Anders Giebel from Denmark - Dx 2007 - RIP 29/04/2011

[Anders]

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.

I have almost no scar tissue on the first operated site, and didnt do anything. But i was told by one of the docs in coswig, that i have a condition (not bad in any way) that makes me grow rather large scars, so cant do much about it really. Again its not anything to worry about, it just meens im not pretty

[Amanda]

I have almost no scar tissue on the first operated site, and didnt do anything. But i was told by one of the docs in coswig, that i have a condition (not bad in any way) that makes me grow rather large scars, so cant do much about it really. Again its not anything to worry about, it just meens im not pretty

For some reason the words "He is a pretty man" seem like they do not fit *shrugs* hehe

BTW i play WoW. I have sence it started =D
LOTR is awesome but i thought it would be better to be good and stay with only one game!

[Anders]

I have almost no scar tissue on the first operated site, and didnt do anything. But i was told by one of the docs in coswig, that i have a condition (not bad in any way) that makes me grow rather large scars, so cant do much about it really. Again its not anything to worry about, it just meens im not pretty

For some reason the words "He is a pretty man" seem like they do not fit *shrugs* hehe

BTW i play WoW. I have sence it started =D
LOTR is awesome but i thought it would be better to be good and stay with only one game!

Never given wow a try... for same reason. One game like that, takes up enough time hehe

[Amanda]

Never given wow a try... for same reason. One game like that, takes up enough time hehe

It helped to take my mind off cancer playing the game and also being able to fly and things like that when I was in so druged after the last surgery...
Also the friends in game didnt know what was going on and didnt treat me different then people i meet off the game that knew and that also made me feel better ... Is it that way for you also?

[Anders]

Never given wow a try... for same reason. One game like that, takes up enough time hehe

It helped to take my mind off cancer playing the game and also being able to fly and things like that when I was in so druged after the last surgery...
Also the friends in game didnt know what was going on and didnt treat me different then people i meet off the game that knew and that also made me feel better ... Is it that way for you also?

Yes, i also found that playing these games in the evening, gave me som space where i didnt have to worry about desease and stuff. Some of my ingame friends, know, but most dont. Its a nice little window to normality

[Anders]

Hi Guys
Im doing well... Since the surgerys i have had some back problems, but a pysio helped with that, and its gone now... Then i got a fiber in my inner thigh when i was testing my lungs doing a 1km run... So bit of bad luck, but its getting better now

Lungs fel great for normal actibity , they feel as before surgery, so thats good, but o proably wont know till i stress them a little. Going for my first post surgery scan this comming tuesday, and gonna get a answer on the 7th next months. With the short time since surgery and the way this desease seems to grow, i expect alot of scars and probably some stuff the doctors will keep an eye on for some time. After reading ivans poss, i think theres always something to keep an eye on.

Ill make sure to repport back with the results. Ill have contrast (blood and for drinking)... damn hate that drining stuff

[Ivan]

Hi Guys
Im doing well... Since the surgerys i have had some back problems, but a pysio helped with that, and its gone now... Then i got a fiber in my inner thigh when i was testing my lungs doing a 1km run... So bit of bad luck, but its getting better now

Lungs fel great for normal actibity , they feel as before surgery, so thats good, but o proably wont know till i stress them a little. Going for my first post surgery scan this comming tuesday, and gonna get a answer on the 7th next months. With the short time since surgery and the way this desease seems to grow, i expect alot of scars and probably some stuff the doctors will keep an eye on for some time. After reading ivans poss, i think theres always something to keep an eye on.

Ill make sure to repport back with the results. Ill have contrast (blood and for drinking)... damn hate that drining stuff

Good to hear you are feeling good.

Just be careful getting back to normal activity. Warm up well, because your muscles are not used to it after some time off.

[Anders]

bad news
Since my last visit to Rolle i have some new nods in both lungs, plus the spot on my liver, the one they didnt think was cancer, has grown. They are still not sure if its cancer. Sadly they also see som changes to my bones in the lower back and to my "pubic". Thats what google translates it too. So spread to bones, that is really not good.

They say resection is not possible, and wouldnt change much since i have spread to other parts, Im starting new chemo in a try to controll the desease, but i was told that its not possible to cure me.

I really hoped atleast, it would be under controll after the two surgerys. The new treatment requres me to be hospitaliced for 4 days every 3rd week, so wont be able to keep my job either.

What do you guys think about the message " We cant cure your deasease, only try to control it"? Right now we are having a hard time, cus its hard being the bringer og bad news to the kids and my girlfriend + the rest of my family.

Is this the right aproach?

[Olga]

Anders, hi, I am sorry to hear that but really I have so many questions after your post that you will have to answer them before any advices can be given, and if you can not - go back to your doctors asking them. Are these "changes" in the bones definitely mets, if they are suspected for the metastases why would they say "changes"? Is the growth in the liver a met too? What type of scanning was done in the first place - was it a CT scan - and did you have an additional scanning to clarify these findings? Did you have bone scan, MRI of the liver and pelvic bone? How big is the spot on the liver and what was the growth? Can it be ablated or resected?
New mets in the lungs are expected, and they can be also the scars and they have NO WAY to say what it is until the next scan, based on the growth.
Answer first about the scanning, OK?

[Bonni Hess]

Dear Anders,
I am so deeply sorry to hear about these new findings and concerns of disease progression with possible new tumors and tumor growth, but I agree with Olga that there are many questions which need to be addressed and answered in order to better know and understand more definitively what the situation actually is. If there is indeed disease progression in several different areas as you describe, I agree with the doctors that a systemic treatment is advisable to try to stabilize the progression and Hopefully shrink the tumors. You did not say what type of chemo you are scheduled to have, but if you are being hospitalized for it I am assuming that it is probably something like adriamyacin and ifosfomide which has been a traditional chemo treatment used by oncologists for sarcoma, but unfortunately it has not been shown to be very effective with ASPS and I would question the wisdom of subjecting you to this very harsh, toxic, and not very effective treatment regimen when there are more promising less toxic treatments now available such as Cediranib or Sutent. Heartbreakingly, the doctors are correct when they tell you that at this time this disease can't be cured, only controlled, since there is currently no permanent cure available for ASPS. However, once your disease progression has been stabilized and the concerning tumors have been successfully resected or ablated, you will Hopefully be able to control your disease progression with a systemic treatment until an effective permanent cure can be found. In the meantime, please know that you are not alone in this challenging battle and that you have the shared experience, special caring, and strengthening support of all of us on this Board to help you. Take care Anders, stay strong and positive, and keep the Board updated as you are able.
With deepest caring, healing wishes, special thoughts, and continued Hope,
Bonni

[Ivan]

Too bad But don't get down on yourself. We have here a patient who had all the problems you had, and she's doing great now - Brittani. You just have to act quickly, and deal with everything in the best possible way.

Of course there is no "cure" for ASPS, so controlling it is basically what we all do. Also, if it grew and it's in the liver - it's probably a met.

What kind of chemo? I don't think chemo is the right option either way. You need Cediranib. Did you talk to them about the possibility of getting it?

[Anders]

Hi all

Chemo
They are gonna give me ifosfomide. And if that doenst help, they have some other treatments. At the time, i didnt have the room in my head so dont remember it. Gonna find out.

Scans
These new findings are based on CT scans. The new scan with the findings, was done without contrast. The liver spot, they are not sure about, They looked at it with different methods... ultrasound CT and probably an older MR scan. They say that the growth is from 6 to 12 cm. They say this can still be other stuff than cancer.
I have had no bone scans, and my latest MR is like 2 years old, its like they just assume that these new findings are either ASPS or another type of cancer. Same treatment they say, so i dont think they will look further into this. But i will ask for it.

Cediranib
asked about this, but the doc didnt concider any of the "nibs" as he called em. Im gonna look further into this.
Ill ask about Sutent.

Resection
I asked about this, and they say they wont get any surgeon to do this. How do you treat bone mets? If it is a liver met, and it probably is, they talked about surgery.
I didnt get to talk to my normal doctor, and the replacement was not doing a good job. He said he didnt do any messurements to what they believe are bone mets.
When i get my head straight, ill contact my doc pr mail with these questions.

You guys are the best... what knowledge

[Olga]

Bone mets.
First you have to get an MRI to find it out and to be able to send it out on a CD to someone for the second opinion. You can treat the bone mets with the local ablation (RFA, cryo) or radiosurgery. If they are small, the treatment can be definitive/successful - how big they are and what is the number? You can make a self referral to Dr.Vogl in Frankfurt if you can pay for it, he uses all these ablations a lot and he is never out of ideas, he is like Dr.Rolle but only in the ablation techniques field.

Liver met (if this is a met).
First you have the right to find out what it is, how do they expect you to start the systemic treatment with the high dose Ifosfamide based on the suspicions only? The surgery is a good choice but any surgeon would want to have an MRI before of the surgery anyways. How come no one has noticed this growth on the previous CT scan?

Lung mets.
Did they find new mets on both sides or on the last operated? What size are they?

Chemo.
High dose Ifosfamide for ASPS? I do not think so, what possible explanation do they have for this idea? Besides, you already had it in the AIM combo before, did you not? The other combo they are talking about is GemTax (gemcitabine+taxotere), some of our people tried it with no success. We had a case, a patient with the liver/lung mets regression on a long term administration of the gemcitabine only (18 month long treatment), it is a much easier regiment then GemTax. The story is under the name Camilla.

Before to start any experiments with the systemic treatment, I suggest you to make sure all the local treatment options are evaluated, do not rush to start Ifos yet. Talk to your regular oncologist, not the replacement, it doesn't look like this one knows anything about ASPS specifics.

[Anders]

Hi Olga

Lung mets:
They are on both sides, and are all in the lower mm range. But again i didnt get presice messurements. But i dont have any count on it.

Liver/Chemo:
Its like they se it all as a whole. They seem sure the lungs are mets and sure the bones ones are too. Therefore the liver wont change anything. Still chemo. This is how i understand them, but i already talked to my normal onko and he said he will make sure i talk to him next time, and answer all my questions. As for growth im sure they noticed, but still think its not related to ASPS.

Chemo:
I dont feel like this is the right way, but need alternatives that they are willing to try. They seem very konservative about thir approaches.
I had doxorubicin before, and it shrunk the mets noticably. Im guessing they hope this can do the same.

[Olga]

Lets talk about the lungs.
With the suspected lung you have to make sure that they have good understanding of the scanning problems after the laser assisted Dr.Rolle surgery.
If there were for example 20 mets seen on the CT scan in the lung before of going into the surgery and he found another 20 by the manual palpation, the smaller ones, that were not seen on the CT scan, and burned all of the smaller ones on the spot, the picture on the next first CT scan after the surgery will be as follow: Previously seen 20 are resected and there are scars of the different shapes some linear some round and there are 20+ small round scars with the sizes 2-4 mm - this is what he makes from 0.5-1 mm lung met when he burns it by its laser, he does not remove the necrotic tissue.
So the first scan after the laser assisted surgery always looks like a progression - the ones that were seen before became bigger and there are 2 dozens on the new ones. Therefore the first scan after the surgery is only good as a base line scan for the next scan to compare, I would not really even worry about the just operated lung now. You have to be more interested in what is seen on the CT scan for the other lung, if there is a growth in the existing ones or the new ones.
Some radiologists have better understanding of this situation but some will still write "progressive disease" and most of them will not count these mets and compare scans side by side when there are so many objects to be compared manually, from their point of view what they see surely looks like a progressive disease and it influences their reading/attitude toward the rest of the finding on the scan - liver situation and pelvic bone spots, although the situation in the lung might be not bad at all, most of the nodules they see are the round shaped scars leftover after the surgery, do not let them to go into this attitude, everything has to be proven, not assumed.
Most of oncologists are very conservative in their approach to the metastatic sarcoma treatment but ASPS is a slow growing sarcoma that gives an opportunity to deal with the mets locally and survive with the good quality of life.