Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi there!

My name is Golestani Sina, male, I´m 22 years old and I am living in Austria, Europe.

I suffer from alveolar soft part sarcoma since Spring 2007.

I would like to give you short Information about my anamnesis.

In summer 2006 I discovered a suspicious swelling which was located on the left side of my abdomen close to my kidney and my 12th rib.

After an ultrasonography the first diagnosis of a radiologist at the clinic Hall in Tirol was a lipoma, I was told something nonhazardous.
Due to my stressful period at school (final exams), I decided to delay the extraction of the “Lipoma” to February 2007.
This operation took place at the clinic Hall in Tirol without having a histologist during the operation.

A few days later I received a call, informing me that the resected tumor was diagnosed an alveolar soft part sarcoma...
A total resection of this area was initiated immediately at the hospital of Hall in Tirol.
The histology of the resected tissue showed that there were no Tumor-rest-cells left.

The oncologists at the hospital of Innsbruck, where my monitoring is supervised and the MRIs and CTs showed no more metastases, decided not to make chemotherapy and radiotherapy due to the fact that there is no effective one for my kind of cancer.

I was monitored every 3 to 6 months with MRIs and CTs of my whole body.

In March 2009 metastases were found in both lungs.

One week later the surgeon in Innsbruck used the “clam-shell” method and excised 8 metastases of ASPS.

Again, I was not undertaken to any kind of therapy except this surgical intervention.

I´m glad to have found this platform and I want to thank all of you who show me that I´m not alone with this disease and I´ve found some people
who help each other to win this battle.

As a next step I will undergo a homeopathic treatment at the Clinica Santa Croce in Switzerland, which is based on enhancement of the immune System.

Greets from Austria!

Sina

Hello Sina
Welcome to the forums!
I am sorry that you are also effected by ASPS as am I and the others in this forums either being a parent of a child with ASPS or a paitent of ASPS. There is as i am sure oyu have seen a lot of great information here.
At this time in my treatments i am also not on chemo and they want to monitor me for a while to see if things change.
I have this also in my 8th rib and part of the rib will be removed in a surgery in about three weeks.

I see that you are going to Clinica Santa Croce in Switzerland
Can you tell me what types of treatments they will be doing for you there?
At this point i am on vitamins and green tea.
An a very healthy diet to work with the immune system.

Again welcome to the forums

In healing hope...

Amanda R

hi Amanda!

thank you for your response!

The concept of their therapy is based on classic homeopathy.
I will stay there for 2 weeks. During this time they will have a look at my course of disease and with this information they will give me a homeopathic medium,
which is applied in the form of "Q-Potency", whatever that means

The goal of this therapy is the regression of tumor cells and increasing the general condition.

I am going to stay there in a few weeks. I´m very happy to have such an opportunity, even there is a tiny success to delay the appearance of those bad cells...

What vitamins do you take? How does your diet looks like?

sina

Hello!
I am Laura, Sinas girlfriend, and I wanted to post some new updates about Sinas condition.
He's done treatment in Switzerland, at the Clinica Santa Croce, based on homeopathy and is now taking globoli
which are specified to his types of symptomes. As it has just started, we can't really say its effects yet, but
hope for improvement!
His lung mets had been removed in april this year, and two days ago he had his first CT's - as 6 months have already passed.
Unfortunately, the radiologist told us, she is very sure to have found two new mets in his lungs!
She was not able to tell us more yet, wether size nor which side of the lungs - we have to wait for the final diagnostic results in two days.

Now here is a question, would it really be possible, that after COMPLETE tumor resection only 6 months ago there are already new mets appearing?
Please post what you think about this - we want to check this diagnosis again at another clinic with another radiologist because right
now we are very surprised.

As soon as we get to know more on monday I will post more details!
Greets, Laura and Sina

Hi Laura,

I'm sorry to say that it is possible to have new mets appearing just 6 months after the operation. It is always a difficult business knowing when to do the lung surgery. There is an idea that the earlier you do it, the quicker your situation will stabilize, but if new metastases are appearing, then new ones will pop up after surgery - or ones that were there but too small to detect by CT or by the surgeon will grow afterward.

Our daughter had some that were missed by surgeons as well as possibly some new ones. New metastases can occur many years after the primary is removed, but if the primary is removed, it seems like the heaviest showering of lung mets occurs in the first two years or so after the primary is removed.

It is still possible, though that the new lung mets can stabilize and go dormant.

Dear 'F',

thank you for your response!

We have seen the mets on the CT and one of them seems to be at a place, where it might have been overseen by the surgeon, at least that's what the growth rate lets us assume. growth rate has been calculated about 30 to 40 per cent by a radiologist, and the mets found now were about 3 mm big from zero, whereas last year they grew from 1,5 mm to 3 mm in more than one year.
That is suspicious in our minds, can it be possible, that growth rate raises so fast?
Sina will be talking to his surgeon this weekend, because neither oncologist nor surgeon want to practice a big surgery after only 6 months again, so they will be discussing other possibilities to go on. but they seem to have decided to still wait and see what happens for a few other months - although out gut feeling tells us to extract them as soon as possible from sinas body! Is our gut feeling cheating on us?

Unfortunately we are in Europe and in this forum most of the people are from the US and also talking about specialists in the US.
Is there maybe anyone here, who is also from Europe and knows some specialists for ASPS, or does anyone know, where to write or whom to contact, in order to get information about asps specialists in europe?

Laura & Sina

if it is really mm and not cm, these are still quite small.

While there is a rationale for doing surgery early vs. none at all, I don't think there is as strong a rationale for doing a quick redo. 1-2 mm mets can be indistinguishable from small vessels. You can only start to recognize them when they grow. There are not an endless number of thoracotomies you can do - certainly by conventional surgical methods - but even from laser. Conventional methods have to remove whole segments or lobes. Most surgeons will only want to do surgery when they think they can get them 'all'. It also depends where they are. Even if they are small if they affect all the lobes of lung, then one is 'inoperable' by conventional surgical techniques (you need to leave a healthy lobe behind)...then only laser is an option.

In Europe you are near Dr. Rolle in Germany with his laser. That is great. Our daughter had her first surgery with conventional surgery in the US and in retrospect, had we known about Rolle, we should have done him first instead. Her last two (redo on one side) have been with Rolle...now over a year ago and the left 8 months ago. With laser there is much more healthy lung spared. Rolle has told us that he can do a redo on her in the future if he needs to, but we can also see pinpoint mets that could be missed - and we would like to lengthen the time for redo as long as possible.

Our daughter unfortunately has 1 on either side that are above 1 cm...and they were missed when Rolle did the laser surgery (they are deep). But at least these two help her qualify for clinical trials of some of the new targeted drugs. Sometimes there is significant growth after surgery because of all the growth factors that move in to repair the lung after thoracotomy. They can also make tumors grow. But as said, they can also pop-up and seem to stabilize.

Hello Sina
It has been a few months i am sorry i have been jumping thru hoops from the holidays too my recent hung and rib surgery.

How is every thing going and how was your holidays?

I am not sure if you have done the ling surgery or are waiting but i went and called my guy that is amasing and left a msg for a referal if he knows of a wonderful doctor in your area.

I hopw that i hear bacj soon from you and that all is well

In healing hopes for all!

Amanda

Dear 'F' and Amanda,

thank you for your responses!
It's been a while since I posted updates, I am very sorry for that.
There has been a lot going on - still I am very glad to report that everything is very well at the moment!

When I last posted about the new mets and the tremendous growth rate we were afraid of, we
had another radiologist checking the scans. The suspicion, that they really were mets remained, but
the further proceeding was just to wait.
Also were we told, that after a szintigraphy suspicious nodules were found in the cranial bone and a rib (very close
to the surgery of the primary tumor). A diagnosis like this let us think of all the worst!

But we have learned, that in cases of patients with former metastases, any nodules are always diagnosed
maligne, before being diagnosed harmless...which of course sounds logical to me - noone would want anything to be
overseen.

Nevertheless, Sina is full of desire to enjoy his life as much as possible, so this february we went for holidays to New York
for a week.
Doctors had already set up a date for the next surgery at the end of february, taking care that Sina could enjoy New York and
gather strength and power for the surgery.

I can only recommend to everyone to plan some breaks in life, and regardless of the urge to really undergo surgery, take some time
for the beautiful things that make patiens happy - I am very proud to see that Sina tries to forget the disease at least for some time
and that this ACTUALLY seems to have impact on the positive progress against cancer!

When we arrived back from New York he was already preparing for the pre-test for the surgery. After the scans, two completely independent
radiologists were asked to look at the scans and we were revealed fantastic news:
his body had been checked all over, szintygraphy, ct scans and just everything.
There was - independently from both radiologists - found nothing in cranial bone and rib (doctors who had diagnosed this at that hospital might have been
a bit too cautious) and at the moment there are still the three nodules, about 3 mm, but without ANY growth since that mail I wrote when I was
so concerned about their sudden appearance. Nothing new grew.
So: in case they are metastases, they didn't grow and might really have been forgotten by the last surgeon.

But Sina's oncologists also told him, that there is a likeliness, that there are no mets but only scars from the last surgery.
Since they are very small and show no growth, nothing is impossible.

As to what treatments he's doing at the moment, there is on the one hand the globoli he still takes from the Swiss Clinica Santa Croce.
Also he drinks Noni-Juice. Does anybody of you have experience with this liquid? It is said to strengthen the immune system and the
body's defenses, especially in the case of cancer patients.
We have also read something about the juice ESSIAC, which he hasn't tried yet but is said to have similar impacts on patients.

He tries to nourish extremely healthy, also in context with the globoli-treatment: no mint, no coffeine, no teaine, no camomille, no meat (at all), inseed and linseed oil, increased consumption of omega-3 fatty acids, no salt, green vegetables which contain
incrased portions of antioxidantes (e.g. broccoli)...

Amanda, have you already received any answer from your doctor referring specialists in our area? you would help a lot if there was something or someone
you could tell us!

So far, this is what we can report.

We hope that you are all doing the best and send our strongest power and hope to all who suffer with us - because the only way we can fight
against this disease is together!!

Love, Sina & Laura

Dear Laura,
Thank you for your thoughtful update. It was so very good to hear from you again and to hear that, after the most recent scans, Sina's disease actually appears to be stable despite the thankfully erroneous previous concerning diagnosis of possible cranial and rib mets. It is difficult to understand how the mistaken diagnosis of mets could be made, and I am very sorry for all of the stress, worry, and anguish that it caused you and Sina. I am grateful that Sina has such a positive attitude and your strengthening love and support, and that you are both moving forward with Living Life and enjoying it. It is, as you point out, very important to try to Live Life, rather than to Live cancer. Positive attitude, positive energy, and trying to have positive experiences are very empowering, and I think that they can truly help to strengthen the immune system. Please take care Laura, tell Sina that my special caring wishes are with him, and keep in touch as you are able because as you so wisely said "the only way we can fight against this disease is together", and to do that, we must actively communicate and share information and strengthening support with each other.
With special caring thoughts and continued Hope,
Bonni

Dear Sina & Laura
It has been a few months and I was just wondering how you were doing? Post when you can and i hope that things are going well!

Hi Sina,
Ok its been now longer then a few months .. please post and let me know all is ok :/

Hi Amanda!

I am very sorry for my missed replies and ongoing updates.
I really appreciate your considerations about me, thank you very much!

This year has been with a lot up and downs, BUT
primary my last scans have shown a constant development!
No recurrent, my doctors are talking about 2-3 (very) small suspicious dots in my lungs,
but they didn't really grow since my lung surgery 2009.

My next scans will be in the next few weeks, i am looking forward to get a
positive result too.

I still had no chemotherapy or any kind of radiation.

I am praying that a cure against ASPS will be found soon,
even if my last check-ups were good, the bad thoughts are attending
my daily routine

Hugs for everyone here in the forum!

Sina

Hi Sina
YAY! you are like me then! I still no chemo and they are watching but they do not know 100% if these are ASPS also. When i did have sugrey 1/2 of what they removed from my lung wasnt ASPS. I pray that they are not and that yours are also not! You didnt need to go thru the ups and down alone you could have posted here silly lol I am so happy you are ok and please post more please it freakes me out .. i guess everyone here to me is like a little family
*hugs*

Dear forum,

Last month I had CT scans of abdomina and thorax. Unfortunately, it has been found that these two suspsicious nodules in my lungs, which had been detected after my surgery 2009 and observed regularly, are malignant mets. They had grown since February 2010 from 5 mm to 8 mm and from 4 mm to 6 mm. These two are located in the "anterobasal lobius interior" and "laterobasal lobius interior"... whatever that means I thinkt that the surgeon was not able to remove these two because of their location...?

The first weeks after the result where really hard for me, particularly when I have/had to cope with that by myself, and it is stil quiet shocking for me. Some oncoligist say the best treatment is a surgery... (oh god not again ) 2009 when I had my surgery I had the worst time of my life, really bad experience and it took me so long to get fit reasonable. But finally I am glad that I have such options of treatment...

One thing which let me think positiv again is that in heidelberg (germany) a new treatment (running for a few years now) had occured where mets in lungs (also in brain) can be removed with a special radiotherapy without a surgical intervention... did somebody heared somthing about that treatment or had somebody made experience with that? In german it is called "Einzeitbestrahlung" -> single irradiation..?

let's start next round...

healing wishes for all affected people and continued hope,
Sina