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

[Jorge]

Hi Amanda,

Good luck with your scans. I wish you stable result with the lung scan and clear result in other scans.
Is there any reason that you want to uses sutures but not staples in the lung closure?

[D.ap]

Amanda
I look forward to your post when it's good for you
As Lynette said here's to stable scans

Love
Debbie

[Amanda]

Hello Jorge
Stitched save lung tissue an in some cases stitches can be done
I have thirteen things in my lungs and when they took some out last time about half were just inflammatory nodules.
Because repeated lung surgeries in many cases are done saving as much healthy lung is important

I am praying for good news it has been eight months now for lung scans because of the jaw surgery.. My aim is NED. I have had the other tumors an they were not detected for years an sat silent. i am i think 90% done... i hope an then NED for as long as possible even if it is a week! I dont care its a goal i want to make...
not just for me but for everyone that is doing surgeries to give hope!

I pray END after the two lung surgeries for as long as it can be that way.

xox Jorge how are you doing?

[Amanda]

Helo Debbie
I agree an pray that it comes true for me...
As silly as it sounds i am hoping they go in an say WTH!!! Where are the mets!! The last surgery anesthesia must have destroyed them an they are gone *wink* wouldnt that be great lol

In reality now.. i hope nothing has grown an if it has its 1 to 2 mm only..
I will post back tomorrow <3

[D.ap]

Hi Amanda

Miracles do happen and I am of the opinion good thoughts NEVER hurt!
However I do agree with your reality statement as well.

TTYL
Debbie

[Bonni Hess]

Dear Amanda,
I am sending my most positive thoughts and very best wishes your way for your scans today and holding very tight to Hope for good news scan results which show stable disease with no new tumors and dramatic shrinkage/disappearance of your existing mets. I will be anxiously awaiting your update when your time and the situation allow. In the meantime, keep thinking positive, feel the embrace of all of the special caring and love that surrounds you, and let Hope lead you through today.
With special hugs, deepest caring, healing wishes, love, and continued Hope,
Bonni

[Amanda]

Thank you Bonnie <3
From the day i posted an you got on the phone with me because i was so frightened you are so special to me!

Myself an family love you very much! An when reading posts like this from you i can hear your voice an feel the love!

Thank you for always being here for me <3

[Amanda]

Hello everyone,
well mixed news... Seems my left lung has almost thru my whole diagnosis ben almost stable...
It is the right lung that i had the surgery on that is being a pain in the arzzzz...

I have 3 mets that have grown an in 8 months one grew 4 mm an the others grew about 1 to 2 mm

I am still blessed! I am still thankful i can have these removed! I count these results as still going to be able to live a full length of my life with a HELL Of a lot of surgeries in it...

Plan is as follows...
I see Leland Foshag my lung surgeon on 5/30/ at 2:30 We will discuss what type of surgeries to do,,,
Open lung or the one Ivan does...
Dr Forscher at Cedars said this can be controlled.
The main met we are after is about 2cm an it is on the bronchial an it need to go away!

I find it interesting that growth took place on the side i have had lung surgery before... this brings the question should i have done the lung surgery i did in the past? This was also a concern of my surgeons...
It may be more important to watch mets for a sizable amount of time instead of doing a surgery if the mets were stable...

*** I have spoken to my Onc in reference to the sites of my tumors. I have also spoken to our researcher.. Please it is very important if you in any way feel the primary an other types may have come from an injury speak up! Reply to my post in the starting area of this forum please... It maybe that cells in some people mutate after a vascular injury an it maybe why we have sarcoma It maybe that if this is try we can find out if others have cells that mutate like this without a vascular injury an this would show why there maybe an ASPS type 1 an ASPS type 2...* Our bodies maybe doing this an in most cancers from what i understand cancer cells are really our cells that have been tricked into making themselves cancer.. ****

Anyhow, i will post back as soon as i find out more <3

[D.ap]

Hi there Amanda
In from mowing --2 acres of our 10 acres
I am sorry to hear that the right lung was a non player
The bronchi sounds like a non player for sure
Are the tumors around the ribs that were surgically treated?

***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 ...

Was your rib metastis on your right side as well?
Sounds like you and you doctors have a good plan

Will write later
Love
Debbie

[Amanda]

The rib had one tumor inside an this rib was cracked almost 20 years ago an there was no sarcoma i did this goofing around with friends..
yes all on right side...

So far unless they are missing things an i pray they are not..
i now only have the mets in my lungs an yes the three are going to die ASAP it will happen next month when my lil one is out of school and i can set a plan i am 100% comfy with...
Its weird i get sad for a efw minutes when this happens an then i get dam mad that i have to deal with this again...


There are similar stories its sad no one is seeming to want to help with this this is something that could actually help us!
It is at times the things we think are silly that help a lot that lead to break thru
I am changing my outlook and i am looking for other areas in my body that were injured an i will be now watching them closely! I am shocked that no one else finds this amazing all right side an all injury areas :/
BTW Right lung has more involvement an as stated before i think surgery maybe play a part i think there was always more right sine... an l;eft side no new mets and stable

This cancer is sneaky an if i was a new patient i would at least look into what i am saying i am NOT the only one that has suspected this an i hope the others post this also!

[Amanda]

I am blessed. I am lucky!
I go into the hospital and next day i go home...

Do you know if i could trade my situation with any of these lil ones i would! I told my onc who is the director of sarcoma at cedars in los angeles yesterday!
We are a small group our sarcoma is not researched enough and patients can help by putting lil fires under the researchers / doctors that participate in the meetings to become vocal about ASPS...

Why are they suspected two types of ASPS a 1 an a 2?
This means we have found a ground step!!!

Now lets see what triggers this and does it really stay to one side in most cases? An after it has taken control because amount of tumors only then spread on both sides? what growth are these tumors? Slow fast?
I make my doctor work his brains and he has a beautiful care for sarcoma patients an is also driven! i was pre med and on my way to a dream of WHO and CDC work in viruses.. *Geeky yes* lol

Mine and others suspicion is i have had this or have been genetically thru cell mutation predisposed to this and have been affected by it all my life...
My pregnancy almost 18 years ago woke the devil up...
i am not going to cry more i am mad at it now lol Its how i get thru this i go all war madden on it...

I am researching from ground up many do not do this.. an i hope that people post.. the information you have as a patient is more important in finding a cure then you know... Please, start responding help me to get this information to Yossi and others to help us!

if you know how you get a cancer and what triggers it then you have a huge leap in threatening it or testing to make sure you do not mutate cells an are predisposed to sarcoma...
I am not alone in this suspicion i have spoken with others.. all my information will go to Yossi who if you ever get a chance to talk to you will love! He fights ASPS because someone he loves has it!

Look into the one side spread an the lungs more mets on that side an injuries.. You maybe surprised also at the amount of people that say "OMG i had a feeling about that because my lil one was hurt there years ago" I have heard it from three others already! Please help me to find this out...
my war is easy compared to many i have time to be the war madden and beat this asshat up.. i will make progress and i will make sure at least in a small way a huge foot print in saving our babies and childrens lives happen!

Its from the heart ...
Not for financial gain...
Not for praise in helping or gaining patients as some do..
It is because this is my second family and i am mad and no more lil ones should be lost!

I hope very much my search in this brings an outcome an is researched deeply all i an you can do is try!
Please help me do this xox

[Bonni Hess]

Dear Amanda,
I am sorry to be slow in responding to your posts but we were away from internet access for the past six days since we were traveling and then in a remote area on an extended Memorial Day family outing from which we just returned late last night.
I am so sorry that your scans showed increased growth of three of the mets in your right lung and that there is one of special concern on the bronchial tube that has now grown to two centimeters. I am however very grateful that the mets in your left lung remained stable and that there don't appear to be any new mets. I am grateful too that you have some viable treatment options to remove/destroy the mets. Was your scan a chest/abdominal/pelvic CT and did it extend far enough to include the area of your jaw where you had your jaw bone met resected? When is your open brain MRI scheduled?
Regarding your question/observation about the possibility that a previous injury may have triggered ASPS in some patients and that there may be two types of ASPS, we too have often wondered about these two issues, but have been unable to find or obtain any researched medical data to support and confirm our suspicions. In Brittany's situation, when she was about 12 years old she suffered a very hard kick to the same area as her primary tumor in her left thigh when a player on the opposing soccer team did an illegal high kick. The injury from the hard kick was so severe that it sidelined Brittany from the pain and we consequently took her to our family physician for examination. Other than pain and bruising, there appeared to be no serious injury to her leg and she recovered from the injury and continued to play soccer. About seven years later at age 19 she developed a large painful lump on her left thigh. Devastatingly the diagnostic MRI and following biopsy revealed that it was ASPS. Thus began our long very difficult ASPS journey and very challenging battle with this insidious disease. When we asked her oncologist what might have caused her cancer, he told us that if they knew what caused it, they could cure it. Hopefully your admirable and dedicated initiative to search for, obtain, and document anecdotal information regarding injury to primary tumor sites will lead to the desperately needed cure dear Amanda, and Hopefully ASPS Community members will cooperate in responding to your passionate plea for them to share this critically important anecdotal information.
My most special thoughts and very best wishes will be with you for a positive outcome to your meeting with Dr. Foshag on Friday, and I will be anxiously awaiting your update on your treatment decision for your lung mets.
Take care dear friend and know how deeply grateful I am to you for your dedicated efforts to obtain invaluable anecdotal information from the ASPS Community members on this Board.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello
I saw my lung surgeon an he said things are ok but we need to act soon an we will be making decisions on how to deal with these lung mets....
I posted to Ivan an Olga in hopes of help i am overwhelmed an Ivan knows Dr L an why he goes there an his results well. Trying to read thru this all is as i said overwhelming me

Evidently after my jaw / Led surgery it affected my adrenal gland from stress an hormones they gave me from the surgery..... the CT showed what looks like a cysts on the gland. My Onc said it does not look like ASPS an it also would not have grown this fast... its is already 2CM lol There was nothing int he last scan a few months ago... It will be watched like a hawk though.

We are going to be doing a nuclear bone scan with in the next two weeks. He said that this has other then my lungs and primary seemed to be affecting bones a lot an this must be done before anything else is done or any operations tale place! He said that the jaw was a must to be done ASPS an if we would have done the lungs first not knowing about the jaw that would have been dangerous! So he wants clear sight at what ever maybe there now to make a final plan! He said he wants a picture of every bone in my body... can anyone tell me what this scan is like an will the dye or whatever it is make me sick :/
BTW we all went back and forth *Myself and three doctors* about CAT scans and ASPS... I do not trust CAT scans to be a judge in reference to ASPS because CAT scans from what i have been told work well with fast growing cancers now slow growing cancers. Let me know what your feelings are here an i will fallow your opinions


MY CT's have now been read by two Oncs an two radiologists that are from cancer centers All clear but the lungs an what ever this thing is on my adrenal gland that looks like a balloon :/ A lil one but a balloon...

I will pop on as much as i can to see if there are replies about the bone scan an other stuff <3

[D.ap]

Morning Amanda

I am sorry that this week has brought you anxiety. More anxiety

I found an article that talks about cryoblation
http://www.onclive.com/publications/Onc ... ung-Tumors
I am searching through the forum for Dr Littrups? info as well.
How was the adreneal gland found and when? Did I undertand that that it had been discoverd earlier?
I will write more soon

Hang in there
Love
Debbie

[D.ap]

Amanda
When I hit search"Littrup" came up with this from 2008 in Ivans personel--

http://www.cureasps.org/forum/viewtopic ... ttrup#p677
http://www.cureasps.org/forum/viewtopic ... enal#p6261