For the lungs, get a copy of the CT scan sent to Dr. Rolle for review ASAP. He will be able to tell you if there are some new ones, or it's the ablated ones which were too small to be visible before the ablation.
Request a bone scan, and an MRI for the liver. If they suspect it, they should let you have those without too many problems.
Anders Giebel from Denmark - Dx 2007 - RIP 29/04/2011
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Hi from Anders, and a bit about me.
Dear Anders,
I completely agree with Olga and Ivan's excellent advice, and I advise you to not proceed with the harsh and usually unsuccessful Ifosfomide chemo treatment at least until you have obtained more definitive information regarding the lung, bone, and liver met diagnoses in addition to consulting with a different/more competent oncologist and exploring other treatment options including local treatment of the suspected bone and liver mets with ablation, and Cediranib or Sunitinib (Sutent) treatment if a systemic treatment is needed. You need and deserve to receive the best oncological care and treatment recommendations possible from an experienced sarcoma, and preferably ASPS, specialist. Take care, stay strong, and be very pro-active and aggressive in demanding complete information and answers to any questions that you may have. These are extremely important decisions and this is your Life they are dealing with!
With special caring thoughts, healing wishes, and continued Hope,
Bonni
I completely agree with Olga and Ivan's excellent advice, and I advise you to not proceed with the harsh and usually unsuccessful Ifosfomide chemo treatment at least until you have obtained more definitive information regarding the lung, bone, and liver met diagnoses in addition to consulting with a different/more competent oncologist and exploring other treatment options including local treatment of the suspected bone and liver mets with ablation, and Cediranib or Sunitinib (Sutent) treatment if a systemic treatment is needed. You need and deserve to receive the best oncological care and treatment recommendations possible from an experienced sarcoma, and preferably ASPS, specialist. Take care, stay strong, and be very pro-active and aggressive in demanding complete information and answers to any questions that you may have. These are extremely important decisions and this is your Life they are dealing with!
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Hi from Anders, and a bit about me.
Lungs
My fear is, that since my onkologist has only send 3 people to see rolle so far, and i know by fact, that they se new mets with all of us after only a few months, they may lack the experience in reading the scans correctly. I will aquire the scans and have them send them to Rolle to get his view. A woman i talk to didnt even get to go there for second surgery. So new mets already within 5 weeks... im just wondering here!
Olga you knowlegde of these things is priceless.
Liver/Bone
I will demand a MR of my liver/bones and bone scans to make sure this is what they think it is.
Thank you all for this info and advice. Trying to clear my head and approcah this the right way!
My fear is, that since my onkologist has only send 3 people to see rolle so far, and i know by fact, that they se new mets with all of us after only a few months, they may lack the experience in reading the scans correctly. I will aquire the scans and have them send them to Rolle to get his view. A woman i talk to didnt even get to go there for second surgery. So new mets already within 5 weeks... im just wondering here!
Olga you knowlegde of these things is priceless.
Liver/Bone
I will demand a MR of my liver/bones and bone scans to make sure this is what they think it is.
Thank you all for this info and advice. Trying to clear my head and approcah this the right way!
Re: Hi from Anders, and a bit about me.
You can ask your radiologists to call Coswig radiologists and have a chat with them regarding post-operative scan reading. It is quite different with ablations, and laser surgery (which is basically many ablations via a thoracotomy). You would expect to see new nodules which are actually tiny ablated nodules previously not visible on the scans. My opinion: for now - do not worry about the lungs. Take care of the other stuff first, but of course keep an eye on the lungs.Anders wrote:Lungs
My fear is, that since my onkologist has only send 3 people to see rolle so far, and i know by fact, that they se new mets with all of us after only a few months, they may lack the experience in reading the scans correctly. I will aquire the scans and have them send them to Rolle to get his view. A woman i talk to didnt even get to go there for second surgery. So new mets already within 5 weeks... im just wondering here!
Olga you knowlegde of these things is priceless.
Liver/Bone
I will demand a MR of my liver/bones and bone scans to make sure this is what they think it is.
Thank you all for this info and advice. Trying to clear my head and approcah this the right way!
If the other woman is also an ASPS patient - there is probably no way her mets could have grown noticeably in 5 weeks. I think they are not taking into the account the type of procedure which has been performed.
I think the area that needs the most attention is the liver right now.
Re: Hi from Anders, and a bit about me.
Hi Guys
Have some news after a phone call to my onk.
Liver:
An MR is being ordered, but first my onk wants to make sure this will show us for sure. He isnt keen on an tissue sample due to bleeding and such. They actually have the same robot devise as Dr Vogl to do reginal chemo and RFA to the liver, but they wont use it if i have stuff other places in the body. So guess ill see Dr Vogl. My onk told me Vogl would probably take me, but wouldnt advice it for now.
Bones:
Im getting an complete body bone scan to clearify what the extend of the spread is. They are sure its spread, but cant say anything about sizes since its hard to messure in bones.
Lungs:
They have not asked rolle to view the pictures, but they are sure from what they see that its new mets. BUT my onk is sending my scans to rolle for his opinion.
Other systemnatic treatments than chemo:
My onk is open to other options, and i can be send to US, China or where ever there is a good program that could help me. he is aware of sutent and cediranib, but is convinced for now that chemo is the way to go. I think they try what works on most ( and they actually have some asps cases besides me), and later try out other stuff. Even experimental stuff they will send me to if it can make a difference, But his advice for now is, that i should try the chemo. He talked about surgery if i responded well, and since i responded well the first time, he thinks this is the way to go. He is open for anyhing, so if i find something usefull i should let him know. But he adviced me to be critical on what i find online, and ofc thats always something you should do.
So bottom line... Ill start chemo next week and see how it goes, im getting bone scan and hopefully that MR too, and it seems i have some things still i can try. Only thing here is, that they choose when to try what, but im happy they are open for what i have to say.
Have some news after a phone call to my onk.
Liver:
An MR is being ordered, but first my onk wants to make sure this will show us for sure. He isnt keen on an tissue sample due to bleeding and such. They actually have the same robot devise as Dr Vogl to do reginal chemo and RFA to the liver, but they wont use it if i have stuff other places in the body. So guess ill see Dr Vogl. My onk told me Vogl would probably take me, but wouldnt advice it for now.
Bones:
Im getting an complete body bone scan to clearify what the extend of the spread is. They are sure its spread, but cant say anything about sizes since its hard to messure in bones.
Lungs:
They have not asked rolle to view the pictures, but they are sure from what they see that its new mets. BUT my onk is sending my scans to rolle for his opinion.
Other systemnatic treatments than chemo:
My onk is open to other options, and i can be send to US, China or where ever there is a good program that could help me. he is aware of sutent and cediranib, but is convinced for now that chemo is the way to go. I think they try what works on most ( and they actually have some asps cases besides me), and later try out other stuff. Even experimental stuff they will send me to if it can make a difference, But his advice for now is, that i should try the chemo. He talked about surgery if i responded well, and since i responded well the first time, he thinks this is the way to go. He is open for anyhing, so if i find something usefull i should let him know. But he adviced me to be critical on what i find online, and ofc thats always something you should do.
So bottom line... Ill start chemo next week and see how it goes, im getting bone scan and hopefully that MR too, and it seems i have some things still i can try. Only thing here is, that they choose when to try what, but im happy they are open for what i have to say.
Re: Hi from Anders, and a bit about me.
How long are 2 cycles of chemo? Like I said, I am just worried about the passing of time for this. As far as embolization - yes I would have them contact Vogl ASAP just so you know if this option is available and so that it's READY as soon as it's needed. You want everything in place and ready to go.
Meanwhile, I would send your documents and get in touch with the NCI for that cediranib trial so that just in case you need it - it's ready to go and there is no delay. As a systemic treatment, I think this is the best choice for you. Also ask them how quickly they can obtain sutent locally if necessary - that's also a fairly good option to consider.
I think it's OK to try the chemo as long as you pursue the other options in parallel so that no time is wasted. ASPS is that kind of a disease: deceptively slow. You think you have time, but it's not always the case. Best results are obtained if treatment is administered early and aggressively. By doing this all at once you are keeping your options as open as possible, so that when the time comes to do something you can choose the best one.
Meanwhile, I would send your documents and get in touch with the NCI for that cediranib trial so that just in case you need it - it's ready to go and there is no delay. As a systemic treatment, I think this is the best choice for you. Also ask them how quickly they can obtain sutent locally if necessary - that's also a fairly good option to consider.
I think it's OK to try the chemo as long as you pursue the other options in parallel so that no time is wasted. ASPS is that kind of a disease: deceptively slow. You think you have time, but it's not always the case. Best results are obtained if treatment is administered early and aggressively. By doing this all at once you are keeping your options as open as possible, so that when the time comes to do something you can choose the best one.
Re: Hi from Anders, and a bit about me.
Hi ivan
yes as soon as i get that MRI ill make sure to send a disc to Vogl for his opinion.
We might have trials here in denmark too, but since the system works a little different, its not as open as in the US.
Two cycles of chemo takes 6 weeks.
yes as soon as i get that MRI ill make sure to send a disc to Vogl for his opinion.
We might have trials here in denmark too, but since the system works a little different, its not as open as in the US.
Two cycles of chemo takes 6 weeks.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Hi from Anders, and a bit about me.
Dear Anders,
Thank you for the additional information. I Hope that the Ifosfomide chemo is the right treatment choice for you, and my very best wishes are certainly with you for a very successful outcome to the treatment. Has your oncologist been able to provide you with any data which documents successful results of Ifosfomide treatment with other ASPS patients? Although I understand that you are planning to go forward with the Ifosfomide treatment next week, I agree with Ivan that with this notoriously chemo resistant and difficult to treat disease it is always best to have a plan B, so it would be wise to have at least begun the process of having another option in place in the event that the Ifosfomide is unfortunately not successful in shrinking your tumors and stabilizing your disease progression. I am glad that your oncologist is open to discussing/considering other options and willing to listen to your input which is very important. My special thoughts are with you for the best possible outcome of your bone scan, your liver MRI, Dr. Rolle's review of your chest scan, and your chemo treatment. In the meantime, take care Anders, stay strong, and keep in touch with the Board as you are able.
With special caring, healing wishes, and continued Hope,
Bonni
Thank you for the additional information. I Hope that the Ifosfomide chemo is the right treatment choice for you, and my very best wishes are certainly with you for a very successful outcome to the treatment. Has your oncologist been able to provide you with any data which documents successful results of Ifosfomide treatment with other ASPS patients? Although I understand that you are planning to go forward with the Ifosfomide treatment next week, I agree with Ivan that with this notoriously chemo resistant and difficult to treat disease it is always best to have a plan B, so it would be wise to have at least begun the process of having another option in place in the event that the Ifosfomide is unfortunately not successful in shrinking your tumors and stabilizing your disease progression. I am glad that your oncologist is open to discussing/considering other options and willing to listen to your input which is very important. My special thoughts are with you for the best possible outcome of your bone scan, your liver MRI, Dr. Rolle's review of your chest scan, and your chemo treatment. In the meantime, take care Anders, stay strong, and keep in touch with the Board as you are able.
With special caring, healing wishes, and continued Hope,
Bonni
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Fictional
Re: Hi from Anders, and a bit about me.
Hi Anders,
I'd like to share anything helpful and am certainly no expert, but it does seem the best right now is to go on some systemic treatment. Usually people won't irradiate particular sites until it becomes larger or symptomatic. You have a little time to think. If the lung ones are small, they may not be responsive to VEGF inhibitors yet anyway. I also think ifos won't work. We've had a number of people in the old forums try conventional chemo and that accelerates ASPS. It doesn't initially - it does when the counts return and recovering from chemo - the tumors get overvascularized and grow faster...that usually triggers more surgery if possible.
Our experience after Rolle's laser surgery is that at least in her case, the tumors were gone from CT in the first postop chest CT. We did see at least on 1-cm tumor that was missed by Rolle on each side - and those we assumed were in difficult places. Our daughter's post op scan was definitely not worse after the laser - most of the tumors were gone. There were some changes in the lung that were scars and different from the round mets that were there before. In fact, one roung met that we were surprised to see in the postop scan was the same one that 2 years later grew into the pulmonary vein - and maybe that was why he missed it...because it seemed as if it was connected to the pulmonary vein. I think Ivan's were smaller - so maybe he has pinpoint scars - but Rolle gave us a movie of our daughter's surgery - at least some were burned this way - and her chest CT usually does not show scars from where the old mets were - they're just gone. There was a really deep one - and that had a hole and scar afterward, but the majority just looks as if the nodule is no longer there. We did see some nodules appear after the Rolle surgery, but when we traced back to prior scans, they were always there, but probably too small to feel and take out. I just share this information - so you know what you have to weigh in deciding the next steps.
Long ago our daughter had been on Sutent - and we would consider it again as well as Cediranib at some point, but we have long had a priority of using a met inhibitor specifically because of the mechanism of action prohibits new metastasis. You can look up what met does and what VEGF (sutent, cediranib) does in basic biology papers. There is animal (not human) data that VEGF drugs could even increase new metastases.
I know I am in the minority here, but this forum may also not reflect the major population of ASPS either - sampling error - we have been on antiangiogenesis inhibitors as well as met, and now are preferring the met one, Crizotinib. 2 years ago we were on ARQ197 - which did not slow existing tumor growth, but did seem to stop any new metastases. (this was within one year of a large primary removed). Now our daughter has had a lung met piercing into the pulmonary vein - we are worried about more new mets, so very much trying to get back on PF 02341066 / Crizotinib if we can. We don't know how long that thing has been there. Because the pulmonary vein -removed tumor had 50% necrosis - and a recent post op chest CT now 3 weeks off the drug showed no rebound, I wanted to share the possibility of this drug for you to consider. Crizotinib is not as selective as ARQ197, but perhaps that is a good thing - it may have stronger efficacy. Feel free to PM or email me off list if you'd like to talk about our experiences. Also I just figured out how to use Google voice and we could talk by 'phone' if that's easier.
I'd like to share anything helpful and am certainly no expert, but it does seem the best right now is to go on some systemic treatment. Usually people won't irradiate particular sites until it becomes larger or symptomatic. You have a little time to think. If the lung ones are small, they may not be responsive to VEGF inhibitors yet anyway. I also think ifos won't work. We've had a number of people in the old forums try conventional chemo and that accelerates ASPS. It doesn't initially - it does when the counts return and recovering from chemo - the tumors get overvascularized and grow faster...that usually triggers more surgery if possible.
Our experience after Rolle's laser surgery is that at least in her case, the tumors were gone from CT in the first postop chest CT. We did see at least on 1-cm tumor that was missed by Rolle on each side - and those we assumed were in difficult places. Our daughter's post op scan was definitely not worse after the laser - most of the tumors were gone. There were some changes in the lung that were scars and different from the round mets that were there before. In fact, one roung met that we were surprised to see in the postop scan was the same one that 2 years later grew into the pulmonary vein - and maybe that was why he missed it...because it seemed as if it was connected to the pulmonary vein. I think Ivan's were smaller - so maybe he has pinpoint scars - but Rolle gave us a movie of our daughter's surgery - at least some were burned this way - and her chest CT usually does not show scars from where the old mets were - they're just gone. There was a really deep one - and that had a hole and scar afterward, but the majority just looks as if the nodule is no longer there. We did see some nodules appear after the Rolle surgery, but when we traced back to prior scans, they were always there, but probably too small to feel and take out. I just share this information - so you know what you have to weigh in deciding the next steps.
Long ago our daughter had been on Sutent - and we would consider it again as well as Cediranib at some point, but we have long had a priority of using a met inhibitor specifically because of the mechanism of action prohibits new metastasis. You can look up what met does and what VEGF (sutent, cediranib) does in basic biology papers. There is animal (not human) data that VEGF drugs could even increase new metastases.
I know I am in the minority here, but this forum may also not reflect the major population of ASPS either - sampling error - we have been on antiangiogenesis inhibitors as well as met, and now are preferring the met one, Crizotinib. 2 years ago we were on ARQ197 - which did not slow existing tumor growth, but did seem to stop any new metastases. (this was within one year of a large primary removed). Now our daughter has had a lung met piercing into the pulmonary vein - we are worried about more new mets, so very much trying to get back on PF 02341066 / Crizotinib if we can. We don't know how long that thing has been there. Because the pulmonary vein -removed tumor had 50% necrosis - and a recent post op chest CT now 3 weeks off the drug showed no rebound, I wanted to share the possibility of this drug for you to consider. Crizotinib is not as selective as ARQ197, but perhaps that is a good thing - it may have stronger efficacy. Feel free to PM or email me off list if you'd like to talk about our experiences. Also I just figured out how to use Google voice and we could talk by 'phone' if that's easier.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Hi from Anders, and a bit about me.
Dear 'F',
You have provided Anders with some very helpful information and insights, but I need to disagree with you once again about ARQ-197 preventing new metastasis, at least in our case and I think probably in Adam Beatty's case. After only a short time period on the ARQ-197, Brittany heartbreakingly experienced not only increased growth in the size of her lung mets, but also rapid disease progression with multiple disseminated new tumors throughout her body. Of course this could have been cooincidental to the nature of the disease, but the bottom line is that ARQ-197 was totally unsuccessful for Brittany, Adam, and Mario. The main point here is that unfortunately there doesn't seem to be any currently available systemic treatment which is successful for every ASPS patient, and response to treatment is a very individual thing which is what makes treatment decisions so very difficult. I also strongly disagree that tumor sites shouldn't be irradiated or treated until they become larger or symptomatic and that there is time to think about the treatment decision. By the time that Brittany's first two brain mets became symptomatic (morning headaches), they were too large to successfully respond to Gamma Knife radiation and after five months of going through post failed Gamma Knife Hell with brain swelling and high dose steroid treatment, the Gamma Knifed cerebral and parietal tumors ultimately had to be resected tragically costing Brittany her peripheral vision. Her spinal met not only didn't respond to the high dose radiation, the radiation seemed to make the tumor rapidly progress necessitating a very dangerous, extremely painful, and very debilitating second spinal surgery which has left her with severe chronic neck and spinal pain and weakness. I personally think that it would be best for Anders to have his bone mets treated as soon as possible, while they are still small enough to be ablated, and prior to systemic treatment. Radiofrequency Ablation has had proven success in destroying ASPS bone mets when they are small enough, at least in the case of Brittany's tibia met. I do agree with your feelings about the proposed Ifosfomide treatment probably not working based on the dismal results of most ASPS patients who have been treated with that chemo regimen, and the disease progression which they experienced post treatment probably because of the overvascularization of the tumors and the weakening of the immune system to be able to fight the disease. However, Anders body may respond to the treatment differently and more successfully so this is a personal decision which needs to be made by him, hopefully based on extensive personal research and study data provided by his oncologists documenting successful treatment outcomes for ASPS patients who have been treated with Ifosfomide.
With special caring thoughts and continued Hope,
Bonni
You have provided Anders with some very helpful information and insights, but I need to disagree with you once again about ARQ-197 preventing new metastasis, at least in our case and I think probably in Adam Beatty's case. After only a short time period on the ARQ-197, Brittany heartbreakingly experienced not only increased growth in the size of her lung mets, but also rapid disease progression with multiple disseminated new tumors throughout her body. Of course this could have been cooincidental to the nature of the disease, but the bottom line is that ARQ-197 was totally unsuccessful for Brittany, Adam, and Mario. The main point here is that unfortunately there doesn't seem to be any currently available systemic treatment which is successful for every ASPS patient, and response to treatment is a very individual thing which is what makes treatment decisions so very difficult. I also strongly disagree that tumor sites shouldn't be irradiated or treated until they become larger or symptomatic and that there is time to think about the treatment decision. By the time that Brittany's first two brain mets became symptomatic (morning headaches), they were too large to successfully respond to Gamma Knife radiation and after five months of going through post failed Gamma Knife Hell with brain swelling and high dose steroid treatment, the Gamma Knifed cerebral and parietal tumors ultimately had to be resected tragically costing Brittany her peripheral vision. Her spinal met not only didn't respond to the high dose radiation, the radiation seemed to make the tumor rapidly progress necessitating a very dangerous, extremely painful, and very debilitating second spinal surgery which has left her with severe chronic neck and spinal pain and weakness. I personally think that it would be best for Anders to have his bone mets treated as soon as possible, while they are still small enough to be ablated, and prior to systemic treatment. Radiofrequency Ablation has had proven success in destroying ASPS bone mets when they are small enough, at least in the case of Brittany's tibia met. I do agree with your feelings about the proposed Ifosfomide treatment probably not working based on the dismal results of most ASPS patients who have been treated with that chemo regimen, and the disease progression which they experienced post treatment probably because of the overvascularization of the tumors and the weakening of the immune system to be able to fight the disease. However, Anders body may respond to the treatment differently and more successfully so this is a personal decision which needs to be made by him, hopefully based on extensive personal research and study data provided by his oncologists documenting successful treatment outcomes for ASPS patients who have been treated with Ifosfomide.
With special caring thoughts and continued Hope,
Bonni
Re: Hi from Anders, and a bit about me.
Hello Anders
*HUG*
I have read what the others are posting and for me it would be really hard to make a choice on what to do.
It is one of the main problems with this diagnosis that much is guessing and i hate that part so much!
I am not clear why your onc wants to do a chemo on you that may just mess your immune system up. Please, ask all the questuions that everyone that knows alot more then I do are asking and question every step that they want to take in your treatment. I am very happy to hear they are open to sending you to the USA for the Ced trial and i would really look into that before you start the other next week.
I had ASPS in my rib and there are options for bones other then chemo... I know others have posted this too you and i would like to see the extent of bone that is now involved and see what they say ...
You are in my thoughts and prayers!
*HUG*
I have read what the others are posting and for me it would be really hard to make a choice on what to do.
It is one of the main problems with this diagnosis that much is guessing and i hate that part so much!
I am not clear why your onc wants to do a chemo on you that may just mess your immune system up. Please, ask all the questuions that everyone that knows alot more then I do are asking and question every step that they want to take in your treatment. I am very happy to hear they are open to sending you to the USA for the Ced trial and i would really look into that before you start the other next week.
I had ASPS in my rib and there are options for bones other then chemo... I know others have posted this too you and i would like to see the extent of bone that is now involved and see what they say ...
You are in my thoughts and prayers!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Anders from Denmark - Dx 2007
Friends, I spoke with Anders through Facebook 2 weeks ago after my cryo to let him know I was doing great. The last message he sent me two weeks ago was -
Sadly, my message will remain unanswered forever.
To which I responded a few days after. Next, I stopped by his Facebook page on May 1 to wish Anders a happy birthday. I saw a lot of posts on his wall, and I reasonably assumed that they were birthday greetings in Danish.[b]Anders[/b] wrote:Recovering from a broken thigh. Still holding on against a rather aggressive version of ASPS. How about you?
Sadly, my message will remain unanswered forever.
Translated from Danish - http://translate.google.com/translate?js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&sl=da&tl=en&u=http%3A%2F%2Fwww.metalzone.dk%2Findex.php%3Fside%3Dexpandnews%26id%3D6656&act=url wrote:
Obituary: A great personality has passed away
It is with a big lump in my throat that I am writing this. A few days ago our webmaster, Anders Giebel. Metalzone.dk started in 2003. The following year, Anders jumped in as a webmaster. He created the foundation for Metalzone.dk and had it not been for him, had not existed since today. Anders has always been innovative. Metalzone.dk owe him everything. Anders has always been well liked and a model for other people. Though he has battled cancer for several years, he has never wanted to bother other people with his pain. Rather, he has always had a surplus to help. He was a good man who could always bring a smile at the people who were around him.
It is with great sadness that we say goodbye to a good friend and a great personality. We will miss you. Our thoughts are with your family. Rest in peace, Anders.
On behalf of the editors of Metalzone.dk. Anders Giebel would have turned 31 years today (May 1 2011).
What a great guy - always upbeat, and with a healthy measure of mischief. Anders lost his battle with ASPS after 4 years on April 28, 2011 but I know that he never gave up until the very end. I take this loss very personally, and I hope that our work here has helped Anders live even a little bit longer. I only wish he had a chance to try Cediranib.Anders having fun for his profile picture -
Anders with his wife to be Anna (engaged) -
Anders with his sister and parents -
Anders with his older daughter -
Anders' youngest daughter will never get to know him -
Re: Anders Giebel from Denmark - Dx 2007 - RIP 28/04/2011
Wow! My heart is broken the world has lost a great person :*(
It wa so agressive.. i wonder if it was clear cell and not ASPS :/ Doesnt Clear Cell move alot faster and look almosy exact to ASPS?
It wa so agressive.. i wonder if it was clear cell and not ASPS :/ Doesnt Clear Cell move alot faster and look almosy exact to ASPS?
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Anders Giebel from Denmark - Dx 2007 - RIP 28/04/2011
Pretty sure it was confirmed ASPS many times.Amanda wrote:Wow! My heart is broken the world has lost a great person :*(
It wa so agressive.. i wonder if it was clear cell and not ASPS :/ Doesnt Clear Cell move alot faster and look almosy exact to ASPS?
I don't know for sure, but I think what probably killed him was the liver met. It didn't grow that quickly - it was just detected too late to be treated effectively. The radiologists definitely screwed up. Had they detected it a year earlier it could have been ablated.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Anders Giebel from Denmark - Dx 2007 - RIP 28/04/2011
I am so deeply shocked and profoundly saddened to read the devastating news of dear Anders sudden and tragic loss, but am appreciative of your sharing it with our Board Ivan. Even though Anders had not updated the Board since October, I was Hopeful that no news was good news, and that he was doing alright. There are many questions raised by the seemingly very rapid and aggressive progression of his disease, including for me what the effect and results were of the high dose Ifosfamide chemo treatment (which several of us on this Board had questioned and expressed our concerns regarding the advisability of this treatment for him) that he was scheduled to begin at the time of his last Board entry, and whether or not he was able to receive any kind of treatment for his liver mets and bone mets. My heart breaks for Anders' dear fiancee' Anna, his two precious young daughters, his parents and family, his many friends, and all of us in the ASPS Community who have now tragically lost another special member of our ASPS family.
With immense anger at this insidious disease, and a heart heavy with deepest sorrow,
Bonni
With immense anger at this insidious disease, and a heart heavy with deepest sorrow,
Bonni