Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello
This will be my first post giving info and up dates on my treatment. I am going to start to use Amanda R because we have another Amanda on the boards
Almost four weeks ago I have the primary that was 6cm removed from my right calf. They took four margins around the tumor and they were all clear. I forced myself to start to walk six days ago even if the swelling was still present. I am waking now and also walking with in the morning barley a limp now. I rest my leg though when ever I feel pain.

I saw the chest surgon last week his name is Leland Foshag and he is in Sants monica California. For some reason the CT of my leg was sent to him and the report for my chest *sigh* so he has ordered the CT of the chest and brain and after looking at the report he said that for my smoking for so long and living in Los Angeles that this was not that out of the normal yet he wanted to see the CT and look at it and also at the rib that now kinda hurts. So I am waiting for him to receive this and then call me back. I asked him if he knew of the doctor that is in Germany and he said yes I wish he was here in the USA I would like to meet with him but he is to far away. The surgon I saw was a very loving man and I even got a hug from him He is a good hearted man and spends a lot of time talking to his patents. When I was so stressed I left a message for him to set up and appointment and I guess he heard my panic in my voice and called me and spent thirty minutes on the phone with me and after that call I started to eat again
I feel truly blessed!

I saw two oncologist on the same day and they were:
Dr. Behrooz Hakimian *He is also a hug hugger and is a cancer survivor* specialty is radiation oncology
Dr. Charles Forscher specialty is Sarcoma at Cedars Sinai hospital in Los Angeles. He said this was a stage 2 and that it was just a stage 2 by a very lil margin and told me he was thinking of using a drug that I cant remember the name of *An inhibitor* and not chemotherapy :/

I was going to do the CT of my right calf and then do the tattoos and then start the radiology the next week till I told him about my chest and he said he wanted to wait un till Dr. Charles Forscher saw me and also everyone talked this conversation would include how Dr. Foshag was feeling about my chest after he saw the CT.

So here I sit and wait till they all talk. Other then feeling a lil pain in my leg when I push myself to much physically I feel ok. I just want to start on every thing now and not wait I want to know if it is still in me and if what is in my lung and ribs are this evil invader.

Today I made an appointment to also see Dr. Rosen Premier Oncology in Santa Monica. I have seen all of you talk about him and I want to meet with him and see how he feels about treatments and my state of this condition.

I am trying to be proactive as I can and not get crazy and stress myself out. It has really only been six weeks since my diagnosis maybe I am pushing treatments and CT's and the hole thing to hard I don't know. I have days like then I was seeing the two oncologist that I just broke down in tears in the waiting room. I hate cancer

Anyhow, I am going to get another
CT from pelvis all the way up thru my brain again.
Bone scan
MRI of the brain with contrast *Even if I was told that it would have shown in the CT if the cancer was there* I don't care. Bonni who knows a lot more then I said to do this so I am

I have changed my diet to be even more healthy and organic then it already was, I am eating a lot of greens and fruit and will be seeing a doctor srecialising in this and will post his name and suggestions for a diet for this type of cancer after I see him. I was told that it couldnt hurt doing this by my doctors and taking suplements so there goes sugar and coffee out of my life.

If anyone has any imput on the situation please let me know it would be greatly apreciated

Sorry about the very long post!
Huge hugs to all!

Amanda R

Hello
Today i got a call from my chest surgen and he said that the six things in my lungs looked to him like they were from an old respratory infection and not cancer. He told me to start the radio on my leg ASAP and that we may have gotten this in time :/ We will be doing a CT with contrast end of april begining of may of pelvic, abdomen and chest and brain again to see if any thing showes up. This will be on going as i am told for the rest of my life.

The MRI of the brain may have to be done after I get done with the radio on my right calf.

The rib he said so far was the only thing that made him concered and that we would be watching this very close.

I was so happy to hear this i almost started to cry in my car. But, my son was with me so i held back.

Does anyone have any imput and is this normal to get these results? Is it possible that it is gone?

*hugs to all*

Amanda R

Hello
I was just wondering did anyone else feel better after there ASPS main was removed? My skin is even starting to look better. I am not sure if it is the new foods i am eating but i look more healthy and also feel more healthy :/

I have been reading the forums and wanted to say that all of you with ASPS and the families that are also going thru this you are all in my heart and my prayers!

I am going to the doctor today and will post what he tells me to eat and avoid in hopes that this diet will at least help us build are bodies stronger to deal with this evil intruder and the treatments. I know that some have expressed an interest in this and it will be again posted today This is for a woman though and not a child and if anyone looks at this diet and wants to talk to this doctor i will give them his phone number. My Onc said that this diet cant hurt and that actually it would help to be very healthy thru the treatments and the stress. One very important note though! If you are on a treatment some of what he will be telling me must not be done durring radiation and chemo! Please, talk to your Onc before starting

Huge hugs to all the parents children and paitents that are going thru this!
My heart and prayers are with you allways!

Amanda R

Amanda, it is good to see that your spirit is bouncing back after the surgery and you feel better now. We did have a testimonials from the patients that they felt better after their primary tumors were resected. May be it was a psychological effect of getting rid but may be there is a deep physiological reason for it as tumors are found to suppress the immune system by emitting a few different substances and after their resection the immune system restore some of its capabilities. In regards of the complimentary therapy and dietary changes - it is important not to use anti oxidants during the radiation therapy and chemotherapy as they interfere with the treatments and lessen their effect protecting not only healthy tissue from the oxidative damages but the sarcoma cells as well, your doc is right here.

Hello Olga
I am glad to hear that i am not the only one that has felt better after having the tumor removed. I am about to start the new diet but it seems that it is fit to the paitent rather then everyone with cancer gets this diet. The only thing i see in comen is the Flax Seed Oil and no caffine nor sugar all organtic vegies all deep green colors steamed and fruits *fruits maybe a no no because of the sugar in it to some* and meats with no hormones. I see this doctor again on friday and then we will talk deeper about this diet and i will post. But, again this is for a female adult and i would sugjest that everyone thinking about this type of diet see a doctor

I am still waiting for them to make a move on some kind of treatment! I am not looking forward to treatments yet its been five and a half weeks sence my surgery and we need to start the radiation or biopsy this rib wich is bothering me

They said it may have not spread and i feel like *great if it hasent* But, lets get going with making sure this demon doesnt spread or if unknown mets are around kill them!

Are there cases that this has not spread? I dont know of any at all! My tumor was 5cm...

I want to thank everyone that has responded to me thru this! It has meant a world of difference in my life! <3

*hugs to all families and paitents*

Amanda R

Hi Amanda, I'm 29 now and had a +/- 4cm ASPS tumor in my left thigh (about 11 months ago) No signs of mets yet on CT (lungs) and brain (MRI)

I’m getting a 4 monthly checkup (Xray only) (they got that suggestion also from the MD report)
I know some members would do it different but I feel good about it . It took me about 4 months to get my life back on track after the first diagnose. It’s still always in the back of my mind.

In the published reports from for example MD Anderson they found NED (no evidence of disease) for around 70- 80% of the patients after 5 years and longer.
So if no mets at presentation you and I will have a good chance. If it spreads it will likely do it in the first 18 months. Most of the times even within 7 – 9 months.
But It's likely that the results are even better because in the reports they didn't always use CT or MRI for diagnose.

http://cureasps.org/library/12_Texas_Review_1999.pdf

http://wjso.com/content/6/1/71 (latest one 2008)

All the best
Martin

Martin - thank you for the post to point to Amanda and other people who is reading it that there are cases when primary tumor is resected and no metastases are found means that the tumor has probably not metastasized and the disease remains to be a local. I opened a new topic with your name here in Personal updates to re-post part of your answer to Amanda R. here to provide other people with the more objective impression of the ranges of how ASPS might be presented in the people - from localized to widely disseminated disease. There is a common problem of the boards like this - people with no problems do not post and people with the problems are very active so the newly Dx person might be really overwhelmed by the reading then (and NO, people do not read Library articles even thought we try to keep them up to date!).

Hello Martin!
Wow thank you for your post! I am a wee bit older then you and smoked so what they think they are seeing in my chest maybe from being a smoker or from an old uppser resp. My rib maybe from an old injury or some thing of that matter and we are doing a needle biopsy with a CT to make sure. We are going to start radiation to my right calf even if all four margins were clear and they are saying it will be about five weeks of it. Did you do radiation also?

I have no idea what will happen over the next few months or years but for now i feel great. I understand 100% what you mean about this being in your mind a lot and i hope that after four months i will feel a lil better like oyu do and not wake up in the middle of the night thinking *I have cancer and it is spreading and a thousand other frightening things things* My sleep has not been well for over a month now *sigh* I think we all go thru this in are own ways inside and no matter what the outcome I have i have leared a lot about my life and life its self. In a way this has opened my eyes to life and how not to be in nutral and to live it to its full. I know it sounds corney maybe and very over stated but it really has changed many things in a good way. I would rather live ten years with my eyes open then fifty with my eyes shut. I allways try and find a positive in every thing and this one was tuff to do that with, lol

If you ever need someone to talk to e mail me I do understand what you are going thru for the most part and what ever you tell me or are feeling I wlll with all my power try and make you feel better as your post has done for me.

Amanda R

Hello Olga
I agree with you that we have others reading and not posting and i wish they would.
No matter what stage they are in it is still ASPS.

I have found a dear friend Bonni from this forum and she has been my rock thru this and I dont know where she gets her streangth! I cant even express how much she has helped me <3

Posts from you Olga telling me about the Dr I was seeing and your feelings and facts on this have made a huge difference to me!

The others that have either pvt msg me or responded have also helped greatly to make a difference.

It allways helps to post and have a conversation rather then just read. You never get 100% all of your questions and fears really heard by others even the doctors. With this diagnosis uncertinty is very painfull. The pain is very real if you are the person with ASPS or the family or loved ones.

If anyone is reading this that has not posted before. please, post and say hello not only will you be helping another person but you may also end up helping yourself in many ways. I know i lurked for a few days in fear and read before I could post. But, i am very glad i did post and i hope that others do also

Amanda R

Hello
I have seen that others have posted there Pathology reports so i shall post mine.
Though i have no idea what any of it really means :/

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sections show a portion of an organoid neoplasm in wich the nests are compartmentalized by sinusoidal vascular channles. The cells are uniformly round to polygonal with pink granular or clear cytoplasm and prominent nucleoli and well defined cell borders. Mitiotic figures are infrequent.

Cytogenetic studies are underway and the results wil be reported in an addendum.

Immunostains:

TFE3: Strong diffue nuclear positivity.
MyoD1: Strong diffuse cytoplasmic reactivity.
Keratin: AE1/3, S-100, desmin, smooth muscle actin: Negative

GROSS: 1.2 X 0.8 X 0.6 cm

additional tissue: Receved in formalin are four tan soft tissue fragments ranging from 1.0 cm to 3.0 cm in general demsion and amounting to 0.7 X 0.6 X 0.1 cm in aggregate. Entirely embedded.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I again have no idea what any of this means and if anyone can make some sence out of this and let me know i would love it.

Next week i am being asked to start radiation to my right calf and i am not sure if i should do this or now :/ It will be low dose for about six weeks at five days a week.

Let me know what you all think about the report and the radiation please i respect your opinions and i am at a loss of wether i should do this or not.

Amanda R.

Hi Amanda,
I didn't get radiation. There is a very low chance of local recurrence. But it’s your decision what to do.

//From the MD Anderson Report: 1 of the 22 patients with localized ASPS was local recurrent.


Regards
Martin

The TFE3 nuclear immunoreactivity identifies it as alveolar soft part sarcoma. If that is the size of your primary, that is good. It is more likely to be local (i.e. not metastatic) if it is smaller than 5 cm, but of course exceptions do occur.

Some doctors choose to do radiation to the site after removal of the primary to reduce the chance of microscopic disease recurring after surgery. ASPS is moderately radiation resistant - it responds sometimes, and sometimes does not...so that is why some doctors don't do it...also depends on where the location is. I think in the leg there is less of chance of toxicity to nearby structures.

Hi Amanda,

My husband is also going to start radiation tomorrow. Allthough all margins were clear, our doctors have also suggested radiation for better local control.
As 'F' pointed, since its the leg , it might be relatively safer.

Your primary looks small, I think you might have caught it early. Best wishes.

Hello Martin,
Three of the doctors are saying to do the radiation and one has not responded. Though i do like my doctors a lot it and they are great! It seems i am falling into a void and no one is even responding to my calls :/ I called last week and yesterday. I think if it is a small chance it may make any thing that there die then i sadly will do it. It has now been almost two months though sence the surgery and i will find out of that is to late anyhow and that if any thing was there it would be some where else in my body now *sigh*

It is so easy to fall into a comfort zone when they are not calling and not planing and i felt great about it till i relised clearly that my care also depends on my pushing them to remind then i am still here and that i want some kind of action.

I cant just sit and wait it is making me too freaked out ...

*hugs*
Amanda R

Hello 'F',
Thank you for telling me about the report i really couldnt figure out a thing in it, lol

The tumor was about 5.76 i think thats right
It is still small though and i thank you for telling me that! It did make me feel better. The .76 though is what is bothering me so darn much!
It seems like the doctors are far from in a panic and i am going to have to start again to make calls today about the CT biopsy to find out what this is in my rib. I guess in a month we will see if the things in my lungs are there and the same, gone or have grown.
The waiting is hard and the not knowing is the hardest. I hope i find a way to make this easier to deal soon so i can not wake up every morning in fear.

*hugs*
Amanda R