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

Those who lost their battle with ASPS :(
D.ap
Senior Member
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Joined: Fri Jan 18, 2013 11:19 am

Re: Amanda R :) from California - Dx 2009

Post by D.ap »

Wow Amanda
I wasn't expecting a post so soon so I hadn't been looking!
I am so relieved to see you post with such great results and news !
Rest well our friend

Love
Debbie
Debbie
Kat
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Joined: Thu Sep 05, 2013 4:56 pm
Location: NSW Australia

Re: Amanda R :) from California - Dx 2009

Post by Kat »

Fantastic new Amanda! I'm glad it went well, thanks for sharing your journey so that others can learn.
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,
It is with the greatest joy and relief that I just read your very thoughtful and informative update on the thankfully very successful outcome of your yesterday's lung met Cryo!! :-) I am so deeply grateful that everything went so well and that it was such a positive experience for you in terms of the excellent care and special support that you received from your doctor and his team :-). Celebrate, but not too actively right now!!.., breathe easier knowing that you now have one fewer lung met with the rest to be ablated and destroyed in the coming weeks :-), relax and rest well, and feel the happy embrace of my gentle hugs and my shared greatest happiness for you.
With a happy heart, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni
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 »

Hello again dear Amanda :-)
I Hope that this finds you continuing to recover well and having had a very good and restful weekend with no post-Cryo discomfort or problems. Is the 3 Centimeter met that was ablated your largest lung met? I didn't realize that you had one that large since the largest one you had when you posted following your scans in January 2013 was 13 mm. I am very grateful that you have now been able to move forward with getting your lung mets treated before they grow any larger since we were told by Dr. Littrup that 3 Cenitmeter is about the maximum size for a successful Cryoablation. That was several years ago when Brittany had her last Cryo with Dr. Littrup and perhaps the situation has changed now as the technology contimues to improve and advancements are made. Did your doctor provide any infomation to you regarding size limitations for a successful outcome for the Cryo? I will be looking forward to your next post when you have regained your strength and energy, and in the meantime I Hope that you are resting, relaxing, and giving your body time to heal. Take care dear friend.
With gentle hugs, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni
Amanda
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Location: Los Angeles, Ca

Re: Amanda R :) from California - Dx 2009

Post by Amanda »

Hello Bonni <3
The tumor on the bronchial right lower lobe was 2.6 about. an he froze a 4 cm area to kill the field.
He did say that because of the size he may have to do some re do on some tumors. But, he feels confident he will slowly kill them all :)
This was said before we did this an now he feels stronger we can kill these bastagez :)
He said my lungs are very strong an resilient an that it a very good sign also in these treatments :)
I am so happy that i am seeing this doctor an that now we have a west coast choice for our ASPS family!
I will see the Dr on August 21st about the adrenal met.. i was sposed to see him tomorrow but i do have pain an it is not bad but my STUPID shoulder an neck with the tendon, muscle, nerve pain it is worse *sigh*
so i felt two weeks break was important right now. My poor body in the last six months has been really beat up by the surgery that was so massive an now this procedure though small an the quality of treatment was so awesome. Is just to much for me right now...
I feel like i was put in a dryer an spun lol

I am feeling a little pain in the area of the lung that they did this procedure. But, it is such a relief that this could be done an that i wish tob be honest i would have done this in the past an not the open lung surgery..
I am not coughing a lot an when i did finally cough up stuff it was gross an i am glad it was a small amount lol
when i lay on my side at night an my ear is on my pillow i used to hear after the treatment a lil sound. that sound is almost gone now :)

Why are we not just doing the cryo if we are diagnosed with a few mets like i was.. it would have in my uneducated mind more sensible :/

I really need to get the doctors info posted in the Cryo area...
Then after my seeing the liver Dr i will post his information :)
“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
D.ap
Senior Member
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Re: Amanda R :) from California - Dx 2009

Post by D.ap »

Hey
It's good to hear from you and know that your up and around
About that coughing. Is it yucky yellow or green cause that could be infection :(

Do you think the way you were positioned during the cryo procedure made your nerve more aggravated
And consequently more sore? Maybe a massage could help.

You've had your follow up right?
Boy am I nosey or what ?
Hope you are able to get a good nights sleep and feel better tomorrow .

Good night
Love
Debbie
Debbie
Amanda
Senior Member
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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 »

Hi Deb :)
Its normal to bring some stuff up after this happens an no its not infected :)

Yes, other than my dam neck shoulder i am almost 90% now..
but, its healing slow i am sure all this other pain is not letting up an today i am calling an getting injections! I am sick of this sh&&!
I had to move mt adrenal gland ting because of this pain.
I can't eat nor sleep..
“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
MarietjievdMerwe
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Posts: 162
Joined: Fri Apr 13, 2012 7:59 am

Re: Amanda R :) from California - Dx 2009

Post by MarietjievdMerwe »

Dear Amanda,

Just thinking about you today and hope that your terrible neck and shoulder pain is better. If not, get the GOOD STUFF (injections)! It is horrific to be in so much pain. :(

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 »

Hi <3
Thank you for thinking about me!
I am going tomorrow an thats the plan i think the pain Dr said was shots...
The muscle spasm seems to be messing a lot with tendons and ligaments :( the pain is horrid!
I think it is cortisone an lidocaine?
I could be way off though...
I forced myself to take a shower the hot water hurts >< so i took a tepid shower an that was ok..
I am frustrated being at home in this ratty apartment! I have not even been able to shop for food.. *Good foods* Though hubby is amazing an trying sooo so hard i need the food i like i am a foody lol
He turned me on to Amazon Fresh and i went order postal lol I think i saved money also :/
I am having fondue an veggies tomorrow night yay!!! lol
I have lost a LOT of weight an i need to stop doing that! I am nt skinny an i am glad i got a lil chubby. So i can afford to rid my body of this weight! But, it is now more a question of how i am losing it by not eating!
Some foods you just can't pass up an fondue is one ot me lol
I love cheese :)
“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
D.ap
Senior Member
Posts: 4138
Joined: Fri Jan 18, 2013 11:19 am

Re: Amanda R :) from California - Dx 2009

Post by D.ap »

Hi Amanda

How are you feeling today ?
I hope you were able to get your shot and it has taken effect. :)
Write when able.

Love
Debbie
Debbie
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 »

Hi
well, he is a great loving pain doctor and i recommend him highly!!!
The treatment lowered the pain but didn't stop it at all :(
I know it is going to break his heart an i dont even want to return the call an let them know :(
I am also starting a low dose nerv med
I am still doing the gel an lidocaine patches *I need to be more active with them*
this is a nightmare!!!
“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
D.ap
Senior Member
Posts: 4138
Joined: Fri Jan 18, 2013 11:19 am

Re: Amanda R :) from California - Dx 2009

Post by D.ap »

I am sorry this has gone on this long.
Did your pain doctor tell you how long it might take to become effective ?
I have a sister that had a cortisone shot in her hip and it took about a week to begin to feel better .

Maybe a call would give the doc a clue to what is next ?

Love
Debbie
Debbie
D.ap
Senior Member
Posts: 4138
Joined: Fri Jan 18, 2013 11:19 am

Re: Amanda R :) from California - Dx 2009

Post by D.ap »

Hi Amanda
I was hoping that your pain level has been reduced ?
Write when you can

All my love

Debbie
Debbie
MarietjievdMerwe
Member
Posts: 162
Joined: Fri Apr 13, 2012 7:59 am

Re: Amanda R :) from California - Dx 2009

Post by MarietjievdMerwe »

Dear Amanda,

Sending hugs and lots of "hope you are doing ok's" today.

Hope your pain is better?

Lots of love.
Marietjie.
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 <3
Pain is still there an we are now talking about nerve blocks!
Problem is i would need to have a surgeon that will actually talk to others and his patient!
His response was "Yes, this type of phenomenon does happen" Now WTF was that response!!!
I told my pain Dr that was the response i got back and he was shocked!
My response would have been ok the pain in this can be bad!!! Whats happening are you ok or come see me! None of that happened :(
I am so pissed at him right now!
I am in 10 out of 10 pain almost constantly for two months now.. an it is taking a huge toll on my attitude and health!

We need to know what nerves were cut an i have no way of explaining to my pain Dr exactly all that is happening :(
I am having muscle spasms from shoulder to top of my neck right side where the surgery was.
shooting pain an weird burning pain i think that tendon by my color bone an that is the worst!
The head pain is bad because the muscle spasms move from the top of my neck at the base of the skull up where my ear i an over my temple an to the top of my head .. an it hurts bad and i hate it!

Nerve shooting all over the place like space invaders :( I wish it would make up its mind so i could figure out with my Dr help what nerve is going insane! But, i am sure it is in my neck an behind my ear :/

Ok, (((Hug to you all)))
“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
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