Ivan rocking it since 2003

[Olga]

I have to correct the timing info in Ivan's CT scans - his CT scans are done about every 5 months now, not 6, he had them every 3, later 4 month but it actually created some technological problems with the detection of the progression as some consecutive ones where considered stable when in fact they were very slow growing, so we moved it at a little longer periods between the scans. This longer periods between the scans can only be used if there is no growth or a very slow growth in the mets, otherwise stay at the 3 month schedule in order not to miss the sudden growth in some of the mets that needs to be addressed locally ASAP - some local treatment options are time limited and when the mets is getting bigger they can be lost - if it gets to close to the vein, aorta etc.
He also had a bone scan this time, we have no results yet. He gets a brain MRI about once a year, we are fortunate to have an oncologist that understand that brain CT is not good enough to detect very small ASPS brain mets.

[Olga]

Just to reinforce the message here and summarize the case:

We had Ivan's oncologist today to discuss the results of the full body CT scan with the contrast and the bone scan, both done in the middle of September, 2010, and everything is stable.

It is now almost 7 years since he was Dx.with the primary ASPS in Nov.2003 (right arm, 18mm) and with the multiple lung mets in the beginning of 2004. He has not had any systemic treatment at all. His treatments for the lung mets were 4 lung surgeries starting in Feb.2005 by Dr.Rolle (laser assisted pulmonary metastasectmies) and 1 cryoablation by Dr.Littrup in May 2010, all these procedures were done at the relatively small tumors sizes, he only had one met close to 20 mm at some point and the other one was 18 mm, the rest were under the 10 mm, mostly in 2-4 mm range.

The result of the CT and the bone scans is all stable, which means that whatever they see there did not change since the last scan - no growth in the existing ones and no new ones (and by Ivan's reading the objects did not change since the 15 month ago scan done after the last lung surgery except the one lung met that has grown since then and was cryoablated by Dr.Littrup). There are different objects on the lungs CT scan - some of them are obvious scars, lung surgeries do damage the lungs a lot, some of them are round shaped nodules. We do not know if these are viable tumor metastases or the round shaped scars left after Dr.Rolle's type of surgery. The only way to find it out is to watch, then if they grow we know they are mets, if they don't - we hope they are scars but keep watching.
He is at about 5 month lungs CT scan interval, with the brain MRI done once a year bundled with one of the chest CT scans in the winter (it is very important to have one and it will be done next time he gets scanned). He does not get the bone scan on the regular basis but we asked to have it this time as the last one was done 7 years ago when Dx.

[Bonni Hess]

Dear Olga and Ivan,
CONGRATULATIONS!! on this VERY good news and wonderful scan report! All of us Hesses are SO very happy for you and truly share the great joy, relief, and Hope that we know these very encouraging results have brought. Enjoy celebrating and have a beautiful fall weekend.
With happy hugs, much shared joy, special caring thoughts, and continued Hope,
Bonni

[Amanda]

Hello Olga and Ivan
YAY!!! I am so glad to hear this news! It gives me hope seeing this happening with you Ivan
Keep rocking..

[Ivan]

I wanted to post a very important update. I'm afraid it's ... awesome, and you will feel jealous



Gallery of the above: http://img192.imageshack.us/gal.php?g=36088026.jpg

[cachabamba10]

Hey Ivan:

Ivan is this North Canada? The scenery is just quite amazing. I am glad that your scans show stability. Thumbs upppp.

Take care guy;

Mario E. Arevalo

[Amanda]

Hello and lol!
Pretty place where is it?
I am glad to see that you are not in lifes waiting room either..
How do i post pictures and i want to make an avitar and it wont let me ><

[Ivan]

It's Garibaldi Park here in BC. Just 2 hours from my house.

VO2 max is the maximum capacity of an individual's body to transport and use oxygen.

Over the last couple of months, I've been doing some training to increase it according to this program. Anyway, I have already surpassed my best time from before my cryo ablation. It corresponds to approximately 6% increase in VO2 max which was a result of the cryo ablation, and inability to train due to a bum knee.

In 12 more weeks I'll update where I am at with my training That will be 400 km of running as fast as I possibly can for the respective distances. Oh how I would love to run 10 km in 40 minutes like I used to before my first surgery. I think it's possible as long this crap gives me a full year's break

[Olga]

Ivan had his chest CTscan on Feb.18, 2011 (5 month interval) and a once a year brain MRI a week before. We've met with his oncologist Dr.Knowling today and the results as follow:

1. The brain looks clean, nothing found.

2. The chest CT generally looks stable except some slow growth in one nodule in the left lung. It is now 1.6 cm versus 1.2 it was in Sept. 2010 and 0.9 it was 2 years ago. We were not sure when it changed from 9 to 12 mm but now it is obvious that there is a growth when we compare the 2009 scan to 2011 so the change is from 9 to 16 mm.

It is located at the periphery of the left lung by the pericardium so I suspect that the RFA is not the best modality to use in that location if possible at all. We only have RFA done locally and it looks like we will probably have to go to Detroit again to see Dr.Littrup. The previously cryo ablated last year met looks fine and is resolving. Our oncologist Dr.Knowling offered us some clinical trial but since Ivan only has a progression in one met and we can probably fix it with the low pain cryo treatment, we can wait for something better on the systemic treatment front.
We will have to pay our own money if we go to Detroit as they say it is not proven that ablation of the slow growing mets prolongs patient's lives so the insurance will not pay but it is OK, Dr.Littrup is very good in what he does and worth every penny, so if he takes Ivan for a treatment - we go, he is off for a week long vacation and will review the scan after he is back - I am sending the scan on a CD for his evaluation after corresponding with his assistant Barbara earlier today.

In general Ivan feels very good - he runs, plays all his sports and lives pretty much the normal live.

[Ivan]

So today I had my latest scan results. Everything is good except one nodule in the left lung, which has grown as follows -

Code: Select all

June 2009 - 0.8 cm
Sep 2010 - 1.2 cm
Feb 2011 - 1.6 cm

The problem is it appeared in place (or right next to) a scar from a previous surgery, so the scar almost completely obstructed its initial growth and hampered even earlier detection. Now it's obvious, but having looked back I should have been able to tell from the previous scan. I did mark it as suspicious - one of only two such nodules. The other one I thought was suspicious remains 0.9 cm since June 2009, and is hopefully a scar.

Trying to get this one ablated as soon as possible. Below is the change from what appeared like a scar in June 2009 to today -

[Bonni Hess]

Dear Ivan and Olga,
With the exception of the slow growth of one lung met, this is wonderful news regarding the fact that there are no other remaining lung mets, there are no new tumors, and the brain is clear without having had any type of systemic treatment! I know that there is a concern about the growth of the lung met which you will be pursuing treatment for, but I Hope that you are celebrating the good news of no new tumors during the past five months which is truly a victory in itself. Was only a chest CT done rather than a chest/abdominal/pelvic CT, and if so, are the abdominal and pelvic scans scheduled at longer intervals to reduce radiation exposure?
I agree with your decision to pursue Cryoablation rather than RFA based on our experiences with Brittany's lung RFA and lung Cryo procedures because we suspect that Brittany's lung RFA in Pittsburgh may have seeded her tumors and caused rapid and widely disseminated disease whereas she never experienced this following her two Cryo procedures with Dr. Littrup in Detroit.
You are to be commended and admired for your aggressive reduction of tumor load with laser surgery and vigilant treatment with ablation for any new growth whenever it is detected. Unfortunately with Brittany's situation, even though we followed a similar approach of aggressively addressing and reducing tumor load as much as possible through resection, radiosurgery, and ablation, she heartbreakingly experienced widely disseminated disease progression with unresectable and unablatable tumors which necessitated a systemic treatment.
I have addressed this theory before, but I continue to think that there may be two different types of ASPS. It seems that there is one type which only metastasizes to the lungs as it has with Ivan and several other ASPS patients who I have closely followed, and the other type which metastasizes throughout the body as it has with Brittany and others. I base this theory about the possibility of two different types of ASPS on patient inclusion criteria for the now inexplicably abandoned MSK Immunotherapy Peptide Vaccine which was to be put into Clinical Trial in 2005, as well as on my personal experience and observations of ASPS patients during the past nine and a half years of Brittany's ASPS battle. Also, it seems that the younger the patient is at the time of diagnosis, the slower and less aggressive the disease progression is. I would be very interested in knowing if any research has been done regarding either one of these theories.
I will be anxiously awaiting your next update regarding scheduling of the Cryo procedure with Dr. Littrup. In the meantime, please take care dear Ivan and Olga, enjoy the rest of the weekend, and know how very happy I am for the mostly good news from the most recent scans.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Ivan]

I have addressed this theory before, but I continue to think that there may be two different types of ASPS. It seems that there is one type which only metastasizes to the lungs as it has with Ivan and several other ASPS patients who I have closely followed, and the other type which metastasizes throughout the body as it has with Brittany and others. I base this theory about the possibility of two different types of ASPS on patient inclusion criteria for the now inexplicably abandoned MSK Immunotherapy Peptide Vaccine which was to be put into Clinical Trial in 2005, as well as on my personal experience and observations of ASPS patients during the past nine and a half years of Brittany's ASPS battle. Also, it seems that the younger the patient is at the time of diagnosis, the slower and less aggressive the disease progression is. I would be very interested in knowing if any research has been done regarding either one of these theories.
I will be anxiously awaiting your next update regarding scheduling of the Cryo procedure with Dr. Littrup. In the meantime, please take care dear Ivan and Olga, enjoy the rest of the weekend, and know how very happy I am for the mostly good news from the most recent scans.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

Our oncologist also seems to think the same regarding two subtypes of ASPS. Hopefully a clinical study at some point will clear things up regarding that.

[Amanda]

Hello Ivan,
My nose is better an ty again for the post in FB

I am sorry that a met is growing but i know you will get it removed and move on as allways...

I just wanted to say you are STILL ROCKING IT

[Olga]

Thanks to everyone for the good wishes. Dr.Littrup is on the week long vacation and we will have to wait this week for him to see the scan and to say if he can do it (fingers crossed).

[Olga]

Hello everyone, I can finally update the board re. Ivan's single growing lung met situation/treatment.
As you already know, we found on the last scan that he had a progression in one lung met and that there is a problem with its location. It was located on an outer part of the lung very close to the heart - almost between the lung and the heart, right under the surface of the lung/pleura. Ivan already had 2 surgeries on that left lung and there are lots of adhesion and scarring between the lung and the pleura. The surgery was not an option as it does not make a sense to open the lung for one met as it would have been very traumatic surgery as all the adhesion would need to be cut with all the associated bleeding. And you can not ablate anything that close to the heart as with the ablation the covering field has to be bigger then the target by about at least 10 mm and that would damage the heart.
We had very extensive consultations with the leading ablation docs (interventional radiologists): Dr.Littrup from Detroit, Dr.Vogl from Germany. They both were willing to try but were not sure that the attempt would be a success. Dr.Littrup was offering to try a cryo again (we had it done by him last year in the other lung) and Dr.Vogl was offering to have a chemo-embolisation in attempt to shrink it first and some kind of thermal ablation second (LITT or microwave were 2 options of the new types of the advanced ablation techniques he uses at his Frankfurt University Med. Center). After extensive consultation we were close to going to Detroit again as the cryo seems to be better in the location that close to the heart. But then an unexpected happened - we found out that we now have a new doc in Vancouver that worked at the UCLA before with Dr.Suh and now relocated to Vancouver and keeps working part time there and part time here, with the good amount of the experience in a whole range of the interventional radiology procedures - incl. cryo. He has about 7 years of the overall on hands experience (not including the fellowship) and even teaches at the upgrade courses in this field. And we can have it done at home without flying to the other countries, that was something new to us:(
I have to say that I was really apprehensive as I know for sure that every time we make a decision with this damn ASPS we have to go for the best and to act fast, it is the only chance to stay a step ahead of it. The care we received last year in Detroit was so good that staying home really felt like compromising on the quality. On the other hand we needed to find out if we can find a doc that we can rely on at home as it is obvious there might be different reasons that at some point we might need it here. So we went for the local guy, the name is Dr.David Liu.
It was hard to schedule everything fast here with him working in 2 or 3 geographically remote places at once and attending the same conf. as Dr.Littrup in Chicago last week, with the referrals being lost and the oncologist left for 2 weeks vacation. We pushed hard, drove everyone crazy and managed to schedule it for today, April 14. The cryo unit broke on Tuesday. They received the new one on Wednesday and our procedure went ahead! We met the doc before of the procedure, interrogated him in a worst possible manner as we can do and after hearing from him again all the problems with the location and what can go wrong I was so freaked out and felt that it was really the stupid decision to go for it here as we need the best and most experienced doc to be able to carry it trough. But Dr.Liu was able to do it. He injected the air into the area between the lung and the pleura so push the lung away from the heart and then he inserted the cryo probe into the lung and when it froze on he moved it away from the heart and finished the thaw/freezing cycles he needed to ablate it. No complications happened (no bleeding, collapsed lung, torn adhesion, punctured heart - ...). It was done under the general anaestesia this time.
Ivan was walking, talking, eating and smiling in a few hours it was done so the heart is definitely works fine, they keep him in the hospital overnight tonight, for the observation.
I am really happy with this new doc for now and that we could have it done at home and that he does all other types of the ablations/embolisations. It is sure more important to see if the ablation was complete, but for now I am satisfied enough that nothing went wrong during the ablation. for now the ablated area is going to look bigger then before and only after 6 month the previous abated by Dr.Littrup met started to dissolve, it is almost gone now and we hope to see this result for the second one, but it is comforting to know that in case of the incomplete ablation the procedure can be repeated.