Ivan rocking it since 2003

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

Post by mikko »

GOOD LUCK!
Bonni Hess
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Location: Sammamish, WA USA

Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Ivan,
Please know that all of us Hesses are sending our most positive thoughts and energy and very best wishes your way for a very successful surgery to resect your brain met tomorrow, and a full and speedy recovery that will find you enjoying the summer sunshine and resuming your very active Lifestyle very soon.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Ivan
Thoughts and prayers coming your way to you and your family
Sincerely
Debbie
Debbie
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

Hi Ivan,
I am so glad they are acting so fast!!
My boyfriend said that a quiet place is important to heal in an that from what he has seen of you "Dood you have this an you will be ok fast" :)

Im sorry you are going thru this but i am so happy you found this so early!!!

Olga, I am sure this is hard an i am sorry this has happened also too you an your husband. But, knowing you i see where Ivan has received his strength an you an your husband will also be in my prayers!

I am looking forward to hearing how he is doing soon an you are all in my thoughts an prayers for a speedy recovery :)
“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
Bonni Hess
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Location: Sammamish, WA USA

Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Ivan and Olga,
You have both been so very much in my thoughts all day today. I Hope that the surgery went very well and that you are both now resting and recovering from all that you have been through today physically and emotionally. Please feel the embrace of my gentle hugs, have a good night and a better tomorrow, and know how deeply I care.
Heart to heart with special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni
Olga
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Re: Ivan rocking it since 2003

Post by Olga »

The surgery is done, it was easy according to Ivan's surgeon Dr.Toyota and Ivan feels reasonably good. He is going to remain at the hospital for 1-2 days.
The met was actually 8 mm which is very concerning to us - it wasn't that slow growing. We observe that some mets grow faster than other ones. We feel extremely grateful to all people shared their experiences with the brain mets including the ones who fought their brain mets successfully (Bonni&Brittany especially) but also the ones that lost their lives due to missed/undiagnosed brain mets - all of you made us realize the importance of the brain surveillance/early Dx/being active.
Olga
Jorge
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Re: Ivan rocking it since 2003

Post by Jorge »

Olga,
I'm so glad to hear the surgery went well and Ivan is doing well. You both can take a rest now.
I agree with you that the brain mets usually grow very fast. So maybe you need to be very careful with the brain supervision from now on...

Best wishes,
Lynette
D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

It' is wonderful to hear from you
Special hugs from us all
Here's to a full recovery !


Love
Debbie
Debbie
Bonni Hess
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Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Olga,
Thank you for your very thoughtful update with the relieving news that Ivan's surgery went so well and that he will be able to be discharged from the hospital in a day or two :-). I Hope that he has a very speedy recovery and will soon be able to be outside enjoying this beautiful Pacific Northwest summer sunshine. It is frightening that his brain met grew so fast from 4 mm. to 8 mm. between the time of diagnosis two weeks ago and yesterday's surgery, and I am so grateful that surgery was able to be scheduled so quickly to ensure the most successful outcome. ASPS brain mets do seem to grow much faster than mets elsewhere in the body, and this is the reason that I so strongly recommend and urge that ASPS patients be vigilant in having annual brain MRI's if they have no previous history of brain mets, and brain MRI's every three months if they have been diagnosed with brain mets. Hopefully you won't have any problems with the Canadian medical system in terms of them authorizing three month brain MRI's for Ivan. After Brittany was diagnosed with her first two brain mets in 2004, we became aware of the critical importance of the three month brain MRI's from the wife of an ASPS patient who had tragically lost his courageous battle a few months before. His widow thoughtfully wrote to me to warn and urge us to not allow the doctors to only schedule Brittany's brain MRI's every six months because during the five months between the resection of her husband's brain mets and his scheduled six month brain MRI, he developed brain mets that had devastatingly grown too large to be resected or treated and he consequently tragically rapidly succumbed to his disease as a result. Brittany's currrent radiation oncologist in Seattle continues to try to persuade us to go longer between having Brittany's brain and spinal MRI's since she has thankfully had disease stability and no new brain or spinal mets for the past four years, but knowing how very unpredictable this insidious disease can be, and how rapidly ASPS brain mets can grow, we continue to refuse and tell him that we are unwilling to take the risk of going any longer than three months between the brain and spinal MRI's which don't pose the radiation risk that CT scans do. My greatest Hope is that Ivan's brain met is an isolated case, and that he will not develop any more, but I know that based on your extensive knowledge and the shared anecdotal experiences of other ASPS brain met patients that you will agree that it is critically important for him to now have more frequent brain MRI's than his previous annual ones.
Please tell Ivan "Hello :-)" and give him and yourself gentle hugs from all of us Hesses, and know that we are all holding both of you and your family very close in our hearts and most caring thoughts.
With deepest caring, very best wishes for a speedy recovery for Ivan, and continued Hope,
Bonni
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Hello everyone. I'm back! Yesterday wasn't a very pleasant day, but not too painful. I didn't take _any_ painkillers at all since waking up. I'm outside leeching free wireless and enjoying June sunshine. I'm planning to head home tomorrow morning. Today I feel excellent.

May 9 was the first MRI, and 3 weeks later it was 8mm instead of 4mm. Dr Toyota specified that part of the apparent growth could have been resolution of the first scan being worse than of the second one, but nevertheless - this thing grew fast. I'm glad it was dealt with very quickly.

My next MRI will be scheduled for August. Dr. Toyota will be helping with reading and scheduling them more frequently from now on. He seems like a very nice doctor.

Stitches will be removed 1 week from surgery date. The scar looks pretty scary for now :p
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Chilling outside in my cool hat.
Attachments
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D.ap
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Re: Ivan rocking it since 2003

Post by D.ap »

Very cool hat, Ivan. : )
So good to hear from you
Keep up the good attitude!

Sincerely ,
Debbie
Debbie
Amanda
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Re: Ivan rocking it since 2003

Post by Amanda »

Hi Ivan :)
Thats a really cool hat! lol
I am so happy it is over and you are going home :)
The scar is huge but his hair grew over it so it is hidden now as yours will ..
“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
Bonni Hess
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Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Ivan rocking it since 2003

Post by Bonni Hess »

Hi Ivan and thank you for the good news update and special picture :-) You model your hat very well and I especially like the happy smile :-). I am so glad that you are doing so well, were able to get out and enjoy the sunshine yesterday, and will be discharged to already go Home this morning which is truly amazing following brain surgery!! Dr. Toyota sounds like a very good doctor and I am grateful that he is willing/going to schedule more frequent brain MRI's which is so very important in managing this disease. Have a happy Homecoming from the Hospital and enjoy a very good and relaxing weekend as you continue to recover and heal.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
D.ap
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Joined: Fri Jan 18, 2013 11:19 am

Re: Ivan rocking it since 2003

Post by D.ap »

So Ivan and Olga
Hope this day finds you both in high spirits and doing well :D
What was the name of the procedure that was performed on the met?
Debbie
Debbie
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