Ivan rocking it since 2003

[Fictional]

Congrats Ivan and Olga!

This is fantastic news!!!

[Bonni Hess]

Dear Olga,
This is wonderful and VERY encouraging news! . I am sharing your great joy, relief, and strengthened Hope, and holding very tight to Hope for Ivan's continued disease stabilization and increasing lung capacity. I am so grateful that he is feeling so good and is able to be so physically active. Please give Ivan and yourself happy hugs and high fives from me, and enjoy the coming Holiday season with the gift of these very good scan results lightening your hearts and bringing you much happiness.
With CONGRATULATIONS!, special caring thoughts, and continued Hope,
Bonni

[Elaine Anderson]

Awesome!

[MANIA]

Olga and Ivan
this is such a great news! I can imagine how happy You feel!
Lots of greatings:)
m

[Olga]

Ivan's CT scan result was told to us yesterday, May 3, 2010.
He only has one met in the right lung progressed from 7 mm to 14 mm in 5 months period of time since the previous scan with the rest is said to be stable. He was not on any treatment during this time or ever except surgeries.
This lung was operated by Dr.Rolle two years ago. This is the medial right basal pulmonary nodule, as I remember it is a deep seated one that was missed due to the developed lung stiffness toward the end of the surgery because it was very long. the rest of the nodules/scars are said to be stable with no new mets identified. We started the process of pre-evaluation by the local RFA doctor and I contacted Dr.Littrup assistant asking his permission to send the disc for his evaluation also. We are also sending the scan to Dr.Rolle for his evaluation and record. The result is not bad at all given the number of mets we had and resected and suspicious nodules that are seen and the time elapsed since the surgery. It is a year after the last surgery on the left lung and two years on the right lung and this is the only documented progression Ivan has. I hope the location is good for the ablation and I am going to speed it up as possible. In our experience the ASPS mets close to 20 mm get very vascular and grow faster. VATS is out of question here as there is a lot of scarring and adhesion, so the ablation is probably the way to go for now, we have to evaluate RFA versus cryo. I am not sure that there is any evidence that RFA causes distant progression either as the result of the dissemination by the probe or as the result of the immune suppression due to big necrotic area impact. There are a few new big articles on the statistics after the RFA for the lung mets in other diseases so I am going to read them all to get myself up to date on the modality. To bad they mostly focus the local control of the ablated nodule and it will be hard to figure our what was the impact on the disease overall. I propose to move the discussion re. ablation to the corresponding area of the board to keep it classified.
Ivan feels very good overall, his quality of life is excellent and his new game is hot yoga that he feels is very beneficial for the rehabilitation after the multiple thoracic surgeries he had.

[Fictional]

Ivan, Don't know whether this would also factor in for you - we've been researching both doctors and came across this negative page on Luketich! There are also positive reviews of course - but I think this is the worst review of a doctor I've ever seen on the internet (I'm sure it's pretty stiff competition though). http://www.ratemds.com/doctor-ratings/3 ... h/Luketich

I think it's great that you're doing so well - you are an inspiration.

We would be very happy if we could ablate the ones the get too big. We feel it was ultimately very helpful having Rolle remove so many, but are still dealing with multiple mets. If Rolle hadn't removed 15-30 in 'K', she could have been turned down for ablation now. Apparently they usualy only ablate a few at a time.

[Olga]

Some intermittent update - 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 b 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. The accommodation will be arranged by the guest services at the guest housing building on the hospital territory, they also provide a pick up at the airport.

[Ivan]

The ablation was done on May 26, 2 weeks ago, we came home 1 week ago, more info in a cryoablation forum/treatment modalities. I feel almost normal, more or less. The puncture site still feels superficially sore, like a moderate bruise. On a very deep inhalation I can still feel mild pain inside the lung in the general ablation area. It was a bit sharper before (still not bad) but subsided substantially after about 10 days. Last time I coughed up coagulated blood was about 1 week after the procedure. For me, one of the most impressive parts was the very low pain levels throughout. I think it's telling that I didn't have to take a single pain killer tablet, including immediately after the procedure.

I was in the sauna with a friend and challenged him to find the ablation site. After about 1-2 minutes he couldn't. After I showed him the general area, he was able to see it.

[Ivan]

I went jogging today and it didn't feel completely normal. I could definitely tell that my right lung is not operating at full capacity. I felt a bit of a sting in the lung (interestingly the top, not the bottom) and certainly some shortness of breath. Nothing that persisted after I was done. I am willing to bet that at least some of this discomfort is due to the piercing by the needle, not only the ablation itself.

I would say be careful and take it easier than normal even after the prescribed 2 weeks of rest. Overall, I am happy with my recovery rate. Hopefully, in a couple of more weeks, I can forget about it.

[Ivan]

Very nice progress for my second jog today. Much better Felt similar, but much less shortness of breath and sting.

To me, the most amazing thing is how quickly the body recovers, even after a thoracotomy. It's like a game where you keep improving.

[Olga]

Just FYI - people on this picture are Ivan a week after the cryo, June 1, 2010 - we are flying home later on this day - and Dr.Littrup, on the radiology floor.

[jcs2007]

Olga,
Bless you for putting this picture on the board.
It truly gives Hope to all those battling ASPS.
Best wishes on his continued recovery.
Peace, Cindy

[Ivan]

Alright, so I did a timed run a couple of days ago. 10 laps at the track about as fast as I could. That was ~21 minutes at 11.5 km/hr.

Before the ablation I could run an extra lap in this time, which corresponds to a 10% reduction in VO2MAX (temporary, of course). Internally, this must do more damage than is felt externally. I'll keep track of how long it takes to come back.

Today I ran 10 laps in 20.5 minutes - a slight improvement already.

[Anders]

Alright, so I did a timed run a couple of days ago. 10 laps at the track about as fast as I could. That was ~21 minutes at 11.5 km/hr.

Before the ablation I could run an extra lap in this time, which corresponds to a 10% reduction in VO2MAX (temporary, of course). Internally, this must do more damage than is felt externally. I'll keep track of how long it takes to come back.

Today I ran 10 laps in 20.5 minutes - a slight improvement already.

Thast really good... 1 lap is 400 or 800M?

Normally dont time my rubs, but while i was on chmo i did an official run... its was only 5km and i did it in 31m... on chemo id say thats ok hehe.

Btw ivan... how is your diet like... whats do you eat during the day... take vitamins or stuff like that?

[Ivan]

Alright, so I did a timed run a couple of days ago. 10 laps at the track about as fast as I could. That was ~21 minutes at 11.5 km/hr.

Before the ablation I could run an extra lap in this time, which corresponds to a 10% reduction in VO2MAX (temporary, of course). Internally, this must do more damage than is felt externally. I'll keep track of how long it takes to come back.

Today I ran 10 laps in 20.5 minutes - a slight improvement already.

Thast really good... 1 lap is 400 or 800M?

Normally dont time my rubs, but while i was on chmo i did an official run... its was only 5km and i did it in 31m... on chemo id say thats ok hehe.

Btw ivan... how is your diet like... whats do you eat during the day... take vitamins or stuff like that?

400m - standard track. If it was 800m track, I think that would be probably faster than world record time? I don't take vitamins because there is no proven clinical benefit. In general I eat lots of vegetables, fruits, meat, and a fair amount of carbs. No unhealthy foods like deep fried or with too much sugar, or salt. I am happy that you are through the second one already. I see it's nice weather there around 30C and sunny most of the time. Nice to enjoy that in the park.

Today I ran my 10 laps in 19:52 I am almost getting no weird feeling in the lung now. When I work it down to 18:00, that's when I can consider being back to the VO2MAX which I had before the cryo.