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

Those who lost their battle with ASPS :(
Bonni Hess
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Location: Sammamish, WA USA

Re: Amanda R :) from California - Dx 2009

Post by Bonni Hess »

Hi Amanda,
I don't know if you read it/remember it or not, but in a previous post I told you that the injection for cancer patients with a history of cancer in the bone is probably Zometa and is/has been used by a couple of our ASPS Community patients including most recently Alexander from Russia so you may want to discuss this treatment with him. I Hope that you are continuing to recover and heal from all that you and your body have been through, and that you will have a restful, relaxing, and pain free weekend. Take care dear friend.
With gentle hugs, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni
Olga
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Re: Amanda R :) from California - Dx 2009

Post by Olga »

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.
Olga
Bonni Hess
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Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R :) from California - Dx 2009

Post by Bonni Hess »

I agree Olga, but thought that it would be worthwhile for Amanda to at least discuss it with Alexander to find out if he has found it effective for his ASPS bone involvement and pain, and also with her doctors regarding their recommendations in view of her already compromised jaw situation. I had to discontinue taking Fosamax (which is another bisphosphonate) for my osteoporosis because I was beginning to develop jaw pain and potential osteonecrosis, and Amanda certainly doesn't need this complication.
With special caring thoughts and continued Hope,
Bonni
Amanda
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Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Hello Deb :)
Other then hurting myself like a idiocy I am healing really well.
It's a lot to heal from is all
They started me on lyrica spelling
And it has helped me a lot because I did not
relies I was in so much leg pain this whole time
A bad bad situation has brought me gifts


Love you a huge hug!

PS iPad being a huge turkey tonight
Or maybe it's just me
“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
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Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

hello Bonnie
Yes, I missed that about the injection I have been so Foggy an I am sorry Hun I missed it,,
My pain bucket is clear an the horrid pain I had yesterday is down an resting in bed an not being stuper woman yes stuper lol able to put up hollow end decorations in a single bound
I am frightened but my mother in law to a beautiful place to eat by my house
I will let you know how that goes :)


Love to you :)

Bonni Hess wrote:Hi Amanda,
I don't know if you read it/remember it or not, but in a previous post I told you that the injection for cancer patients with a history of cancer in the bone is probably Zometa and is/has been used by a couple of our ASPS Community patients including most recently Alexander from Russia so you may want to discuss this treatment with him. I Hope that you are continuing to recover and heal from all that you and your body have been through, and that you will have a restful, relaxing, and pain free weekend. Take care dear friend.
With gentle hugs, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni
“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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Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R :) from California - Dx 2009

Post by Bonni Hess »

Enjoy a good dinner with your mother-in-law dear Amanda but don't overdo. One step at a time and take as much time as you need on your road to recovery.
With special caring thoughts, healing wishes, lots of love, and continued Hope,
Bonni
D.ap
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Joined: Fri Jan 18, 2013 11:19 am

Re: Amanda R :) from California - Dx 2009

Post by D.ap »

Amanda wrote:Hello Deb :)
Other then hurting myself like a idiocy I am healing really well.
It's a lot to heal from is all
They started me on lyrica spelling
And it has helped me a lot because I did not
relies I was in so much leg pain this whole time
A bad bad situation has brought me gifts


Love you a huge hug!

PS iPad being a huge turkey tonight
Or maybe it's just me
Hi there lady
Good to hear from you
Is there a cognitive type exercise that is a follow up to your brain surgery?
Didn't understand the the leg pain?
Keep up the fight
Love yA
Debbie
Debbie
MarietjievdMerwe
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Re: Amanda R :) from California - Dx 2009

Post by MarietjievdMerwe »

Dear Amanda,

Just want to reach out to you and give a HUGE hug! I hope and pray that you will be on the road to a excellent recovery. Enjoy your visit and have fun, heaven knows, you deserve it.

Lots of love.
Marietjie.
Amanda
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Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Hello :)
I was not up to it an believe my husband needed this time with his mother
An he looked a let better when he came home an they got me a coffee machin froth milk fift


Love an light


Bonni Hess wrote:Enjoy a good dinner with your mother-in-law dear Amanda but don't overdo. One step at a time and take as much time as you need on your road to recovery.
With special caring thoughts, healing wishes, lots of love, and continued Hope,
Bonni
“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
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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 <3
You taking the time to post to me means so. Much you are in the mist of saving your loved one

You have both been in my thoughts I am going to bed now but remins me to tell you what I said to my doctors anout the Heath situation you have been facing

Love you an hugging you back. :)

MarietjievdMerwe wrote:Dear Amanda,

Just want to reach out to you and give a HUGE hug! I hope and pray that you will be on the road to a excellent recovery. Enjoy your visit and have fun, heaven knows, you deserve it.

Lots of love.
Marietjie.
“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 :) from California - Dx 2009

Post by Bonni Hess »

Dear Amanda,
I am so sorry that you did not feel well enough to go out to dinner with your mother-in-law :-(, but am grateful that you listened to your body and did not try to push yourself beyond what you are able to do right now. Time will bring healing and renewed strength and energy, but it will take time and patience because your precious body has been through so much. In the meantime, rest, relax, and recover one step at a time and know that my deepest caring, my most positive thoughts, my healing wishes, all my love, and my continued Hope are with you.
Bonni
Amanda
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Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Hello :)

I will reply to a few an then update in one post...

Hello Deb, it was in the frontal lobe hence no cognition damage :) I actually requested neuro psych meet with me to make sure, lol to me I would have been devastated .... After all surgeries we need games like a game that I can't spell it starts with Mar an I play that an other games. I did meet as another request with them in my rehab stay because the swelling in frontal lobe was making me cry... It freaked me out. So I was blessed

On to other fronts

I am in pain an it's mostly healing pain from right arm shoulder

Head brain is great no pain unless I start to play with stitches lol

Full body bone scan is set for next week! :)

Now the great we are being extremely vigilant an I am now back to keeping myself alive by listening to my body
I am not sure if I mentioned it but my stupid left shoulder right after my shoulder surgery started to hurt
Yesterday dr Brian who diagnosed me am I truly love when I told him said I want an x ray now an you are not leaving till I see it an we talk
It showed almost mirrored the other side but in a beginning stage
He is speaking to my radiation on the one that years ago gave huge that made all bad things in the world go away
They will discuss a plan an kill the bustard dead in its tracks

So I am in pain both sides one healing one time
Blessings are these areas will all heal fine but this is the worst I have ever been thru!

Love an hugs
I need to relax an hope pain med starters soon
“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
Olga
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Re: Amanda R :) from California - Dx 2009

Post by Olga »

Hi Amanda, are the shoulder mets located in the bone or a soft tissue? They can be cryoablated when small!
Olga
Bonni Hess
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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,
You continue to amaze and inspire with your ability to keep the Board updated and your invincible positive attitude and strong determination despite all that you and your body have gone through, and now your newly diagnosed left shoulder met. I am so sorry for this new diagnosis, but am grateful that you were so aware of the symptoms, your doctor was so responsive in immediately scheduling an x-ray, and that the met has been found at a small size which, as Olga said, may be treatable with Cryoablation.
Wishing you a day of rest and relaxation with effective and sustained post-op pain relief and continued healing and recovery, and reaching out across the miles to embrace you with gentle hugs, special caring thoughts, lots of love, and continued Hope,
Bonni
Olga
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Re: Amanda R :) from California - Dx 2009

Post by Olga »

Yes, Bonni - I forgot that Brittany had her bone met treated by RFA, so both RFA and cryo could be looked at for less traumatic option that is available on a smaller size.
Olga
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