Amanda R :) from California - Dx 2009 - RIP March 2015

[Amanda]

Hi
I ask every time i see an Onc an they say "We just dont know" or some thing to that effect an they also seem upset...
I draw the possible conclusion that is could be hormones because of the age differences.
This is not a new frustration its just getting worse and worse...

If someone is compiling this an making charts for us please share this! It will help new patients and old patients an taking this to there Dr an asking question will also help them...

If someone isn't doing this then i may do it.. I asked my husband who is doing some security work for MAYO if they know of a program that is good for this and i will go buy it.. then share this with out ASPS family...

Few things though that are no no's!
Names, states an birthdays are NOT allowed!
Anyone can say they do not want to do this an they wont be in this.. But i can't see anyone here wanting to not help an not want this it could be a huge help! Anything else they want to keep to themselves must remain quiet and NO DRUG companies or ANYONE other than our researcher from this forum has rights to this! I will have a lawyer draw up a legal wall to protect us!

I am not sure what this will take time wise so i will need to see if i can do this or do this alone maybe too hard...

Lets see what everyone else thinks <3

[Amanda]

BTW HAPPY MOTHERS DAY! everyone <3

[D.ap]

Happy late moms day to you as well Amanda!

The way I see the doctors outlook is:

A GOOD doctor is in the profession because they truely care for their patience.
When they look at stats for ASPS patients they see not very good out comes. So they try and be honest to their patient.
Stats are based on number of patients to a given outcome. DX to death
ASPS does not have as many patience as say breast cancer or leukimia? So the stats are skewed? They look dismal?

The patient needs to veiw the situation as : the sarcoma is a slow moving sarcoma. Yes it can be serious however I have some time to keep ahead of the situation by:

A) Scans--keeping tabs to where the little devils are hiding
B) surgeries-to keep them from causing life threatening issues
C) Chemical/systemic treatment:to be persued if tumors can't be removed and/or too many to be imediately removed because of life threatening placement of tumors

This is in a nut shell and I would so like some input!

Love
Debbie

[D.ap]

Amanda
These folks are working for us
We connected with a Dr Schwartz who has since moved to ?
Help me out Josh..

http://en.m.wikipedia.org/wiki/Memorial ... cer_Center

http://en.m.wikipedia.org/wiki/Alveolar ... rt_sarcoma



Stay strong and know that we are here to talk to whenever you need to..

Love

Debbie

[Amanda]

HI
I am very confused by this post lol
Who is this doctor?

These places are not covering what i am talking about at all sadly..

There is no other clinical trial info other then two drugs or patients experiences with these drugs. Not only clinical trial choices but surgery only information. Ages or people.. so so many things. It if not for Wiki it is for us ...

[D.ap]

Hi Amanda .
I just received your post. Dr Schwatrz is/was on the east coast at Sloan Kettering.
Connie and Kevin have west coast connections with an ASPS sarcoma patient doctor
I will research and get back to you in morn
People across the world are working as fast as they can.

Love

Debbie

Ps what are your concerns?

[Amanda]

I was suggesting this not concerned :/ I am re reading trying to figure out what went weird with this lol

This information would be for any ASPS patients to have as a spreadsheet to help them as they read these forums an make decisions...
From OUR ASPS patients an to help them..

[D.ap]

Amanda

Ok I think I see where you are coming from.
What I think needs to happen is obviously we need more input from patience AND doctors
If someone could create a question air that we could answer and then consolidate the information as a report ??

Between patients and doctors we could begin to maybe begin a spread sheet data gathering to begin to understand / treat ASPS

Lots of love

Debbie

[Amanda]

ASPS patients not doctors...

stats what everyone did an log these things and then create a spreadsheet...

***Female> radiation x 33 to primary site after sx> surgeries x 4 rib, right lung, right jaw, Primary tumor 5.76 CM in right calf> lungs few mets stable less than 15> Chose no chemo< 5 years out form DX** close to this ...

a cross reference i can do for them if they want on how many did a drug here or radiation or whatever they wanted to help them see things... If they mailed me i could quickly get the stats an e mail it to them...

Not about life and death stats of what the internet and doctors say

Doctors have no place in this at all and this as i said is not for doctors it is for the patients...

This is why i am wondering why the doctor you are talking about an Wiki... I would NEVER share this with them ever! In Fact thinking about not doing this at all now :/ If this left this forum and was used by a doctor i would have filed suit and never would i have ever given to Wiki asshat...

Its very hard when diagnosed to file thru this site and to have this would have helped me a lot and i think others that are already feeling very overwhelmed it would have helped them also...

I wont be doing this now with the idea it could be used in other ways that would benefit them and not just our patients...

[D.ap]

Amanda

Don't be discouraged. I think your ideas are excellent!
Keep them coming
Debbie

[D.ap]

I thought I'd share because this is what we want from this forum.
And most of all , you.

Love
Debbie

safe.jpg (24.56 KiB) Viewed 3992 times

Ps. I know from your previous post that you are film savvy
Pretend I am Shirley McClain in "Steele Magnolia"

PM me when time allows

[Amanda]

lol <3
This is my home i feel comfortable here. I worked in film for years an i also know your heart is so in the right place. It was a mix of words is all hun <3

I think that would be the best to help everyone but i need to really think about time i would need to do this alone ...

I may still do it things like this come easy to me and it would help so many people...

Our researcher would get all this information though because he is our guardian angel



Anyhow, back to topic...

My scans are on the 22nd and then i will walk out with my MRI open approved so i can get that also

I need to find a dentist to get my teeth fixed an i am excited about that ...

I am off to sleep i had to take 5mg NORCO i some how lighty twisted my leg that i had surgery on last an it hurts bad..

Hugs to all! <3

[D.ap]

So good to hear from you
TTYL

Sweet dreams
Love
Debbie

[Amanda]

I would like to know if any one else has noticed that the tumors we have had are in places we had trauma in our lives... Large bruise or any injuries?

For me three places were the main sites of trauma in my life an the tumors were right there ...

Anyone else? I ask for an important reason...

[Amanda]

Hello
Tomorrow is the day of scans...
I have also left a msg for my surgeon to schedule an appointment to set up the first of two lung surgeries to remove everything he can find!
I will also make sure that when he does do work in my lungs he uses sutures and not staples unless it is a needed thing...

I will post back when i get home about the scan results