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

[Bonni Hess]

Dear Amanda,
It was so kind of you to write to let us know that you are now Home and continuing your recovery. I am so glad that you are feeling well enough to eat, sleep, and relax which are all so important for your healing. I am glad too for the awareness of the critical importance of regular and appropriate scans that you and your doctors have developed in the aftermath of your frightening brain met episode, and that both you and they will now be vigilant with scheduling scans in the future to try to prevent any new mets from going undetected for too long as unfortunately happened with your brain met. I am so sorry to hear about the bone met that was found in your arm in addition to the brain met, but am very grateful that it was able to be successfully resected. Has there been any discussion/consideration about a systemic treatment to try to stabilize the progression of your disease and prevent the development of new mets, or will the doctors just continue to closely monitor you with regular scans and try to resect/treat any new mets that may develop if they are resectable/treatable? I know for now you just need to focus on your recovery and regain your strength and energy for your continued battle, so please allow yourself to be well taken care of and pampered by family and friends dear Amanda, and know that you are so deeply cared about and loved by so many.
Reaching out across the miles to embrace you with gentle hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

[D.ap]

Hello <3
I am home an feel so loved an relaxed. So relaxed I am eating an sleeping non stop.
My arm they found a bone met an it was operated on also. Dr Brian was the dr that did the wonderful work on my leg primary!
He said it went well an again we got it.

I have been told by my team under no circumstances am I to ever ignore any pain an to get in there office that day if possible
This is imperative to stay ahead of this cancer
My neuro brain surgeon said if I have even pain in my toe I am to get someone to drive me to him then no waiting

I am in a position that I can stay ahead an I mad very angry at my self for denial an not taking care of these situations

I will stay ahead an I will eat sleep an knock the
Crap off

If I don't I will die an I have a grand chance to stay ahead .. Am very upset at myself I am sorry I have lost loved ones an my lack of action is just *lost for words to express*

My brain will be scanned every three months with contrast MRI
I want check abdom an pelv with contrast every few months to not only see if there is a problem that pops up but for my self to not be in fear

A bone scan will be done An I can't remember what it is called but it's two stages

Scans are the eyes that save us

I a still scarred of MRI but that's what drugs are for right?

Your support an love from all of you held me thru this horrid situation.

I a blessed we are. A family that supports each other an I pray that if so one is lurking reading an frightened they post

You really are not alone an even if we do not know you yet you are loved

Feel free to msg me msg me I won't let you be alone an I will do all I can to make this at least a little easier on you
It's to hard to be alone an though family loves us actually speaking with someone with this helps in other ways

My love to you all!!

I am going to bed

Amanda

You are loved my friend .
Sleep well and write when you can.
Hugs
Love
Debbie

[Amanda]

A quick reply then sleep

We will try an stay ahead with surgery
As far as we know it is the few growing mets in lungs left
In two weeks they will be my topic with my once an I will be reaching out to all of you when making a decision

There is a med used in reference to bone cancer an I was asked if an or what I had not received this
Any insite into what this night be or if I misunderstood we will find out

Before this brain arm situation the plan was UCLA an my loving dr an we were going to try for all over a six month period to freeze an kill them
Leaving me with about five stable things under a cm

My hope is I heal an we kill the few things growing an I stay virulent and chug along with lifer praying I can remove freeze or fry any thing that comes up

So yes we are ahead now an I ab back to lungs soon

I know others do this also I am happy my oncs feel this will work if not for good for now

Good night an thank you for being here
Lots of love

[Olga]

They were probably talking about bisphosphonates - drugs that prevent bone loss so they also make the growth of the new bone mets difficult as the bone matter gets dense. People with the recurrent bone mets often get it, but in your case I do not know.
About the arm bone met - what exactly did they do surgery wise?
What is your jaw surgery complications situation - did it get better, I was thinking that may be the symptoms you had were brain met related?

[Bonni Hess]

Good Monday morning dear Amanda,
I Hope that you had a very good and restful night's sleep.
In regard to your question about a medication for bone mets, I know of a couple of ASPS patients with bone mets who are/were treated with Zometa to help reduce their bone pain and prevent bone loss so this may be what your doctors are referring to. Zometa is not an anti-cancer therapy but it is given to cancer patients with bone metastases to help prevent pain and fractures caused by bone mets. It is not available in pill form and is administered intravenously. Based on your history of bone mets in your ribs and jaw it certainly seems that this would have been discussed with you by your oncologist so you may want to pursue this.
It sounds like you and your doctors have a good pro-active plan for trying to manage your disease with vigilant scanning, Cryoablation of your couple of growing lung mets, and resection/ablation/radiosurgery of any new mets that may develop. I am holding very tight to Hope that this will be a successful approach and that your disease will stabilize so that you and your body can fully recover from all of the surgeries and procedures that you have been through during this past difficult year. Take care dear friend and continue to rest and recover feeling the healing power of the love that surrounds you.
With more gentle hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[Kathy]

Amanda,
I admire your strength, and courage. You have been through so much. Tom and I are praying my friend. Please keep us updated, but also make sure you are getting rest. Much love and many hugs to you!

[Amanda]

Just a post saying today I slept for the first time in two weeks like a baby!
I feel better
I am having pain I near an jaw but after all I have been thru. It is expected

I wil try a say hello tomorrow

Ivan you have been quiet an my thoughts are with you I hope you are alright

Love to all
Amanda

[D.ap]

What can we do?
Please know that we are here for all.

Love ....,
Debbie

[Amanda]

Deb, I love you!
Thank you!

I am healing so fast other then shoulder an arm that I am frustrated
Pain sucks an I have been here an will heal

Thank you for caring like a mommy you children are blessed



Update as of today
I can feel more on my head it is in some places on scalp mixed
It feels weird but in a healing good way

Arm right side omggggg it can hurt like a dickens an ice an norco low dose is working to control
I do still have pain to a 5 level
But this jumps to a level 2 an I learn what is ok an not ok to do
They wanted/will give to me a higher pain medication
But I an so elated I am alive an even from bed talking to my son being again his mother that I do not want to be stoned out of my mind
I believe that this also allowed the body to deal in its ways to help stop the pain.

This morning was a little over painful an I took an extra half an now Aidan my son is off to school an I am close to no pain

I am seeing better an other then being a wee bit stoned from the norco hitting just now am shocked at the impact of this tumor an would like to add as a symptom to a brain tumor emotional changes.


I am going to sleep

Will post later or tomorrow

Love an light!

[Bonni Hess]

Hello again dear Amanda and thank you once more for your gracious sharing and additional update information. I am so sorry for your continued post-op arm and shoulder pain, but am grateful that your head seems to be recovering well from the brain surgery which was Brittany's same experience as she said that her brain surgery was the easiest surgery and fastest recovery of all of her 23+ surgeries/ablations/radiosurgeries. Regarding your addition of emotional changes as a symptom of a brain tumor, did you experience the emotional changes pre-op or post-op or both? The post-op emotional changes can certainly be attributed to everything that you and your body have been through with the frightening loss of consciousness, shock of the brain met and arm met diagnosis followed by the two surgeries, as well as the strong pain meds that you are receiving. Also, if you are taking Decadron or Prednisone steroids to help control/reduce post-op brain swelling, based on Brittany's experience, the steroids very definitely strongly affect your emotions and cause severe mood swings with erratic and irrational behavior so you and your family need to be aware of that and know that the emotional inbalance will subside and resolve once the steroids are discontinued. Continue to rest and recover surrounded by the special caring and love of family and friends including your ASPS Family.
Heart to heart with deepest caring, healing wishes, much love, and continued Hope,
Bonni

[Amanda]

Hello
These emotional feelings that were worsening from swelling pressure on frontal lobe long before surgery

Easily brought to tears
Feelings of being over whelmed easily

Things that were not myself
Cussing when feeling passionate of topic being to passionate on a topic

I'm a mellow lady

Depending on area of brain frontal lobe will be effected an it could be a god send I between scans if this type of emotional or other take place

Rainbow bar in vision dizzy vision decline these are other symptoms

I will post fully on all symptoms

But I did not see the emotional effects posted an it was a red flag
Hun my brain was so swollen it took two days to get swelling down they could not operate

My experience an my inventory of what took place before an after ic clear to me btw my vision is healing already:)

Maybe my roll an why I was kept Aline an I am still shocked is to help others an help the parents to please scan the babies no matter what the doctors are saying

I get it an understand why the doctors say his but they do not know asps as we do sadly an treat it at times like another sarcoma or many other reasons

It's not that bad in the tube an won't bury the lil ones
I don't want the lil ones facing what I did an the parents because of a micro spread going thru the mutable self blame game it's heart breaking enough

I will list in full in the brain area later this week
If any parent has a concern before I post this or anyone has a question post to me ASAP


Love an light an hugs

[Bonni Hess]

Dear Amanda,
Your gracious posting of your frontal lobe brain met symptoms and passionate urging for ASPS patients to have regular brain MRI's instead of just brain CT scans is extremely helpful and invaluable information, and will Hopefully be taken seriously and acted upon by everyone reading your posts.
With more gentle hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[D.ap]

You sound so good !
In reference to the shoulder I suspect the incision was quite a bit longer and deeper on your right arm?
Was it on or in your shoulder blade ?
I am so happy that the doctors were able to do two surgeries and begin to rid your body of the ASPS.
I am trying REALLY hard to get past feeling anger towards them

Much love
Debbie

[Amanda]

Hello Olga
I'm sorry it has taken so long to reply

The met in my right arm was bone my asps loves to attack my bone
It's super painful
Very hard to discern even thru pain what is an isn't ok to do an I found this out when I was ins ever pain for the last twenty four hours

Boy oh boy I when healed enough will be posting a mass of information like a ache that lasts for over 24 hours an a patient with a history of bone cancer needs a ct ASAP

There is an injection for sarcoma or cancer patients with a history of bone cancer an I will need to find out what it is
UCLA asked me if I have had this an being the queen of denial I said no an we moved on

How is Ivan? He is my twin in so Many ways an I am worried about him I pray that he is healed an back at his life as I do
But this time I am worried
Please hug him for me is now it's mushy Ivan but I am a girl lol an I do care very much about you!

Love an hugs

[Amanda]

Hello Bonni
I dearly hope they do! The growth an sexual puberty hormones are in my opinion a fires torn to asps an the MRI is thirty minutes

Seeing your little one go thru this an the feeling of not doing this one little thing a year is so not worth the outdone
I also understand the fear of contrast with ct an these things are so important

But this is up to the parents an I hope very much to quell there worries an to protect there child if there is some thing it can destroyed

I have heard as we have friends with asps that they found an were virulent an made. Sure if there was cancer it would be destroyed
A these people are NED


Love an huge to you

Dear Amanda,
Your gracious posting of your frontal lobe brain met symptoms and passionate urging for ASPS patients to have regular brain MRI's instead of just brain CT scans is extremely helpful and invaluable information, and will Hopefully be taken seriously and acted upon by everyone reading your posts.
With more gentle hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni