Ivan rocking it since 2003

[Jorge]

Wise and brave move!
Wish you speedy recover every day!

[Ivan]

Back in the gym now. I had a flu at the same time as the ablation for the first time ever. It wasn't a pleasant experience, to be honest.

If at all possible, make sure you don't have a flu or cold when you're having an ablation.

[D.ap]

Good advice Ivan!
Glad to hear that you are feeling better !

[Olga]

There is a bit of the good news from us - Ivan's brain scan is good, clear! He had it so long ago, we had to wait for our brain surgeon to come back from his vacation and then to go trough the backlog of the staff he had to deal with urgently in the preparation for the pending surgeries etc. - he is the famous head of the brain surgery here. So it took more than a month of waiting this time. To remind the story - Ivan had only one single brain met that was Dx and easily successfully resected in June 2013 and nothing since in the brain.
Re. flu and lung cryoablation - he does not remember that, but in June 2015 when he had a pretty big cryo in Providence by Dr.Littrup, he had a flu after that with the high temp for a week, then it was getting better but I suspect he could the bacterial infection (cold) and it was couple of weeks of coughing. There is a subset of the patients that get so called "post ablation syndrome" when the body produces the response to the procedure in a way it feels like flu. So it is hard to say if he gets that response when the ablated tissue amount is pretty big (it was 3 mets this time and 2 centrally located bigger mets in Providence). Or just a coincidence of cryo with the cold. Yes, it is better to be healthy when going into the ablation. The ablated area can temporarily block the small bronchus and if there is an infection trapped there it may lead to a pneumonia (despite Ivan having had the vaccination, it does not cover 100% of the possible causes).

[D.ap]

Olga and Ivan
Great news!
Sharing in the good news with the feeling of great joy !
Love
Debbie and family

[Bonni Hess]

Dear Ivan and Olga,
I am sharing the great joy and relief of Ivan's VERY good brain MRI results , as well as your frustration for (inexcusably) having to wait a month to get the results . I am so sorry for the scanxiety, stress, and anguish that the long delay in getting the brain MRI results must have caused you, but deeply grateful that the scan results were clear. It is really incredible and wonderful Ivan that you have not developed any further brain mets in the absence of any blood brain barrier crossing systemic treatment since the initial met which was diagnosed and resected in 2013, since our personal experience with Brittany and my observations of many other ASPS patients have shown that once ASPS metastasizes to the brain, additional brain mets usually continue to develop. Your ability to continue to successfully fight this disease without any systemic treatment is really an inspiration and truly shows how VERY unpredictable this disease is, how unique each individual patient's ASPS experience may be, and exemplifies how diligent monitoring and pro-active treatment of the disease can contribute to a more successful outcome. I am sorry for the post Cryoablation suffering that you experienced Ivan, but very grateful that you have now fully recovered and have been able to resume your normal physical activities and workouts. I Hope that you will continue to feel good, to be able to enjoy your very active physical Life style, and to have clear scan results.
With happy hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[jenhy168]

Great news re. brain scan results!

Ivan - I totally understand your suffering of having flu and getting an operation done. That happened to me last year when I got my lung vessel cauterized because I was coughing up blood. They found influenza virus in my lungs while they did my bronchoscopy. I felt so weak and sickly.

[MartinBube]

Great news folks

[Jorge]

Great news!

[Olga]

This is an update on Ivan's status. Lungs CT, abdominal MRI and brain MRI were done in the last months.
Lungs CT showed some inconclusive result re. cryoablation of the 3 lung mets done eraly in the year locally by Dr.Liu in Vancouver General Hospital, so we had to consult Dr.Littrup for the second opinion re. completeness of the ablation. His opinion (Dr.Liu says the same) that there is no evidence that the ablation was incomplete and to wait for the next scan. There are some small slowly growing lung mets as well, they are few mm in size. We will be watching them.
Abdominal MRI showed no recurrence at the sites of the 3 previous adrenal ablation, the adrenal function is fine but they can not say which one is working or both due to the scarring. The pancreatic metastasis resection is fine, no recurrence. The sad news was that although Dr.Walz saved both - splenic vein and artery, the vein later got scarred and closed and subsequently failed, but since it happened gradually and without the sudden catastrophic event that could cause an internal bleeding, the collateral additional venous system developed and the spleen survived. So Ivan kept the spleen/pancreas but now there are some concerning veins that run in the places where they should be and are prone to bleeding. We have a consultation scheduled to investigate their location/condition to figure out if they are ok or need to be dealt with somehow to avoid a sudden bleeding event.
Brain MRI is fine! which feels really so good.
We have also a bone scan scheduled after reflecting on what is happening with Jussi jaw bone met and that it seems that the bone mets can grow relatively unnoticed till it is to late to be cryo or RFA ablated. So the idea to try to find them early.
Other than that, Ivan feels good and is having a great summer with lots of biking, hiking and sunset photo-sessions in addition to his usual weight-lifting.

[D.ap]

Ivan , Olga and family
Great report , overall.
Wow that's amazing the recovery that the vein /artery accomplished ,after the surgery to the area.
I hope you are able to get some answers ,as I know Ivan is so active, and I would imagine that stress and strain could
play havoc to a potential bleed?

Is Ivan's dentist aware of Ivan's diagnosis ?
Another way to help keep tabs on jaw mets .
With the teeth X-rays

[Olga]

We discussed that, and Ivan is having the reg. dental X-Rays once a year, and I would expect that usually the mets in that area would be visible on the brain MRI? seems it did not work in Jussi's case. But ASPS patients can get bone mets elsewhere so we this is why we decided to have a bone scan too. May be not every year, I do not know.

[arojussi]

Glad to hear from you. Bone scan is indeed most sensitive in detecting bone abnormalities, so as long as you dont mind little radiation it is best scan to start with. If bone scan shows something you might need more scans to find out exactly what it is. Mri was sensitive enough to find my mandibular met, but no scan was specific enough to rule out infection. Finally angiography cave us certainty, but even before this surgeon has decided to resect the lesion. Mandibular mets are rare but they can look exactly like infections. My mandibular met surprisingly wasnt very painful. I guess we managed to resect it just before it become faster growing and painful. As we all know it is best to find mets before they cause any symptoms.

Sorry about blood vessel abnormalities. But when it comes to bad news, that is not the worst possible thing and sounds like you have time to deal with this problem now.

[jcs2007]

Olga,
thanks for the update on Ivan and so glad that his brain mri looks good and hope the spleen issue does not become a major concern. We also did a recent bone scan for Sam which it had been a few years and a PET scan, which he had never had before. We are still trying to decide on resection of pancreas met or try one of the clinical trials. In the meantime, Sam stays active like Ivan with walking and weight lifting.

[Ivan]

Hello, ASPS friends. I have some really bad news to share since the last post, and no good news. I'll make it short.

1) Two new pancreatic lesions were found at the very end of October by MRI, were deemed treatable through a big open surgery, sparing the healthy tissue.
2) In preparation for pancreatic surgery, a CT and an EKG discovered an abnormal result.
3) A 1 cm soft tissue metastasis was found in my right glute. Not sure how long that's been there, the area hasn't been scanned since 2013. (FREE BONUS to all the rest)
4) An echocardiogram (specialized heart ultrasound) was ordered, and showed a 4x3 cm suspected cardiac tumor.
5) On Nov 10 a cardiac MRI (a nearly 2 hour long scan with ~80 breath holds) definitively showed two cardiac tumors - 4x3 and 2x1 cm - in crappy locations.

The local cardiac surgeon in BC met up to discuss surgery options on short notice. The takeaway was that he has no experience with this, and the surgery would be very dangerous and have high morbidity. Imaging was also sent to Heidelberg, Germany and to Toronto, Canada. The German team also declined. The Toronto team have some expertise with this and should reply this coming week, but I can't count on it being resectable reliably.

Anyway, it was a major oversight on my part to not have periodic echocardiogram tests - at least on a yearly basis. The heart is not visualized on any non-gated CT/MRI scans of the area. It's very disappointing. I recommend you "follow your heart" I added it to the recommended ASPS scan schedule. It's a pretty simple test anyway.

Right now it appears likely that I will attempt Keytruda or some other PD-1/PD-L1 blocker, possibly in combination with Sutent later (if initially not effective). I'll try to find someone who is willing to resect the heart metastasis if it shrinks and they feel confident enough that my heart can recover.

The answer your questions about how I feel would be two-fold. My heart performs fine for exercise, and according to everyone is working fairly normally. I have had weird heart beats and palpitations, but I am not sure if this is due to anxiety or related to the tumors. I haven't had any bad ones lately, so I can't say. Mentally, I do not feel well. I have not been able to work very well, and have been feeling many anxiety and depression related symptoms. Sometimes I am able to overcome them, but sometimes not. I continue going to the gym daily, and it helps. Reading books helps.

I have been preparing a literature overview on maximizing PD-1/PD-L1 response based on two research articles that just got published - http://science.sciencemag.org/content/e ... ce.aan4236 and http://science.sciencemag.org/content/e ... ce.aan3706 which has taken a lot of effort. It should be relevant to anyone who is on a PD-1/PD-L1 trial.