Cure Alveolar Soft Part Sarcoma International (iCureASPS)

After Ivan's consecutive scan has shown one met growing, our local RFA doctor turned us down, we do not really know the reason - either they do not think that there is a point to ablate some of the mets if they are multiple or (more possible) that the met is located close to aorta and they are afraid to cause the bleeding - they did not give us a reason yet as it was communicated to me on an informal level by the doctor so we can move on in the search of the treatment. I came to the location reason by myself as Dr.Rolle has reviewed Ivan's scan and confirmed that the progression is in this one met only, agreed that the ablation would be the best choice to proceed and mentioned that cryo may have some advantage in this location. Luckily for us we already sent the scan to Dr.Littrup to review and they acted very fast this time - reviewed the scan and his nurse called to say that they accept Ivan for the cryo and are proposing to ablate one more met in this lung (I guess during the same session as it was done for Brittany once as I remember). We are not taking any chances with this met as although it is not big now, since it is close to aorta it is better to be ablated earlier then later when it might get closer to aorta.
We are moving fast with the ablation and it is already tentatively scheduled for this Wednesday (we have to fly on Tue May.25) and the nurse told Ivan to book the return flight in a week. It is a long weekend in Canada and banks are closed on Monday which makes it difficult to arrange the payment as I do not have an invoice yet - hope to get it on Monday, we are paying ourselves and I do not anticipate to be able to get anything from the insurance as we have to back up the claim by high level of evidence articles on two subjects: - we need to prove that ablation of a single progressing (but completely asymptomatic) met increases survival overall in sarcomas; - that cryo ablation has an advantage comp. to RFA being useful in the case when location rules out using RFA (it is easier since I found a good article on that subject) and to turn this paper work around we need a few weeks I guess and they do not accept the claim if it is done with no preapproval - so I guess we just go and get it done and pay and later claim as a tax deductible.

Dear Olga,
I am sorry that Ivan is not able to have his concerning lung met treated locally by the Vancouver RFA specialist and that you will be incurring so much personal expense to have it treated in Detroit, but I am very grateful that Dr. Littrup is able and willing to do the Cryo procedure and to schedule it so quickly. I think that you know that we feel that Brittany's 2004 and 2009 lung Cryo procedures with Dr. Littrup in Detroit were more successful than her 2008 lung RFA with Dr. Luketich in Pittsburgh, even though both procedures seemed to have thankfully killed the treated tumors, but Brittany experienced two pneumothorax with the lung RFA and we have always suspected that the RFA may have caused her tumors to spread because following her RFA she developed widely disseminated disease. However, the dissemination of her disease also coincided with the diagnosis of her large spinal tumor which was previously inexcusably missed by the radiologist and the oncologist in her two prior CT scans, and unbeknownst to us was actually present at the time of her lung RFA, and may itself have been responsible for sending other tumors throughout her body. At any rate, despite the great expense and out of country travel involoved, I think that the decision to Cryo Ivan's lung met rather than to RFA it is a good one, and I will be holding very tight to Hope that he tolerates the procedure well and has a very successful outcome to the Cryo treatment. If you are still trying to find a place to stay, I would highly recommend the Woodbridge Star which is a very well run and relatively reasonably priced bed and breakfast with large comfortable rooms in a historical Victorian mansion and daily gourmet breakfasts prepared and elegantly served by the very congenial innkeeper Allen. I would be glad to provide you with more information about it if you are interested. Please know that my very best wishes and most caring thoughts will be traveling with Ivan and you tomorrow, and that I will be anxiously awaiting your next update. Take care, travel safe, and please tell Dr. Littrup and Barbara 'HELLO " from the Hesses.
With hugs, special caring thoughts, and continued Hope,
Bonni

I don't know, Bonnie, how does it look I tolerated the procedure to you?

WOW! You look great Ivan and I love the smile! Thank you for sharing. Obviously you tolerated the procedure very well . Hopefully it was very successful in destroying your two mets, and you will have a very smooth and quick recovery. The surroundings look very familiar, although we never had sunshine and tank top weather when we were there since Brittany's first Cryo in 2004 was done in November, and her second two procedures in 2009 were done in late February and early March, both very cold and snowy times of year in Detroit Take care of yourself and take it easy while you are recovering because whether you feel it or not, your body has been through a serious procedure with a probe inserted into your lung. Please tell your wonderful mom "HELLO", give yourself a gentle hug and her a big one from me, and know how very happy I am that you are doing so well post-op. If you get bored and are looking for things to do in Detroit ( which there unfortunately really aren't very many ) during your recovery there, there is a beautiful and very interesting historic park on the other side of the river which you and your mom would probably enjoy visiting.
Crossing the miles from the cold and rainy Pacific Northwest ( aren't you glad that you aren't here?!?) with healing wishes for a speedy recovery, special caring thoughts, and continued Hope,
Bonni

You look great! Rock on, Ivan!

Bonnie, actually I did only one of the mets - the one that was growing and located on the edge of the lung.

I looked at the scans 18 months back, and the other 8 mm object did not change in size in that time period. To me, that means that it could be a scar from the laser resection. Furthermore, it's not located in such an awkward spot as the one which was destroyed yesterday. That was on the very edge of the lung, close to the diaphragm, vena cava, and the connective tissues in the area. Chances are, this second one could be done back home with RFA if that need comes about.

Doing the second met would require a separate procedure (essentially doubling the monetary cost) and two separate probe holes, so there wasn't really an advantage other than saving a trip and recovery time in the future. I thought about it, and decided that I am not comfortable with causing any damage to the lung without being 100% sure that this is not remnant scar tissue.

I talked quite extensively with Dr. Littrup (who is very happy to discuss cryoablation) regarding the procedure, and especially the recovery period. To me, the primary question was when I could return to normal activity. Here is a summary of what he said about cryoablation which could be useful. Some of it is my interpretation, so take it with a grain of salt.

Recovery:
1) There are not many athletes / active people who undergo this procedure, so there isn't 100% certain info on how fast you can return to that type of activity. Dr. Littrup said he had two pro athlete patients, who were very eager to return to gradual training after only 1 week. They didn't have issues. He can't recommend that, but just mentioned it. What he said to be safe is:
2) Take it very easy for 48 hours. I.e. walk slowly and carefully, etc.
3) Take it easy for 1 week. Normal walking -> brisk walking towards the end of the period.
4) Take it slightly easy for 2 weeks. I am guessing that towards the end of this period you could start jogging as long as there is no pain.
5) After that start progressing to doing whatever you want slowly.
6) The ablated met is a hard, self-contained area of necrosis. The concern for an airleak, bleeding, etc is caused primarily by the probes passing through the body. So, even though the dead met remains there for a long time (months to YEARS, depending on the person and location) it poses no risk of complications by being there.

Cryo vs RFA:
1) RFA causes more damage to surrounding tissues and causes more pain. Part of the reason why we were turned down for RFA locally.
2) Cryo allows to operate with smaller and cleaner margins, since it's possible to see the freezing sphere edge clearly. Because of my met's difficult location, this also played a role for RFA not being a viable option.
3) RFA is easier to master and use, hence it's more widespread. The machines are also cheaper. The procedure of burning is also quicker, so it causes less complications with inexperienced surgeons.
4) Dr. Littrup performed 600 cryoablations, 100 of them in the lung since the year 2000. You can bet that this is the largest number in North America. If you want cryo, you want to see an experienced surgeon.

Hi Ivan,
Thank you for the additional shared information about your procedure and the basis of your decision to just ablate the one met, as well as for so thoughtfully sharing the very valuable information which you received in your discussion about Cryo with Dr. Littrup. I Hope that you will heed his advice regarding resumption of activity level ,and just try to rest, relax, and enjoy your healing time in Detroit.
With healing wishes, special caring thoughts, and continued Hope,
Bonni

I am pretty happy about the time frame suggested by Dr. Littrup. I was expecting 1 month, so 2 weeks is just fine for me.

Took off the bandage yesterday (24 hours after the procedure). The scars look like oversized mosquito bites, if anything. No bleeding, not even scabbed blood.

It sounds like you are doing great Ivan! I hope that the weather is good and that you and your mom will be able to visit and enjoy walking around the riverfront park which should really be beautiful this time of year as opposed to the cold, snowy, frozen place that it was when we were there in February/March 2008 ( one of the large fountains was actually frozen in place and looked like Old Faithful geyser!) Take care and continue to have a good recovery.
With special caring thoughts and continued Hope,
Bonni

We'll probably walk to the riverfront tomorrow or the day after. Walked to the baseball / american football fields today, which is around half way on the edge of downtown.

It's very interesting to walk through these poor neighborhoods with abandoned houses, cars which should long be at the junkyard, dirty streets, broken down pavement, bums. Reminds me of Russia. Although there are less abandoned houses and bums anywhere I've been other than perhaps some obscure villages far from any major towns there.

There are also very many churches here. Perhaps 10-15 in the immediate walking distance. Some of them quite large and nice.

Well, what can I say. This procedure is amazingly easy on the body. In fact, before coming here, I was concerned that it was going to be more difficult simply because I thought of it too lightly. Nope. It is as good as they say I could best describe how I feel as having a "light cold". So obviously a bit less than normal, but considering what has been accomplished here - great.

The weather continues to amaze. I can walk for 2 hours without getting tired and haven't fealt a shortness of breat. The pain level is so low that I have not taken a single painkiller since the surgery. I would best describe it as 2-3/10 when taking a deep breath only.

Ivan, 'K' sort of asked me - were you awake through the entire procedure and if so did it make you nervous? She would like to be 'knocked out' during it, but I understand they sometimes prefer you to be awake. How long did the procedure take and what did you feel? How did they numb things up?

Thanks again, 'F'

'F' wrote:Ivan, 'K' sort of asked me - were you awake through the entire procedure and if so did it make you nervous? She would like to be 'knocked out' during it, but I understand they sometimes prefer you to be awake. How long did the procedure take and what did you feel? How did they numb things up?

Thanks again, 'F'

They said they don't put you out completely, but I went to sleep. Since it's a low pain, short procedure it's not necessary to have hardcore anesthesia. I believe they use local injections around the insertion site. Again, the holes are tiny and I don't think they would even leave a scar.

I didn't feel anything during the procedure itself. I was a bit suspicious when they mentioned possibly feeling something and not being completely out. However, that was not the case for me, and in the end I didn't feel nervous. There are no tubes involved. Tell her that if you've had a thoracotomy this thing is a joke of a procedure. Very easy!

There's a Ronald McDonald house around here - maybe you can get free accommodation?

This is great. She will like to hear this. Will definitely check into the 'Clown house' possibility. THANKS.

To be honest I would ablate the lung mets as soon as possible without waiting for them to grow. I am pissed already that the radiologist did not report the growth of this met from 2 mm to 7 mm in the previous scan. I looked at it myself and it's obvious that this particular met was not stable, while everything else apparently was. From now on I will be looking at my own scans. How difficult is it to do something that's your damn JOB? It's very easy comparing the scan to an older one if you have them side by side at the same time.

Volume ablated is proportional to the cube of the diameter, so for example a 2 cm tumor with 1 cm margins is (without the constants) 27 cm^3. A 3 cm tumor with the same margins is 4^3 = 64 cm^3, which is over twice as much. 4 cm would be 125 cm^3 or almost 5 times as much. So, unless there is a very good reason, I would do them small between 1 and 2 cm. 1 cm is a good size already with minimum healthy tissue loss, but big enough to easily target.

Bonnie, you are right regarding having only one lung done. I am sure that if I had both done I wouldn't feel quite so springy. There is definitely inflammation in the treated lung right now. I get around 3.5L on that plastic breathing exercise machine they give you post-operatively. Right after I only got 3L. I didn't try it before, but I am sure I would easily max it out at 4L+.

Walked to Downtown, around and back today (over 10 km, or 6 mi) and it was alright. Feeling great for sure. One more day tomorrow and I'm heading back to the crappy rainy place.