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

[Amanda]

Hello and thank you both <3

Olga, i will call monday and ask to see the ablation Dr that will treat my adrenal lesion asap... It maybe that the adrenal will take longer to heal and the lung wont an thats why they are going in this direction?

Dr Abtin said these were possibilities that i could have a complication an only that he said he must tell me it could happen worse case.. He felt it wouldn't and i trust that but he said he tells everyone worse case because it wouldn't be right not to..
BTW if i am correct he treated Fernetts lil one when she had the heart met. He wants to keep as much healthy lung as he can an he says it is why he wants to act asap on the lung..
He said most of the mets are also in that right side lower lob an if we did remove it over half what i have in there would be gone.. But that he didn't want that to happen for the same reasons you said.

My husband an i are confused but it seemes in 2013 it may have been there but smaller an he agrees for ASPs this would be growing faster.. i told him about Ivans met growing very fast. Was Ivans met on the right side also?

Olga thank you!!!!
You know i actually wait to make final decisions on what you tell me because you have always been right!
I still wish i wouldn't have done the radiation lol

He said no matter what thru all this i will be ok even worse case but he wants less damage as do you and I an ablation is that road

He said i have taken good care of my body an that i will be ok.. Its true i am active an never did drugs nore really drank..
I am glad i was never a party girl because it does make a difference.
I just hate taking norco for this dam nerve pain! IT IS SO BAD!!!!! I am taking 10mg every 5 hours.. i do think i can tell some feelings are coming back so i guess in the long run it is worth it :/

[Olga]

OK, let see f I got it right and correct me if I am not - the concerning lung met that is going to be cryoablated is located on top of the lung but there are also many small mets in the lower lobe that either need to be treated too - although there are may be to many of them for the ablation to be a real working plan - or using the conventional methods of surgery whole lower lobe would need to be removed (your alternative is to consult Dr.Rolle, but we also have few known cases when the lower lobe was removed and people live just fine without it as the lung expands and fills that space, it all depends if other lobes are also affected and the overall extend of the lung mets). Adrenal mets need to be cryoablated anyways and if you have them, Dr.Rolle will not do the surgery, only after they are treated first.
About the nerve pain - did the pain doc talk about Gabapentin? Ivan used it after one of his open thoracic surgeries when the intercoastal nerve pain was very bad and it helped. It is a non-narcotic drug.
Gabapentin in acute postoperative pain management.
http://www.ncbi.nlm.nih.gov/pubmed/24829909

[Amanda]

Hello Olga
The right side lung met is a lil over 2cm an it is on the tip of the lower bronchial an that area is in the right lobe. He said he can kill that met an then in a few weeks a few at a time kill the others. He said all the scary things that could happen because he said he had to.. but he also said that he has never had a problem like that before. So i asked worse case if it did what would happen. He said that i would remain in the hospital an they would just go ahead an remove the right lobe. He said 10 of the mets are there an that either way things would be ok.

His reasoning about doing the lung met that is on the bronchial asap first in maybe two to three weeks they are rushing me in as fast as they can so this met does not enter the bronchial .. What are your feelings on that :/
How soon after the adrenal met is removed do you think i can undergo the bronchial met? If soon after i will schedule them bost as asap an then what ever falls first i will do?

The pain is so bad i can't believe this is a good sign lol I am in a mix of nerve an muscle then tenden.. It is from the jaw surgery that also went behind the ear to get the lymph nodes an stuff so there was a lot of things cut an moved about.
Pain for nerve starts in my ear an travels all the way on an off like stings from my ear log to my chin..
I have a constant aching pain in my ear an behind my ear an if i touch even slightly my ear log i have pain in my chin.. isnt that odd in my chin *sigh*
here is a tendon between my ear an jaw that runs down my neck an goes over the clavicle an the clavicle joint that is killing me.
I have muscle spasms on the front an back of my shoulder an neck.
The clavicular joint is so painful its horrid.
my joint from all this on my shoulder is also in pain.
When i wake up an try and sit up an mind you thats a feat in its self the pain is a 9
I am trying to deal with this thru advil an norco 10 mg i cant stand feeling stoned an i have a child *sigh*
An heat hurts lol
I am calling a chinese doctor an going to see him asap for help. I will also call my onc tomorrow about this drug ty )

I am a train wreck lol i sound like a 90 year old bitching over tea with a girl friend lol

[Olga]

Girls, I removed all the unfinished posts - hope it helps. If the drs say the "as fast as they can so this met does not enter the bronchial" - it is better to do it as fast as they can - when are you going to find out what is the date? Schedule the adrenal ablation consultation as early as you can, by the time you meet the guy the date for the lung ablation is probably going to be known then and you will work around it to schedule the adrenal ablation before or soon after the lungs. They can be done in a week apart. Ivan and other people even had diff lungs done by Dr.Littrup few days apart in Detroit.
I am very sorry about the level of pain you are experiencing, and I am hoping very much for it to improve.

[Amanda]

Hello Olga
Ok, july 31st is the lung an he is using general anesthesia for this he said that my tumor may bleed or if there is a problem he wants me under anesthesia :/
He says sometimes the lung does collapse or bleed an i will be asleep if that happens an then awake when they fix it .. he said it usually doesn't happen but he is taking no chances an wants me comfortable. How do you feel on this ?
I am he also talked an the first night i will remain in UCLA to be watched i live over thirty minutes away an the first 24 hours the the main threat right?

He will be talking to the doctors he works with an they will review the scan on the adrenal gland an they will act as fast as they can

BTW i hope up this morning an for the first time in a month i could kind of stretch! I love when i wake up to stretch in bed lol
My pain is seeming lower so i dropped the norco to 5 mg an took two advil an i hope that helps

[Olga]

July 31st is not bad. In Vancouver when Ivan had his easier cases of the lung mets cryoablated by the local dr, he was always given a general anesthesia and stayed overnight after it. Dr.Littrup does differently - he prefers the deep sedation (probably because he is more confident in his risk evaluation ability so he knows better when to expect the complications - although we have patients that had their lung collapse with Dr.Littrup too), and he usually keeps Ivan till the end of the day in the ICU and later we are sent to our hotel the same night where Ivan is only under my own supervision and care - which is kind of scary as I am always afraid to miss the internal bleeding signs or something else. There was only 1 case when he was kept overnight in Detroit. I think it is mostly done that way to save our money and if you can stay overnight and be under the professional surveillance - I would say it might be safer, although there is a lot of hospital infection going on around and it is too a real danger. Do you have pneumonia vaccination?

[D.ap]

Hello Olga
Ok, july 31st is the lung an he is using general anesthesia for this he said that my tumor may bleed or if there is a problem he wants me under anesthesia :/
He says sometimes the lung does collapse or bleed an i will be asleep if that happens an then awake when they fix it .. he said it usually doesn't happen but he is taking no chances an wants me comfortable. How do you feel on this ?
I am he also talked an the first night i will remain in UCLA to be watched i live over thirty minutes away an the first 24 hours the the main threat right?

He will be talking to the doctors he works with an they will review the scan on the adrenal gland an they will act as fast as they can

BTW i hope up this morning an for the first time in a month i could kind of stretch! I love when i wake up to stretch in bed lol
My pain is seeming lower so i dropped the norco to 5 mg an took two advil an i hope that helps

Amanda

All great news!

Olga
Thanks for fixing my snafu

Love
Debbie

[Amanda]

Hello
Well. for the first time ever i saw a pain doctor.. this pain is soooooo bad!
He said nerve and muscle spasms an i agree an omg again soo much pain
It is from the head an neck surgery.

I am taking the norco an i will be starting lidocaine patches where it hurts an also i am going to use a cream that is an anti inflammatory.
After my procedure on thursday i will be soon after starting a physical therapy on my neck an acupuncture.
It will be the acupuncturist i posted here to another ASPS friend
The pain doctor was amazing an he did a pressure point on my shoulder an though it hurt when he did it an he did warn me i feel a little better from it.

I see the other cyro adrenal doctor on the 5th of August an i am having a CT with contrast...
I did contrast at UCLA before the jaw surgery and i didn't get sick! I guess they use different stuff in different places.

busy busy busy

[Amanda]

OMG!
I used the cream they gave me it is basicly advil in a cream form so it is better on your kidneys an liver an all the other stuff!
ITS WORKING already! 30 minutes later an i am at a lvl 3 pain now ))

it is called Voltaren 1%

If anyone is having inflammation an pain this is working for me an i would think it will for you also. It even smells nice lol

It also works on bone cancer areas...

Is there a place in our forums that i can post about this pain medication?

[Olga]

Yes! It is even called Pain management:)
http://www.cureasps.org/forum/viewforum.php?f=54

[MarietjievdMerwe]

Amanda,
I am so glad that you have found a good source of pain relief! Is this the same as Voltaren Emuljel?
Marietjie

[D.ap]

OMG!
I used the cream they gave me it is basicly advil in a cream form so it is better on your kidneys an liver an all the other stuff!
ITS WORKING already! 30 minutes later an i am at a lvl 3 pain now ))

it is called Voltaren 1%

If anyone is having inflammation an pain this is working for me an i would think it will for you also. It even smells nice lol

It also works on bone cancer areas...

Is there a place in our forums that i can post about this pain medication?

Amanda,

Sooo glad to hear of pain relief !
Post info on pain relief section when time allows

Love
Debbie

[Bonni Hess]

Dear Amanda,
I am so grateful that things are moving forward in a positive direction with both the scheduling of your ablation treatments and your pain control. I know that you are very frightened about your upcoming ablations but it sounds like you are in very good hands with your experienced and knowledgeable ablation doctor and that he will be closely monitoring your post ablation recovery with an overnight hospitalization. As with Ivan's Cryo experience with Dr. Littrup, Brittany was only kept and monitored in recovery for several hours post ablation before being discharged to return to our hotel with us. Also, I am grateful that you will be receiving general anesthetic during the procedure instead of just conscious sedation which is Dr. Littrup's choice for sedation during the procedure and which was unfortunately not very effective for Brittany. I will be right there with you in my heart and thoughts on Thursday during your Cryo procedure, and I will be anxiously waiting to hear an update when you are able.
Reaching out to embrace you with special hugs, deepest caring, best wishes, positive thoughts and energy, much love, and continued Hope,
Bonni

[D.ap]

Hi Amanda

The day is almost upon you.
Thinking of you and wanting to say so
You will do and be just fine.

Talk with you when you are able.

Love
Debbie and family

[Amanda]

Hello i am home
It went amazing! Very little bleeding if at all!
An it was a 4cm ablat area he wanted margins

My doctor is amazing!!!!!! we now have a west coast doctor that can do this !!!
This was managed better than almost any thing i have ever had done!
I have NEVER had a doctor manage every step of a treatment!
Because the cancer is so rare an how he needed to approach this met because it was difficult area and jaw precautions to not open to wide.
he had meeting with the people on his team!
We will be going after them all but we will be taking a short break between everyone of them. The reason is the white blood cells clean the areas up after the treatments an he don't want to overwhelm or the immune system? I am not sure clearly why but it made excellent sense when he said it.. i will try an ask him to repeat this so i can post it correctly hehe

Evidently the tumor was over 3 cm!!!! He went in with three probes? an did something different to minimise any bleeding. I need to find out what he did but it was a new way of doing this. IT went GREAT! Bleeding was so little he was so happy! So was i
I love this man he is also caring an saw me a few times after the procedure! He has a fellow an she is a love an she was there also a lot.. I have never had anyone see me this much after a procedure and care so much! Anyone needing this should see him if they are here on the west coast

I am going to rest i feel a lil wobbly hehe

hugs to all!
I will post his info an contact info here ..
an also find out the particulars an post there more thurly soon <3

The day before my procedure anesthesia had set up all that would be done to protect my jaw! An i feel nothing today an that means she did it all correct an my jaw is great!