old Brittany diagnosed at age 19 in July 2001

Hello Enhles
Welcome to the forums an you are going to be armed now with things to help you an also people that are also going thru this diagnosis in one form or another an are no longer alone! It helps a lot to know for myself that the family ASPS is here an i only need to post an i an getting comfort and help!

I am at the moment healing an not posting a lot but i saw your post an it reminded me os myself...

Please read the survivors area! There is no reason even with what you are going thru that your name will not be there also in a few years!
ASPS is very different than other sarcomas an is as individual as the people it affects!

I am so happy you have an amazing wife! It helps!!!! Love does heal... My husband is also amazing... we are blessed <3

Hugs to you both!

Thanks to all for your thoughts and support I am thrilled to be on this forum! When I was first dx I was thinking about something like this and finally I found y'all mi familia in this battle, that we are gonna send packing soon lol, but anywho I will be posting as much as I can and look forward to having wonderful feedback from my newly founded asps community god bless to all and my motto is blessed never stressed!!!!

Dear Olga,

I was first diagnose in April of 2011 but I was first alerted in February of that year than after further test than I was giving my dx! I'm not sure exactly how many metts they found in my lungs but I was told it was a lot of them and one close to my heart! In November 2013 I was experiencing major headaches and I went to the ER that's when they found three tumors in my brain 2 in the frontal part of my head which were successfully resected at BWH in Boston the other one, and all were the size of a quarter, the one in the back of my head could not be removed by surgery because of the danger to my speech and memory but they removed it with radiation I have not yet gotten MRI to see the results on my Brian but I am confident they won't find any lesions there any more with the power of the almighty!!!

What are the things I should be doing and what are things I should look out for???

Engels Suriel

Hi again. Have you been able to keep the records of your scans? The written reports?
Since 2011 have you had bone scans , lung scans and have the doctors been looking at your knee/ leg area by the way of scans?
I am sure Olga can visit with you more in depth about the tumors in your brain when she is able

Keep the faith Engels!
Love
Debbie

Ps I am curious to how big the tumor is in your left lung near your heart ?

Dear Engels,
As you can see from the responses that you have received to your post there is an abundance of shared information, special caring, and support available to you on this Board. Thank you for the additional information on your diagnosis and treatment. Was the radiation that you received for the unresectable met in the back of your head Gamma Knife or Whole Brain Radiation, are you taking steroids ( Decadron or Prednisone) to help control any post radiation swelling, and how often are you scheduled for brain MRI's? As I mentioned in my previous post, it is critcally important that you be followed with brain MRI's every three months once you have a history of brain mets because ASPS mets in the brain can develop and grow faster than mets in other parts of your body, and it is essential to find them at the smallest possible size to ensure the best outcome to surgery if they are resectable, or radiosurgery like Gamma Knife if they are located in an area of the brain where they are not resectable. You do not want to wait until the tumor(s) become symptomatic as is advocated by some naiive/irresponsible oncologists because then sometimes it is too late for a successful outcome to treatment. Unfortunately, some oncologists resist scheduling the brain MRI's every 3 months for patients with a history of brain mets saying that every 5-6 months is often enough, but you need to demand the 3 month schedule if this is the case as one former ASPS patient who was told having a brain MRI every 5 months is adequate, tragically lost his courageous battle because during the 5 month interval between scans, he developed a brain met which was too large for any kind of treatment when it was finally diagnosed in the 5 month scan. I don't want to frighten you with this information Engels, but just want to convery to you and anyone else on this Board reading this the importance of vigilant scanning especially with brain mets. Something many/most of us on this Board have learned is that doctors don't always know everything or make the best treatment recommendations for this very rare and poorly understood disease, and it is the responsibility of the patients and family members to be as well informed and as pro-active and assertive as possible. Take care Engels, have a good and relaxing weekend, and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

The metts found in my head were not treated with gamma knife even tho it was the initial plan. The reason they did full brain radiation was because they found thru a deeper scan that gamma knife was not gonna target all the metts in my brain! As for the one near my heart is the biggest one in the lung area but not enough to concern the oncologist that treats me!

Dear Bonnie I want to thank you for the helpful feed back I will def b requesting brain scans every three months just to b on the safe side and nothing scares me so feel free to tell me anything I have god on my side and he won't allow me to b scared of anything! My wife makes sure I stay on top of all things so I know I won't miss much with her researching things! I have not had a bone scan in about two years so I will b requesting one this week. Besides what I'm taking now is there anything else that I should eat or drink to help my condition?

I want to know if there's anything I'm doing wrong? Am I over looking anything? If the chemo I am in is a sure thing? Which one has a bigger success rate on pt's with ASPS! What questions should I be asking the oncologists.. I am still amazed about how I found ya'll I literally brag to everyone that I found you guys .. The amount of comfort that I get everytime I log on here it's unvelievable.. BTW my email for anyone that would like it is engelsbeensaved@yahoo.com and I have a FB Engels Suriel.. Blessing to everyone