Ivan rocking it since 2003

[Jorge]

Hi Olga,

I'm very sorry to hear about the reoccurence.
I'm going to off work very soon. But I'm against cyoablation.
Thanks for the info provided by you and Debbie regarding cryoablation on renal mets, I read and thought about it. I think a percutaneous cyoablation is not an option for renal mets, at least. The reason is the mets can't be seen clearly on CT without contrast as I stated in my post earlier. I don't know how the adrenal gland met looks in a CT without contrast. If it can't be seen clearly, you shouldn't consider a percutaneous cyoablation.
Laparoscope is not a big surgery. In our experience, the recovery is sooner than the laser surgery.

Think about it.

Good luck to Ivan and your family,
Lynette

[Jorge]

Olga,

I want to add some other points here:

In George's, ASPS mets usually don't grow in where they are close to. He had lung mets next to the chest wall, ribs and heart. We were told before surgery that there could be chance to operate on the adjacent organt if they are involved by ASPS. Finally it turt out none of these organs were involved. The ASPS mets are usually growing independtly, like George's brain mets.

We were also recommended with cryoablation on the renal mets at the beginning. But the met was next to the renal hilus that the mets can't be frozed completely--which means there is much higher chance of reoccurence. Now Ivan's condition is similar. If part of the met which is clsoe to the major blood vessel can't be frozed completely, it will continue to grow and then grow into the vessel lately. It's like a time bomb in the body.

They article Debbie find for me is an renal croabltion done in laparoscope--I personally think this method is much better. But if a laparoscope is needed, why not resect the met directly?

Hope this can help you to decide.

Lynette

[D.ap]

Hello Olga and Ivan and family-
Sure thinking of you all today with positive thoughts.

I am hoping after a night of thinking your options over that you've come to a family descion and are finally able to begin to rest.


Write when you can.

All our Love,

Debbie

[Kathy]

Hello Olga and Ivan,
Tom and I send our love. Please post when you can. We update when you can!
Kathy

[D.ap]

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).

Wanted to remind everyone of where Olga and family maybe at this moment
Love
Debbie

[Bonni Hess]

Dearest Olga,
I was SO MUCH Hoping that no news was good news but as you insightfully thought, I and most likely the other Board members had suspected and surmised that the results of Ivan's abdominal MRI were probably not good having not had an update from you or him. I am deeply sorry for the ablated adrenal gland tumor recurrence and the difficult treatment decisions that you and Ivan are now facing, but I am grateful that there are some viable treatment options available and that you have been able to obtain advice from several different highly qualified and experienced doctors. I am grateful too for your extensive ASPS knowledge and very pro-active approach which is so critically important in fighting this insidious disease. Since you have not posted today, I suspect that you and Ivan may be in Detroit with Ivan undergoing or already having undergone the Cryoablation with Dr. Littrup. Whatever the situation and wherever you are, please know that my most caring thoughts and very best wishes are with dear Ivan and you, and that I am holding you both very close in my heart and will be anxiously awaiting your next update which will Hopefully bring good news of a successful outcome to this latest challenge in Ivan's long, very courageous, and determined ASPS battle.
Heart to heart with shared concern, deepest caring, positive thoughts, healing wishes for Ivan, much love, and continued Hope,
Bonni

[Olga]

Hy everyone
Ivan had an ablation by Dr Littrup yesterday, dr is very happy with how it went and is hoping for the complete ablation. He used more needles than usual and said that the visualization was perfect with the lethal temperatures achieved well into the vena cava wall. Ivan had somewhat rough recovery from the anaestesia due to some overdose that was created intentionally as dr Littrup needed him to be very quiet inserting the needles close to vena cava, so after Ivan waken up there was a lot of vomiting and nausea but after some rehydration it was finally ok and they let us go to the room past 9 pm.
It was a hard decision to make this time, a gamble in some way due to insufficient information re. Outcomes with the ablation versus resection in this area. The cases like this are rare, the surgeries show good results if the resection is done in block with the vena cava piece and wide area resected, most recurrences are satellite. The cryoablation in the area also show good results with most recurrences being satellite ones not local. What does it mean:
The local recurrence is the one that arises from the scar from the previous surgery or ablation and means incomplete ablation or the surgery not R0. The satellite one arises in the vicinity and means that there were a micro metastasis at the time of the resection or ablation that later grew, or that there was a local dissemination during the resection or ablation. The In block resection removes any micromets that could be there so this is why it's results are better but we were not ready for the real in block resection, it is really has to be anything in 20 mm around incl. parts of organs. Our surgeons plan was to have a local resection with a thin slice of vena cava removed but it would not offer any protection from the satellite recurrence. It would however offer us a protection from the local recurrence but Dr.Littrup assured us that vena cava is very resilient and can be frozen as needed to achieve the local recurrence protection as well - having frozen margins more than the surgery would make. Surgery would provide a feed back though - they send the slice to pathology fast during the surgery to find out if they came to the clean area and if they needed to take more, but it also means more damage to vena cava and if they want to go deep - the graft replacement. This type of surgery Ivan can still have later if needed if there is a local recurrence. More scarring and damages with the surgery. Only really big surgery provides consistently clean outcome. With Dr.Littrup pretty confident that he can achieve the same local result we decided to go with him. Ivan decided that, not me. Now we are reasonable optimistic as Dr.Littrup said that the ablation went better than expected with the text book appearance of the ablated zone. It was done under the continuous CT guidance.
Lynette - re.kidney cryo - the results of cryoablation are consistently good in this location with the local recurrence rates the same as surgery with lots of stats avail. High end equipment and skills are the key here as with all the interventional procedures - they only get good after they done 300-500 of them. Laparoscopic resection was not possible for the tumor abutting the vena cava as they need a good visualization to work with it, so it would have been a full size abdominal surgery.
By now Ivan had about 10 mets ablated by dr.littrup - lungs and adrenal. He never had any of theses recurred locally even bigger ones close to heart with the heat sink effect in that area as well. This adrenal recurrence was clearly satellite with no connection to the previously ablated mets, would be the same if they were resected not in block.
Now we will be waiting for the MRI done in couple of months to see the result.
Our local team is probably upset that we did not take their advice.
We are flying back on Saturday.

[D.ap]

Ivan and Olga
Good job. The descion was an excellent one in my opinion with all that you have shared with us.
Will write more later. Wanted to tell you good job and so glad Ivan is doing well, other than his sick to stomach/ anesthesia
thing.

Love
Debbie

[D.ap]

To all concerned

The following was taken from the above quote that Olga had given after Ivan's Cryo procedure:

It was a hard decision to make this time, a gamble in some way due to insufficient information re. Outcomes with the ablation versus resection in this area. The cases like this are rare, the surgeries show good results if the resection is done in block with the vena cava piece and wide area resected, most recurrences are satellite. The cryoablation in the area also show good results with most recurrences being satellite ones not local. What does it mean:
The local recurrence is the one that arises from the scar from the previous surgery or ablation and means incomplete ablation or the surgery not R0. The satellite one arises in the vicinity and means that there were a micro metastasis at the time of the resection or ablation that later grew, or that there was a local dissemination during the resection or ablation. The In block resection removes any micromets that could be there so this is why it's results are better but we were not ready for the real in block resection, it is really has to be anything in 20 mm around incl. parts of organs.

Olga

This satellite effect could also be true in the lung, correct? However to sacrifice a large part of the lung , by sectioning , would problably not be adviced, huh..
Also, the tumor(s) were that close to the aorta?
I can understand wanting to wait for a planned time to perform the possible major surgery.
Were the doctors going to use a femoral artery?

Wow..
My husband had a mitral valve repaired, not replaced, because of having had rheumatic fever when he was a kid. It damaged his valve causing regurgitation.
There is a heart hospital called St. Lukes here in the Kansas City area that is a very experienced in heart and kidney transplant .It sounds as though you have a good team to work with.

Take care,
Much love
Debbie

[Olga]

The tumor was very close to Vena cava not aorta, the venous repairs and replacements are easier somewhat. There are 3 types of surgeries that could be done with vena cava: a repair (it is getting stitched), a patch replacement(done with diff types of patches artificial or natural but In Ivans case the doc said he would use small piece of somebody else vein if you get it or may be I did not get it - we did not go there deeper) and a circumferential replacement (also done with the artificial or natural graft, this one is hard and has very high complication rate). A patch resection is done only 1-2 mm deep and does not cut all the way inside of the vein but only shaves the outside layer, less complications but still a big damage to the vessel.
In the lungs sometimes there are the situation where most if not all mets are located in one of the lower lobes and if you remove that - lobectomy - it may be statistically right decision (if 99 percents of the mets are there, it is very probable that all the recurrences are going to be there as well, and people only need 1/6 of the lung volume to breath well). We have patients who had their lobe with multiple and only few mets in the other places to deal with and live well long after. But most cases ASPS have small lung mets in all lobes.

[Jorge]

Thank you for updating the good news! We're so glad to hear about the success of the cryoablation!

Thanks for the detailed explaination of the situation and thoughts. With such experience and confidence of Dr. Litterup in cryoablation, and attach more importance to it, I believe and truely hope the cryablation must be a success that the adrenal gland mets are destroyed completely and shrinkaged and disappeared later.

By the way, what do you mean by satellite recurrence? And how big are the 2 mets and how many needles are used for each?

I wish Ivan a very quick recovery from the intense cryoablation and a safe travel to all of you.

Loves,
Lynette

[Olga]

Lynette,
The two adrenal mets that were ablated a year ago - in Aug 2013 - were about 10 mm in size each and I do not remember how many needles were used then but they are slowly decreasing in size since then and look dead up on a MRI scan with the contrast.
The recurrence was not in them but in the vicinity. When the recurrence is adjacent to a previously ablated nodule or arises from the scar from the previously ablated or resected nodule, it is considered a local recurrence but when it is located in the same area close like 5-10 mm but clearly has no connection with the previously ablated or resected nodule it is now called a satellite recurrence, they introduced this terminology to be more exact in the reporting criteria just recently. So Ivan had a satellite recurrence this time. He also had a local recurrence about 1.5 years ago in the lung met treated by the local ablation doctor and it had to be retreated by dr.Littrup due to a challenging location. That local doc very successfully cryo ablated 2 other lung mets that were in an easier location but some cases are really hart to treat right so you need an expert.
This time Dr.Littrup used 5 needles and spaced them closer than usual to create a very even distributed temperature freeze on a complex shape - the tumor was in a bent dumbbell shape.

[mikko]

So glad to hear this!! Send our regards to Dr. Littrup too.

[Bonni Hess]

Dear Olga,
I am SO deeply grateful for this very good news and for the encouraging and seemingly successful outcome of the procedure. I am very grateful too for your very thoughtful and informative update with the extensive detailed shared information which is invaluable for all of us in the ASPS Community who may someday face a similar ASPS challenge and difficult treatment decision. I Hope that today finds dear Ivan recovering well with no post-op pain or discomfort, and both of you able to just relax and enjoy your day in Detroit before flying Homeward bound tomorrow. I applaud your well informed and thought out decision to proceed with the less invasive and less traumatic Cryoablation rather than resection, despite the advice of some of the doctors. I, like you and Ivan, truly value and trust Dr. Littrup's experience and recommendations and I find confidence in his expertise. Please tell Dr. Littrup and Barb "HELLO " from us Hesses if you see them before leaving tomorrow. Take care, travel safe, and know how much I share your great happiness and relief that the procedure went so well and that it is now over.
Reaching out across the miles to embrace you with special hugs, healing thoughts and wishes for Ivan, much love, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Olga and Ivan,

We were away for a few days and only now caught up on the news.

So very sorry about all the negatives but VERY relieved that everything went well under the circumstances and that Ivan made a bumpy, but overall well recovery.

You will be in my thoughts and prayers.

Marietjie.