Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello to everyone,
First of all, I would like to say thank you to all the people who are willing to share information about ASPS. It is a tremendous help to hear about new treatments and even more about personal experience.

My name is Tamara and I am writing on behalf of my friend Leila, who was diagnosed with ASPS in April this year. Leila is a 25 year old young women from Serbia. Doctors found mets on both of her lungs and she had 2 successful surgeries since then. Three days ago, she had a firs appointment with her oncologist (who was nowhere to be found for 2 weeks due to her vacation period... and she is one of most respectfull oncologist in this area...or at least she is said to be). We were surpriced to hear that she recommended treatement outside of Serbia, because this country doesen`t have adequate treatement to offer. She did not recommend any medicine, country nor clinic wich she is supposed to contact. She doesn`t look to interested in providing real medical or any other support. If Leila would stay in Serbia she would undergo a chemio theraphy, which is according to this doctor not the best solution. Now we are looking for clinics and doctors from Europe where Leila could get any treatement. We know that we need to make a quick decision, but we do not know where to start searching. It would be very helphull if anyoune could send contact information od doctors and clinics in Europe that we could contact.

Thank u in advance
Tamara

Hello Tamara and Leila

1) When was ASPS first diagnosed, and when do you suspect it began?
2) How many mets in lungs right now (what size), what kind of surgeries she had - thoracotomies?
3) Where was the primary, and how was that treated?
4) Any other mets anywhere else? Bone, brain, other organs. Were they all scanned?

I think your oncologist is probably right about turning down chemo, and also about seeking treatment outside of Serbia. How is Leila's financial situation?

1) When was ASPS first diagnosed, and when do you suspect it began?
It was diagnosed 14.04.2010. I do not think anyone said when it begun...we heard rumors that it might started 3 years ago, and then we header it might exist since she was a child. Here communication with doctors is highly limited.

2) How many mets in lungs right now (what size), what kind of surgeries she had - thoracotomies?
I do not know... In her results I can`t find any place where they explicitly mention number of mets. I do know that they used thoracotomies (just because u used that word and I found it in one report). She had 2 surgeries. She had tumor removed and 3 of her ribs. I found some reports from after her scan... but I am afraid my Latin is not so good... They are mentioning several changes and their size rages from 5mm up to 17 mm.

3) Where was the primary, and how was that treated?
As u see, I have a scarce information because doctors do not try to explain anything. I know that after the lugs surgery doctors said that they think that primary was the one they got out on the lungs... but we were waiting for oncologist to tell us more after lab results come back. We never heard anything else on this topic.

4) Any other mets anywhere else? Bone, brain, other organs. Were they all scanned?
They just did a scan of her lungs. I suggested that she asks for scans of her other parts of body, but her doctor replied that if she feel any pain in other parts that only then she would get a scan in that particular part of the body.

Finance situation... in relation to average ppl in this country, her family is wealthy, but I am afraid that compared to other countries they are average or below average. However, Leila also has medical assurance in Croatia and she header that in Croatia, country is ready to participate in fees of medical treatments abroad if there is no adequate treatment in Croatia.

I just sent her findings to a friend who is a doctor and I hope he could translate more for us...

tparoski wrote:I do not know... In her results I can`t find any place where they explicitly mention number of mets. I do know that they used thoracotomies (just because u used that word and I found it in one report). She had 2 surgeries. She had tumor removed and 3 of her ribs. I found some reports from after her scan... but I am afraid my Latin is not so good... They are mentioning several changes and their size rages from 5mm up to 17 mm.

Why did they remove the ribs? Did they remove ALL lung metastases they could see or did they leave something?

As u see, I have a scarce information because doctors do not try to explain anything. I know that after the lugs surgery doctors said that they think that primary was the one they got out on the lungs... but we were waiting for oncologist to tell us more after lab results come back. We never heard anything else on this topic.

It's unlikely that the primary was in the lungs - just doesn't happen. We have clinical studies here http://www.cureasps.org/bibliography/ under ASPS Clinical Studies which prove that ASPS does not originate in the lungs. It's somewhere else very likely. You need to find it ASAP. Supposedly if it doesn't hurt, perhaps it's still small and can hopefully be easily removed.

They just did a scan of her lungs. I suggested that she asks for scans of her other parts of body, but her doctor replied that if she feel any pain in other parts that only then she would get a scan in that particular part of the body.

You can't accept that for an answer. If it hurts it's too late for effective treatment. You need to get the doctors to order all scans - bone scan, brain MRI, full body CT (look for the primary). This is standard procedure and it needs to be done now. If you prove to them that they have not found the primary, they have to do all the scans anyway to find it. ASPS metastasizes to the lungs, brain, bones, and other parts of the body. There could be asymptomatic mets there which could be dealt with before they grow too big. Once they start hurting - options are VERY limited.

Finance situation... in relation to average ppl in this country, her family is wealthy, but I am afraid that compared to other countries they are average or below average. However, Leila also has medical assurance in Croatia and she header that in Croatia, country is ready to participate in fees of medical treatments abroad if there is no adequate treatment in Croatia.

Alright. You need all your scans done before any out-of-country consultations. Once you get that done we can suggest doctors for you.

I just sent her findings to a friend who is a doctor and I hope he could translate more for us...

As a patient who was treated I think she has a right to demand to know exactly what was done during the procedure.

One of the best ASPS and sarcoma experts in Europe is Professor Judson at Royal Marsden Hospital in London, UK. You can contact him directly.

Hi,
I would like to share news on Leila. She had her meeting with oncologist from Serbia and they told her that available options in Serbia would never help her and that she should look for help in any other country.So she went to Croatia (she also has Croatian health insurance and her parents live in Croatia). Oncologists from Croatia suggested classical chemotherapy. Since, we knew that this treatment is not giving promising results, we went for Vienna to see doctor Thomas Brodowitcz a specialist for sarcoma. She has done additional findings an a CT scan of whole body. She was recommended sutent. Her primary tumor was on her ribs and it was completely removed during the first surgery. It is know that she now has about 20 metastasis on both lungs and the size is between 1 and 1,5 cm. The biggest one is 1,5 x 2,5 cm.Her metastasis are not operable. It seems it grows faster than expected since a months ago her biggest metastasis was 0,8cm

Here comes the tricky part. Doctors from Vienna sent recommendation for doctors in Croatia to start a treatment with sutent. Even though this drug is registered for kidney cancer, this drug has never been used and Leila was refused for this drug. After refusing to give her this drug they also mentioned that if Leila goes for Vienna to use this drug she would loose Croatian insurance...
We feel frustrated with administration and dead ends... It is now 4 months after she was diagnosed with ASPS and she is still without any treatment.
Any ideas???

Hello again,
1. There are a few articles about use of the Sutent (the other name of this drug is sunitinib) that you have to print out and provide to the insurance company with the appeal to change their decision to pay for the Sutent. Look for the articles in the ASPS related publications topic of this board and on the Pubmed.gov doing search by "Alveolar soft part sarcoma sunitinib". I do not have time now to post the links here but I hope someone else here can do it to help you.
2. Sutent is not the complete answer to this problem and I suggest you to get a second opinion about lung surgery from Dr.Rolle in Germany as he already done numerous lung surgeries in out ASPS patients and all of them were told unresectable - if you guys can pay for it, it is expensive about 12,000 per a lung. His info is in the lung metastases topic.
3. If you can not do a surgery by the financial reasons or if Dr.Rolle will not be able to do this - in some cases he can not do it as well even using his advances laser assisted technology due to the specific situation, I would treat the fast growing mets (biggest ones) by the cryo or RFA ablation, inquire locally if they have ablation available, if not there is a good option to do it in Frankfurt by Dr.Vogl who is the very advanced ablation doctor (interventional radilogist is the name for this specialty).

Hello Lei,
I am so sorry that this is such a frustrating situation with the insurance and now with the use of this drug that may help her...

Will your insurance pay for a doctor in the USA because this sarcoma is so rare and will the sarcoma doctor help you by talking to this insurance company?

I would recommend sending CT scans of the lung mets to Professor Rolle in germany... Some on this board, including myself, have been there and had mets removed.

http://www.ctsnet.org/home/arolle (contact info)

Hello to everyone.

I am a Leila`s friend. I am writing to say that unfortunately, Leila passed away last month.

Even though she was not active on this forum, neither she was what one might consider a strong cancer fighter, people who loved her continued to visit this forum and hope for both her and everyone else here.

I can`t tell more about her treatment options since she was opposed to using any treatment most of the time (passively or actively) and she did not prefer to talk about her illness. After she left Serbia, she tried sutent for a month or two (if I remember correctly), but side effects were too severe and after a while she decided to end that drug.
She was persuaded to try to get support in Essen (Germany) and I believe she was pleased with drug she was prescribed over there (I think it had a name RAD001, but I am not sure anymore). Side effects were mild and her lung mets did show signs of regression...after a while it was only stable. It got to the point that by the end of 2012 doctors suggested new drug since this drug was no longer working for her. She used that period to come to Serbia again and we spent most wonderful, precious time with her. She stayed for a couple of months, and she seemed to be happy and healthy and beautiful as she always was. This time she spent us we will always appreciate and we will never stop missing her. At that point she got attached to her doctor in Essen and she was willing to take his advice and try another drug, as long as he is her doctor. While she was in Serbia she was waiting for a replay...but it took just too much time.
By the end of January 2013. she started coughing and didn't feel as good. In February she left Serbia and wet to see her doctor in Essen. For some reason she didn't get the drug and they kept her waiting and they were delaying all plans. I know in April she still did not start with any treatment. She promised she would come to Serbia again...we were numbering the days, but she did say she felt quite bad because she was vomiting all the time and her breathing was not good. And then the disappeared for couple of months. She did not write or call any of us. At last she decided to turn on her computer in Jun. Between April and May she started crizotinib but again she did not respond to side effect well and by the end of June she decided to stop using them. Her mets showed signs of growth so doctors supported her decision. In August she was prescribed another drug but she was to weak to use it, so she was trying to gain some weigh (i believe she had 37kg or less). Last time i heard from her was October 2013. After that, she did not turn on her Facebook, cell phone or mailbox. I exchanged couple of massages with her mom to wish happy holidays. Last month her relatives told us she passed away. I only know she was at home. Unfortunately, at the time I just went out of hospital due to some pregnancy complications and I was not able to attend a funeral in Croatia. One day, my husband, our baby to come and I would go visit place where she is buried. She made a profound impact on our lives and we will always consider her a part of our family.
Every now and then, I visit this forum just to see how everybody else is doing. I wish you all the best.

tamara

Dearest Tamara,
Thank you for posting the sad news about your dear friend. Please, understand that at times when you are ill we pull away an this had nothing to do with you!
I see few friends posting here it is usually family an i am sure she knew you loved her an was there with her in your heart!

I wish you health and happiness am sending you a huge hug!

I wish there were more caring friends in this world that stood by people when they have cancer.. seems more run away in fear then go forward to help in the fight! <3

Tamara

From our family to Lei's direct and extended family ,please accept our most sincere condolences.

Love
The Josh p family

Dear Tamara,
It is with the deepest sorrow and compounding immense anger towards ASPS that I read about the tragic loss of yet another precious young Life to this insidious cruel disease which has already taken so many, and at least three from our ASPS Community during the past few months. I am so profoundly sorry for the devastating loss of your dear friend Lei who you obviously cared very deeply about. Thank you for so thoughtfully sharing this very difficult news with those of us on this Forum, for so graciously providing that information which you knew about dear Lei's increasingly difficult ASPS journey and the treatments she tried and received during the past four years, and for your ongoing interest in, and caring about, those of us who continue to fight this very challenging battle. Lei was very fortunate to have your special friendship dear Tamara and I am so grateful for the wonderful precious time that you were able to share together with her in 2012 when she returned to Serbia for a few months. Hold tight to those cherished happy memories which will Live forever in your dear heart and which will bring some comfort from the deep sorrow of your beloved friend's devastating loss. I know that it must have been very difficult, heartbreaking, and frustrating for you to have her isolate herself from the communication, help, support, and caring of friends and to resist/oppose more pro-actively fighting and discussing her disease. Each patient reacts to/and deals with their illness in different ways, and the only thing that we as family and friends can do is offer/provide as much support, help, and encouragement as is wanted, and then ultimately respect and honor the patient's decision, as difficult as it may be and as helpless as we may feel, if they don't want to address the harsh reality of the disease or fight it as actively as we want them to. Some patients like Lei unfortunately, but understandably, lose the will to continue fighting and enduring so much pain and suffering. May you find comfort in your treasured memories of dear Lei, and the knowledge that she is now free of her disease and all of the pain and suffering that it caused her. Take care dear Tamara and know that my deepest shared sorrow and sympathy and my most special caring thoughts are with you, Lei's family, and all of her friends.
Bonni Hess, mother of 32 year old Brittany diagnosed at age 19 in July 2001

Tamara
I so agree with Bonni that you are a true friend that equals family.
Please keep in touch
Love
Debbie

Tamara - I am so grateful to you for being such a good friend to our fellow ASPS patient Leila, for bringing a closure to her story here and for revealing some very important details of her medical history - every single detail is very important for us. Your understanding of the ASPS subject and memory are also to be complimented. Although you were not sure of the right name if the drug that Leila was able to obtain some regression of the lung mets and then to be stable on for awhile in Germany - you named it RAD001 - You actually were correct and this is a very important for us information. I run a search at the Pubmed and this is the name that is used in Europe for the mTOR inhibitor Everolimus. We have very limited experience on this board with the use of this drug, one of the patients used it for a year with the stability that was attributed by us to a slow growing nature of the ASPS and not to effect of the drug. But it seems that it might be not the case and the drug actually worked to slow down the growth for awhile and this information might be used by someone else when other options are not available - it is an immunosupressing drug and the weight loss might be its side effect.
Thank you again for being with use for while and I am sure it is going to help you to appreciate how wonderful is the normal life that other people take for granted.