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

Those who lost their battle with ASPS :(
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R. :)

Post by Amanda »

Hello Olga :)
They are moving them even more now and yes it is what you said they are watching to make sure and say that this will be my life to always be watching every where for ever ...

I went to my healthy doctor and he used a thing that has a laser or some lights in it.. it was weird and freaked me out and i thought "Oh ya this will work hehe" I am 100% by the next day in my hip that was so painful it was waking me up and elbow and my calf has no pain now so much for my being so skeptical lol I should have known every time he works on me or gives me some thing to do or take it works

They are saying the weight gain was from not moving around like you thought and i also do not smoking now :)
i am dropping the weight very slowly and looking to what ones of my friends will get my fat clothes lol :)

Olga wrote:Amanda, I have seen on the general SA board that some oncologists use the alternate schedule for the people with the slow growing/stable sarcomas - once in 3 month CT and the next 3 month an X-Ray.
The other thing that I wanted to suggest is the physical therapy - probably you are gaining weight because you avoid walking as much as you did before? I remember that you were complaining about the consequences of the radiation treatment. May be in the meantime that you are having no treatments and less scans - you might concentrate on the improving the walking/regaining flexibility...
“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
Bonni Hess
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Posts: 1678
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Dear Amanda,
I am SO VERY happy for you and am celebrating your VERY GOOD NEWS !! :-) of continued disease stablity with great joy and strengthened Hope, as I know that you and your young son must be doing also. I am also SO VERY happy to have you back actively participating on the Board again as your bright positive spirit and kind, caring, and supportive presence have really been missed :-( the past two months. I am sorry :-( that you will have to undergo yet another surgical invasion of your body with a procedure to remove your gall bladder, but I am grateful that it can be done laproscopically which is minimally invasive and that it is being done by your very competent and trusted oncologist. Hopefully the removal of the gall bladder will resolve your abdominal bloating and pain and you will feel much better. Please know that my most special thoughts will be with you for a very successful outcome to the gall bladder procedure and a speedy recovery. Take care, feel the embrace of my happy hugs, and know the strengthened Hope that your continued good news brings to all of us in the ASPS Community on our shared roller coaster journeys with this challenging and unpredictable disease.
Sharing the special joy and relief of your wonderful scan results with much happiness, caring thoughts, and continued Hope,
Bonni
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

My Team of Oncs...

Post by Amanda »

Greetings
I wanted to post this because i have been asked this a few times and want it where people can find these names fast and not have to wait... i hate waiting ;)

I have four Oncs and i will give them all to you...

This is the Onc that removed my primary in my right calf. He is in my opinion the best ...
Dr Earl Brian
310-423-9887

This is the radiation Onc and also a sarcoma survivor and full of love for his paitents!
Dr Behrooz Hakimian
Cedars-Sinai Hospital Los Angeles Ca

My Main Onc and is dam good with the drugs and also see's other ASPS paitents here in California. he is mellow and very nice.
Dr Charles Forscher
310-423-8045

My Chest Onc that did the operation on me for a partial removal of the 8th rib and five things in my lungs is:

Leland J Foshag MD
11818 Wilshire Boulevard Suite 200
Los Angeles, CA 90025
Phone: (310) 479-1215

Dr Foshag spends alot of time with the paitents. He is a good person and everyone that i have given his name has called me and been happy that they saw him. When he heard my msg he called me back and spent over an hour on the phone with me before he had even seen me as a paitent. He make me feel safe and cared for and the last thinng i remember before my operation was his face smiling at me ... He is special!

His office is at:
http://www.theangelesclinic.org/
Last edited by Amanda on Fri Mar 18, 2011 7:08 pm, edited 1 time in total.
“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
Bonni Hess
Senior Member
Posts: 1678
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Thank you for sharing all of this very helpful and important information Amanda. Your special efforts and thoughtfulness are deeply appreciated.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni
Ivan
Admin
Posts: 659
Joined: Mon Jun 26, 2006 8:31 pm

Re: Amanda R :) from California - Dx 2009

Post by Ivan »

Happy Birthday, Amanda! :mrgreen:
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Thank you! :)
Yay at work on my birthday hehe
I am thankful i can work though now and that is a huge gift :)
“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
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Just a lil hello to everyone and letting everyone know i am feeling some surgery pain but being treated :)
My scans will be read on7/12/11 an i will post as soon as i know how they look.

I miss some names that i have not seen posting and i pray that you are silent because you are so busy with summer an that things are going well.
As usual i am worried and I hope that all of you are still at least lurking because I kinda need my ASPS friends around me, Your caring words and advice has helped me thru three tuff years :)
“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
DottyW
New Member
Posts: 68
Joined: Mon Oct 19, 2009 9:40 pm

Re: Amanda R :) from California - Dx 2009

Post by DottyW »

Amanda,
I'm glad that your gallbladder surgery was successful and pray that all of your scans will be encouragingly positive.
I have not posted Jordanne's status lately as we are waiting for some news on Tuesday for treatment options. She is no longer in the Cediranib trial because she has had some growth in a lung tumor as well as apparent tumors in her hip, rib, arm and skull. It has been a long few weeks. I'll be posting an update soon.
She has a dinner date with Brittany after her doctor appt at the Seattle cancer care alliance on Tuesday. I think that will be an encouragement to her. It's so good for each of you to have the support and encouragement of others who are going through the same stress and anxiety from living with the uncertainty of this disease. Jordanne also was able to meet LCMA on our last trip to Bethesda which gave her another friend in the community to commiserate with.
Know that I pray for you often and hope that you continue to post your sunny, uplifting comments on this site.
Although it's natural to get down at times, don't allow cancer to keep you down for long. Keep bouncing back.
God loves you!
Dotty
Ivan
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Re: Amanda R :) from California - Dx 2009

Post by Ivan »

Hey what gall bladder surgery? Amanda, you haven't been keeping us up to date :?:

Glad it went well, though.
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Hello Dotty :)
I am glad you replied! <3
I didnt get the surgery they said it may have been there along tiome and they will watch it. i am so glad because i am so sick of feeling like a turkey! I dont feel very well from my other surgerys an will be stopping being a medic soon. I cant take the phisical stuff any more.
How are they tests did you get the results yet? You are both in my thoughts also and prayrs!
How is she feeling and i am so happy she met face to face with Brittany!
My scans will be in July around the 15th an i hate the feeings of not knowing what will happen next!

*hugs to you both*
“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
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

I am sneaking about having sx done lol ;)
You would have seen in it FB...
Stupid sinus infection is back again and now on a new drug *sigh*
Dizzy feeling gross an ear is all stuffy so hearing is weird. But, no surgerys ...
Ivan wrote:Hey what gall bladder surgery? Amanda, you haven't been keeping us up to date :?:

Glad it went well, though.
“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
Bonni Hess
Senior Member
Posts: 1678
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R :) from California - Dx 2009

Post by Bonni Hess »

Dear Amanda and Dotty,
I have communicated with both of you through personal e-mails, but just wanted to add my support and best wishes to you on the Board. I am so sorry for all that you are going through with your continued surgery pain Amanda, and I am devastated about Jordanne's failed Cediranib treatment and the heartbreaking diagnosis of her multiple new mets Dotty. I am grateful that we all have this Board to reach out to the ASPS Community and to each other for critically important shared information, strengthening support, and friendship, and am very thankful for your valued participation on it. I will be anxiously awaiting updates from both of you regarding the two different situations while holding VERY tight to Hope for a good and speedy resolution to your pain Amanda, and for the successful treatment of Jordanne's new mets. Brittany is really looking forward to being able to share some special time together with Jordanne today after Jordanne's oncologist appointment. Besides this insidious disease, they share so much in common including their beautiful smiles, and their incredible emotional strength, courage, determination, invincible positive attitudes, and bright spirits.
Please take care dear friends and know that you are held very close in my heart and my most caring thoughts.
Reaching out to share special hugs, deepest caring, healing wishes, and continued Hope,
Bonni
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Greetings its that lovly time of the year again for mt to get scans an we will be doing alot this time...

MRI brain and sinus and ear canals with contrast. I will have to be put under i am freaking about being in that dam tube already :(

CT Pelvic, Abdom, chest,neck

All this will be ovre the next two weeks i will post back as soon as i get results..

Hugs to everyone!
“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
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Scans July 11th 2011

Post by Amanda »

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 :/
“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
DottyW
New Member
Posts: 68
Joined: Mon Oct 19, 2009 9:40 pm

Re: Amanda R :) from California - Dx 2009

Post by DottyW »

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
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