Cure Alveolar Soft Part Sarcoma International (iCureASPS)

i feel very un me
like i want to just cry
i just want to be better
im tired of being frightened all the time

Hello does anyone know of a born strengthening think? Or a trial? What about this please ?
http://issels.com/Vaccines.aspx#sthash.k602Damx.dpbs

Hi Deb :)
I thought a blood test for liver or kidney ?

My surgen found both of the last two surgeries they X-ray an talking to me

So maybe we will stay with the X-rays an not bone scan ? I thought everyone did them so I was going to also /:

My kitties are very special Dragon who at the moment is ...

Hello Bonnie :)
I'm resting a lot but it is getting hard I am dancing in bed when hubby isn't looking lol I do it to play around. It makes Maria my helper an Aidan who has been home with bad tummy laugh :)
I'm eating an shocked at what I am stuffing my face with. Cheese burgers! With extra tomatoes ...

Hi Deb :)
Left shoulder elbow area
An excited ti itch it lol

We are lowering the pain meds also
An I have so much energy today my husband has ordered me to bed lol
He said I could make things bad again by being a spaz an so I sit

Our tree is here an my kitty Scooter was laying on a huge branch in ...

Hello
Just a little note to say I am healing an pain meds are slowly being cut down an cast is coming off next week!

Love you all!

Hi Debbie :)
I live in an apartment so going outside is a long undertaking
I will open French doors an get sun today <3

I'm excited about Thanksgiving
Thursday an then with my lil sister Saturday :)

Problem is not much fits over cast and Thursday it's a very nice restraint
So today the search ...

Thank you Bonni for posting the update I have been going thru a lot


hello Everyone in my asps family :)
Pain is under control an will be starting PT on right arm in about a week. Then in I thing four weeks when the second cast is removed PT for left ran will begin

Yes, he coasted the left arm a ...

Dear Trixi :(
I am so sad to hear a asps sister has lost this horrid fight :(
As a mother I cannot fathom the pain you are both in! With all my heart I send love to my sister that has crossed over. An to you an your husband I send love an hugs!
I am glad you are talking to Bonnie an others being ...

Hello Jen <3
Posting fast iPad dis at 5% lol

Are you afraid it is a brain met?
If so make them do it so you can either deal with it or do a huge snoopy dance!
You already are dealing with stuff you don't need that stress...

My 2.3 met in my brain they are telling me was new but no matter. If it ...

Bonnie, my happy meter just exploded lol
Is she the only asps patient responding this way?

I agree with you after the drama I just went thru do not change scan times yet! One main reason a mothers inner and women's inner voice telling you to not do this! Never betray that dear friend :)

Please ...

Oh Hun my heart feels such relief now!

That's what survivors do! We do what it is an move ourselves on the road again!

He is blessed as I an others are to deal one by one with the mets!

I pray that everyone has the strength an looking towards the future an to hell with the past!

Send him my hugs ...

I'm in tears! I was in the hospital! Or so drugged from pain !
I'm so sad an mad I can't believe this :(

Connie in here in LA if you need anything even if it's a 2 AM call :(

Praying an sending you both love!!!!


Hey all, I am very sorry to tell you all that Kevin died last Friday morning ...

Hi all :)
Really fast I'm sleepy
We are operating on left arm met it made a crack in the bone
Dr Brian said take out destructive met an then put a rod in to make sure it is strong
We caught this early an I am glad!
Dr Brian is the man that diagnosed me an operated on my primary in 2009
He is ...

In so much pain.. Hubby was helping
Starting radiation to right arm and left arm
15 I a what they are thinking
I asked about rfa an other he said no it's radiation an it will kill it
He said though ct or x ray first because of the high pain now It maybe a rod needs to be put in
Omg this is a ...