Ivan rocking it since 2003

[Olga]

Just to add some comments:

1. Brain MRI was done almost two weeks ago, had to wait 11 days for the result - they are very overloaded/short stuffed. Very happy with the results. It is more than a year since the first and only one brain met was found in June 2013 and resected very soon after.

2. Abdominal MRI is going to be done in two weeks from now as a follow up after 2 adrenal mets were found last summer, about a year ago, and cryoablated soon after.

3. Two very slow growing lung mets are being watched closely to pick the best time for them to get big enough to be reliably targeted by Dr.Littrup. We have our own local cryo ablation doc in Vancouver, but although he is a good level doc as well in some cases - central location close to major blood vessels - we want to use Dr.Littrup although we will have to pay out of pocket for the high quality treatment and travel expenses. I just realized that the last lung mets treatment - cryo - Ivan had was done in Apr 2013 - more then a year ago so no any invasive procedures to his lungs for more than a year, which is very good considering how many lung mets Ivan had in the beginning of his ASPS story, before Dr.Rolle cleaned vast majority of them by his laser assisted surgeries - starting from the year 2005.
Last Spring and summer were a very scary time for us with the massive cryo ablation in Apr, brain surgery in June and abdominal cryo in August, but after that Ivan is having a very nice continuous break with no any treatments for 11 months by now!

[D.ap]

Olga and Ivan

The reports sound great !
We are so incredibly glad to hear it

Thanks for making our day!
Much love
Debbie

[mikko]

That´s great news!

[MarietjievdMerwe]

Fantastic news! I am very very happy for you.

[wangcns]

that's great news, i'm so happy to hear this!

[Amanda]

Wonderful news!
Yes, you went after many mets an the surgery over a short period of time but it all went great!

I am glad you are going to be able to see Dr L for the mets! You are very lucky!

I hope that you had a great trip an i am praying all scans will be clear an you will be free to be you!

[Amanda]

Ok, so the truth is i am frightened! I know a lot of the times i am not an all positive but i am frightened.. Guess because i see him tomorrow and i kinda wish you were going to be there with me lol You an I seem to be on close trips with this... Only thing is this last month i have had so much pain from the healing i am low on positive unicorn an butterfly thinking lol I am not saying you think like that* lol

What you said to Bonnie sounded a lot like me the me that isn't in pain exhausted an kinda depressed i have to take more pain stuff then usual an BTW i hate pills...

Ivan thank you for posting this an seeing that it went well with you i will now feel less frightened! Thank you my dear ASPS friend <3

Feeling good today. It appears the cryo probes went through my right erector spinae (lower back) and psoas (hip flexor) muscles. They hurt like they've been sprained right now, but hopefully this will subside shortly. We walked around Detroit for about 2 hours, taking breaks in between. I felt very tired at the end, to be honest, but it's fine. I've been able to get a lot of work done on the computer as well.

Debbie, yes I think it's the anesthesia after effects. Especially when I get general, I can SMELL something revolting for about a day after and it makes me gag. Except in reality there is no actual smell there, it's just some weird side-effect.

Bonni, honestly I hardly feel anything anymore. When I first heard about my brain metastasis through an email, I was working alone. Yes, for about 30 minutes I felt fear because it was something new and unknown. It's entirely expected that something bad will come up, and soon. I also entirely expect some wonderful doctor somewhere in the world to be willing to take my hard earned money and fix that crap. It doesn't bother me, it's just part of the game. I've been playing it too long to be bothered. I just abide by the rules, and win.

I never feel nervous about the scan results - I remember I used to. Now, I understand that scans are merely knowledge catching up to reality, so I anticipate them more than anything. I don't feel nervous when I open a new scan before the results are out to see for myself - which at some point I did. In fact, I feel better telling my oncologist myself that I see a met that grew before she even gets the radiologists' report. It's empowering. I generally don't feel nervous when I'm told there's some new crap to deal with it. I don't feel nervous when I'm being wheeled off to the operating room, or the day before. It's boring, familiar, and EASY for me. At the end of the day, all these people are trying to, and helping me. I'm not a concentration camp victim left to die of hunger in the snow. It's really been pretty good so far.

The last painful surgery I had was 4 years ago - and it honestly wasn't even that bad. The worst for me was my first thoracotomy in 2005, and then the pneumothorax and second thoracotomy with nerve pain. That was almost a decade ago. The subsequent thoracotomies weren't as bad. The truth is, the standard of care they provide in Coswig is top notch, so it wasn't that difficult to overcome the surgeries. I remember a few years ago I would even feel nostalgic, like it's "time" to go back for another thoracotomy. It's funny I don't think I experience more stress in my life than an average person does.

It would be different if ASPS took something from me - like a leg - but that hasn't happened so far. I can make a full recovery from each of these things. Furthermore, I've gotten stronger, faster, and fitter over the last decade.

[MarietjievdMerwe]

Dear Ivan,
After reading your post I just feel like giving you a great big hug this morning. You are one very brave and strong young man.
Stay strong.
Marietjie.

[Amanda]

Yep he is

[Ivan]

Amanda, glad I could help

I got my abdominal MRI done this morning. Results should be available in the next 10 days or so - who knows..

[D.ap]

Ivan
Thanks for the post .
Looking forward to sharing with you the news soon
What are you doing for fun these days ?

Love
Debbie

[Bonni Hess]

Dear Ivan,
I am so happy and deeply grateful for the very good results of your recent brain MRI, and am holding very tight to Hope for equally good results from your yesterday's abdominal MRI. I am sorry that you have to wait so long for the scan results which I know must be very stressful for you and your family, but Hopefully you will be able to divert your thoughts from the scanxiety by doing some of your favorite activities in the beautiful Pacific Northwest summer weather. I will be anxiously awaiting your scan results update and sending my most positive thoughts and energy your way for very good news.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

I am glad all is looking good )

I am going to get my first treatment thursday *sigh* i hate sarcoma lol

[Olga]

Well, I guess that by now people here have already figured out that the news from Ivan's abdominal MRI is not good. A recurrence next to the previously ablated adrenal mets is found and it is abutting the inferior vena cava, they suspect involvement, we hope it is just pressing but not growing in.
Right adrenal gland is located on a top of the right kidney and very close to inferior vena cava - the major blood vessel returning blood from the lower extremities to the heart. Two metastases located within the right adrenal gland were cryoablated by Dr.Littrup a year ago. There is a problem with this location in the proximity to the vena cava as it creates the heat/cold sink effect - the freezing tumor is being heated on a periphery by the fast moving blood in the vena cava and some cells survive. Therefore the recurrence is located adjacent to vena cava.
Opinions:
We requested 3 ablation opinions (Dr.Littrup, Dr.Liu and Dr.Dupuy) and 3 surgical (Dr. Brennan (MSK), Dr. Fritz Eilber (UCLA) and local Dr.Dr. Scudamore (VGH)).
Surgical: Did not get anything from MSK only a form that you fill to get their second opinion after you pay $2000 - do not have time for this. Drs Eilber and Scudamore are all for the surgery to maximize the chance to get it out clean.
Ablation: Drs Littrup and Dupuy are all for ablation, Dr.Liu against, feels that surgery is the better chance. Dr. Littrup feels optimistic about it, says that even if it recurs, can be redone few times.

I read extensively on the subject and it looks like probably the cryo - the easy way out - is not the optimal way in this case. If we ablated this spot and it recurred later (the probability of it is very high like 50% as he can not freeze the vena cava to its full necrosis risking its rupture) - the ablation might not be possible if it recurs inside of the vena cava, and the salvage surgery would be difficult depends on the size/location of the recurrence might require the vena cava craft - full or partial replacement - a very risky surgery as not all crafts survive. Right now the abdominal local surgeon (who tried very hard to stop Ivan from going for the cryo) feels that the surgery will require extensive damage of vena cava and it has to be given a preferential right of the way to take an advantage of working with non-damaged field.

In general it is a hard choice between the current quality of life and the long term outlook.
We realize that Ivan is a metastatic sarcoma patient, he still have many tiny suspicious spots in his lungs - some of them are mets and some are scars from the surgeries, two of them are already identified as the very slow growing mets and are on the list to do for the cryo as they get close to 10 mm - the best size for the cryo, but otherwise he was just scanned recently and they did not find anything else on a brain, bone or abdominal scan. It is a choice between the "intention to treat" and the palliative procedure. Surgery is the only treatment in sarcoma that treats, as the margins are verifiable during the surgery - they send the slices to pathology during the surgery so verify that there is no tumor cells at the margins, and continue to get it all...
Our local team's position is very heartening this time - it looks like Ivan's an excellent healthy life style and a positive attitude earned him few points, or they just got used to us being a part of their life?
The cryo is scheduled for Wednesday in Detroit. If we go for it, we have to fly tomorrow (on Tuesday). So we have a night to think about the life.
If we stay and go for the abdominal surgery, it will be done on Sept.11 (they cut all corners to get this early time as they book for November now).

[D.ap]

Olga and Ivan and family ,

I was just checking in and saw your post. I just wanted you all to know our hearts go out to you all.
The desicion looks like a tough nut to crack however I know with the morning light , you will know what to do.

All our love and prayers
Debbie and family