Lei

[tparoski]

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

[Ivan]

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?

[tparoski]

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...

[Ivan]

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.

[tparoski]

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???

[Olga]

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).

[Amanda]

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?

[Anders]

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

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