Sorry to hear your problems during the ablation. It is really important to have the mets ablated at a smaller size possible and not to wait till they are more than 20 mm. My guess is that this bigger met was located close or in direct contact with the intercoastal nerve.
I think that you are confusing the Gamma Knife with the Cyber Knife - the Gamma Knife modality is used for the head only and the CyberKnife and other radiosurgical techniques (stereotactic radiosurgery) like Novalis etc. are used for the lungs and other body locations.
The problem with the radiosurgery for the lung mets is a danger of the radiation pneumonitis that sometimes develops as a consequence after that treatment and I would reserve the stereotactic radiosurgery for the locations when the probe ablation is not feasible or not advisable because in general cryo is a low pain treatment.
George From China - Dx 2007
Re: George From China - Dx 2007
Hi Olga,
I knew this would surprise you and other friends in this community. But yes, we had Gamma Knife on the lung mets. The story of choosing Gamma Knife is long. To be brief, the Gama Knife worked on one of our old ASPS friend--lung mets size reduction. So George followed her way, expecting same success like her. Another reason was Cryoablation has really high risk to stab in the stomach as to the Cryo doctor.
The good news is George is so far so good, recovering from the pain of Cryo (Looks like the last Cryo is too severe this time that Geroge still feels the pain in the lung after about 2 months.). And same as his first Cryo, he's suffering the ache of his belly skin due to nerve broken on his back when ablation. It's not big deal, but it will last for several months until the nerves grow back.
We're taking Cytokine Induced Killer cell immunity treatment, in the first course. We don't expect this can work with the mets, we just hope George can benefit in getting back his immunity--he's much weaker suffering the brain swelling and the pain of Cryo.
I didn't see any of our friends in this community mention the cell immunity treatment. Is it too out of date? Maybe, Doctors always play something that is out of date in China
I knew this would surprise you and other friends in this community. But yes, we had Gamma Knife on the lung mets. The story of choosing Gamma Knife is long. To be brief, the Gama Knife worked on one of our old ASPS friend--lung mets size reduction. So George followed her way, expecting same success like her. Another reason was Cryoablation has really high risk to stab in the stomach as to the Cryo doctor.
The good news is George is so far so good, recovering from the pain of Cryo (Looks like the last Cryo is too severe this time that Geroge still feels the pain in the lung after about 2 months.). And same as his first Cryo, he's suffering the ache of his belly skin due to nerve broken on his back when ablation. It's not big deal, but it will last for several months until the nerves grow back.
We're taking Cytokine Induced Killer cell immunity treatment, in the first course. We don't expect this can work with the mets, we just hope George can benefit in getting back his immunity--he's much weaker suffering the brain swelling and the pain of Cryo.
I didn't see any of our friends in this community mention the cell immunity treatment. Is it too out of date? Maybe, Doctors always play something that is out of date in China
Re: George From China - Dx 2007
Re. Cytokine Induced Killer cell immunity treatment - what is it exactly? Is it Interferon-Alfa or something else?
Olga
Re: George From China - Dx 2007
It's some kind of biotherapy. It's very effective in melanoma. It's usually used on melanoma, or cancer of the liver after surgery or percutaneous coronary intervention.
it's also used after chemo, helping patient recover from the weakness by the toxicity of the chemo.
The procedure of the treatment is to withdraw about 200ml blood from the patient, cultivated outside the body to obtain a certain amount of anti-cancer NK-T lymphocyte.
I'm trying my best to explain to you, but I can't translate it to English very well because there are many medical technical term that i don't understand well.
Hope this can help you to understand...
it's also used after chemo, helping patient recover from the weakness by the toxicity of the chemo.
The procedure of the treatment is to withdraw about 200ml blood from the patient, cultivated outside the body to obtain a certain amount of anti-cancer NK-T lymphocyte.
I'm trying my best to explain to you, but I can't translate it to English very well because there are many medical technical term that i don't understand well.
Hope this can help you to understand...
Re: George From China - Dx 2007
Hello, everyone.
It has been sometime since my last update. So much has gone on.
George had a routine CT scan on the lung and Brain MRI in end of Feb. The CT scan on the lung shows it's kind of stable, at least no much progress--3~5mm growth on the bigger mets and 2 small new ones comparing to 3 months ago.
However the brain was not so lucky as the lung. The MRI showed there are 2 new mets (6mm & 4mm) in the brain. Considering George just had the Gama Knife half a year ago, we don't know if he can have another one now, we went to a bigger hospital in Guangzhou to see if they can do it now. The Doctor said no problem and the side effet will be much less since the size is much smaller. So we did the Gama Knife just a few days later--George is doing pretty good this time, no obvious discomfort felt so far.
We were so panic at that time, don't know how bad it was. I also put George on the bone scan (ECT) the immediately. Thank god, it's clear. However we decided to try system treatment right away, like Cediranib. At the meantime, I send the CT scans to Prof. Rolle to see if he can still surgery on Geroge--the last CT shows at least one of the mets treated with Cryoablation one and a half year ago started to grow...
Prof. Rolle was away, returning on end of last weekend (as told by his secretary). We didn't get the reply from him today. Waiting worrying...
It has been sometime since my last update. So much has gone on.
George had a routine CT scan on the lung and Brain MRI in end of Feb. The CT scan on the lung shows it's kind of stable, at least no much progress--3~5mm growth on the bigger mets and 2 small new ones comparing to 3 months ago.
However the brain was not so lucky as the lung. The MRI showed there are 2 new mets (6mm & 4mm) in the brain. Considering George just had the Gama Knife half a year ago, we don't know if he can have another one now, we went to a bigger hospital in Guangzhou to see if they can do it now. The Doctor said no problem and the side effet will be much less since the size is much smaller. So we did the Gama Knife just a few days later--George is doing pretty good this time, no obvious discomfort felt so far.
We were so panic at that time, don't know how bad it was. I also put George on the bone scan (ECT) the immediately. Thank god, it's clear. However we decided to try system treatment right away, like Cediranib. At the meantime, I send the CT scans to Prof. Rolle to see if he can still surgery on Geroge--the last CT shows at least one of the mets treated with Cryoablation one and a half year ago started to grow...
Prof. Rolle was away, returning on end of last weekend (as told by his secretary). We didn't get the reply from him today. Waiting worrying...
Re: George From China - Dx 2007
I also want to ask for your opinions. Frankly, I'm not sure if the laser assisted surgery is a wise option now.
My mainly concern is WHEN Prof. Rolle can schedule the surgery if he accepts George for the surgery. As I know, it is usually scheduled quite a while (like 1 or 2 months) later after the appoinment made. Do you think if we can wait that long considering the current situation (New mets in the brain is the most scary thing)?
But if we start to try TKI right away, do you think we can stop it to do the laser surgery one or 2 months later? As I read in Cediranib board, the rebond is obvious for some patients quiting it.
Thank you so much for reading and any of the comments are really welcome.
Best wishes to all!
My mainly concern is WHEN Prof. Rolle can schedule the surgery if he accepts George for the surgery. As I know, it is usually scheduled quite a while (like 1 or 2 months) later after the appoinment made. Do you think if we can wait that long considering the current situation (New mets in the brain is the most scary thing)?
But if we start to try TKI right away, do you think we can stop it to do the laser surgery one or 2 months later? As I read in Cediranib board, the rebond is obvious for some patients quiting it.
Thank you so much for reading and any of the comments are really welcome.
Best wishes to all!
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: George From China - Dx 2007
Dear Jorge,
Thank you for your thoughtful update. I am so very sorry that George is having disease progression with some increased growth in the size of of his lung mets and new lung and brain mets. I am grateful that he was able to have the two new brain mets Gamma Knifed at a relatively small size which should provide a better chance of a successful outcome to the procedure as well as less post Gamma Knife brain swelling and fewer other side effects. Brittany's second and third Gamma Knife procedures for her much smaller brain mets were much more successful and had far fewer side effects than her first unsuccessful Gamma Knife for her large parietal and cerebellum brain mets which were each over three centimeters.
Unfortunately, Dr. Rolle may be unwilling to laser resect George's lung mets now since he usually will not operate on patients who have mets in other areas of their bodies. However, if George currently has no other mets than his lung mets having now had his brain mets Gamma Knifed, Dr. Rolle may consider accepting him for the laser procedure. Hopefully you will receive a response from him very soon so that you can make and pursue the best treatment decision as soon as possible.
Based on the relatively rapid progression of George's disease and his continued development of new brain mets, I personally think that prevention of any new brain mets needs to be the highest priority. Pursuing a TKI systemic treatment like Cediranib that can cross the blood brain barriar might be the best treatment option at this time to try to stabilize the disease progression and prevent the development of any new brain mets. Since Cediranib is only currently available through Clinical Trial enrollment, the protocol would most likely not allow George to discontinue the drug for a laser resection of his lung mets, but Hopefully the Cediranib would be very successful in shrinking/destroying his multiple lung mets as it has been for Brittany, and laser resection would not be necessary. Whatever systemic treatment you decide to pursue, it is essential that it be able to cross the blood brain barriar to prevent/destroy new brain mets now that George has had brain mets as there are most likely microscopic brain mets which will continue to grow if they are not prevented from doing so by an effective systemic treatment. There are very few currently available systemic treatments that can cross the blood brain barriar so it will be important to find one that can. I am not familiar enough with Pazopanib to know if it can cross the blood brain barriar so this is something which you will need to explore and discuss with the oncologist if you are unable to access Cediranib and need to find a different systemic treatment option.
Please know that my very best wishes and most caring thoughts are with George and you. Take care Jorge and keep the Board updated on whatever treatment decision is made.
With deepest caring, healing wishes for George, and continued Hope,
Bonni
Thank you for your thoughtful update. I am so very sorry that George is having disease progression with some increased growth in the size of of his lung mets and new lung and brain mets. I am grateful that he was able to have the two new brain mets Gamma Knifed at a relatively small size which should provide a better chance of a successful outcome to the procedure as well as less post Gamma Knife brain swelling and fewer other side effects. Brittany's second and third Gamma Knife procedures for her much smaller brain mets were much more successful and had far fewer side effects than her first unsuccessful Gamma Knife for her large parietal and cerebellum brain mets which were each over three centimeters.
Unfortunately, Dr. Rolle may be unwilling to laser resect George's lung mets now since he usually will not operate on patients who have mets in other areas of their bodies. However, if George currently has no other mets than his lung mets having now had his brain mets Gamma Knifed, Dr. Rolle may consider accepting him for the laser procedure. Hopefully you will receive a response from him very soon so that you can make and pursue the best treatment decision as soon as possible.
Based on the relatively rapid progression of George's disease and his continued development of new brain mets, I personally think that prevention of any new brain mets needs to be the highest priority. Pursuing a TKI systemic treatment like Cediranib that can cross the blood brain barriar might be the best treatment option at this time to try to stabilize the disease progression and prevent the development of any new brain mets. Since Cediranib is only currently available through Clinical Trial enrollment, the protocol would most likely not allow George to discontinue the drug for a laser resection of his lung mets, but Hopefully the Cediranib would be very successful in shrinking/destroying his multiple lung mets as it has been for Brittany, and laser resection would not be necessary. Whatever systemic treatment you decide to pursue, it is essential that it be able to cross the blood brain barriar to prevent/destroy new brain mets now that George has had brain mets as there are most likely microscopic brain mets which will continue to grow if they are not prevented from doing so by an effective systemic treatment. There are very few currently available systemic treatments that can cross the blood brain barriar so it will be important to find one that can. I am not familiar enough with Pazopanib to know if it can cross the blood brain barriar so this is something which you will need to explore and discuss with the oncologist if you are unable to access Cediranib and need to find a different systemic treatment option.
Please know that my very best wishes and most caring thoughts are with George and you. Take care Jorge and keep the Board updated on whatever treatment decision is made.
With deepest caring, healing wishes for George, and continued Hope,
Bonni
Re: George From China - Dx 2007
Dear Bonni,
I'm so glad you're back to the forum to provide your invaluable help.
We're highly agree with you about taking the system treatment--TKI. Actually, we're prepared and just about to take it, but we have some concerns as I posted yesterday.
I was thinking it these days, and now I think I'm clear. George should start the TKI right away, just these days. I will ask Prof. Rolle if he can give a feedback today. If he won't accept George for the laser assisted surgery, George will have Cryoablation on another big met in this weekend and then take TKI when he recovers in certain extent in about 3 days later. If Dr. Rolle accept to offer the surgery, Geroge will take TKI immediately and stop it during the surgery. As I said, I know the surgery is always scheduled in quite some time later, at least 1 months later.
Thanks again for your kind and careful advice. Best wishes to you and your family, expecially Brittany.
I'm so glad you're back to the forum to provide your invaluable help.
We're highly agree with you about taking the system treatment--TKI. Actually, we're prepared and just about to take it, but we have some concerns as I posted yesterday.
I was thinking it these days, and now I think I'm clear. George should start the TKI right away, just these days. I will ask Prof. Rolle if he can give a feedback today. If he won't accept George for the laser assisted surgery, George will have Cryoablation on another big met in this weekend and then take TKI when he recovers in certain extent in about 3 days later. If Dr. Rolle accept to offer the surgery, Geroge will take TKI immediately and stop it during the surgery. As I said, I know the surgery is always scheduled in quite some time later, at least 1 months later.
Thanks again for your kind and careful advice. Best wishes to you and your family, expecially Brittany.
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: George From China - Dx 2007
Hello again Jorge,
Thank you for the thoughtful additional updated information. I Hope that you have now received a response and decision from Dr. Rolle so that you can move forward with George's treatment plans as soon as possible. I think that the plan to have George's large lung met Cryoablated this weekend and prior to beginning TKI treatment is a very good one in order to help reduce his body's tumor burden and enable the TKI to be more effective. What type of TKI will George be taking? If it is a TKI such as Pazopanib which is available by prescription from the doctor, and not a Clinical Trial TKI like Cediranib, then George should be able to discontinue taking it for a period of time pre and post surgery to alleviate the risk of hemorrhage associated with TKI's. However, as I said in my previous post, Cediranib Clinical Trial protocol would most likely not allow him to discontinue the Cediranib for surgery and then resume taking it so this is important for you to know if you are planning for George to undergo laser surgery with Dr. Rolle after beginning TKI treatment.
I am sending my most positive thoughts and very best wishes for a very successful outcome to George's Cryoablation procedure this weekend, and will be anxiously awaiting your next update.
With special caring thoughts, healing wishes for George, and continued Hope,
Bonni
Thank you for the thoughtful additional updated information. I Hope that you have now received a response and decision from Dr. Rolle so that you can move forward with George's treatment plans as soon as possible. I think that the plan to have George's large lung met Cryoablated this weekend and prior to beginning TKI treatment is a very good one in order to help reduce his body's tumor burden and enable the TKI to be more effective. What type of TKI will George be taking? If it is a TKI such as Pazopanib which is available by prescription from the doctor, and not a Clinical Trial TKI like Cediranib, then George should be able to discontinue taking it for a period of time pre and post surgery to alleviate the risk of hemorrhage associated with TKI's. However, as I said in my previous post, Cediranib Clinical Trial protocol would most likely not allow him to discontinue the Cediranib for surgery and then resume taking it so this is important for you to know if you are planning for George to undergo laser surgery with Dr. Rolle after beginning TKI treatment.
I am sending my most positive thoughts and very best wishes for a very successful outcome to George's Cryoablation procedure this weekend, and will be anxiously awaiting your next update.
With special caring thoughts, healing wishes for George, and continued Hope,
Bonni
Re: George From China - Dx 2007
Hello, everyone.
It has been a while and I have some good news to update.
After taking about 50 days of the TKI, all of the mets in the lung shrinked from 2~5mm in one latitude. Prof. Roll agreed to give George a try considering the qty of the lungt mets are limited after over 6 years. The surgery is very sucessful (14 mets were completely resected) and the recovery is surprisingly fast and well. We were discharged from the hospital 11 days after the surgery and fly back home 2 weeks after the surgery.
However, there is some inflammation which caused George to cough after checking out of the hospital, but we didn't realize it until it got worse when we got home. After taking Moxifloxacin for 6 days, it's much better--no cough now. But a small section (1.5cm) of the surgical insision doesn't grow well. It's still not healing yet. We're worry, will go to the doctor here tomorrow to see if a debridement is needed.
Thank you to everyone on this forum. Without your generous sharing of the experience, we can't find all the great approaches.
Best wishes!
Lynette
It has been a while and I have some good news to update.
After taking about 50 days of the TKI, all of the mets in the lung shrinked from 2~5mm in one latitude. Prof. Roll agreed to give George a try considering the qty of the lungt mets are limited after over 6 years. The surgery is very sucessful (14 mets were completely resected) and the recovery is surprisingly fast and well. We were discharged from the hospital 11 days after the surgery and fly back home 2 weeks after the surgery.
However, there is some inflammation which caused George to cough after checking out of the hospital, but we didn't realize it until it got worse when we got home. After taking Moxifloxacin for 6 days, it's much better--no cough now. But a small section (1.5cm) of the surgical insision doesn't grow well. It's still not healing yet. We're worry, will go to the doctor here tomorrow to see if a debridement is needed.
Thank you to everyone on this forum. Without your generous sharing of the experience, we can't find all the great approaches.
Best wishes!
Lynette
Re: George From China - Dx 2007
Hi, I am glad that the trip for the surgery and the surgery in Germany itself went fine. Was it difficult for you language barrier wise? Would you be willing to share your experience with the surgery in the designated forum here:
http://www.cureasps.org/forum/viewforum.php?f=51
I am wondering if the reduced healing ability and the local inflammation of the scar might be connected to a recent TKI drug that Jorge had - what was the drug specifically?
http://www.cureasps.org/forum/viewforum.php?f=51
I am wondering if the reduced healing ability and the local inflammation of the scar might be connected to a recent TKI drug that Jorge had - what was the drug specifically?
Olga
Re: George From China - Dx 2007
Lynette, congratulations on using the TKI's in an optimal way to make the resection successful! How big were the metastases finally removed? You did one lung, and you are planning to do the other lung in the future?
So what you are saying is that there is small part of the incision that got infected, or is simply not healing?
So what you are saying is that there is small part of the incision that got infected, or is simply not healing?
Re: George From China - Dx 2007
Hi Olga,
We can speak English (although not so good), so the language doesn't affect our communication with the Doctors. As you guys have pointed it out in your experience shared, some elder nurse or staff can't speak English--that's a problem but not important.
One doctor said the local incision is not healing well because of the fat. It's under arm and the fat is kinda thick. There are no vessels in the fat so there is no nutrition to support the healing.
Hi Ivan,
Prof. Rolle mentioned you for the world's record of 270 mets removed! And the good recovery of the lung after all the 4 surgery!
Thank you so much for your day to day description post, gave us many useful info and confidence to have the surgery.
Total 15 mets were removed, with the diameters from 5mm~38mm. We will go there for the other side in Sept if there are no accidents. The small part of the incision has not healed well from the beginning. The doctor and nurse in Coswig just told us it's not a big issue and it will heal finally. The nurse gave us some tape before we leave. We just didn't expect it will take such a long time to heal. Looks like it's start to heal soon, like another week.
I'm sorry to hear about your ankle. Hope you can find a proper conservative treatment for it and go back to all the sports you love.
We can speak English (although not so good), so the language doesn't affect our communication with the Doctors. As you guys have pointed it out in your experience shared, some elder nurse or staff can't speak English--that's a problem but not important.
One doctor said the local incision is not healing well because of the fat. It's under arm and the fat is kinda thick. There are no vessels in the fat so there is no nutrition to support the healing.
Hi Ivan,
Prof. Rolle mentioned you for the world's record of 270 mets removed! And the good recovery of the lung after all the 4 surgery!
Thank you so much for your day to day description post, gave us many useful info and confidence to have the surgery.
Total 15 mets were removed, with the diameters from 5mm~38mm. We will go there for the other side in Sept if there are no accidents. The small part of the incision has not healed well from the beginning. The doctor and nurse in Coswig just told us it's not a big issue and it will heal finally. The nurse gave us some tape before we leave. We just didn't expect it will take such a long time to heal. Looks like it's start to heal soon, like another week.
I'm sorry to hear about your ankle. Hope you can find a proper conservative treatment for it and go back to all the sports you love.
Re: George From China - Dx 2007
Lynette and Jorge
My name is Debbie and Josh is my son
Josh and his wife came back from Germany in January after the removal of over 70 tumors/mets
This laser surgery was a lot easier on Josh compared to his biopsie in September of 2012
I believe that the procedure to control his pain with the epideral played a big role in the pain reduction
Unfortunely there still is an old medical mindset of no pain no gain so pain meds are used minimally
We are so glad that Jorge is back less 15 mets. Joshua's wife and I were ecstatic when the biopsie removed 3 mets before laser . : )
Hope this letter finds Jorge even more healed
Oh. For my question. Was dr Rolle able to give you feed back on whether the TKI showed any effect on the removed mets ?
And what TKI did Jorge take for 50? days?
Thanks so much
Very nice to meet you both
Sincerely
Debbie
My name is Debbie and Josh is my son
Josh and his wife came back from Germany in January after the removal of over 70 tumors/mets
This laser surgery was a lot easier on Josh compared to his biopsie in September of 2012
I believe that the procedure to control his pain with the epideral played a big role in the pain reduction
Unfortunely there still is an old medical mindset of no pain no gain so pain meds are used minimally
We are so glad that Jorge is back less 15 mets. Joshua's wife and I were ecstatic when the biopsie removed 3 mets before laser . : )
Hope this letter finds Jorge even more healed
Oh. For my question. Was dr Rolle able to give you feed back on whether the TKI showed any effect on the removed mets ?
And what TKI did Jorge take for 50? days?
Thanks so much
Very nice to meet you both
Sincerely
Debbie
Debbie
Re: George From China - Dx 2007
Hi Debbie,
I'm sorry about Josh's pain. Does the pain from the lung or the surgery incision? Does Prof. Rolle say if the pain will disappear gradually as time goes by? George also suffered to a sustanable pain after his second and third Cryoablation due to the nurve injurge during the freezing. Fortunately, the pain went away little by little when the nerves grew back.
For now, George only feels slightly pain (pain number ~3) when he coughs. Givin it's less than 4 weeks after the surgery, we think it's normal in the recovery and believe it will go away soon.
We're taking some clinical tral (stage I) TKI which is very similar to Sutant developed here, but I don't know the English name of it, there is only a number. I will look it up and let you know later. The pathology report translated by Prof. Rolle says "A mean of 8 mitosis were observed. 80% of the metastases showed vital cells of ASPS, 20% showed regression like necrosis, fibrosis or cystic areas." But I'm not sure if the conclusion is drawn based on each mets. From the German pathology report, I can't see that. I need to do more study to find it out...
Healing wishes to Josh. Hope the pain will go away soon.
Best wishes to your family!
Lynette
I'm sorry about Josh's pain. Does the pain from the lung or the surgery incision? Does Prof. Rolle say if the pain will disappear gradually as time goes by? George also suffered to a sustanable pain after his second and third Cryoablation due to the nurve injurge during the freezing. Fortunately, the pain went away little by little when the nerves grew back.
For now, George only feels slightly pain (pain number ~3) when he coughs. Givin it's less than 4 weeks after the surgery, we think it's normal in the recovery and believe it will go away soon.
We're taking some clinical tral (stage I) TKI which is very similar to Sutant developed here, but I don't know the English name of it, there is only a number. I will look it up and let you know later. The pathology report translated by Prof. Rolle says "A mean of 8 mitosis were observed. 80% of the metastases showed vital cells of ASPS, 20% showed regression like necrosis, fibrosis or cystic areas." But I'm not sure if the conclusion is drawn based on each mets. From the German pathology report, I can't see that. I need to do more study to find it out...
Healing wishes to Josh. Hope the pain will go away soon.
Best wishes to your family!
Lynette