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

[Bonni Hess]

Dear Amanda,
As Olga said, Brittany had a very successful and sustained response to RFA to a small bone met in her left tibia in 2005, so that may be a very good treatment option for your shoulder met which you should discuss with your oncologist as soon as possible to ensure treatment at the smallest size. Rest well and pain free.
With deepest caring, healing thoughts and wishes, lots of love, and continued Hope,
Bonni

[D.ap]

Hi Amanda

I tried to post but phone locked up.
I am so sorry for all you are going thru.
I am glad for the plans to get everything in order.
Please take care of yourself
Love
Debbie

[Amanda]

Dear Olga
I have been drugged an at times I miss replies or to thank a dear friend that is going thru a battle also an has taken the time to reply to me!
Thank you from my heart for your support an amazing knowledge an for helping my life to be prolonged!

I just wanted you to know that all you post I read an go to my ONC with an it has kept me alive an my love to you all!

You are my angels <3


PS I will speak to them at a later date about this med

There are some problems with Zometa (or any biphosphonates) - in some patients they lead to an osteonecrosis of jaw. Amanda might need to wait for awhile before starting them as her jaw continued to heal after the recent huge surgery.

[Amanda]

Dear Bonni & Olga <3
They want me to start Thursday an I am three weeks out an I have not healed enough in my opinion on the right shoulder.

So I am as both of you suggested asking these thinks of Dr Hacemian spelling it wrong hehe
He is my same loving hugging radiation dr an is very into all you are both speaking of I want the left sholder focus first so I have left a call for Dr H to call me as soon as he can
He spoke when I saw of him stopping this pain and getting started right away so I bet it will be three treatments to left shoulder. I want more then just radiation an I am sure he has some thing up his sleeves an I will post it as soon also find out

To try an give you a visual if you looked at my shoulder joint area an not sure if it is C or a moon
Dr Brian and Dr H seemed calm yet said we need to act fast while small

This exact acting fast while small will me my like mantra

Ok cherry Popsicle an then bed
Thank you for always being there' for me
Love you

[Amanda]

In so much pain.. Hubby was helping
Starting radiation to right arm and left arm
15 I a what they are thinking
I asked about rfa an other he said no it's radiation an it will kill it
He said though ct or x ray first because of the high pain now It maybe a rod needs to be put in
Omg this is a nightmare

[D.ap]

Hi Amanda
I am so sorry to hear of your pain level

So the rod is being suggested why?
The X-ray /ct showed a growth in both shoulders?
Write when able
Hugs
Love
Debbie

[MarietjievdMerwe]

Dear Amanda,
So so so sorry to hear about your pain.
Hugs.
Marietjie.

[Bonni Hess]

Dearest Amanda,
My heart is breaking to hear about all of your pain, and I Hope that the pain can be controlled and alleviated very soon. I am perplexed and concerned about your doctor's decision/insistence to use radiation to treat both your newly diagnosed left shoulder met as well as the post-op area on your right shoulder, and his refusal to consider either radiofrequency ablation (RFA) or cryoablation since ASPS is so notoriously radiation resistant and radiation has unfortunately usually been unsuccessful in shrinking/destroying mets for most ASPS patients, while ablation has proven success in treating small ASPS bone mets such as Brittany's left tibia met. I encourage you to further discuss this important issue with your oncologist before proceeding with the radiation treatment and to request documented data which supports his radiation recommendation instead of ablation treatment.
Take care dear Amanda and feel the healing power of positive thoughts and love that surrounds you.
With deepest caring, special concern, healing wishes, all my love, and continued Hope,
Bonni

[D.ap]

Amanda

I agree with Bonni. You deserve an explanation of why the doctor is insisting on radiation verses radio frequency ablation?
It seems to me that if the ablation doesn't take care of the growths that you could discuss radiation?
Radiation, no matter how well it is performed, is pretty harsh on the area being treated. As you well know.

Not trying to scare you because I know you are already very afraid--( HUG )-- but knowing that ASPS is resistant to radiation and knowing that it could weaken your shoulder /arm bones enough to require a rod..He needs to explain why radiation

How big are the tumors?
All my love
Debbie

[Amanda]

Hi all
Really fast I'm sleepy
We are operating on left arm met it made a crack in the bone
Dr Brian said take out destructive met an then put a rod in to make sure it is strong
We caught this early an I am glad!
Dr Brian is the man that diagnosed me an operated on my primary in 2009
He is wonderful
My right arm btw is healing well yay!
He said left will be easier yay again!

Then I heal an full body bone scan!
We will discus how an where an what to kill with if any thing is found
I plan on living under scan a lotttttt!
My body needs these caught fast right now because I need a break lol

My pain is under controle an I was experiencing active bone cancer pain so I needed a higher dose an glad I am again listening to my body again

A late an love filled all Hallowes eve

I will post after Monday surgery xox

[Bonni Hess]

Dear Amanda,
I am so appreciative of your thoughtful upate and so grateful that your small left shoulder met is now going to be resected as opposed to treated with radiation. I am sorry that the met has cracked the bone necessitating placement of a rod to stabilize it, but am glad that it can be stabilzed and am Hopeful that will alleviate the bone pain which you have been so heartbreakingly suffering. It saddens me that you have to undergo yet another surgery, but I think that it is much better to surgically remove the met rather than try to treat it with radiation which could further weaken the bone and possibly be unsuccessful due to ASPS being so radiation resistant. I am so relieved that your pain is now under control and very grateful that your right shoulder surgical site is healing well. I Hope that you are having a restful and relaxing weekend with continued healing and increased strength each day. I will be right there with you in heart and thought on Monday during your surgery, and will be anxiously awaiting your update when you are recovered enough to write. Take care dear friend and stay strong.
With gentle hugs, most positive thoughts and very best wishes for Monday's surgery, all my love, and continued Hope,
Bonni

[D.ap]

Hi all
Really fast I'm sleepy
We are operating on left arm met it made a crack in the bone
Dr Brian said take out destructive met an then put a rod in to make sure it is strong
We caught this early an I am glad!
Dr Brian is the man that diagnosed me an operated on my primary in 2009
He is wonderful
My right arm btw is healing well yay!
He said left will be easier yay again!

Then I heal an full body bone scan!
We will discus how an where an what to kill with if any thing is found
I plan on living under scan a lotttttt!
My body needs these caught fast right now because I need a break lol

My pain is under controle an I was experiencing active bone cancer pain so I needed a higher dose an glad I am again listening to my body again

A late an love filled all Hallowes eve

I will post after Monday surgery xox

My love to you
Write when able
Debbie

[Bonni Hess]

Dear ASPS Community Friends,
I know that like me, all of you who care so deeply about dear Amanda have been concerned about her and are wondering how she is doing following her surgery two weeks ago to resect her arm tumor. Having sent her a private message, she graciously responded to me and gave me permission to post her updated information on the Board which is as follows:

Monday, November 10
I'm home now an pain is hard to controle at 100% but that's what ice packs are for
I need to stop having both arms healing even typing on iPad doesn't feel great
Cast comes off next week an I can't wait
All went berry well
feel free to share this info

Sunday, November 16
I am healing well an happy an Tuesday I hope the surgeon dr brain removes the cast he said on the second arm he got it all
It's hard to have both arms out of whack
Pain is under control but constipation has been a beast
What did you guys do for that? I'll dance nakai in the streets if that will work lol

It is so good and encouraging to hear that Amanda's delightful sense of humor remains intact despite all that she has been through the past several months.I know that she would appreciate any suggestions/solutions which you might have to help alleviate her pain medication caused constipation, and that your messages of support and encouragement would mean a lot to her and that she will enjoy reading them even though it is too painful and difficult for her to personally update and respond to everyone right now.
With special caring thoughts, healing wishes, and much love for dear Amanda, and continued Hope,
Bonni

[D.ap]

Monday, November 10
I'm home now an pain is hard to controle at 100% but that's what ice packs are for
I need to stop having both arms healing even typing on iPad doesn't feel great
Cast comes off next week an I can't wait
All went berry well
feel free to share this info

Sunday, November 16
I am healing well an happy an Tuesday I hope the surgen dr brain removes the cast he said on the second arm he got it all
It's hard to have both arms out of wack
Pain is under controle but constipation has been a beast
What did you guys do for that? I'll dance nakai in the streets if that will work lol

Bonni

Thank you for the update

Amanda,

Wow girl! you've painted a wild picture. Of you dancing in the streets naked Dancing is good though.
a link
http://www.bccancer.bc.ca/nr/rdonlyres/ ... pation.pdf

and the recipe

FRUIT LAX

125 ml pitted dates (1/2 cup)
310 ml prune nectar (1 1/4 cups)
125 ml figs (1/2 cup)
200 ml raisins (3/4 cup)
125 ml pitted prunes (1/2 cup)
Simmer dates and prune nectar until dates are very soft. Put date mixture in a food processor and add
figs, raisins and prunes. Blend to a smooth paste. Store in the refrigerator. Use on toast, crackers, ice
cream etc.Eat foods that contain fibre such as vegetables, fruit, cereals and whole grain breads. Eating these
foods will help to keep stools soft.

Have meals and snacks at the same time everyday. This may help to make bowel movements regular.
Do some light exercise, such as a short walk, after each meal.

So good to hear your good natured self.

I will write more tomorrow.
All my love
Debbie

[D.ap]

Hi Amanda

Happy Monday !
So how was your nights rest?
I hope it brought you sweet dreams
When's your PT being scheduled ?
What do your doctors call your bone scan ? Is that scheduled soon?


My love to you
Debbie