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

[D.ap]

Hi Ananda

Wishing you sweet dreams as we wind down to get ready for bed

Love
Debbie and family

[jenhy168]

Happy Valentine's Day Amanda~ Hope you are recovering well.

[Amanda]

Thank you Jen <3

Happy Valentines day everyone! xox

I am still trying to heal three weeks today from surgery...

This surgery was no joke it was intense! I pray no one here has to ever go thru this!

Love and hugs to all!

[D.ap]

Happy V-day to you Amanda
Hope today brought you closer to feeling better

Love
Debbie

[Bonni Hess]

Dear Amanda,
Thank you for checking in and for your sweet Valentine wishes for everyone. I Hope that you had a restful and happy Valentine's Day surrounded by special love and caring. I am so sorry for your long slow recovery from your difficult surgery, but am Hopeful that each day brings more healing and less pain as you move forward to a full recovery with renewed strength and energy. I am Hoping too that by now you have received good news results from the pathology of your resected lesion showing that it was benign and unrelated to ASPS. I will be anxiously awaiting your next update when your strength and energy allow, but in the meantime, please just focus on taking care of yourself as your precious body has been through a very traumatic surgery so you need to be patient and give yourself permission to just rest and take time to heal.
With gentle hugs, deepest caring ,healing wishes, love, and continued Hope,
Bonni

[Jorge]

Amanda,
I'm sorry to hear about the slow recovery. Wish the pain will go away and you can regain your strength very soon.

Lynette

[Amanda]

Sarcoma patients are cool
I reached out to this man who has had the same surgery as i went thru.. I am looking forwars to talking to him because i have a few healing questions an need a lil inspiration in the healing an being myself again category... i am healing so slow

Anyhow, he is super cool sarcoma patient an i wanted t share

https://www.facebook.com/MusicalHOPECampaign

http://www.mademenuclear.com/

[Amanda]

Wow
http://www.onclive.com/onclive-tv/Dr-Va ... r-Sarcomas


"""Brian A. Van Tine, MD, PhD, Assistant Professor, Washington University School of Medicine in St. Louis, discusses the use of arginine deiminase (ADI-PEG20) for the treatment of sarcomas.

Researchers have identified a metabolic defect in the urea cycle, which involves a drug called argininosuccinate synthase 1 (ASS1). Argininosuccinate synthase is methylated off (not expressed), allowing researchers to develop a metabolic therapy to purely treat cancer.

Van Tine and his team used a drug called arginine deiminase (ADI-PEG20) to destroy all arginine in the blood stream and starve cancer cells. This new finding is important because it is the first dual metabolic therapy for cancer that should be cancer-specifc because the first drug (arginine deiminase) only effects cancer cells and the second drug only becomes important when the first drug works.

The hope is that this therapy will be cancer-specific and therefore much less toxic than chemotherapy."""

[D.ap]

Amanda

I am 50 plus
I lost my parents--my mom in 1992 and my dad in 2001.
I still miss them very much and I think about them often.

Time will help in the healing. It just won't feel that way in the beginning.
Family is where you can drawl from and find the strength to endure another day

May your day be filled with family and love.

Much love
Debbie

Hi there girl

Music is very therapeutic I whole heartily agree.
Let us know how we can help

Love ya

Debbie

[D.ap]

Hey all
Amanda's idea for possible substitute of chemo?? help me out Amanda

The national library institute of health link

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2998341/

Love
Debbie

[Amanda]

It was just something i found cool that they are looking into better ways to help cancer patients then chemos and
i hope soon that we wont have to do chemo any longer
its a hope post not a suggestion of use

[D.ap]

Amanda"Sarcoma patients are cool
I reached out to this man who has had the same surgery as i went thru.. I am looking forwars to talking to him because i have a few healing questions an need a lil inspiration in the healing an being myself again category

... i am healing so slow

Anyhow, he is super cool sarcoma patient an i wanted t share

https://www.facebook.com/MusicalHOPECampaign

Hows the jaw area feeling ?

Take it slow. You've been through alot!

Love,
Debbie

[Amanda]

I am resting as best as i can an i am in pain i had to walk up five flights of stairs my landlady decided that she would save money an have them come monday an not get it fixed on sunday..
I had to take my son to the doctor on monday...

This is so slow to recover from an I again want to stress anyone having this to the extent i have need ot be ready mentaly an phisicaly an i will do all in my power to make this happen for any of our ASPS paitents... then what i am going thru will be worth it even more then them getting all of what ever it was in thereASPS or ?

Leg hurts even from going down the stairs slowly an jaw hurts because even if i rested every flight going up it raided my BP an stressed me out...

I am pissed an am taking norco every 4 to 5 hrs an it is not helping * I take low doses 5 mg*
Tonight at bed time i will go to 10 mg to try to sleep...

why are some so fing cheap an thoughtless!!!

On the good fromt it has motivated me to buy so i will start to look an then move there is always a lil ray of sunny shines

[Bonni Hess]

Dear Amanda,
Thank you for thoughtfully sharing the links to the inspirational story of Osteosarcoma survivor Charlie Lustman which is a source of such great Hope and inspiration. I Hope that you are able to receive some helpful information from him to help you with your healing from your very difficult jaw surgery experience which you share with him. My heart breaks and I am so deeply sorry that you are having such a painful, long, and difficult recovery from the surgery, but Hope that you will be patient with your body and yourself as your precious body has been through so much and healing from such a major invasive surgery takes time and patience which I know must be very frustrating for you because you are such a normally active and energetic woman. I am Hoping that by now that you have received a diagnosis of what the jaw lesion is, and I am holding VERY tight to Hope that it has been definitively determined that it is NOT an ASPS met, but if it is, that it has been completely removed with good margins. I will be anxiously awaiting your update on your surgery and the results when your time, pain, and energy allow, and in the meantime, I am holding you very close in my heart and thoughts and sending you my most positive thoughts and very best wishes for relief from the post-op pain and a full recovery with renewed strength and energy.
Reaching out to gently embrace you with warm hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

[D.ap]

Amanda"Sarcoma patients are cool
I reached out to this man who has had the same surgery as i went thru.. I am looking forwars to talking to him because i have a few healing questions an need a lil inspiration in the healing an being myself again category

... i am healing so slow

Anyhow, he is super cool sarcoma patient an i wanted t share

https://www.facebook.com/MusicalHOPECampaign

Hows the jaw area feeling ?

Take it slow. You've been through alot!

Love,
Debbie

Hey Amanda

Here is a link to scaring

Olga has often referred to the massaging of the scared area. possibly to keep muscle tone working?

http://www.livestrong.com/article/50945 ... formation/

Please run this by your surgeon before you apply the massage techniques

Keep the faith

You've not gotten the results back yet?

Love
Debbie