Hello there, my name is Lynette from China. I'm so glad to find this forum and so many kind friends here.
First of all, apologize for my poor and plain English.
I'm posting for my husband George, who is 33 years old now. George was diagnosed in Mar 2007. He had a lump on his right crus—about 7*8cm. We didn’t know it’s so bad until it was resection.
Here is a summary of the treatment he had:
2007 April Radiotherapy (on the surgical incision )
2009 Jan chemotherapy (2 rounds)
2009 Apr I_125 active particles implantation
2009 May biotherapy--CIK
2011 Dec Cryoablation
2012 Apr Cryoablation
The progress of the diseas is very similar as most of the other patients here. 4 month after the surgical resection, metastatics were found on his lung--luckly the tumor didn't go to other place other than the lung. Following the doctror's suggestion - surveillance, the metastatics kept growing slowly to now the biggest one 3cm. During the period, we have tried chemo, I_125 implantation and twice of cryoablation.
But in the MRI in end of Sept, we find the tumor goes to the brain--I don't know if it's because something went wrong with the last treatment (the last cryoablation went on for about 4 hours, and George had hemoptysis during and after the ablation) or it's about time...
There are 2 metastatics in the brain, about 2*2cm (the metastatics in the brain grows much faster, the last brain MRI George had 6 months ago didn't find anything in the brain). The doctor suggest to do Gama Knife asap becuase the metastatic in the brain usually grows fast, we take the opinion and have the Gama Knife on the brain several days after the MRI.
And now, we don't know what to do next. I feel exhausted, confused, lost...
Lynette, hi, welcome to our forum.
We have other Chinese patients and their family members here, and besides your English is OK, do not worry about it.
Unfortunately the clinical history of your husband does sound typical, the brain mets often follow the lung mets after awhile, it is unlikely the cryo for the bigger lung met has any influence here. It is very important for the patients with the known history of the lung mets to have their brain MRI periodically, at least once a year. Some of our patients have had their brain mets treated with the Gamma Knife with the great success - i.e. their treated mets appears to be completely killed by this radiosurgery and keep shrinking as the time goes. For the brain, you should just continue to monitor it.
What is the lung mets situation now, are they multiple?
Thank you every one for reading my long and boring posts. It will be highly appreciated if someone can give some opinions here.
What we can think of now is to deal with the mets in his lung from big to small (the 2 biggest ones are about 3cm). There are 3 ways we can think of and are provided here in China--Cyroablation, Cyber Knife and I_125 active particles plantation. Here are the concerns I have about all these ablation methods that i don't know which way to go.
Cyroablation: I read some of the stories in this website, Ivan and some one else have done this. George himself also have done this for twice. But we can't tell if it works through CT scan after 3 month or even 10 month. From the CT scan, we can't tell from size there are much change to the mets that had cyroablation 10 month ago. I don't know if it's because we are not doing the correct inspection--we do normal CT scan, maybe an enhanced (with contrast medium injection) CT is required? Anyone can you please share your experience?
I_125 active particles plantation: I didn't see this treatment in this forum. The theory is to plantation theI_125 particles with radioactivity into the mets by a probe a little smaller than the one using for Cyroablation. The particles will stay in the mets and radioates continously with half-life of 60 days. Geroge had this treatment in 2009, and it looked very effective. The biggest met (~2cm) at that time shrinked to nothing in the CT scans 3 month and 6 month later.
But it's said this radioactive treatment will cause radiation pneumonia which is more tough than ASAP, although there are so many hospital in China is carrying out this treatment. With suspetion to the Chinese goverment's surveillance, I think there may be some reasons that this treatment is not carryied out in US?
Cyber Knife: This is new and just taken into our consideration. And we don't know much about it. Don't know if it works for ASAP?
Thank you so much for reading again. We're hesitating about the next treatment, Any inputs is welcome.
Thanks so much for your quick and kind reply, Olga. Say hi to Ivan for me and George. He's such a brave fighter to ASPS and an encouraging modle for George.
It's so glad and released to know other ASPS patients have great success from Gama knife. That's another one of our concerns on the brian mets, as George had Gama knife 2 month ago, but the shrinkage is only 3mm.
The sequalae of the Gama knife is very serious for George. There is large area of odema around the 2 mets that cause serious headache, nausea and vomiting, as well as impaired vision. George just checked out from hospital after about 2 month's unti-odema treatment. Everyone can take this as an warning to have your brain MRI check schedule periodically.
Brain metastatics is terrible, i'm afraid we need to have brain MRI check every 2 month now. I don't know if it's easier to have brain metastatics again once it starts?
Take good care, my friends and the families. We need to hold on to each other.
Dear Lynette,
I am so deeply sorry for your husband's ASPS diagnosis which brought you to this Board, but I am grateful that you found your way to this site and that you shared Jorge's ASPS history and treatment information, and that you reached out to our ASPS Community for input, advice, and support. Your English is actually very good and certainly 100% better than my Chinese would be! Also,the information which you so graciously shared is truly not boring to those of us who share this very challenging battle as it helps to give us a better understanding of Jorge's ASPS history, treatments, and current situation. Shared researched and individual patient anecdotal treatment information is one of our most valuable weapons in fighting this extremely rare disease, and any and all information is VERY important and deeply appreciated because we can, and do, all learn from each other's experiences.
As Olga has said, Jorge's ASPS clinical history and disease progression is unfortunately typical of this insidious disease with a fairly large primary tumor, metastasis to the lungs, and often metastasis to the brain and other areas of the body. It sounds like Jorge, you, and Jorge's doctors have been very pro-active in following and treating his disease with some of the most up-to-date and currently available treatments for which you are all to be commended. Our daughter Brittany has undergone three Gamma Knife treatments for her brain mets, If you have not already done so, you can read about her Gamma Knife experience in the Gamma Knife topic on this Discussion Board. Unfortunately, Brittany's first Gamma Knife procedure for a met in her parietal lobe and one in her cerebellum were unsuccessful probably because the mets were too large to successfully respond to the treatment (over two centimeters when they were diagnosed) After five months of suffering through post Gamma Knife brain swelling, excriciating headaches, severe vomiting, vision problems, seizures, very little if any shrinkage of the treated mets, and debilitating high dose Decadron steroid treatment to try to reduce the brain swelling and reduce the severe dside effects, she underwent resection of both mets which thankfully eventually resolved all of her symptoms. If Jorge continues to have unresolved brain swelling and the severe side effects with minimal tumor shrinkage, it could unfortunately mean that the the brain mets were already too large to be successfully destroyed by the Gamma Knife as happened with Brittany, and may need to be surgically removed if possible. Brittany's two subsequent Gamma Knife procedures were thankfully very successful in shrinking and destroying the new brain mets, and she fortunately did not experience any of the previous severe post Gamma Knife symptoms. We assume that this is because her brain mets were found and treated at a much smaller size as a result of vigilant scanning with a brain MRI every three months, which we continue to this day knowing how fast brain mets can grow. In regard to your question about "I don't know if it's easier to have brain metastatics again once it starts?", based on our personal experience and that of other ASPS patients who I have known with brain mets, it does seem that once brain mets have been diagnosed, there is a significantly increased chance of having more brain mets develop, which is why it is essential and critically important to have brain MRI's at least every three months or sooner if concerning symptoms of headaches, blurred vision, or muscle weakness occur.
How often is Jorge having his chest/abdominal/pelvic CT's and his full body bone scan? At this point in Jorge's situation with metastasis having occurred to the brain, he should have his chest/abdominal/pelvic CT's done WITH CONTRAST every three months, and a full body bone scan at least once a year to ensure that there are no mets in these areas.
Regarding the following issue: "Cyroablation: I read some of the stories in this website, Ivan and some one else have done this. George himself also have done this for twice. But we can't tell if it works through CT scan after 3 month or even 10 month. From the CT scan, we can't tell from size there are much change to the mets that had cyroablation 10 month ago. I don't know if it's because we are not doing the correct inspection--we do normal CT scan, maybe an enhanced (with contrast medium injection) CT is required? Anyone can you please share your experience?", it has been our experience with Brittany's two Cryoablation procedures and her one Radiofrequency ablation procedure that the ablated mets seem to slowly shrink and disappear, although the area of her two largest ablated mets continues to be noted on scans but appear to be dead and are thought to be residual scar tissue since they haven't changed in size in several years.
Given Jorge's continued disease progression, and the development of brain mets, I am wondering if any consideration been given to a systemic treatment with a targeted Tyrosine Kinase Inhibitor (TKI) like Cediranib or Pazopanib which are two of the few currently available drugs that can cross the blood brain barriar to try to prevent new brain mets. As you may or may not have read, Brittany has thankfully now had 43 months of disease stability with no new tumors and dramatic tumor shrinkage of her multiple and widely disseminated mets. She has had no new brain mets since starting the Cediranib treatment, and all of the ones that were treated by Gamma Knife seem to have completely dissipated, disappeared, and are no longer visible on the MRI scans.
It is I who must now apologize to you Lynette for this very long post, but I thought that it was important to share the information which I had. Please know that Jorge and you are not alone in your battle, and that those of us on this Board are here to try to help you in anyway that we can with shared information and strengthening support and encouragement. As you expressed so very well, "We need to hold on to each other". Please take care, stay strong, let Hope lead you through each day, and keep in touch as you are able.
Reaching out across the many miles between us to share warm hugs, deepest caring, healing wishes for Jorge, and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed at age 19 in July 2001
Thank you so much for your kind reply, Bonni. It's really detailed and consistent to the my questions. It will never boring me.
Please can you give a warm hug to Brittany for me? Interesting, I'm also a mother need to be extremely strong.
Since the brain swelling can't dispear for months, we will have brain MRI every 2 month or more frequently to supervise the swelling and the shringkage of the 2 mets had Gama knife. In the meanwhile, the other area of the brain will be monitored cafully in case any new metastatics emerges.
George has more than 10 mets (between 10 ~ 15) in the lung--sorry, i can't provide an exact number for looking at the CT scans, i'm too depressed to do anything. The lung has been over frequently monitored ever since metastatics were found, with CT scan of every 3 or 4 month. As you know, the progression is slowly, however the biggest 2 is about 3 cm now. I think we have to ablate them some way immediately for they are growing much faster than before. Considering the severe side effect of Gama knife, i don't know if it's right time for George to have any ablation now. I think George will try to convince the doctor to perform ablation asap once he feels better.
Bonnie, i agree with you that some systemic treatment should be considered in our situation. As to the systemic treatment with a targeted Tyrosine Kinase Inhibitor, we thought about it one month ago. George was very exciting reading some positive report about Sutent. But reading the experience of Brittany and other patients in this forum, we hold our decision in taking Cediranib or Pazopanib or Sutent. The side effects are too severe that i'm afraid George will be destroyed and the metastatics progress more quickly.
But we will still keep this in mind. And I have some questions about taking these pills. Do you have any examination on the tumor tissue or blood before taking the pills? We went to related doctor, and he asked us to do genic mutation analysis on the tumor tissues resected from George's crus years before. Unfortunately, none of the genic mutation is positive--i think it means that they can't find a proper targeted TKI to use?
It's much clear for me about the effective of Cyroablation. I would choose cyroablation for the following treatment in the lung, but I have to convince George. And I remember that some of the mets near pleura, doctor didn't suggest cyroablation saying it's dangerous. For those ones, we may still have to do I_125 active particles plantation for it's more mature.
Does anyone know cyber knife on the lung mets? This one also seems promising.
Some of our patients had CybeKnife for the lung mets. It is OK to use in case there are no other options, the radiation pneumonitis is a real danger there. Ivan had 2 mets cryo treated close by pleura and it was just fine, you can not use RFA there as the intercoastal nerve might be damaged but cryo is fine.
Thank you, Olga.
So looks like cyro is the first choice in the 3 kinds of ablation. We will go to the doctor maybe next week to see what they say. In china, it's not easy to talk to the doctor because there are too many patients there that they doctors don't have patience and time to talk about the treatment plan with you
Reading your updates of Ivan, I found he said he has over 200 small mets removed. If you don't mind me asking, what kind of inspection does Ivan have on the lung? Is it CT scan able to find the small mets?
Hi Olga,
I'm afraid it's too late, but I still want to ask if there is an chance. Do you think thoracotomy is still an option for us now? And how much is a course?
Ivan gets a CT scan for the lung mets surveillance. There are often more mets that are seen by the CT, at least it was in the beginning when he had his lung surgeries. We would go for the surgery with 20-30 visible ones and end up with a hundred of the tiny ones removed that were not visible - the CT scan resolution is reliable for the mets bigger than 1-2 mm, and the tiny ones are 0.5 - 1 mm that can be palpated during the surgery but not seen by the CT scan before of the surgery.
We had a problem with the missed incomplete cryoablation by the simple CT scan and after this last big ablation Dr.Littrup recommended to have a triple procedure - CT without contrast, then contrast is injected and a CT with the contrast and to compare these 2 images, he thinks that the result of the ablation is better seen comparing these 2 side by side, it supposed to be done at 1 month after the ablation. Ivan is going to have this scanning tomorrow here in Vancouver and we are going to send it to Dr.Littrup for his review.
About the lung surgery.
We discuss the laser assisted surgery in the Lung metastases area of this board
Board index ‹ Metastatic Disease Treatment ‹ Lung Metastases
this is the link for you to find it: http://www.cureasps.org/forum/viewforum.php?f=7
I do not know if surgery is still an option for your husband because Dr.Rolle only does it if other metastatic sites are treated, wait to see the brain mets improvement, the size gets down really slow after ablations or radiosurgeries - you have to know that the treatment was a success, otherwise it just does not make a sense to go through the very hard lung surgery. The cost is about 15,000 euro per a side including the tickets etc. I know that it is expensive for the people from China and elsewhere, it was expensive for us but manageable. The cost of the lung surgery is much higher in US - at least 3 times as much - and in UK - at least 4 times as much, than in Germany. On the other hand it is simply not available in the US or UK so we go to Dr.Rolle to Germany not because it is cheaper but because it is an unique area of expertise.
Dear Lynette,
Thank you for the additional information as well as your special caring and warm hugs for Brittany. I know how very difficult and overwhelming all of this must be for you, and especially so as a mother trying to also take care of your children while caring for your sick husband and researching treatment options for him.
I understand that the harsh side effects of a systemic treatment like Cediranib or Pazopanib may be too physically difficult for Jorge to endure right now while he is still experiencing the debilitating side effects from the post Gamma Knife brain swelling, but once the brain swelling has resolved and dissipated, and he has regained his strength and energy, I think that it will be very important to pursue some type of systemic treatment with a drug that can cross the blood brain barrier to try to prevent the development of anymore brain mets. Based on our personal experience with Brittany, and my eleven and a half years of research and observations of other ASPS patients with brain mets, without some type of interventional treatment, it is sadly very likely that more brain mets may appear. Unfortunately, Whole Brain Radiation (WBR), which is often recommended by ocologists to try to prevent new brain mets, did not prove to be successful for those ASPS patients who I am personally aware of who have had WBR because ASPS is so extremely radiation resistant, and WBR cannot safely deliver a high enough dose of radiation to kill macroscopic or microscopic ASPS mets as can be done with the very specifically focussed and extremely high dose Gamma Knife or Cyberknife radiation treatments.
In the interim, while Jorge continues to recover from his Gamma Knife, and if he is physically strong enough to undergo a procedure, I think that pursuing Cryoablation of his largest and most concerning lung mets would be a very good idea so that the mets don't grow too large to be able to be successfully ablated. Ablating the lung mets will help to reduce his body's tumor burden which should help to strengthen his immune system to enable him to better fight his disease, and Hopefully also make it possible for a systemic treatment to be more successful.
Take good care of yourself dear Lynette, give yourself and Jorge special hugs from me, and keep in touch with the Board as your time and the situation allow.
With deepest caring, healing wishes for Jorge, and continued Hope,
Bonni
Jorge wrote:Hello there, my name is Lynette from China. I'm so glad to find this forum and so many kind friends here.
First of all, apologize for my poor and plain English.
I'm posting for my husband George, who is 33 years old now. George was diagnosed in Mar 2007. He had a lump on his right crus—about 7*8cm. We didn’t know it’s so bad until it was resection.
Here is a summary of the treatment he had:
2007 April Radiotherapy (on the surgical incision )
2009 Jan chemotherapy (2 rounds)
2009 Apr I_125 active particles implantation
2009 May biotherapy--CIK
2011 Dec Cryoablation
2012 Apr Cryoablation
The progress of the diseas is very similar as most of the other patients here. 4 month after the surgical resection, metastatics were found on his lung--luckly the tumor didn't go to other place other than the lung. Following the doctror's suggestion - surveillance, the metastatics kept growing slowly to now the biggest one 3cm. During the period, we have tried chemo, I_125 implantation and twice of cryoablation.
But in the MRI in end of Sept, we find the tumor goes to the brain--I don't know if it's because something went wrong with the last treatment (the last cryoablation went on for about 4 hours, and George had hemoptysis during and after the ablation) or it's about time...
There are 2 metastatics in the brain, about 2*2cm (the metastatics in the brain grows much faster, the last brain MRI George had 6 months ago didn't find anything in the brain). The doctor suggest to do Gama Knife asap becuase the metastatic in the brain usually grows fast, we take the opinion and have the Gama Knife on the brain several days after the MRI.
And now, we don't know what to do next. I feel exhausted, confused, lost...
hello ，I am chinese too.and i am from hubei.can we talk?
Hi Lee,
Sorry for the disease happen to your sister. However it's lucky for you to find this forum and meet me.
We can contact by QQ for better communication, mine is 3576413. You're welcome to contact me. Since George will be on Cryo ablation on Jan 5, i'm afraid i won't have access to the internet in the following few days. Actually, we have a QQ group (3958002), you can ask you questions there and see if the other patients have any opinions.
Due to the poor medical communication system in China, people or doctors usually don't know which disease should go to which hospital. As far as I know for ASPS, the first affiliated hospital of Sun Yat-Sen University in Guangzhou, Jishuitan Hospital & the affiliated hospital of Peking University in Beijing treats more ASPS in China; they have more experience.
Don't give up in treatment. Please say hello to your sister for me and tell her to be optimistic, things may not be so bad as you think.
Happy New Year!
Sorry for my late reply. George's swelling turned bad sometimes so I didn't have time and mood to do any updates. And now he is much better and relieved from headache. But the eyesight degradation is so serious that he can barely work. I don't know when will it recover (to at least not affecting walking).
We went to Dr Qu (who is one of the top 3 cryoablation specialist in China) in Guangzhou last week. Seeing the CT scans, Dr Qu is confident to ablation the few bigger metastatics in the lower basement of the lung (most of the biggest metastatics grows in the lower part), including the one near the heart. That's really good news. But for the one close to the Longitudinal membrane and stomach, he thinks there is high risk to perforate or freeze off the stomach. For the one apress the stomack, he recommends Embedded particle radiation, which need to be done at another hospital due to the medical insurance issue. Anyway, this one can be deal with later after the biggest ones are albated.
Hope everything will go well in Guangzhou.
We were back from Guangzhou last Saturday after the Cryoablation and following Gama Knife.
George has several big metastatics (bigger than 1cm) on both of his lungs. After reviewing his CT scans, the doctor decided to ablation the 2 mets in the right side first (our original idea is to Cryoablation all the bigger mets in both side, which requires at least twice ablation).
The 2 mets in the right lung, the larger one is 3.4cm in the bottom basement, the smaller one is about 1.5cm near the spine. I watched the whole course of the puncture. It was very good at the beginning, the 2 mets were stabbed at the first try. Considering the larger one is big, the doctor wanted to puncture with more probes to offer complete freezing. The met kept moving that it took the doctor 6 probes to fix it but still not so perfect i think. Finally, there is 6 probes in the larger met and 2 in the smaller one. The ablation intensity is so high that it brought great and oppressive pain that George can hardly bear. Although we have had twice of ablation before, but never feel so terrible...
What's worse is we found much hydrothorax (approximately 1000ml) in the right lung by chance in the CT Scan in the next 2/3 days.
Due to that terrible experience, George is relunctant to take another ablation. And to ablation the other mets in the left side is real difficult and with high risk to damage heart or stomach. The doctor also suggest some other safe way, like Gama Knife.
To make it easier for George, we dicide to do Gama Knife which can do 6 mets at a time.
I'm going to off now. Will continue the update tomorrow.
