Ivan rocking it since 2003

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

Post by Ivan »

All done, no issues at all. Home 5 hours after.

1 cm nodule size makes for some painless and almost asymptomatic ablations.
Bonni Hess
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Location: Sammamish, WA USA

Re: Ivan rocking it since 2003

Post by Bonni Hess »

WOW! That is amazing Ivan! I am so happy that the Cryo went so well and that you are doing so well post-ablation :-) Thank you for updating the Board so quickly. I Hope that you continue to do well and that you will have a very speedy recovery. Take care and have a good night's sleep.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Olga
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Location: Vancouver, Canada

Re: Ivan rocking it since 2003

Post by Olga »

I have to add that we were lucky again in a sense that the nodule was located in a location with the good accessibility for the cryo. And of course Dr.Liu rocks, my respect for him grows more and more.
Olga
Feng zhou
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Location: China

Re: Ivan rocking it since 2003

Post by Feng zhou »

Oh, it's great to hear that!Ivan, You are the hero of our ASPS community!
:D :D :lol: :lol:
mikko
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Re: Ivan rocking it since 2003

Post by mikko »

Congratulations from Finland!!!
cachabamba10
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Re: Ivan rocking it since 2003

Post by cachabamba10 »

Awesome Ivan, hope everything goes well post op,and take it easy for a little bit.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

Thanks to all, feeling great. Didn't cough up much blood after this time around. I think it was quite a bit more last time around, even though ablation size was the same.

Overall, I think that cryoablations are probably the most effective (and very comfortable for the patient) way of controlling specific troubling lung nodules in this slowly growing sarcoma. As long as they are growing slowly enough, and there is only a few of them that are getting to be a dangerous size.

I can't re-iterate enough the importance of doing them as early as possible at 1 cm vs 2 or 3 cm. The 2 cm nodule I had ablated 04-2011 is still there and doesn't seem to have dissipated much. It's wasting valuable space in my lungs! The 1 cm nodule I had ablated 12-2011 just six months ago is GONE without a trace. I hope this is what happens with the current nodule also. I enjoy all the lung volume I can get :D
MarietjievdMerwe
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Re: Ivan rocking it since 2003

Post by MarietjievdMerwe »

Way to go, Ivan! Unfortunately we were out of the country for a week and just saw your good news. :)
I am thrilled to bits for you and so thankful that everything went well.
Keep well and keep fit!
Marietjie.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

At this point, I feel 99% asymptomatic. If I take a deep breath and carefully feel, I can kinda detect a bit of soreness. Kind of like a minor bruise, nothing more.

1 week after a 1 cm ablation is like it never even happened.
Ivan
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Re: Ivan rocking it since 2003

Post by Ivan »

I'm getting ready to sleep, so I'll just copy/paste the email I wrote to the doctors below as it contains all the necessary information.

------------------------------------------------------------------------------------------------------------------------------------

I had my latest CT scan last week and just had a chance to go over it in excruciating detail. Terrible news. The previously ablated (04-2011) met in the left lung near the heart has resumed growth rapidly! The size progression in mm is as follows -

04-2010 - 11.5
03-2011 - 16.5 - right before the ablation
09-2011 - 19.7 - first scan post-procedure, a slight increase in size is, perhaps, expected
04-2012 - 21.3 - not clear if anything is going on yet
10-2012 - 27.2 - disaster, it's alive and it's the biggest met I've ever had over the decade that I've had ASPS!

This is based on the latest scan, performed on Oct 3 at BCCA. I've attached two images from the two most recent scans respectively. A 27% increase in size in just 6 months!

Is a repeat procedure possible? If it's possible, it would need to be done extremely quickly, since the lesion is already of a very large size and growing very quickly. If it's not possible, it would probably have to be treated in some much more invasive way. I am prepared to do whatever it takes. Everything else in my lungs is completely stable down to a fraction of a millimeter and below 1 cm in size, so for the foreseeable future, this is the dangerous one.

I consider this as close to an emergency as you can get with a slow growing sarcoma.

------------------------------------------------------------------------------------------------------------------------------------

I think that we are looking at a thoracotomy again, and it's a damn shame.
Bonni Hess
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Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Ivan,
I am so shocked and very sorry to hear this concerning news! If I recall, this is the met that was causing you so much concern that was successfully ablated by Dr. Liu in Vancouver. Have you been in consultation with him yet regarding his recommendation for treatment for it? Has he ever had any experience with a successfully ablated met that eventually began to grow again?
I am very grateful that the remaining lung mets are stable, and am very Hopeful that this met can be ablated again without the need for a more invasive surgery, but I know that you will need to move forward as soon as possible with whichever procedure offers the best chance of success in permanently destroying the tumor. I know that this is a very busy and stressful time for you and your family, but please keep the Board updated as your time and the situation allow, and know that my very best wishes and most positive thoughts are with you,
With deepest caring, healing wishes, and continued Hope,
Bonni
wangcns
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Re: Ivan rocking it since 2003

Post by wangcns »

Aw man, Ivan, I'm so sorry to hear about this. This damn disease...

Well it sounds like you're right on top of it. Kevin and I are following your path with a great deal of interest...we're hoping we can get to the same level of disease stability as you and maintain a good quality of life. We're getting ready to go back to Germany for thoracotomy #2, so while I could never claim to know what you're going through, I hope you know how much Kevin and I care, even though we haven't met. You and Olga's comments on our blog and here on these forums helped us get through the first surgery, you have no idea.

Keep us posted, I will be thinking about you, sending good wishes. Maybe we will cross paths in Germany *wry smile*
Olga
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Re: Ivan rocking it since 2003

Post by Olga »

Today we requested the opinions on how to deal with this met from Dr.Rolle, Dr.Littrup (Barb said he is out of the office today), Dr.Liu (who might be in California?) and from our oncologist Dr.Meg Knowling (she is great, got back to us right away saying that we need to consult our local ablation doc+local thoracic surgeon - meaning she herself has nothing to offer - and that one we know already, I really like that she does not offer anything when there is nothing to offer, no illusions and time lost, we meet her on Monday to get the official scan readings). We might need more scanning done - lateral made from the side. Surgery would have been very bloody due to lots of scar tissue from 2 previous ops and 1 ablation in that area. We would try to avoid it but not at the cost of the leaving the viable tumor behind.
Now to share some of my thoughts to discuss the ablation problems here.
It looks like Dr.Liu might have missed the target as the side of the mets is attached to a scar from that ablation so may be the ablation needle was placed not close to a center but closer to its side. Or may be the location close to heart limited his ability to form the bigger ice ball to ablate it reliably. It probably has no practical meaning now, but would influence my (and hopefully Ivan's) decision whether to fly to Detroit if Dr.Littrup says he can do it (which we hope) or to go with Dr.Liu again if he says he can redo it (which we get to know hopefully soon). At the moment of that 2011 ablation in Vancouver there was a technical problem here with Detroit having an advanced scanner that could be used during the procedure to see the needle placement - and in Vancouver they only had the scanner that they used step by stem - scan, place the needle, ablate, rescan to see how it went. It may have contributed to the ablation failure. I do not know if they have received the continuous use scanner yet, it will influence our decision as well as the location is very challenging and since the doc is trying to avoid inflicting any iatrogenic damages, it may contribute to an incomplete ablation as well. I hope that not all the tumor that we see is the viable tumor tissue, some of it may still be a scar from the incomplete ablation but it looks smooth and oval and grows even in all directions so really no much hope for that.
All other mets ablated by Dr.Liu (centrally located 2) and by Dr.Littrup - challenging one - are doing just fine, reducing to the scars by now. I could not stress enough the advantage for the mets to be ablated on a smaller size.
Olga
Bonni Hess
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Re: Ivan rocking it since 2003

Post by Bonni Hess »

Dear Olga,
It sounds like you are doing everything possible to move forward very rapidly and pro-actively with finding the best treatment for this concerning met. I Hope that you will very soon have responses and input from all of the doctors so that you can make the best decision possible to ensure a timely and successful outcome to permanently destroying/removing the tumor. Thank you for keeping the Board updated, and for sharing your highly respected and very knowledgeable thoughts and theories regarding the reason that the Cryo failed and the ablated met has continued to grow. Jim and I both agree with your theories and think that perhaps good margins were not obtained because of the close proximity of the tumor to Ivan's heart. The apparent failure of the ablation and the implications that a met can continue to grow following an ablation are of course of special concern to us since, as you know, Brittany has had several lung met ablations both Cryo and RFA.
Our special thoughts and very best wishes are with Ivan and your family for a very speedy and good resolution to treating and destroying/removing the tumor, and we will be anxiously awaiting your next update.
With deepest caring, healing wishes for Ivan, and continued Hope,
Bonni
Feng zhou
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Location: China

Re: Ivan rocking it since 2003

Post by Feng zhou »

Dear Olga,
I'm so very sorry to hear about this.
yes,as you have guessed, I think that the met was not completely inactivated cryoablation in April last year,it should be because met near the heart, fast flowing blood make frozen region warms up quickly, resulting in the so-called " heat effect ". make cells can not completely be frozen at low temperature.
Maybe Dr.Rolle's laser ablation the met by thoracoscopic is a good option?

Please take care!
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