Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan wrote:

Anders wrote:And we have news!

Ill be going for my second surgery in coswig in week 25... Im supposed to be there monday 21st og june.

I think that's a great time. You will feel great and be quite recovered at that point from the first surgery.

Have you had a chance to go jogging yet?

Nah olgas post made me a bit careful again

Anders wrote:Nah olgas post made me a bit careful again

*Nods and smiles*

It is best

I am very happy to hear that you are going to have the treatment soon! An that you are feeling so well..

So i will be leaving for coswig in Germany on Sunday morning. This time im taking the train... 800km in a car, just isnt worht it hehe

Ill be back on forum with an update from the hospital, when i am off the tubes... Probably sometime after next weekend.

take care

Good luck!

Anders wrote:So i will be leaving for coswig in Germany on Sunday morning. This time im taking the train... 800km in a car, just isnt worht it hehe

Ill be back on forum with an update from the hospital, when i am off the tubes... Probably sometime after next weekend.

take care

I think the second time will be easier for you. Every subsequent time has been easier for me.

Good luck and work hard to get out of there as quickly as possible! Even if sometimes that means sitting and not doing something you want to

Hello from Coswig!
I had 23 mets removed from my leftlung last wednesday. Scans where showing 20, they have an awsome CT scanner here. We are talking 1-2 mm here.

Again, like last time, i didnt get the epidural spine thingy for the pain, instead i got a surgerally inserted little tube... worked verry well
Pain was handled very well, and i was blowing 3+ L before i left intensive care last saturday. I was totally unplugged before leaving intensive care too. I spend sunday watching soccer maches and relaxing in my room... weekends here are really borring. Im very lucky to be here with another guy from denmark, with whom was was also here last time.

Monday i startet the workout, and got alot of fresh air... Shortness of breath is easing up alot, and today i went for a ride on the training bike... really pushing it at 60w for 10m . Seems low compared to the 197W i did before surgery, but you cant really compare those numbers. As things are right now, i had half the stiches removed, and will have rest removed thursday, i will probably be leaving for denmark the comming weekend. So basicly i did pretty much as i did last time... No surprises, and thats always nice.

Sorry i didnt write earlier... i had real problems logging in for some reason

Anders wrote:Hello from Coswig!
I had 23 mets removed from my leftlung last wednesday. Scans where showing 20, they have an awsome CT scanner here. We are talking 1-2 mm here.

Again, like last time, i didnt get the epidural spine thingy for the pain, instead i got a surgerally inserted little tube... worked verry well
Pain was handled very well, and i was blowing 3+ L before i left intensive care last saturday. I was totally unplugged before leaving intensive care too. I spend sunday watching soccer maches and relaxing in my room... weekends here are really borring. Im very lucky to be here with another guy from denmark, with whom was was also here last time.

Monday i startet the workout, and got alot of fresh air... Shortness of breath is easing up alot, and today i went for a ride on the training bike... really pushing it at 60w for 10m . Seems low compared to the 197W i did before surgery, but you cant really compare those numbers. As things are right now, i had half the stiches removed, and will have rest removed thursday, i will probably be leaving for denmark the comming weekend. So basicly i did pretty much as i did last time... No surprises, and thats always nice.

Sorry i didnt write earlier... i had real problems logging in for some reason

Sounds like you are progressing along nicely. That's fine for the bike - I am sure you will work your way upwards of 100W easily before you leave. I am happy to hear that you are not suffering too much from the pain.

Say hello to Dr. Rolle for me.

Ivan wrote:

Anders wrote:Hello from Coswig!
I had 23 mets removed from my leftlung last wednesday. Scans where showing 20, they have an awsome CT scanner here. We are talking 1-2 mm here.

Again, like last time, i didnt get the epidural spine thingy for the pain, instead i got a surgerally inserted little tube... worked verry well
Pain was handled very well, and i was blowing 3+ L before i left intensive care last saturday. I was totally unplugged before leaving intensive care too. I spend sunday watching soccer maches and relaxing in my room... weekends here are really borring. Im very lucky to be here with another guy from denmark, with whom was was also here last time.

Monday i startet the workout, and got alot of fresh air... Shortness of breath is easing up alot, and today i went for a ride on the training bike... really pushing it at 60w for 10m . Seems low compared to the 197W i did before surgery, but you cant really compare those numbers. As things are right now, i had half the stiches removed, and will have rest removed thursday, i will probably be leaving for denmark the comming weekend. So basicly i did pretty much as i did last time... No surprises, and thats always nice.

Sorry i didnt write earlier... i had real problems logging in for some reason

Sounds like you are progressing along nicely. That's fine for the bike - I am sure you will work your way upwards of 100W easily before you leave. I am happy to hear that you are not suffering too much from the pain.

Say hello to Dr. Rolle for me.

I will when i see him, he is a very busy man

Forgot to mention... according tot he test done on lungs here in coswig, my capasity was back on 96% on one test and 100% in another... compared to before first surgery... not bad.

Anders wrote:Forgot to mention... according tot he test done on lungs here in coswig, my capasity was back on 96% on one test and 100% in another... compared to before first surgery... not bad.

Volume wise, or VO2MAX? The true test would have been if you did the bike before the surgery and see what kind of watts you could get. I think if you got ~200W before you would have gotten maybe ~160-180W because it takes 1 year to truly heal completely. Then again, your surgery was much less than mine so hopefully it's quicker for you.

Ivan wrote:

Anders wrote:Forgot to mention... according tot he test done on lungs here in coswig, my capasity was back on 96% on one test and 100% in another... compared to before first surgery... not bad.

Volume wise, or VO2MAX? The true test would have been if you did the bike before the surgery and see what kind of watts you could get. I think if you got ~200W before you would have gotten maybe ~160-180W because it takes 1 year to truly heal completely. Then again, your surgery was much less than mine so hopefully it's quicker for you.

Dont think i would make 180W now... probably more like 120 or something... Gonna continue training on my bike at home for about 4 weeks, and then i will start jogging... cant wait!

Its volume only... Just did the test again, because im going home tomorrow, and now the volume is 58%... so 3.3L... as 100% would be 5.8L. Funny, cus i can get to 4L with the little training thingy you get before surgery to train with.

Got the last stiches out yesterday, and wound is looking good. Tomorrow its home by train

By the way... Rolle said hi back to you and Olga

Anders wrote:Dont think i would make 180W now... probably more like 120 or something... Gonna continue training on my bike at home for about 4 weeks, and then i will start jogging... cant wait!

Its volume only... Just did the test again, because im going home tomorrow, and now the volume is 58%... so 3.3L... as 100% would be 5.8L. Funny, cus i can get to 4L with the little training thingy you get before surgery to train with.

Got the last stiches out yesterday, and wound is looking good. Tomorrow its home by train

By the way... Rolle said hi back to you and Olga

Of course not now, I meant just before the second surgery.

The breathing device is far from accurate. I've used about 3 different ones and you get different volume on each of them, depending on how fast you breathe in, etc. You can only compare it to itself at the same inhalation speed.

I am happy it went very well for you. Did you find the second surgery to be the same, easier, or more difficult than the first?

Ivan wrote:

Anders wrote:Dont think i would make 180W now... probably more like 120 or something... Gonna continue training on my bike at home for about 4 weeks, and then i will start jogging... cant wait!

Its volume only... Just did the test again, because im going home tomorrow, and now the volume is 58%... so 3.3L... as 100% would be 5.8L. Funny, cus i can get to 4L with the little training thingy you get before surgery to train with.

Got the last stiches out yesterday, and wound is looking good. Tomorrow its home by train

By the way... Rolle said hi back to you and Olga

Of course not now, I meant just before the second surgery.

The breathing device is far from accurate. I've used about 3 different ones and you get different volume on each of them, depending on how fast you breathe in, etc. You can only compare it to itself at the same inhalation speed.

I am happy it went very well for you. Did you find the second surgery to be the same, easier, or more difficult than the first?

The time i spent on intensive care, seemed easyer this time... could be because i was there with another dane... last time i was solo alone in the room. Overall i feel it was a bit easyer this time, but my first time was easy too... was there 9 days after surgery last and 10 this time.

Before first surgery i got to 185w and this time i was 197w.

About the breathing device, i try to keep the ball in the middle... its easy to get higher, if you breath in a little harder... but its a cheat

Hi all, and sorry i havnt been updating.

When i returned i was home relaxing fo a week, and then i went with my family in law and kids to the sea for a week to live in a rather nice cottage...

Now i have been home for a week, and been training on bike to prepare myself a bit for when i start running again. Ill start doing some light powerwalking this week, to make sure i dont push it... taking it easy.

Still have some pain in the operated area. Im sure its muscle related, because it appears when turning in bed og liftig stuff. The scar isnt turning ou as nice as the other one, but i have so many scars now, that it doesnt really matter

I am quite convinced that as soon as the incision is healed you should massage the scar and the operated area HARD. I believe the earlier you start, less scar tissue you will have.