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

[Amanda]

Hello Olga,
Im sorry i am so upset Its just he is like a hero here an i felt safe with him an i felt like it was ripped away :*(

Barbara called me she is a love an she said she was a little confused. she said they maybe to close together but isn't Ivans also.? The one we are concerned about is 2cm on the tip of the bronchial area... My Dr in LA is very nice an he works hand an hand with Dr Suh.. I also saw a post from 09 with 'F' an if i am correct he was chosen to help her lil one an thats a big deal... Anyhow, Barbara said she would call me back after talking to him. Who knows he may have talked to Dr Al at UCLA they do know each other.
*thank you for telling me he doesn't respond himself i will also let my Onc know because i am pushing a strong connection with them my onc is the head of sarcoma for Cedars an there connection will save many lives*

I am in pain *MY jay an ear area are starting to recover an i feel the pain there now its a good an bad thing* sigh*
an upset an in a head space that is very unlike myself an i think depressed to be honest... I have never been depressed ever! I guess it was due after five fears of this *fill in horrid words* sarcoma
I am worried about Kevin and are south african family an everyone in this hell! My husband thinks i need to step back from the forum but i cant!!!

I wish sarcoma never entered all of our lives :*(

[D.ap]

Hi Amanda

I am so happy the day is bringing you to some answers .
I am sorry to hear of your pain though
Are you able to perform any kind of PT to help with the pain?
I could read between the lines and see how sad you were with all that has happened on the forum the past 6 months.
We are all here for you and are sharing in the sadness. Know that you can always have a safe place to come to talk

Much love
Debbie

[Amanda]

Hello,
Ok, i spoke with Dr Albi UCLA an i cant spell his name but he has seen ASPS patients one we all know but i feel that i can not share this name ... I will say that he was successful

He has already scheduled me for five treatments starting next month an we haven't even met face to face yet

We are going for the bronchial tumor first then the rest.. we will be going after them all! I am praying that they will all die a death that is constant! I told him i want them all killed an he said thats what he wants to do also..
this would render my lungs sr=table of all growing tumors ))

He said that most of my tumors are in the right lobe an if this isn't working it comes out!

I am praying to be free for a while from surgeries an to live an be a mother

I just got a call back from Dr Blackwell's office i don't know if i posted but i have been in a large amount of pain radiating from my jaw to my shoulders and my rib cage at times.. I am also having the feelings of nerves regenerating from my jaw surgery.. good pain but some of the worst i have ever had... So i am celebrating my Dr telling me it is normal an a great sign it means i will get feeling an hearing back )

I now think i get why Dr L said to go there... I am in very able good hands i am happy now

[MarietjievdMerwe]

Dear Amanda,

All i see is happy faces! I am so happy for you my Friend. May this be the beginning of your long road to recovery. God knows, you deserve to be happy. Such a sunny person.
I am over the moon that you are now getting the treatment you deserve.
Lots of hugs from an icy South Africa.
Marietjie.

[D.ap]

Amanda

Sooooo happy to hear the news !
I am so glad you are feeling good about the future
Love ya
Debbie

[Amanda]

Greetings,
I will be seeing Dr at UCLA tomorrow an i will post back as soon as i get home to fill you all in
Please, say a prayer that the pain in the clavicle an clavicle join an sholder will NOT be a problem and that they will start the treatments on my lungs!
Dr at UCLA told me on the phone there will be five treatments an they will start next month and be two weeks apart... He is going after i think ten mets that had changed size over this time...
When i get back tomorrow i would love to hear if thats to much on my an or if you think thats to close together or any thing you feel is important!
Though i am in wonderful an loving hands at UCLa with this Dr i want my family's input!

We will also discuss the THING on the liver that can also be treated an who will do this.. i told him i will not allow any biopsies ever an if it gains a size that it should be treated as sarcomas and killed!
Are hope is no tumors one day in the lungs or stability... *praying hoping*

I have had an open biopsy by a specialist Dr Brian who knew what he was doing 100%
An the other biopsy was on the bone an it was at skin level
I would not ever get another one an i will treat all things that grow as sarcoma...

Hugs!

[Olga]

Amanda - it sounds as a good plan but I do not see anything re. adrenal nodules, and this is what needs to be addressed soon IMHO, as they were fast growing. In general the mets would need to be treated in an order of urgency - based on their speed of growth and the location - if they are close to something important and may grow into that as they grow.

[Amanda]

Hi Olga,
I will ask for a scan to be done to look at the size of this thing now even if it didn't show vascular an then we will make a decision on what will happen first..
Thank you, i agree

[D.ap]

Girls rule
Not really. At least not all the time
Good tag team Olga and Amanda

Love ya
Debbie

[Amanda]

Greetings,
I am happy and slightly frightened for a few reasons.. But, i am happy that i will be doing the cryo an that Dr Abton is amazing an calm an supportive in ways many Oncs are not! I am blessed...

Well,first the 2cm on the adrenal gland he says it is a tumor. He says that it maybe that it is inside slightly an that when tumors enter that gland there can be bleeding an that it may be why it is so large so fast.. But, it is second to go an within i would say 6 weeks? or less! . what kind we don't know an he said what Olga said it is growing faster than this ASPS usually grows an i spoke of Ivans situation an he listened to me!!! He actually listened.. so many oncs don't an i am impressed I am being referred inside UCLA to a person that freezes these tumors in that area and they will be speaking with Dr L

problem is the right lung an the tumor on the bronchial tip!!! Right now it has NOT entered an if it does there is a strong chance i will have to remove the whole right lobe!! The right lobe contains 10 mets some never grew but thats the high population area! In three weeks we will freeze that met an pray there is no problem! If there is a problem i will be staying in the hospital an my right side lover right lobe will be removed!

Olga what are your feelings on this? In 2013 i had a small lesion there he said... WTH!!! No one said anything

They are all consulting an then i will talk to them an then we go for it all!!!

His plan is if all goes well ten mets or any thing that has grown will be attacked and frozen )

Also Dr L is involved btw they are all talking <3
They have been talking for years!

I don't know what else to say right now other then i am thankful that i came to this forum an i am thankful to be bright an insightful enough to listen to the posters here because if i had not WOW i probably would have passed or be close to it now

[D.ap]

Hi Amanda

You are doing great !
The question I have is if cyro is shown not to be working with the bronchioles problem child,
why would a third of the right lobe be removed ? What is the goal ? To prevent or improve breathing ?
With Olga's response I am sure that a clearer picture will appear

Be strong my friend

Much love
Debbie

[Olga]

Amanda, it is really good that things started to move overall.
I would try to facilitate the adrenal met cryo, try to get an appt with that dr fast - call his office, ask if they got a referral already and keep calling till you get an appt, see him and ask to get it done fast.
Re. Lungs:
what are the sizes of the rest of the mets there? BTW, do they say that in case of the complications they will have to remove the whole right Upper or LOWER lobe? I did not get it. There are 3 lobes in the right lung and 2 lobes in the left lung. If the complicated met that is going to be treated first is located in a tip of the lung, why do you say they might have to remove the lower lobe? It is a regular practice with cryo that you are being told that in case of the complications during the procedure it might be converted into emergency open surgery and by the location they probably see that the repair of the lung might not be possible without them removing the whole lobe. This is why people fly to Germany and pay for the surgery with Dr.Rolle - to preserve the lungs because using conventional methods it is often impossible to remove the centrally located mets without removing much more tissue then he can do. After Ivan had his first surgery by Dr.Rolle back in 2005, he had a post op complication back in Vancouver a month after the surgery - his lung collapsed after the stitches tore in one hole left behind after the bigger centrally located met was removed. Our local surgeon had to perform an open surgery to fix that. He is the head of the thoracic department here and a very good surgeon, but he said that he had to urgently call the head of the teaching department of surgery at the University of BC to arrive and help so they worked together 4 hands to be able to fix this hole without the need to remove the lobe.
The key here is to estimate how high the potential risk is that this situation may happen that you will have to loose the whole lobe, if the risk is high then I would consult Dr.Rolle if he can so the surgery without loosing the lobe. If the risk is regular, then to go ahead and cryo that met. If they do not feel confident that they are able to cryo the met that close to bronchus then to ask them to admit that and to be referred to Dr.Littrup again just for the complex met only and do the rest more easier cases locally (this is what we do but on the other hand your local drs are too very experienced and they might be ready to perform that after consulting with Dr.Littrup, they are the members of the same society and learn from each other, he is an expert and teaches the others how to do the complex cases).
The main thing with the cryo is timing, try to sort it out as fast as possible and move lungs and adrenal in parallel, whatever happens first. Adrenal met ablation is an outpatient procedure and if successful it is easy for you to go trough.

[D.ap]

Hi Amanda

If I am understanding Olga correctly, the adrenal gland is the most important to take care of..and possibly not as hard to recover from. So by taking care of it first then if the lung tumor couldn't be performed by cryo in the lung and had to be performed otherwise by a lobe sectioning? then you would have the adrenal gland done and then could have the more intense longer to recover from surgery on the lung performed.
Checking with Dr. Rolle is a great idea too.

Love
Debbie

Amanda
Short cut which I am sure you recall and have read but its important

http://www.cureasps.org/forum/viewtopic.php?f=9&t=818

[Olga]

No, Deb, adrenal glad tumor and the lung tumor that is very close to a bronchus are both important because if the grow further they may became untreatable by cryo - if the lung tumor grows into the bronchus and the adrenal tumor grows into something close to it - I saw the scans before Ivan"s adrenal cryo and there were lots of other structures close by adrenal, looked very crowded in that space.

[D.ap]

Olga

So we don't want them to become too big for using the cryo in either case.

Thanks for the clarification.
I am learning all the time.

Love,

Debbie