Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi all,
I'm a 22 year old mom of one, soon to be 2 boys in September. I was diagnosed with ASPS in April of 1999. The main tumor in my left thigh was removed in June of 99 and I had lung surgery to remove some mets in July of 00. Since then everything has remained stable. My main concern now is the mets in my lungs. Does anyone have any suggestions as to treatments that work well for this? I haven't done much research in this department for quite a while so it's all a bit new again. Also, has anyone had any lymph nodes removed and experienced side effects from it? I have noticed with my last pregnancy and this current one that my left leg swells more and I can't seem to get the swelling down very easily. I believe it's due to the surgery that I had to remove the tumor. I'm looking for ways to increase the capacity/workload of the lymph nodes to decrease the swelling. Thanks all.

Hi Sherry, welcome to this board. As I understand you had Dx with the lung mets in about a year after the resection of the primary, then you had them resected as well 7 years ago. Do you know what was the number of the mets resected then? Why they didn't resect them all? Or they resected them all but later more lung mets were found? What is the situation now - how many of them you have, are they resectable?
We discuss lung mets lem in a Lung metastases topic of the board, but generally speaking only surgery has been shown to clear patients lungs from ASPS mets, in some cases there was chemotherapy done before and after surgery and some nodules were necrotic when resected so chemo worked after all but the surgery was needed anyways. If lung mets are not resectable then if some of them grow faster then other they can be ablated, but this technique is not avail. everywhere. Where do you live?

Hey all,
I wanted to give you some background info and then pick your brains for all the great info you can give me. I was diagnosed in April 1999 with ASPS in my Left thigh and metastasis in my lungs. I had 2 rounds of chemo that made it grow and then they removed the tumor from my leg. In July of 2000 I had lung surgery to remove the main tumors and since then I have been stable. We just moved from Utah to Pennsylvania a year ago and I'm getting ready to go to John's Hopkins to see Dr. Julie Weber. I haven't been in yet because I just had my 2nd beautiful boy in August. I have been having some issues that have developed over the last 6 months. It seems harder to breathe and I almost feel like I'm getting asthma attacks occasionally. I haven't told my hubby this because I don't want him to flip out. (He has bipolar disorder and is just getting really stable again) I also don't want to admit it to myself yet. Because I was only 14 when I was diagnosed, I didn't have to deal too much with all of the little details and am having a really hard time getting the right doctor and finding out the best treatment options for me. If anyone has any suggestions, please let me know. You can also e-mail me at angiel101@hotmail.com. Thanks,
Sherry

After talking with my hubby he said that the doctor said that my mets are slowly changing, but he thought that it could just be the scans varying. There are 3 larger mets 13, 9, & 7 mm?...and then when I had surgery back in 2000 the doc said that he felt around 50 that were the size of the point of a pencil. I'll let you all know how my visit with the doc goes this week.

I met with my new doctor at Johns Hopkins yesterday and found out the good results of my chest CT scan. Here is what the radiologist report said:
Multiple pulmonary nodules seen throughout both lungs. Left upper love nodule measures 15 x 13 mm, previously 19 x 15 mm, decreasing in size. 4mm nodule in the left lower lobe, previously 6mm, slightly decreased. 9 mm nodule inferior left lower lobe, previously 10 mm, unchanged or slightly decreasing. 2mm nodule anterior right middle lobe, unchanged. 3 mm nodule inferior right lower lobe, previously 4 mm, unchanged or slightly decreasing. I can't tell you how exciting this is...you probably understand though. My husband attributes part of it to a herbal thing we tried called frequensea. I'm going to try it again and I'll let you know how things go.
On another note...I want to encourage everyone to get copies of all their records and keep them on hand. I just moved across the country and had to get all of my records sent to my new doc...It was quite a hassle. Also, if you request them soon after they are made you can get them at no charge, but Primary Children's in Utah and I'm assuming most other medical facilities send their records to another holding facility after 5 years. It is going to cost almost $200 just to get copies of those records for myself. Plus, if you have your records you can review them yourself and play a bigger part in your care...Thanks for all of you teaching me this.

This is wonderful news, Sherry! Congratulations!!

What a relief this must be.

We are hoping 'K''s Chest CTs will stabilize now that she's had surgery. It is a strange business, but some people think that thoracotomy induces some stability in the chest nodules - an immune response or something.

I remember seeing a report that said that if a child got a fever during recovery from surgery it correlated to a higher chemo response.

Very interesting stuff. I just hope that it is not what is happening w/Anthony as his mets have been stable since his last surgery which was the start of the GVAX trial. I desparetly want the GVAX to be working. Although his biopsy surgery of his lungs did not produce the same result.