Chelsea from Florida

ASPS patients post updates here, including tales of success :)
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mrsp&chelc
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Posts: 8
Joined: Sun Apr 06, 2014 11:45 am

Chelsea from Florida

Post by mrsp&chelc »

Greetings from sunny Tallahassee Florida!

My name is Paulette and my daughter's name is Chelsea. Chelsea was diagnosed with ASPS on December 12, 2012 at the age of 19. If you've read my blog post (Chelsea posted the link in the guestbook earlier) that I dedicated to her yesterday and you're now reading this, no doubt you've noticed my mistake. I stated that Chelsea was 18 at the time of her diagnoses when in fact she was 19. I'll be the first to admit that my memory isn't what it use to be! :D

As most of you can attest to, ASPS has changed our lives in a pretty drastic way! I've written some of the particulars of Chelsea's case in a blog post because I think it's important for ASPS to get as much attention as possible. For one thing, we need more funds for research and secondly, awareness is a powerful vehicle for change. This is the second time cancer has touched my life, the first being the loss of my mother to stomach cancer. So, I feel I have a duty to bring awareness to it in order to inform others and to help in the fight to find a cure. If you choose to visit my blog to find out more about Chelsea's case I would love it if you left a comment. Though I have a small audience, it's still an audience and I want people to know that you (the ones who deal with this disease daily) are here! Here's the link to the post: http://www.myurbanpastures.com/2014/05/ ... l?spref=fb.

If you would prefer not to view the details of Chelsea's particular case on my blog we'll be happy to answer any questions you may have here on the form. Chelsea and I are looking forward to getting to know each of you better.

Sincerely,
Paulette
Olga
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Location: Vancouver, Canada

Re: Chelsea from Florida

Post by Olga »

Paulette, thank you so much for sharing! We will of course read the blog and ask the questions we get here and there, we are such an information junkies here - it became an obsession of sorts for many here to hunt and grab all the ASPS related info and drug it here, in hope we or someone else could use it at some point...Your daughters primary location is very rare and better awareness about the risk of a very heavy bleeding it can cause might very well save someones life at some point!
Olga
Amanda
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Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Chelsea from Florida

Post by Amanda »

Hello,
I went and tried to post but i would have had to make accounts in google :(
YOu may find it easier to chat here an i know it will be easier for people to refer you to post an links easier here... I am so sorry you ahev ASPS also! But, you found a loving an supportive forum an without this forums advice i would have gone on chemo an hurt my immune system an would be very ill now because of it! Its a blessing here and welcome to your small an supportive and loving family! <3
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
D.ap
Senior Member
Posts: 4151
Joined: Fri Jan 18, 2013 11:19 am

Re: Chelsea from Florida

Post by D.ap »

Olga wrote:Paulette, thank you so much for sharing! We will of course read the blog and ask the questions we get here and there, we are such an information junkies here - it became an obsession of sorts for many here to hunt and grab all the ASPS related info and drug it here, in hope we or someone else could use it at some point...Your daughters primary location is very rare and better awareness about the risk of a very heavy bleeding it can cause might very well save someones life at some point!
Hi Paulette
It's really nice to meet you and Chelsea
This common thread that we all share does indeed make us feel like crazed human beings as Olga pointed out. Like junkies Always wanting/needing to know more and more about this monster/devil we call ASPS .
Does Chelsea have all her scans scheduled with her oncologist ?
The scans will help to give you a little piece of mind
Thanks so much for your blog . You girls make a wonderful duo :D
Keep the faith

Love
Debbie and family
Debbie
D.ap
Senior Member
Posts: 4151
Joined: Fri Jan 18, 2013 11:19 am

Re: Chelsea from Florida

Post by D.ap »

Another question Paulette

How was Chelsea considered stage 3 ?
Just curious. I believe that asps isn't staged ??
Help me Olga . Bonni
The staging helps to determine treatments?

http://surgpathcriteria.stanford.edu/so ... ading.html

Love
Debbie
Debbie
mrsp&chelc
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Re: Chelsea from Florida

Post by mrsp&chelc »

Amanda, I'm so sorry you weren't able to post a comment on the blog! I'm not sure how to fix that but I'll look into it. Thank you so much for your warm welcome and words of encouragement! :D

Debbie, Chelsea has had quite a few scans for which we're very grateful for because honestly, we had NO idea what she needed or how she needed to be followed until we found this forum. Her oncologist had informed us very early on that this disease, as she put it, "is notorious for rearing it's ugly head again." So, her GYN oncologist has been diligent in ordering scans. She's being followed very closely by both the GYN oncologist and the Urologist oncologist. With her primary doctor being the GYN oncologist...Dr. Morgan. Dr. Morgan consults very closely with the sarcoma specialist at Shands Hospital in Gainesville Fl. which is where she practices and several Sarcoma specialist at MD Anderson Hospital. Chelsea's not due for another MRI of the brain for 4 months and her last CT scan with contract of her pelvis and abdomen was 2 months ago. Thus far, she's been having scans of her lungs at least every three months which included a PET scan. So far all scans have been clear. Her next scheduled appointment is in June and at that time we plan to compare notes with the scans that she's had and the information we've found on the form. We just want to double check to make sure the scans she's had of her lungs are the right ones for early detection of lung mets. I'm so grateful that Chelsea's doctor has been diligent in her approach and research of this disease. She's brought us a long way and for that we're eternally thankful! However,this forum has been a "God sent" opening our eyes to the need for us to be just as diligent and informed. We consider ourselves blessed to have found our way here!
mrsp&chelc
New Member
Posts: 8
Joined: Sun Apr 06, 2014 11:45 am

Re: Chelsea from Florida

Post by mrsp&chelc »

D.ap wrote:Another question Paulette

How was Chelsea considered stage 3 ?
Just curious. I believe that asps isn't staged ??
Help me Olga . Bonni
The staging helps to determine treatments?

http://surgpathcriteria.stanford.edu/so ... ading.html

Love
Debbie
Debbie, just to clarify somethings; 1. Chelsea's oncologist isn't a sarcoma specialist so I can only speculate that, when she gave the diagnosis, she wasn't aware of this information. 2. Neither were we aware of this information seeing as though we had NO prior knowledge of ASPS then and very little now therefore, I can not answer your question. Please keep in mind when asking us questions that we're newbies. Prior to stumbling upon this forum, we considered Chelsea to be cancer free even though her doctor hesitated to confirm it. To some extent we're still in the "shell shock stage". The more we discover, the more we realize how little we actually know and it's frightening!
D.ap
Senior Member
Posts: 4151
Joined: Fri Jan 18, 2013 11:19 am

Re: Chelsea from Florida

Post by D.ap »

Paulette

I so understand the shell shock feeling
Your doctor sounds like a true angel here on earth as she has gone the extra mile for Chelsea!
I still feel like a newbie myself
Realizing that I am a beginner keeps me humble
The pathology report is created after the tumor is removed
It tells the size , location , how much of positive margins were accomplished ect
If you haven't already be sure and keep a copy as well as copies of the scans in a notebook
The scans come with a written report as well , to have as Chelsea's file

You are all doing great in educating yourselves as well as being so proactive AND so very positive
Keep up the good work

Much love
Debbie
Debbie
jcs2007
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Posts: 135
Joined: Mon Sep 08, 2008 2:59 pm
Location: florida

Re: Chelsea from Florida

Post by jcs2007 »

Hey, I just wanted to welcome you to this very informative website. My 19 year old son is battling asps too and we have received great care at Shands and we currently travel to Miami for the ARQ197 trial. My son has lung ct every 4 mos, brain and bone scans yearly. We just did a pulmonary function test too since he just had radiation treatment on one lung met. I wanted to encourage you and Chelsea to keep being proactive and this site provides a lot of great advice and support.Take care
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