Ivan rocking it since 2003

ASPS patients post updates here, including tales of success :)
Jorge
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Location: Shenzhen, China

Re: Ivan rocking it since 2003

Post by Jorge »

Dear Ivan,

I'm so sory to hear that. Don't know what to say. Just hope you can talk to the Doctor very soon and work out the following approach.

Best Regards,
Lynette
Kathy
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Re: Ivan rocking it since 2003

Post by Kathy »

Ivan,
Tom had great success with his gamma knife procedures on two brain mets. That was almost 5 years ago and everything has been clear since. Please know that not a day goes by that we do not think of you and your beautiful mother. I am not sure where any of us would be without your knowledge and strength.
We send our love,
Kathy
Amanda
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Location: Los Angeles, Ca

Re: Ivan rocking it since 2003

Post by Amanda »

Hello Ivan an Olga,
Is there any way your US doctor can make it happen here as a compassionate in lue of the fact this needs to be acted on ASAP ... *if this is a met*
I can make calls from here in the US or will help in any way i can just let me know...

Is there any documentation that stated ASPS grows faster in the brain that can be used to make them move on this? I maybe able to contact Dr Chu an Dr Black in Los Angeles Ca to see if there is any letters or info they help with :/

I am really upset that this is happening but as i stated before it is going to come out if it is sarcoma an then you will be back on path... I remember i was at the party around the person and talking to them that had them... both, seemed to heal really fast an it is easier then the lung surgeries from what i have been told :/
“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
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

I ran into a random guy today for work, he's 70ish years old. Started talking to him about something unrelated, and then he tells me his wife has a brain tumor and she will see *guess who* tomorrow? Haha, it's a small world. Cancer's getting everyone out here :-\
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Meeting the doctor Thursday morning. The good news is that there is no wait list, according to the secretary I spoke with.
Josh
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Re: Ivan rocking it since 2003

Post by Josh »

Ivan, I'm really sorry to hear about the bad scans. It seems you are dealing with the news well, but I'm sure you're reeling after getting hit with that. I hope 10 years of battling this unpredictable disease has at least allowed you to roll off the punches quickly. I'm glad you caught it early, and I'm glad you are able to get in to see the doctor quickly. I hope that it turns out to be something benign, or, if not, that your treatment goes well and swiftly.

Take care, man.

Josh & family
Bonni Hess
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Location: Sammamish, WA USA

Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Ivan,
I am so grateful that you were able to get in to see the neurosurgeon so soon, and my special thoughts and very best wishes will be with you during your appointment tomorrow. I am holding very tight to Hope that the suspected brain met is determined to just be a benign lesion, but if it is an ASPS met, I Hope that it can be quickly and easily removed or treated. I will be anxiously awaiting your update when your time and the situation allow.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

Hi Ivan..
YAY for thursday Neuro!
I hope he says its not a met...
But, even if it is you have gone thru WAY harder stuff! It is 4 mm.. You are in great health an are ready to battle!
Though the brain area feels weird to know that a surgery will be taking place there i have seen two others first hand be great soon after!
One is my other half his was deep in the brain an not cancer but it still had to be removed. his recovery was longer. But, not as long as a chest surgery..

I agree cancer of all forms is every where!
We are the generation that will see the start of most cancers eating our world population a it is mainly because of how we have treated our world, bodies, food suplies, air an water an lets not forget GMO the dream food thats already killed birds....

Anyhow, thru this you will rock an then be working out again faster then a chest surgery.

My hope is they re do the MRI because to the Neuro it doesn't look like a met ...

I am looking forward to hearing what he says tomorrow ...
“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
wangcns
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Re: Ivan rocking it since 2003

Post by wangcns »

Man, I'm really sorry to hear this news Ivan, but I'm glad you caught it while it was small. Best thoughts and love to you and Olga, hope you'll be able to get a corner on this thing before it gets any bigger.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

OK, so we met Dr. Toyota today. He was very professional. He reviewed the scans and noted that there was swelling around the nodule. In his opinion, it looked like a met, although there is no way to be certain.

We opted for conventional surgery due to peripheral location (only 6 mm from the surface of the brain) and small lesion size (4 mm).

Pros (vs radio surgery) -
1) Highest probability of complete resection (99% vs 90% or something along those lines)
2) Minimal damage to healthy brain tissue (radio surgery margin of error is +-2 mm, so the whole nodule is within the margin of error)
3) No scattered radiation to healthy tissues (the dose is unlikely to cause problems, but it could)
4) Tumor can be sent to pathology to verify it's ASPS just for curiosity's sake

Cons -
1) Invasive with a big scar on the head and cutting the skull bone; it's at the back side, so the location is not too bad
2) Overnight at the hospital, possibly more than one day
3) More painful, longer recovery

In Dr. Toyota's opinion, conventional surgery was preferable. The idea of "sacrificing" any brain tissue at all to get clear margins seems disturbing to me.

Time frame within 2-3 weeks, exact date to be known within 1 week. There needs to be another higher resolution and more recent MRI scan performed within a week of the actual surgery for the purposes of planning and executing the procedure.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

OK, I am quite amazed at how fast these people work. Much faster than any other area of healthcare I've encountered here.

Received a questionnaire through email, filled it out and sent it back, and got a response that the surgery is booked for June 4 just 20 minutes later.

I'll need to come in for another MRI and a CT scan within 1 week of the surgery, and to speak to the anesthesiologist.
Bonni Hess
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Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Ivan,
Thank you for your very detailed update. I am so sorry that Dr. Toyota feels that your brain nodule is probably an ASPS met, but I am grateful that you found him to be very professional and that he is moving forward quickly with treatment. Based on all of the information which you shared, it seems that resection is the best option especially since the nodule is peripheral and small and does not go through "expensive real estate" as Brittany's neurosurgeon described the only route to access her parietal lobe tumor which unfortunately resulted in the loss of her peripheral vision because of the tumor's location deep within her parietal lobe. When Brittany had her parietal and cerebellum mets resected, the neurosurgeon said that they popped out like a marble since they were encapsulated which is typical of ASPS brain mets. Brittany felt that her brain resection was her easiest surgery of any of her other numerous surgeries since she had much less post-op pain and a much faster recovery. My most positive thoughts and very best wishes will be with you on June 4th for a very successful outcome to your surgery and a speedy recovery so that you can quickly resume your active Lifestyle and enjoy a beautiful Summer.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Ivan
Thanks for the update. Stay strong. Will be thinking positive thoughts your way
Debbie
Debbie
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

Hi Ivan,
I agree that the surgery you have chosen is a better choice...
I wouldn't want extra removed or even touched for that matter!

I am sooooo happy they are moving fast an it is going to take place soon ...

Just a little hill you have made it over much bigger ones an have been alright after recovering!

You will rock this an then it will be gone an the you will move forward as others have an some are stil NED now after this type of surgery... You are lucky you found this so early an blessed that you an your mother are such a strong force fighting this sarcoma! It is how we win an move on!
“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
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

All my scans are done. Tomorrow, we'll know the time for surgery on Tuesday.
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