Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi there
First of all hey everyone

My name is Anders Giebel, im 29 and live in Denmark with my beautifull girlfriend and our two wonderfull daughters.
I work as a multi media designer. In my spare time i run when i can, and in the evenings when the kids are sleeping, i often find myself playing MMOPG games on my computer. I love lord of the rings Online -
Guess im a bit of a nerd... i love the Lord of the Rings and have read all the books there are about it.

I was diagnosed with ASPS in early 2007, after a series of false diagnoses. At first i noticed a lumb in my left abb muscle and visited my doctor. he said it was probably a lipoma and actually tried to remove it himself... well he romved something alright, but it was fat and healthy tissue. He then send in the tissue, and i was told eveything was ok... no cancer.

I wasnt pleased with his work, and didnt rally feel anything was removed, so i went to the doktor again, and was then set up for removal at the hospital some weeks later. The doktor who was supposed to remove it, didnt take long to find out something was really wrong here. He said it might be hernia, so i should go and get a CT scan. The CT scan showed no hernia but a lumb. Next i got my MRI scan, and the pictures where send to a danish sarcoma treatmen center. They had a look at it, and substracted a sample... Well it turned out as ASPS, an, as i where told, very rare type of sacoma cancer. Not the best new as you all can relate to. The obnly positive thing i remember about it, was when the doktor said it was slow growing... i figured slow cancer is better than fast.

My tumor was 5-6CM and was removed in april 2007 with really good results. i was back at work within a month and able to do everything besides doing situps.
A year passed with regular lung scans. They where keeping an eye on some spot (without telling me for a year), and when they grew 1-2mm, they wanted to get a sample. This ofc turned out to be mets... 4 in the left lung and 1 in the right with sizes between 5 and 16mm. After allmost a year, where i was basicly told i was ok (not even a PET scan found the mets), this was a bit of a blow.

I then startet chemo therapy in august 2008 and had 8 treatments (sorry cant remember name of the chemo, but gonna look it up). I got the max dose for that kind og chemo. They said it can damage the heart, so i would never be able to get that type of chemo again, witch bugged me outbecaus it was actually working. Well the chemo seemed to work, so the mets all startet to shrink and are now stable since my last dose on dec 27. Mets are now between 3 and 9mm. They actually found a big spot on my liver when i was done with chemo, but that turned out to be false alarm after some CT and ultrasound scans.

The other day my doktor from the sarcoma center called me, and said he had send my scans to doktor Rolle in germany, and that Rolle had accepted me as his patient. He plans to first take care of my right lung with the one met, and then some weeks later, the other lung. Right now im just waiting for the danish health assosiation to give me green light. Hopefully ill get to Dresden withing a month or two.

I probably did a bunch og typos... sorry for that Im sitting here with my 10" netbook... not easy with my big hands hehe.

EDIT: The Chemo i was given is called Doxorubicin

Anders, hi - welcome to the board, we hope that yo find an information that we collected here helpful in your ASPS journey or at least you won't feel lonely with this rare disease. I am pleased to hear that Danish doctors are reffering their patients to see Dr.Rolle - he is the most experienced lung surgeon in ASPS lung mets resection in the world, I guess you have already found the topic in the Lung metastases area of this board that is about having surgery by Dr.Rolle - if you need more info, just ask there in that thread or send me direct message - asking on the board is preferable as the same Q may be of interest for other people and they get to read an answer. I am very interested to know the result of the pathology study of your lung mets when they are resected - to find out what chemo did to them, if there is necrotic tissue there, our patients rarely have chemotherapy as it is assumed that ASPS is not chemosensitive so it is very rare information that can be only obtained on the surgery.
Some side note - PET scan is not sensitive for the sarcoma small lung mets, only big mets like 30-40 mm might be found by a PET scan, it is how this scan works. Keep us posted.

This is a good forum, i read alot already usefull info in here. I generaly feel there is not much info to be found on this type of cancer... maybe im just using google wrong

I will keep updating as i progress.

Dear Anders,
I am so very sorry for your ASPS diagnosis and for all of the misdiagnosis and medical mistakes that you experienced prior to the accurate diagnosis being made. Unfortunately, misdiagnosis is common with ASPS because it is so extremely rare and so many doctors lack the expertise and experience to make a correct diagnosis. I am grateful that you found your way to this Web site and that you wrote to the Board because the shared information and support which you will find here is so extremely important in fighting this very challenging disease. As you have probably already read, it is vitally important that you be pro-active and well informed with your medical care. Have you been given complete scans including chest/abdominal/pelvic CT's, a brain MRI, and a bone scan? These are essential in monitoring your disease, and the chest/abdominal/pelvic CT's should be done at least every six months, and the brain MRI and bone scans once a year unless you develop symptoms and/or mets which would then require more frequent scans. I am glad that you are being treated at a sarcoma center which is also vitally important due to the rarity of this disease, and I am very impressed that your sarcoma oncologist is familiar with Dr. Rolle and has referred you to him for treatment of your lung mets. I Hope that you will receive the approval to be treated by Dr. Rolle sometime soon. In the meantime, my special thoughts and best wishes are with you and your family, and I will look forward to your next update. Take care Anders, stay strong, and keep in touch with the Board as you are able.
With special caring thoughts and continued Hope,
Bonni Hess, mother of 27 year old Brittany Hess diagnosed with ASPS in July 2001

Hi Bonni
So far i have done CT scans every 2-3 months, and thats it. In 2007 i got MR and in 2008 i got the PET scan. CT scanes at mostly from legs to neck scans with both contrast injected and for drinking. after reading on this forum i am a bit pussled that i havnt got more brain scans, so im gonna look into this.

Hello again Anders,
I think that it is very important that you request a brain MRI and a bone scan to ensure that there are no mets in those areas. I certainly don't want to cause you concern, but since ASPS can and does metastasize to the brain and bone in some patients (but not all), it is best to be aware and vigilant in thoroughly monitoring your disease. In our daughter Brittany's situation, after her initial diagnosis in July 2001 when chest/abdominal/pelvic CT's, a brain MRI, and a bone scan were done, she was subsequently only being followed with chest CT's for the next three years until a chest CT which covered the area from her chest to just the top of her liver happened to reveal a liver met which we would not have known about until it became symptomatic, and possibly too large to successfully treat with Radiofrequency Ablation. Following the diagnosis of the liver met, and with Brittany experiencing some headache symptoms, she had a brain MRI which devastatingly showed two relatively large brain mets which should have been found earlier if regular brain MRI's had been done. Because of the size of the brain mets, Gamma Knife was heartbreakingly unsuccessful and after five months of extremely painful and debilitating brain swelling and increased tumor growth, Brittany underwent surgery to remove them, losing her peripheral vision in the process. The following year, in her annual bone scan, but without having had any symptoms, an ASPS met was found in her tibia. Unfortunately, stable chest CT's are not always an accurate indicator of stable disease in the rest of the body, and it is essential for complete body scans to be done at least once a year. Also, brain CT's are not adequate to show brain mets at the smallest size, and it is critical that a brain MRI been done instead of just a brain CT. Sadly, too many oncologists do not monitor ASPS as regularly and completely as it should be done, too many patients naively put their complete faith in their oncologists and assume that the doctor knows best, and then the patients pay the price with new mets which should have been found earlier for the best chance of a successful response to treatment. As with most things in Life, knowledge is power, and it is vitally important to be knowledgeable and as well informed as possible in fighting this insidious disease. My continued special thoughts and healing wishes are with you Anders, and I will be holding very tight to Hope for good news from your brain and bone scans when you have them, and for a successful outcome to your lung surgery with Dr. Rolle once you receive approval to move forward with it. Take care.
With special caring thoughts and continued Hope,
Bonni

Hi Bonni
In the beginning i actually did just let the doctors handle it, as it thaught they would always know more about this then i... This might be the case with a more comon type of cancer. After i been to Rolle i will request these scans. I figure there is no use in getting scans now, and then not be able to visit rolle, cus its clear to me that he wants the lungs to be the only place for meds, if he is to do the surgery. I dont wanna jepardyce this oppotunity.

Is this a foolish approach?

Anders - this is not at all foolish approach, we do the same - get the surgery first and the brain scan after so it won't get in a way of surgery and just tell "no known brain metastases" if asked on the admission. Strategy!

Hi Olga
Thnnx!

Hello again Anders,
I agree with both you and Olga on this approach since Dr. Rolle won't accept patients for treatment who have mets in any other areas of the body except the lung. As Olga said, fighting this disease really takes strategy because this is a true battle. Once your surgery with Dr. Rolle is completed and you have recovered, then you can arrange to have the brain and bone scans, which will Hopefully be clear. My best wishes are with you.
With special caring thoughts and continued Hope,
Bonni

Hi All
I have some great news! Today i recieved an e-mail from my doc, concerning being approved by the danish healthcare system, to undergo laser surgery with doctor Rolle in germany. And i was approved! So now im just waiting for a date to get the first lung done. I recon that ille be going within 1-2 weeks from now.

Hello Anders!
This is great news! I hope that you can get in to see him soon and have the first lung done soon.
I will keep you in my prayers and cant wait to read how it all goes after you are done soon!

Dear Anders,
Thank you for the thoughtful update and for sharing this wonderful news. I am so happy that you were able to receive the approval so quickly. Hopefully the arrangements will now be able to be made for you to be scheduled to have the laser surgery as soon as possible. My very best wishes will be with you for a successful outcome to the surgery and a speedy recovery. Please take care and keep the Board updated as you are able.
With special caring thoughts and continued Hope,
Bonni

Hi all
Just got a meesage from my onkologist today, that Rolle will see me Tuesday 6th of april. Rolle had a look at my CT scans, at mentioned that he sees 11 in one lung and 17 in the other. THe Danish doctors only mentioned 5 and 1. I wonder if the aditional spots rolle is mentioning, are indeed mets or maybe something else, that has not grown since i was diagnosed, and thus not mentioned? They are looking at the same scans, so im a little surprised.

I know some here have been to rolle, and i was wonderining about some things you might be able to answer...

1. For how long are they keeping you in Dresden after surgery?
2. When would i be able to start working again? ( i sit all day long infront of a computer )
3. When would i be able to do sports again? I run 1-2 times a week.

Greetings from Anders

1. Q. For how long are they keeping you in Dresden after surgery?
- A.:about 10 days - 3 at the Intensive care unit, at least 7 on the recovery floor, these are some of the most important days for your recovery - they have a lot of special training planned for these days and your lung function in the future depends on how good you do your part in these 10 days.
2.Q. When would i be able to start working again?
- A: in about 4 weeks after the surgery, but you have to get up often, do some stretching and moves, go around as although sitting on the computer is fine providing the chair is good, but you have to change your position often.
3.Q.When would i be able to do sports again? I run 1-2 times a week.
-A: You will be able to do sports soon but you will have to change the type of the sport - exclude the ones that involve shaking and sharp movements of the lungs - you can tear inside scars then, so it is better to start from the bicycle, preferably at the gym. You can start it at the hospital in Coswig, Ivan always does it there a lot as soon as he can start. I think he will add more info from his point of view here as he is able.