Ivan rocking it since 2003

[Anders]

Im taking vitamin D these days... its not that sunny in denmark besides in the summer, and i work at a desktop. besides that, i take garlic pills. Have this uncurrable love for dark chokolate 60-70% and sometimes get an urge for coka cola (the original with sugar)... hate light products in general. Eat salats for lunch, grains for beakfast and way to much meat in the evening.

Im am gonna be changing some things when i get back home... its hard to change anything with the hospital food... its very unhealthy imo.

THursday its pizza time for me and my danish buddy... ordering from freddy fresh

[Ivan]

Im taking vitamin D these days... its not that sunny in denmark besides in the summer, and i work at a desktop. besides that, i take garlic pills. Have this uncurrable love for dark chokolate 60-70% and sometimes get an urge for coka cola (the original with sugar)... hate light products in general. Eat salats for lunch, grains for beakfast and way to much meat in the evening.

Im am gonna be changing some things when i get back home... its hard to change anything with the hospital food... its very unhealthy imo.

THursday its pizza time for me and my danish buddy... ordering from freddy fresh

Haha Freddy Fresh is getting popular. I think many Americans order there because they find the German food way too strange. I don't really eat pizza much.

Yeah I eat a couple of squares of Lindt 60-80% every day. It's questionable how well Vitamin D is absorbed. I think the best source is the sun

[Anders]

Im taking vitamin D these days... its not that sunny in denmark besides in the summer, and i work at a desktop. besides that, i take garlic pills. Have this uncurrable love for dark chokolate 60-70% and sometimes get an urge for coka cola (the original with sugar)... hate light products in general. Eat salats for lunch, grains for beakfast and way to much meat in the evening.

Im am gonna be changing some things when i get back home... its hard to change anything with the hospital food... its very unhealthy imo.

THursday its pizza time for me and my danish buddy... ordering from freddy fresh

Haha Freddy Fresh is getting popular. I think many Americans order there because they find the German food way too strange. I don't really eat pizza much.

Yeah I eat a couple of squares of Lindt 60-80% every day. It's questionable how well Vitamin D is absorbed. I think the best source is the sun

Yes the suns is the best, im returning to denmark with a tan

[Ivan]

Yes the suns is the best, im returning to denmark with a tan

Now we FINALLY have summer weather here too 20-28C, and sun all week. Today new time - 19:08, ~45 second improvement. Felt good today, can barely tell anything was done to my lung. I want to break 18:00 in the next 2 weeks, which would put me roughly where I was before the cryo.

Bought 4 new pairs of running shoes today hahaha. Walked in on a sale accidentally and decided to stock pile them, because each pair only lasts around 500 km. If I am injury free, I like to run about 25 km per week, so that's about 2 years worth of running shoes

[Ivan]

Yesterday new result 19:02. Not much of an improvement, but the lung felt totally normal. No hint of anything strange.

I blame it partially on the very hot weather - it was scorching at 1 PM. The main reason, of course, is that my knee is still preventing me from running as much as I'd like. Tomorrow I'll try it around 11 AM

[Ivan]

Well I did break 19 minutes finally - 18:59 It's hard to train until my knee injury heals, and allows me to run longer distances. I feel confident that by the end of the summer I will break 18 minutes.

My lungs currently lack 5% compared to before the cryo ablation.

[Anders]

Well I did break 19 minutes finally - 18:59 It's hard to train until my knee injury heals, and allows me to run longer distances. I feel confident that by the end of the summer I will break 18 minutes.

My lungs currently lack 5% compared to before the cryo ablation.

Very nice

Getting ready to pick up running again myself. Have been training on exercise bike and have just bought myself a new bike for training outsite. Capasity of lungs is getting there... id say its about 5 L now. Its a odd feeling to run out of air when legs feel like they could go on forever . Not pushing it, but doing alot more than i did when i sas between surgerys.

[Ivan]

Ok, so I had my CT scan on Sep 10. Although I didn't get a report yet, or meet the oncologist, I already got a copy of the scans . I'll see the oncologist on Sep 24 for the confirmation of below.

So I went ahead and compared them myself. I was comparing to a 15 month old scan. I compared 23 suspicious objects in each lung for a total of 46. My understanding is that most of them are scar tissue.

All but one were identical to within 1 mm or less. One looks to be 1.5-2 mm bigger. That fits within the measurement uncertainty, and if that's growth then I am more than comfortable with that pace

There is a big scar where the cryoablation was done. Of course, I am not sure how to read the results of that properly, so I will be sending a copy to Dr. Littrup for review.

[Amanda]

Hello Ivan
YAY!!

I wish i could read my scans.. I cant stand waiting! *I think* 2mm and under is viewed as film and not proof of any changes right?
Are you scanned every four months and with contrast?

Ok, so I had my CT scan on Sep 10. Although I didn't get a report yet, or meet the oncologist, I already got a copy of the scans . I'll see the oncologist on Sep 24 for the confirmation of below.

So I went ahead and compared them myself. I was comparing to a 15 month old scan. I compared 23 suspicious objects in each lung for a total of 46. My understanding is that most of them are scar tissue.

All but one were identical to within 1 mm or less. One looks to be 1.5-2 mm bigger. That fits within the measurement uncertainty, and if that's growth then I am more than comfortable with that pace

There is a big scar where the cryoablation was done. Of course, I am not sure how to read the results of that properly, so I will be sending a copy to Dr. Littrup for review.

[Bonni Hess]

Dear Ivan,
I am so happy that your preliminary review of your CT scans appears to show stable disease and no increased growth of your lung mets. I applaud your pro-active actions in obtaining a copy of the scans to preliminarily review yourself so that you don't have as much of the scanxiety and stress of enduring the long wait until September 24th to meet with your oncologist to look at the scans. To help alleviate the stress of waiting for results, we always insist on having Brittany's scans and meeting with the oncologist to review the results either the same day or the next at the latest, but I know that this is usually not possible with the Canadian medical care appointment scheduling. Did you have only chest CT scans, or did you have complete scans with chest/abdominal/pelvic CT's, brain MRI, and bone scan? Brittany's chest CT's also show scars (probably necrotic tissue) where her Cryoablations were done, and these areas are sometimes noted in the radiologist reports as being residual nodules by radiologists unfamiliar with Cryoablation treatment and scarring. I Hope that your September 24th meeting with the oncologist will confirm your assessment of the scan results, and I will be anxiously awaiting your update following your appointment. In the meantime, take care, relax, and enjoy your active Lifestyle, your admirable running activities, and the seemingly good news results of your scans.
With special caring thoughts, wishes for continued healing and good news, and ongoing Hope,
Bonni

[Ivan]

Hello Ivan
YAY!!

I wish i could read my scans.. I cant stand waiting! *I think* 2mm and under is viewed as film and not proof of any changes right?
Are you scanned every four months and with contrast?

Usually every 6 months, and without contrast. This time, however, I had contrast because (to answer Bonni's question below) I had everything scanned, including the abdomen.

Yeah well, I'd rather think that it grew by 2 mm rather be told that everything is stable. Then it grows by another few mm in 6 months, and I'm told everything is stable again. Repeat a couple of times. Then lo and behold - all of a sudden I have a big 1.5 cm met which is growing rather fast, and located close to important stuff. Meanwhile, they've told me that everything is stable. Then I have to run around, make decisions, contact a bunch of doctors in a rush, etc. This is stupid and absolutely unacceptable since we are dealing with a such a slow growing disease. This has actually happened to be, and it's freaking annoying. That's why I will always compare to OLD scans as well, rather than the latest one, to see whether it has actually grown. Because if you can see 7->8->9->10 over 2 years, it's likely growth. If you see 7->9->8->7->9 - that's probably just error of measurement.

As always, thanks for your well wishes, Bonni. Yeah, my oncologist had a week off. Usually I have a meeting within a week. For me, it's better to know now because if something looked bad there, I could start the process of contacting relevant people quicker.

[Amanda]

Hi Ivan
I am still doing the contrast and it has been done on allmost all of mt scans and i think it is startingt o make me sick :/ The last scan was no contrast and they scan my abdoman every time and pelvic. I am waiting to be used as a glow lamp...

I agree with what you said about them saying stable over and over and then BOOM 1CM .. I am after them alot and three different doctors see and read the scans along with the radiologyst and then i compare notes. I hope soon i go to six months it is getting closer to two years now... when did they change you to six months rather then three?

Is there a program that you have that i can get to do this?

[Ivan]

Hi Ivan
I am still doing the contrast and it has been done on allmost all of mt scans and i think it is startingt o make me sick :/ The last scan was no contrast and they scan my abdoman every time and pelvic. I am waiting to be used as a glow lamp...

I agree with what you said about them saying stable over and over and then BOOM 1CM .. I am after them alot and three different doctors see and read the scans along with the radiologyst and then i compare notes. I hope soon i go to six months it is getting closer to two years now... when did they change you to six months rather then three?

Is there a program that you have that i can get to do this?

If you request a copy of your scan, the program comes right on the DVD. It's called eFilm Lite.

Why do you think the contrast is making you sick? It's probably in your head, it's actually very safe [APPARENTLY NOT IF YOU DO IT FREQUENTLY ENOUGH SEE BONNI'S REPLY BELOW]. For lung CTs only, you can talk to them and ask them to stop giving you contrast.

I can't say I remember when exactly, but it wasn't very long. Probably around 2 years. I would discuss it with your oncologist.

[Bonni Hess]

Hi Ivan,
I strongly disagree with you about contrast not making a patient sick, about it all being in the patient's head, and about it being "actually very safe". After nine years of Brittany having too many contrast CT's to count, we absolutely know that contrast CAN and DOES make a person feel nauseated and it is definitely NOT psychological. Also, it is NOT "very safe" as you have erroneously stated because the oral contrast can cause kidney damage which is why it is extremely important to be well hydrated after the contrast scan, and the IV contrast can impact the thyroid as it did with Brittany when she was receiving frequent IV contrast monitoring CT's during her ARQ-197 Clinical Trial and she developed hyperthyroidism ( too much thyroid) which almost resulted in her needing to have her thyroid burned to reverse the hyperthyroidism. This would have been a permanent procedure which would have required her to take thyroid supplements the rest of her Life and to have an ongoing struggle with finding the correct thyroid level balance. Fortunately, once she was off of the Trial and no longer was required to have the weekly contrast CT's, her thyroid levels returned to normal and she didn't have to undergo the procedure to have her thyroid destroyed. The risks of CT contrast is information which every patient should be aware of, and I think that you are mis-informed and providing mis-information in this regard. Unfortunately, contrast is required to get the best and most accurate reading in abdominal CT's, so the only thing that a patient can do is try to limit contrast CT's to those which are absolutely necessary and required for a more accurate diagnosis, and to drink as much fluid as possible following the contrast scan.
With respectful disagreement, special caring, and continued Hope,
Bonni

[Ivan]

Hi Ivan,
I strongly disagree with you about contrast not making a patient sick, about it all being in the patient's head, and about it being "actually very safe".

Ok, I am definitely wrong then. I'll edit my post to make sure no disinformation is spread. I'll read up on it. Perhaps you can advise Amanda then? I think it's stupid to have contrast for lung CTs alone - I don't think it makes any difference.

I've personally never had a reaction to contrast, but I rarely get it anyway. Perhaps only once every 18 months, or so. Weekly CT scans sounds ridiculous - contrast, or no contrast. This is ASPS - it doesn't grow in a week or a month!