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

[Jorge]

I'm really sorry to hear about the brain met. At the size of 2.3cm, it probably can't response successfully to Gama Knife or Cyber Knife. Hope you can discuss with your doctor to schedule the surgery very soon.
In George's experience, the post surgery pain is much less than the other surgeries and the recovery is much sooner. It's nothing comparing to your jaw surgery

I wish the surgery can be scheduled soon and a successful surgery.

Lynette

[Bonni Hess]

Dear Lynette,
I think that you may have misunderstood Amanda's post because it is my understanding that she did thankfully already have the brain met successfully surgically removed based on her following comment "I was blessed I had one of the best brain surgeons right thee an iris all gone! I am 100% ok"
It was so good to hear from you and I Hope that George and you are doing well.
Based on Brittany's brain surgery experience, I agree with you that the post-op pain is much less than other surgeries and the recovery is much faster . Brittany commented that her brain surgery was the easiest of all of her 23 surgeries/ablations/radiosurgeries. I Hope that Amanda has the same experience in terms of less post-op pain and a very speedy recovery.
With special hugs for George and you, special caring thoughts, healing wishes for George, and continued Hope,
Bonni

[Jorge]

Thanks for the thoughtful remind, Bonnie. I'm so so so glad for the successful surgery and your quick recover as I can tell from your update, Amanda
Have a good rest and give us more details about the surgery when you're much better.

Bonnie, I'm very grateful that you're thinking of us. It's National Holiday in China now and we're having a big rest I will update in George's topic later.

Love you,
Lynette

[MarietjievdMerwe]

Goodness Amanda!
I am so glad that you are doing ok.
Keep smiling and have a super recovery.
Kind regards.
Marietjie.

[Amanda]

hello everyone <3
I'm doing really well because of the size I stayed in a rehab swelling an other weird mind stuff an it makes it easier I think on hubby am son
I am spoiled in this place an they are healing me an making sure meds are on it

I am here still I swear as an act of god
They got all of it
I. Ean how could they. Is it a blind man couldn't miss this
One of the top surgeons was in the er with me ASAP

They say I am going to be fine now
Medications are a lil hard core but I know others have been thru this an knowing this makes me feel comfortated

I will have 5 targeted radiation treatments an will of course bounce it off you all
I an they are shocked this huge thing sat there an grew an I will say my road with asps has been weird
But this takes the cake

I can't stay on to long I want to rest

I would,like to say again
MRI MRI MRI
The cts missed a tumor over 3cm
It was laying on frontal lobe
An it couldn't be finally definitely refinished hence missed

I am alive I will win this one

But we have no idea how I got so,lucky do not push your luck like I did like an ass
An I know some are listening to drs that say ct or X-ray
My question is why just that? It's not going to kill them an this tumor was a beast
Maybe I am saved to save another. Thru this....
I don't know

Please please I beg you
Get the lil ones MRI an ct chest
Please don't dish this please it just is not worth the risks....

I will try an post back in a few days I am going home Friday

Love you all xox

[Amanda]

I saw a few posts an I want you all to know I love you so much

An thru this I was not conscious much 6days I don't even remember

They got it all he said it was sitting on top

An said by the grace of god an they are shocked I will be ok

I will be scanned every 4 months for two years an I won't except anything else

I am going to respond to a few questions

I'm an asshat I have had symptoms for years bad vision dizzy I am an idiot with a luck I am happy but because of the swelling we found it I am dumbfounded how the hell I am here I have not been able to ask but I am assuming till I speak with dr that but was a huge capsized frigging pancake
I will get more info because we need this logged for others

In one area that was not going to effect my brain permanently it was attached an he took a margin an said I will be ok

Oh you guys it's been so hard this war round
I also,had the shoulder pain thing done an I an now fixed there

So two surgeries both great outcomes thank god

I asked straight out if this was going to kill me brain he said no but I had to have the 5 zaps to make sure an at this point ok I will zap targeted

It is the same amassing radiation dr an team I have been with for 7 years

I feel confident I will be fine
But I am also the idiot that didn't MRI
Some Devine sits over me
I think when it is in a capsule that's good right ?

Backing Up about symptoms they started 17 years ago an were diagnosed as eyes eyritus an sinus an dizzy from ear problems this is also when rib hurt an leg
This cancer is weird
It maybe I have had this that long an it went active

No matter scans MRI bones things like that
And no fear or excuses

Next step is heal an then freeze the lung mets is plan

I am glad they said I would make it thru an live

But I will be vigilant an I will scan even if I have to pay an MRI out of pocket

I am still shocked I am ok an going to live
Also an ONC told my husband it usually hits the brain last an that making it thru this is a good sign

I have won an I am shocked
My lead dr whom does chemo said I'll be ok an radiation
So no chemo yay

If I remember right we have others with huge capsules tumors be ok also

Husband said the er was shocked when they all walked in to this unconscious me the directors of sarcoma radiation neuro surgical sarcomas
The team I built an loved were all still at work an stormed the er
Tears
his makes me cry because having them there is also divine intervention they brain stormed my brain
But I want to make sure our asps wee ones are scanned right it's not worth the risk
I was lucky
It is not worth the risk
I had a team top surgeons on me within finding me unconscious
Are you willing to roll that dice like me being an ass on our lil ones

Promise me!!!!!
Please
My situation is like a Hallmark movie

Scan the right scans an live thru asps with better chances

I don't even know the babies but to me they are in my rare family an precious


Anyhow I feel so much better! Even vision is better

Act of god
It has to be that!

I feel so good right now posting feeling like I have you all with me

Love you all an now I will rest even if I am not sleepy a lil

[Bonni Hess]

Dearest Amanda,
I am so deeply grateful that your large brain met was able to be successfully and completely resected and that you are now recovering and receiving good post-op care and pain meds in a rehab facility. It has been our experience with Brittany's brain mets that ASPS brain mets are typically encapsulated with thankfully no fingers that reach out into surrounding brain tissue. As Brittany's highly respected neurosurgeon said, " the tumors popped out like marbles". Based on our experience the post-op symtoms ("weird mind stuff") that you are experiencing are normal with brain surgery and will most likely gradually resolve as they did for Brittany who was writing everything upside down and inverted in the first few days following her brain surgery! I am concerned, frustrated, and very upset that your doctors who had been closely following you did not recognize your vision and dizziness symtoms as possible signs of a brain met given the known nature of ASPS to metastasize to the brain, and insist on you having a brain MRI rather than only a brain CT!
I have to disagree with your oncologist who told your husband that "it usually hits the brain last" which is completely inaccurate based on our personal experience with Brittany's disease and my 13+ years of observations of other patients' ASPS experiences. In Brittany's case, she developed brain mets within the first four years of her ASPS diagnosis and then continued to develop widely disseminated mets in her tibia, spine, small bowel intussuception, duodenum, and pancreas. I am telling you this not to frighten you dear Amanda, but just to make you aware of the critical importance of being very vigilant in scanning all areas of the body including the brain every three months until you have attained sustained disease stability for at least two years. Since you now unfortunately have a history of having a brain met, I would strongly recommend that you have a brain MRI every three months instead of every four months to ensure that any new brain mets are found at the smallest most treatable size. We have just now apprehensively changed to a four month brain and spinal MRI schedule for Brittany after having them every three months for the past ten years because of our concern/knowledge that brain mets can grow much faster than mets in other areas of the body and they need to be treated at the smallest possible size to ensure a successful response and outcome.
Post brain surgery targeted radiation was never recommended or done for Brittany I assume based on the fact that the mets were encapsulated, so I am wondering why it has been recommended and scheduled for you? I don't remember if Ivan had post brain-op radiation, but perhaps he or Olga can/will comment on that issue here.
I know that you need your rest dear Amanda, so I will close for now with deepest gratitude for your thoughtful sharing and for your passionate urging for everyone to be vigilant in having regular brain MRI's and NOT just brain CT's. Hopefully something positive will come from your hard earned realization of the critical importance of brain MRI's.
Please take care of you giving yourself time to recover and heal and feel the embrace of my gentle hugs, my deepest caring, my most positive thoughts, my healing wishes, my warm friendship, all my love, and continued Hope,
Bonni

[Amanda]

Today went great they said I will be sent home Friday

I'm not sure why targeted radiation but I will ask before I jump an just do it
I will talk to them about the 3 month scans an it maybe that is what they are saying to do
I don't remember much it was frontal lobe area an I am lucky to be alive right now my husband found me unconscious many frightening blocked out things I am trying to not get stressed in any way an try an find things funny in this dark pit
I agree with you about the dr an yes I stopped seeing him three years ago
But I was the jack ass that didn't get the MRI I could have gotten one though we at that point didn't have cancer that I knew of
Bonnie Your passion is caring an love we have been close now over seven years I would be upset also and I thank you an I am blessed you are here with me
My bone scan will be next month when I heal a little more
An btw when I woke up in the MRI I wasn't frightened so maybe I won't Need to be drugged
Things an my dealing with this have changed since that morning when he found me

I am finally letting my husband in the loop an his strength will also help me greatly an he will glue me to
The MRI machine till it is done

I just spoke with hubby it is MRI every three months an I said for two years an he said yes
Buy he said we would need to confirm an push an pay if they said no but he remembers a two years statement

I will be getting these done an I am more in fear of not getting these MRI then the closed space

I found out that the tumors was 2.2

I am glad I though it was twice that!!!

I don't remember the last two weeks an that's so triply I can't explain how this feels I hope that one of you will post back an tell me if you went thru this also. Though I was found unconscious

Ok, the real weird thing an it is funny I would like to know if why one had with there brain surgery a cookie addiction!

At night I start to crave sugar an in an evil way lol
I would take a large man down for an orio lol

Please tell me I didn't come out of this with some odd sugar cookie thing

Now that I know I am ok an it's almost over I am happy I can't stay sad I have had to to many surgeries an if I didn't find some thing either funny or silly I would become frankenweenie an be a sad lump in the corner


Update on me is as fallows...

All went great they got it all as far as they know an my brain will have 5 targeted radiation an my arm/shoulder will have three radiation
They told hubby that even if it went well they'd still want to try an make sure macroscopically an do the fast targeted radiation
Unless it is dangerous I am ok doing it maybe less then five times but it seemed to work on my leg

The closer we get will can group family talk I won't do it with out everyone in n it

The dizzy spells an eye problems I have had for fifteen years are starting to go away an I am getting clearer vision sadly non of this started when I knew I had cancer

I'm glad I am ok

I firmly believe that the sex hormones do turn this pos asps on an when I was pregnant it started
All sights now that head just happened

I am getting my hormones shut down
There is no reason to keep the darn monthly hell that is I think feeling this devil

Not sure how to stop it I may have to have a surgery
Geeee I'm scarred lol bring it on

What do you all think? An btw when I had mets grow the THING was horrible

Love an hugs to all!

Btw iPad is messing some words up don't worried it's not me I am ok
It has frightened a few friends:(

Btw did anyone else black out days?

[Amanda]

Bonnie
I am no longer in denial an fear more now not getting every three month scans an I feel very lucky to have you as a friend
We have two plans for insurances so maybe I'm not going to have any problems

If I get scanned faster then they are smaller an I now fear the surgeries more an when post this it will be a whopper an it may scare some but if I don't share it some could be like me unconscious an then a sad post by my husband

Oh also the 2.2 was new they looked at a ct from a few weeks before with the MRI dam that's fast!!!

Ok nurse said I have to stop I told them it's my cancer family but evidently I can't get stimulated

If any of you are around ceders I will be here till Friday morning an even in pjs it would be awesome see some of your faces

Good night for now xox

[D.ap]

Dearest Amanda,
I am so deeply grateful that your large brain met was able to be successfully and completely resected and that you are now recovering and receiving good post-op care and pain meds in a rehab facility. It has been our experience with Brittany's brain mets that ASPS brain mets are typically encapsulated with thankfully no fingers that reach out into surrounding brain tissue. As Brittany's highly respected neurosurgeon said, " the tumors popped out like marbles". Based on our experience the post-op symtoms ("weird mind stuff") that you are experiencing are normal with brain surgery and will most likely gradually resolve as they did for Brittany who was writing everything upside down and inverted in the first few days following her brain surgery! I am concerned, frustrated, and very upset that your doctors who had been closely following you did not recognize your vision and dizziness symtoms as possible signs of a brain met given the known nature of ASPS to metastasize to the brain, and insist on you having a brain MRI rather than only a brain CT!
I have to disagree with your oncologist who told your husband that "it usually hits the brain last" which is completely inaccurate based on our personal experience with Brittany's disease and my 13+ years of observations of other patients' ASPS experiences. In Brittany's case, she developed brain mets within the first four years of her ASPS diagnosis and then continued to develop widely disseminated mets in her tibia, spine, small bowel intussuception, duodenum, and pancreas. I am telling you this not to frighten you dear Amanda, but just to make you aware of the critical importance of being very vigilant in scanning all areas of the body including the brain every three months until you have attained sustained disease stability for at least two years. Since you now unfortunately have a history of having a brain met, I would strongly recommend that you have a brain MRI every three months instead of every four months to ensure that any new brain mets are found at the smallest most treatable size. We have just now apprehensively changed to a four month brain and spinal MRI schedule for Brittany after having them every three months for the past ten years because of our concern/knowledge that brain mets can grow much faster than mets in other areas of the body and they need to be treated at the smallest possible size to ensure a successful response and outcome.
Post brain surgery targeted radiation was never recommended or done for Brittany I assume based on the fact that the mets were encapsulated, so I am wondering why it has been recommended and scheduled for you? I don't remember if Ivan had post brain-op radiation, but perhaps he or Olga can/will comment on that issue here.
I know that you need your rest dear Amanda, so I will close for now with deepest gratitude for your thoughtful sharing and for your passionate urging for everyone to be vigilant in having regular brain MRI's and NOT just brain CT's. Hopefully something positive will come from your hard earned realization of the critical importance of brain MRI's.
Please take care of you giving yourself time to recover and heal and feel the embrace of my gentle hugs, my deepest caring, my most positive thoughts, my healing wishes, my warm friendship, all my love, and continued Hope,
Bonni

Hello Amanda

I too am having issues with the "I" electronics but that is the least of my worries!

My breath was taken away when I heard of your hospitalization let alone your blacking out.. I am so very sorry that your care fell thru the proverbial cracks in the medical system

I wanted TO CRY AND THEN I really NEEDED TO YELL as it is so unnecessary!!
You ,as a loving human being so deserve so much more As do all the ASPS patience and their families.

I've been super busy at work but I wanted to say what my heart and mind felt..
Will write more later!

Love
Ya lots

Sleep well our friend

Debbie

[Bonni Hess]

Hello again dear Amanda and thank you for your very kind words and all of the additional information in the midst of your recovery. I am so very sorry that you went through such a very frightening experience but am deeply grateful and relieved for the very good and positive outcome. It was a terrible way to bring you and your doctors to the realization of the critical importance of having regular brain MRI's instead of just brain CT's, but I am so grateful that the realization came without the loss of your precious Life. I am so very glad too that this experience has helped you to be able to manage and overcome your claustrophobic fear of MRI's knowing that your Life may depend on it.
I don't remember Brittany developing a post brain surgery cookie addiction or sugar craving, but the steroids which she was taking to control brain swelling definitely made her extremely hungry with a ravenous appetite! I am so happy that your delightful sense of humor is intact and that you are able to lighten the situation by "finding something either funny or silly" to help you smile so you won't "become a frankenweeine and be a sad lump in the corner." Despite the obvious seriousness and heartache of the innumerous very difficult and challenging situations Brittany has faced, we always try to bring some humor into the situation if possible because we strongly feel that "laughter is the best medicine" since it releases positive endomorphins and strengthens the immune system whereas sadness, doom, and gloom depresses it .
I am grateful that you are continuing to heal and recover and that you will be able to be discharged to go Home on Friday. I understand that you are having memory problems about what happened during the past two weeks and you still don't feel completely back to normal, but you need to be patient and understand that it takes your brain some time to heal after it has been cut into. I don't remember Brittany having any post-op black out days, but the high dose steroids that she was taking to prevent brain swelling did trigger a couple of frightening epileptic seizures and black outs which thankfully resolved once she was completely weaned off of the steroids.
I Hope that Ivan or Olga will be able to share more about Ivan's post-op brain resection experience as well as any other patients on the Board who have undergone brain surgery. I am especially interested in knowing if post-op targeted radiation was done and if they feel it is necessary since ASPS brain mets are typically encapsulated so it seems that there shouldn't be any microscopic residual cells in the resected tumor space. Of course it is always better to be safe than sorry so perhaps the targeted radiation is a good safeguard against possible tumor reoccurrence in the resected tumor bed. This would be a good question to pose to the doctors when you discuss the targeted radiation with them.
I continue to share with you, your husband, your precious son, your doctors, and all of those on this Board the great relief and happiness of your successful surgery, and to hold you very close in my heart and my most caring thoughts dear Amanda.
Reaching out across the miles to embrace you with more gentle hugs, deepest caring, healing wishes, all my love, and continued Hope,
Bonni

[Amanda]

hello <3
Just an update an to let you all know I am doing very well an I go home tomorrow.
The rehab saved my life an I feel blessed I was able to spend a week here.

I go home tomorrow an have spent time testing an doing OT PT ST an neuro psych testing to make sure I am ok. I am thank the load! the tumor thing was on my frontal lob an for the first few days when I would see something ing pretty I would cry

Surgen came by today an re after med all was taken an I asked if it was in capsules he didn't seem to know? I don't. Get that but he was not main surgeon I see him in I think two weeks an he did say all was great

In response to radiation they are doing this to make sure an I do feel confident that it will be fine an they are doing this like they did my leg because we had no reactance

My shoulder is clear now Of sarcoma but the rotator pain is evil. I do have pain felt with an under controle but the slightest wrong turn an I cry.

I can't believe the last two weeks.

My memory loss is a way of my head per the neuro psychologist to help me so I am not poking the bear

My brain was also so swollen that it took two days to get it down low enough to do the first surgery.

I am every three months MRI an I am adding head to tow bone scan because that seems to be its fav place to go

I am doing with contrast ct lungs ab pelv also every three months for six months

I don't think they will fight me on this. We need to get ahead of this so I can live an I still feel I have a chance to get to a stable disease I have no idea why I think I can do that but I do

I again will not stop to MRI an they said if there is a problem they will medicate me with a light sedation an that works for me
Also Jason my husband will be standing right there by me

This woke me up. I stayed ahead of this an got cocky. An now look at me.
My team feels if I stop being cocky an stay up on scans an if "even my toe hurts" I am to go right away to the ONC to see dr an scan. The after precautions of these scans are not worth how I am right now. I know some are holding back on MRI read my story an do not get cocky it's not worth it. An if a dr says don't MRI a little one I know it's frightening but ask yourself if that worth seeing the little pen like me. My god it's not an at a young age when the sex hormones turn on from what I know then so fallows a tumor I did the fear an no MRI game I lost an in little ones I tics even more a risk.
It's 30 minutes to make sure the babies are ok

Please mommy to mommy scan
The once are wrong an it is a false feeling for some form of immunity to a tumor
If I were a parent an I am a very protective mommy as you are all...

The risk of no scan does not out weight the tomorrow chance that with asps sleeps in small yet removable size. NED life is a dream that can happen if you get it fast an keep getting it fast from what I have read an isn't it better to make sure an our reason ability ?
The once don't know asps as we do..

Anyhow, I am going to try an sleep.
Please consider what I have said I am sorry if it is preachy but I would not be saying this if I didn't think it was important an I would love to know that it saved some lives of out future
Weird I am looking forward
D to my MRI now lol

I will post more tomorrow...

I am happy, I am healing, an I dogged a bullet with divine intervention I am still alive I can't even start to explain how this is effecting me

I am happy an yes Bonni laughing at as much as I can lol laughter kills cancer I wish we could can it .. What a mess denial can bring I am not happy with myself but I will now live an never do that again

Love to you al!
If it was not for all of you I would feel alone an. Smile an tell the medical staff here
We are a small close family an when I am frightened or Ned help they are there for me <3

G night

[Olga]

Amanda, it is good to hear that you are going home tomorrow. Are you on steroids? Do you have to start to get off if them already?
I also missed the thing about the shoulder - didn't know that you even have a met there, was it in the bone or a soft tissue?
Good night,
Olga.

[Bonni Hess]

Happy Homecoming dear Amanda Thank you for your continued thoughtful updates and stressing the critical importance of patients being pro-active and vigilant with their scans, especially having regular brain MRI's, and NOT just brain CT'S which have repeatedly proven to be inadequate in finding brain mets at the smallest most treatable size. If a doctor refuses to order a brain MRI instead of a brain CT, I think that the patient should seek care from a different doctor. Following Brittany's ASPS diagnosis in 2001 we contacted Dr. Richard Benjamin at MD Anderson for advice as he was known as one of the leading, most knowledgeable, and most experienced Sarcoma doctors in the United States. His immediate advice to us was for Brittany to have a brain MRI and NOT just a brain CT. Thankfully at that time the MRI did not show any brain mets, but they were unfortunately later diagnosed in 2004.
I am grateful that you will now be having regular and appropriate scans to help you better manage and fight your disease.
I Hope that once you are Home you will be able to rest and continue your recovery from all that your body has been through, and to regain your physical and emotional strength and energy. Take care dear friend, have a restful weekend, and keep in touch as you are able.
With caring hugs, healing wishes, positive thoughts, much love, and continued Hope,
Bonni

[Amanda]

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