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

[Amanda]

Thank you Dotty!
*hugs to you both*

Amanda,
I'm sorry thatyou have to go through the scanxiety that all of you strong, courageous people do with this disease. I'm sorry that you are dealing with pain in your leg as well as other areas. I will be holding you up in prayer that all will come out with no new disease.
Blessings,
Dotty

[Ivan]

Greetins everyone!
I had my six month CT scan no contrast and it showed stable for the 11 things in my lungs all in the mm size. I will be scanned again in six months...

Pre report clear CT no contrast abdom, pelvic, neck brain. *We found a brain* hehe for brain we are looking also at sinuses i am still in pain fron the sinusitis ,,,

Still healing and also trying ti deal with the problems i am having from surgerys..

We are wating an watching odd pain on my right knee above where my primary was. I am getting an MRI of my right leg soon so if there is a problem i will post but it is kinda hard at times when i walk :/

ASPS Primary is not very invasive - I wouldn't worry about it. Besides, it wouldn't hurt unless it was so large that you could see it, and it was physically pressing on something.

In reality, imagine how horrible life would be if you didn't have scans like back in the day when they didn't exist. You could be dying, or you could be in complete remission - and you'd never know. Now that's a scary thought.

Congratulations on continued stability!

[Amanda]

Hi Ivan
The pain behind my knee above where they removed the 5.75 cm bolder from my right calf. I agree i am sure it will be ok but its the radiation that i had that is concerning me to be honest ...

Thank you for the congrats Seems it does this some times for good *I Hope* It has with others so i am praying it will with me also...
I flipped out about 11 things in my lungs because when i was first diagnosed i had 6. But, i also smoked like a train and they an I think that they were just hidden by smoking possibly. Either way stable but want them all gone now and on the war path to have then all removed! I have a feeling though Dr Foshag will say not now he knows his stuff an so does Dr Forscher i just at times have trust issues an i think everyone does that is pro active with there cancer.

I am blessed to have the team of doctors i have had and be able to be on this forum and learn and have suport!

[Ivan]

Amanda, how big exactly are the 11 visible nodules?

[Amanda]

Hi Ivan
all mm sizes an when they did go in before and took five things out half were not ASPS. There is question if an how many are asps an dorment if so and blaa blaaa... *sigh* But Foshag is my lung god an i will see him friday an then post back so others can see whats up
I still need the brain MRI an i have never had the contrast. Did the contrast bother you? I cant co the CT contrast now it makes me sick...

[Ivan]

Hi Ivan
all mm sizes an when they did go in before and took five things out half were not ASPS. There is question if an how many are asps an dorment if so and blaa blaaa... *sigh* But Foshag is my lung god an i will see him friday an then post back so others can see whats up
I still need the brain MRI an i have never had the contrast. Did the contrast bother you? I cant co the CT contrast now it makes me sick...

I've never had any side effects to the contrasts other than the weird feelings they warn you will occur.

So what were the nodules they removed in the past?

[Amanda]

Hi Ivan,
They were not cancer he said i guess maybe from when i was sick as a lil baby i had a very bad upper resp. He also said just being in Los Angeles * I hate it here btw* could creat these ... I see him today again so many questions an i will hope he says good stuff i will post back either way.. If he can take them all out i will be asking him to remove them growing or not.. dont know if he will though :/

I just left Dr Brian and he said the pain in my right calf and knee is fronm the 33 radiation treatments. *Ahh the gift that keeps giving* I will do PT to help and we are going to do our six month MRI also but it has been fine sence the primary was removed. I have had a 3mm thing there nothing for i think two and a half years now :/

Dr Brian told me and i hope that others are also reading this...
He has some paitents with ASPS that this grows slow and they just take the tumors out as they find then the paitenst are doing great! I know what we all see on line are the hard stories and there are some stories we have in this forums of many many tumors just going dormant or shutting off for how ever long they want to. Also remember many that are ok are in there lives not dealing with ASPS and do not post so you dont see the sunny side alot! Never let hope leave and if you do read the area in this forums with survivoes *I do* and what i said over and over! There is NO reason why this couldnt also be you!

There are people that are fine and just having surgerys there are people that there tumors just stopped! There are people the doctors told they had no hope they are walking around still years later! You are an individual!
Hope, strength and love! Never let them go away! An if you loose them you take them back!

[MANIA]

Amanda it is great to feel Your spirit. I tottaly agree -never let hope leave!
Big Hugs to You!

[Amanda]

{{{HUGE HUGS BACK}}}}}

Amanda it is great to feel Your spirit. I tottaly agree -never let hope leave!
Big Hugs to You!

[Ivan]

Hi Ivan,
They were not cancer he said i guess maybe from when i was sick as a lil baby i had a very bad upper resp. He also said just being in Los Angeles * I hate it here btw* could creat these ... I see him today again so many questions an i will hope he says good stuff i will post back either way.. If he can take them all out i will be asking him to remove them growing or not.. dont know if he will though :/

I just left Dr Brian and he said the pain in my right calf and knee is fronm the 33 radiation treatments. *Ahh the gift that keeps giving* I will do PT to help and we are going to do our six month MRI also but it has been fine sence the primary was removed. I have had a 3mm thing there nothing for i think two and a half years now :/

Dr Brian told me and i hope that others are also reading this...
He has some paitents with ASPS that this grows slow and they just take the tumors out as they find then the paitenst are doing great! I know what we all see on line are the hard stories and there are some stories we have in this forums of many many tumors just going dormant or shutting off for how ever long they want to. Also remember many that are ok are in there lives not dealing with ASPS and do not post so you dont see the sunny side alot! Never let hope leave and if you do read the area in this forums with survivoes *I do* and what i said over and over! There is NO reason why this couldnt also be you!

There are people that are fine and just having surgerys there are people that there tumors just stopped! There are people the doctors told they had no hope they are walking around still years later! You are an individual!
Hope, strength and love! Never let them go away! An if you loose them you take them back!

Yeah, that's pretty much what I've been doing. Aggressive surgery is a good treatment for ASPS.

[Amanda]

Hi Ivan.
I think when it is caught at a stage, area, amount an size it can make it easier...

Yeah, that's pretty much what I've been doing. Aggressive surgery is a good treatment for ASPS.

[Amanda]

+Just a quick hello to everyone I am doing well so far though i do have some chest an leg problems they dont stop me they only slow me a lil.. I am doing well as far as i know..
I will be having scans in Jan 2012 *First time i used 2012* hehe I will post back after i get them.. I am praying for stability and nothing new...
Hugs to everyone i read here every few days to see how my lil family is <3

[Amanda]

Hello everyone,
After a week of freaking out and crying over being possibly not stable i spoke to my Onc that ownes my lungs.. He said that there are no new mets and that the largest one is still 9mm that maybe two or so grew 2 mm if at all in six months he feels i am stable because it maybe film :/ Also he said out of the five things he took out when he was in my lungs two were not even cancer. He said we will see in six months. I asked if i did have to have surgery were any in a bad area and he said no
I will post back in six months my next scan results.

MRI leg showes clear no ASPS... Dr Brian said he was very happy to see that after all this time!

What some may not know is my going on a chemo is not realy an option for me... In fact i will never be going on a drug! I have a bunch of viens in my brain in a cluster and it makes me a huge risk for bleeding... I am blessed so far and i pray i stay as i am.. or that they can allways operate...

*hugs and love to all my sarcoma family*

You are in my heart an mind every day!

[Amanda]

I looked at my old post and saw a reply from Mania :*(

I miss and love you!

[Bonni Hess]

Thank you for sharing this very good news Amanda Did you have chest/abdominal/pelvic CT's, a leg MRI, a bone scan, and a brain MRI, or are you just being followed with chest/abdominal/pelvic scans and leg MRI every six months?
Enjoy a beautiful, happy, and relaxing springtime and summer and I'll look forward to more and continued good news from your scan results in September!
Sharing the great joy and relief of your good results with happy hugs, special caring thoughts, and continued Hope,
Bonni