Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello, I am 26 years old. I live in Quebec and my English is bad. I speak French.

Excuse my English because I translate with a translator.

I was diagnosed May 2001, sarcoma alveolar of soft tissue with pulmonary metastases. My tumour was located in vast external my quadricep left. I have several pulmonary metastases which is between a few millimetres and 2 cm.

My tumour was withdrawn in June 2001. I received chemo and radiotherapy until February 2002. In October 2003, it had pulmonary recurrence and in 2004 I underwent thoracotomy which confirmed the recurrence. In 2006, I have remakes chemo of no result.

The taco of May 2007 shows a slow progression and new millimetre-length metastases.

The hospital complex of my area does not know any curative treatment and does not know very well this type of cancer. I try to live a normal life and to adapt me to my respiratory capacity.

Your forum is very interesting,

Cricri

Hi Cricri, you are welcome here. I am Russian and live in Vancouver, Canada so my English is far away from perfect so it is OK to speak any English here - just speak and share!
I have two questions for you:
1. When you had a thoracotomy - didn't they remove any mets from the lungs? What do they tell about the surgery to resect all lung mets?
2. What is the problem with the respiratory capacity - are you having any breathing problem at the moment? With the size of the mets under two cm and most of the mets in a few mm you shouldn't have any breathing problem, at least most of the people do not feel anything at this point.

Dear Cricri,

Welcome to iCureASPS. As Olga says, do not worry regarding your English. However, in my home we speak few languages, among them is French. If you wish to speak in French, please e-mail me and we can set up a phone conversation. My e-mail is: landesmany@yahoo.com.

Best Wishes,
Yossi

Olga wrote:Hi Cricri, you are welcome here. I am Russian and live in Vancouver, Canada so my English is far away from perfect so it is OK to speak any English here - just speak and share!
I have two questions for you:
1. When you had a thoracotomy - didn't they remove any mets from the lungs? What do they tell about the surgery to resect all lung mets?
2. What is the problem with the respiratory capacity - are you having any breathing problem at the moment? With the size of the mets under two cm and most of the mets in a few mm you shouldn't have any breathing problem, at least most of the people do not feel anything at this point.

Hi Olga,
when I speak about respiratory problem it is the breathlessness. I blow myself more easily and I take pumps to help me. The thoracotomy I had in June 2004. They removed 11 metastases on the right side. Some one was cancerous. Since, there is much more which appeared in my 2 lungs. Largest metastases is at 2 cm and the others in top. With the taco one perceives about thirty for the two lungs. The thoracotomy one is painful and then not very effective. Because several metastases are too small to be seen and it increases with time. I hope to have answered your questions.

Me is I would like to know the surgery with the laser to remove metastases it effective? What are they the chances of any repetitions? And it is this qe is also pain which a thoraco?

Thank you

Cricri

Almost all cases of the multiple lung metastases require a few consecutive surgeries to clear the lungs as some lung mets usually stay dormant - a single cell or a cluster of a few cells - at the time of the first surgery and so small that they can not be seen or found by the surgeon at the time of the first surgery, but we have seen some patients who had achieved the long term survival going through the surgeries.
It is very important to wait with the first surgery for a while to let more of them to surface and then to proceed with the surgery - but on the other hand not to miss the time for the surgery when it is still possible with the minimal lung tissue loss, esp. when the intention is to use the laser assisted resection - you need the majority of the mets be smaller then 1-2 mm so then the surgeon (Dr.Rolle) can burn them on spot not removing them so no lung tissue is lost - so it is very beneficial to have at least the first round of the surgeries done by Dr.Rolle or other lung surgeons who uses lung tissue sparing techniques - no stapler. If the surgery is done right, preserving lung tissue, then the person with the multiple lung mets can have as much as 6-7 consecutive surgeries to remove the recurrences, but it is very important to be able to rebuild the lung capacity to the normal level after the surgery in order to be eligible for the next "cleaning" round, so a few years between the surgeries is a good interval for that matter.
Laser assisted surgery is the same painful for the patient as any other as the pain is from the thoracotomy incision itself, but there is no other way for the ASPS patient to survive recurrence of the multiple lung mets, only to have a lung surgery again. If there are a few mets then the cryoablation or a radiosurgery might be possible, but it can not be used for a few dozen of mets. My son Ivan has found a big difference in the pain level between his lung surgeries, we attribute it some difference in the epidural anaesthesia performance between his surgeries - the pain management when the pain killers are delivered to the spinal column in the chest area - some times it works really better then other. You are young so your body's ability to heal is high, it may be easier the next time then the first one. I have seen cases when people were refusing to have a lung surgery at some point and then ether other metastases were found - brain for example - which preclude them from having lung surgery until these other mets are fixed, or they eventually had a lung surgery at the very advanced stage in order to survive and the surgery itself was much more difficult and resulted in a greater lung tissue loss then if it was done earlier.
This is my personal opinion based on the studies I read reg. the advantages of the resection of the lung mets for the soft tissue sarcoma patients and especially for ASPS patients as this sarcoma let people to recover between the surgeries.

I would suggest also looking at the clinical trial in Boston. GVAX. My son went for this clinical trial. He had too many metastasis in his lungs to have the laser surgery so we did not have that option. So, far he has had zero growth in the 8mnths since the GVAX trial. In the 10mnths prior to the trial he had 7mm of growth. So, I personally think it is working.
Best of luck,
Scott

Scott, I am so glad to hear about the stable disease, it seems to be working better for the younger people. It is very complicated for the outsiders to participate in the clinical trial in US.
When I contacted them reg. possible Ivan participation it looked like we would need to pay for everything by ourselves - incl. surgery to remove mets for vaccine, scans and doctors consultation reg. eligibility, the trial would pay for vaccine preparation and administration only.

From what I understand the cost associated w/laser surgery is no different. Correct?

The cost of the laser surgery was about 12,000 Euro per a lung but in the end we got it paid for by the provincial insurance, I wrote a long assay reg. positive role of the surgery in increasing survival of the patient with the sarcoma lung mets overall and ASPS patients in particular supporting it by the published articles and answers from the authors that Ivan is eligible for the surgery as he doesn't have any other mets everywhere and his health allows him to have these surgeries so he can use this chance. It was apparently a long story and they didn't go for it that easy because to verify my arguments had the same thoracic surgeon who refused to do a surgery here so my point was that it is not his fault that laser tool is not avail. in Canada to make this feasible. The participation in an outside trials as the cost of the experimental treatment is never covered. Well - we would go for and found the money but we were/are facing to have more lung surgery in the future so we had to choose the priorities. I do not know what the cost of the participation in the Boston trial would be for us so it hard to tell if it is in the same range or not. Also there is so many adhesions in Ivan's lungs that VATS surgery to remove a tissue for a vaccine was very much questionable, we've been trying to have a VATS for his pneumothorax repair and it was converted to the open surgery anyway.

Hello, in July one found me mets brain. 4 mets of 4mm and 4 of 1 to 4mm. I had migraines since at least 1 year and half. But in July I had a migraine with numbness of the left arm and the face. I am afraid and I am really sad. I saw in Montreal a neuro-onco to receive radio-surgery, but I had too many mets. I await news for gamma knife and I do not know if it will be possible since I have at least 8 mets. The doctors offered to me the radiotherapy of the brain in entirety and I cannot what make. They say to me that more chemotherapy of possible. I am really afraid and I cannot any more what think. That made already 7 years that I fights against this foutu cancer and I am afraid well to lose the combat. I do not manage any more to take the top. I arrived at living with the pulmonary mets, but those of the brain, I think not there of not arriving.

Cricri

crici, keep your chin up and keep fighting, there are many on this forum who have dealt with brain tumors. Please, call Yosef so you can speak in your native tongue about the different methods available to destroy brain mets. God bless.
Scott

Dear Cricri,
Thank you for your update. I am so deeply sorry for your recent diagnosis of multiple brain mets. Because your mets are relatively small there is a better chance of a successful response to Gamma Knife treatment. One of our ASPS Community patients recently received Gamma Knife treatment for five small brain mets on the same day. Are any of the tumors located in an area of the brain where they could be safely surgically removed? If so, perhaps a combination of surgical resection and Gamma Knife could be used to remove and destroy the tumors. It is very important to move forward as quickly as possible with some kind of treatment as ASPS brain mets can grow quite rapidly. Please know that my most special thoughts and prayers are with you Cricri, stay strong, and keep all of us on this Web site updated as you are able.
With special caring thoughts and continued Hope,
Bonni Hess

Dear Bonni Hess and Argonaut, thank for your help.

Cricri

Hello,
I wanted to give you some news. I received radiation treatments for the brain as a whole. I had a relapse of temporary paralysis before getting treatment. It is now 2 weeks since I finished and I still carries. I shall only in December if the treatments were effective. I remain positive and I pray that it may have worked

bye,

Cricri

CriCri - thank you for the update and we all wish you to have stable scans next time.