Ivan rocking it since 2003

ASPS patients post updates here, including tales of success :)
Jorge
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Re: Ivan rocking it since 2003

Post by Jorge »

Thanks for sharing the good news.
We're glad for you!

Lynette
mikko
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Re: Ivan rocking it since 2003

Post by mikko »

Great news!
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

YAY!!! :)
Hmm i like the idea of sending the scans to another Dr to look also...
“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
Olga
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Re: Ivan rocking it since 2003

Post by Olga »

Amanda, we send the scans to Dr.Littrup because the cryoablation to adrenal mets Ivan had was done by Dr.Littrup, in Aug.2013, as a follow up - he knows what he's done and where.
It is also very beneficial for the drs to get 3-6-12 months or even few years after treatment scans to figure out the typical post-treatment changes and to create the follow up guide-lines, but in order to do that they need to create a data base of the scans to see the similarities and document a large number of the follow up cases. In case when the dr works outside of the regular patient's network (like an expert dr that people travel to get treated by him - like Dr.Rolle or Dr.Littrup) - there has to be a conscious effort from both patient and dr to keep the patient file updated.
Olga
Bonni Hess
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Re: Ivan rocking it since 2003

Post by Bonni Hess »

That is wonderful news Ivan and Olga!! :-) :-) Celebrate and have a great weekend!!
With happy hugs, much happiness, special caring thoughts, and continued Hope,
Bonni
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

So I had my lung CT yesterday. I haven't received the radiologist report yet, but I've looked it over in detail myself.

The one met that was definitely growing, continued slowly. It went 7->8mm in around 5 months. That's slower than anticipated. The other one that went from 3->6mm over the course of a few years has stayed the same.

Now we'll have to see what the doctors say. Ablate at 8mm, or is something like 1-1.2cm better for this location.
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Hi Ivan
Thanks for the update. Great news that it is "slower than anticipated".
What little I understand of the lung, ( dissected a pigs lung with Joshua's 4th grade class?), is the possible wait because of the location of the tumor in the lung or because of the lungs movement ?
Do you know whether it will be cryo of RF?

Thanks in advance. :)
Debbie
Debbie
Bonni Hess
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Re: Ivan rocking it since 2003

Post by Bonni Hess »

Thank you for the updated information Ivan. I am sorry that the met that you are following which has definitely been growing is continuing to do so, but I am grateful that the growth appears to be quite slow and relatively small and that another met appears stable. Are there currently only 2 scan visible lung mets? I will be anxiously awaiting your update on the radiologist report and the doctor's recommendation for treatment for the growing met. In the meantime, have a good and relaxing Springtime weekend doing the things that you enjoy.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Debbie, I only do cryo. Smaller tumors are harder to target, and more healthy tissue can be lost. From previous discussion with Dr. Littrup, 1-1.2cm is the best size in general.

Bonny, my lungs are full of questionable stuff. Some of them are scars, but I know that some of them are just dormant mets. I track 50 items in my lungs 2-8mm in size. There are 6 of them that are 7mm, and one that is 8mm. Most of these didn't move a fraction of a mm since 2008-2009. Obviously that's not counting all the stuff that has already been ablated in the last 5 years.
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

Hello Ivan,
I am getting my scans done in about two weeks an i am thinking of going with your doctor :)

Wouldnt it be awesome if we did this the same day and hung out lol

I will watch to see what is happening with you an i will post as soon as i get my scans done an read...
“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
Jorge
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Location: Shenzhen, China

Re: Ivan rocking it since 2003

Post by Jorge »

Ivan wrote:Debbie, I only do cryo. Smaller tumors are harder to target, and more healthy tissue can be lost. From previous discussion with Dr. Littrup, 1-1.2cm is the best size in general.

Bonny, my lungs are full of questionable stuff. Some of them are scars, but I know that some of them are just dormant mets. I track 50 items in my lungs 2-8mm in size. There are 6 of them that are 7mm, and one that is 8mm. Most of these didn't move a fraction of a mm since 2008-2009. Obviously that's not counting all the stuff that has already been ablated in the last 5 years.
Good news that the growing is slower than anticipated. I'm glad for you!

What about the bigger mets that had cryoablation--I recall one of them is in the size of 2.*cm? Do they show shrinage or stay the same size?
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Yes, the >2.2 cm one adjacent to the heart has significantly shrunk, and resolved, however there is a lot of scarring left around it, obviously.
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

Hello Ivan,
I hope you are having a great spring an that you not posting meaning you are feeling great an being a non cancer patient for a little while! :)

When you have time or maybe your mom an you would be great also i need your help please...
I feel overwhelmed an I truly believe you will know 100% exactly what to say to my surgeon who wants a small amount of information on why you are doing the mets in your lungs with Dr Lintrup *spelling* I know you know a LOT more than many about ASPS an this treatment an i have four to five mets i want done by your doctor...

There is so much here to read an as i said i feel overwhelmed :( I get like this rarely an need help :(

When you have time can we chat a little and form some thing for him please :/ it doesn't have to be long but informative. I wish you guys were out there i will probably have to go alone an i think because it maybe 5 things i may have to go a few times...

If you want to call me either of you let me know an i will send a PM...


Again i hope so much you are doing what i do in between treatments .. you are happy an out being a non cancer patient! :)
“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
Olga
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Re: Ivan rocking it since 2003

Post by Olga »

Amanda, we get lung mets ablated by dr.littrup because Ivan already had 5 lung surgeries and there is a lot of scarring around the lung. To open the lung for the surgery the surgeon has to cut the scars first and there would be a lot of bleeding to trauma for the lung. If there are only few mets needed to be treated, it can be done by ablation to avoid the additional damage to the lung. He only has few growing ones to we go for ablation now
Why cryo - less damage than RFA if to pick between the diff types of ablation
Why Dr.Littrup - he is the most experienced cryo doc in the world, he started this in North Am,
If you never had a surgery on that lung you can have a surgery too.
But you will have to treat the adrenal met first if this is the met, and you should find it out soon.
Olga
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Brain MRI is clear. Next up abdominal MRI in 2 weeks. After that lung CT in October. I'm aiming to have ablations beginning of December as necessary.
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