Dear every one in this big family,
My name is Kajer, Xenia is my girlfriend and she is 26 now.
She went to take a Chest X-ray on 9/7 because she had been coughing for two weeks. The result showed that she has multiple nodules in both side of her lung. After ruling out the possibility of TB and pneumonia, the physician mentioned about cancer metastasis and suggested for further examination.
Right after finishing the lung CT scan with contrast enhancement on 9/12, she felt pain when I touched her left iliac crest area and we saw a big swollen on it. We did a Pelvis MR the next day and found an egg-shaped tumor sitting on left iliac crest right under skin and a small one deeper. The pain disappeared in two days even through the swollen kept the same size.
After some discussion with different doctors, we finally went to VGH Taipei for ultrasound-guide biopsy on 9/21 and diagnosed of ASPS on 9/24. She did a Brain MR on 9/30 since ASPS sometimes goes to brain, and the report told that she has 4 or 5 little metastasis, and the largest one is around 0.9 mm.
For the treatment, the oncologist told us to take Sutent first. So she started taking her first Sutent on 9/30 for the dose of 25mg/day and adjusted to 37.5mg/day 3 days after. And we will discuss with the oncologist for the future plan.
There are two special things which I think I should mention. At first few days we only use X-ray for diagnosis, first on 9/7, then 9/10 and 9/11. The second one looked a little worse then the first one,
but the third which was took in NTU, according to the pulmonologist's opinion, was better than the previous which is unusual for tumor behavior. So he kinda ruled out cancer at that moment.
The other thing is that I followd some information and stories in this forum and found that ASPS should be a slow growing cancer at most time. But after comparing of all the exam we did, it seems like we can find some difference already, which is not typical ASPS progression speed.
I just want to thanks everyone here for all the useful information regarding this rare cancer. In Taiwan, ASPS is so rare therefore most of doctors haven't saw any case before. I'm happy that I can find this family so soon, so I can discuss
with her doctor. And I hope that everything will be fine for all of you and your loves.
Kajer
Xenia from Taiwan - Dx Sep 2013
Re: Xenia from Taiwan
Hi Kajer, welcome to the forum. I am sorry to hear that one more young person was Dx with this cruel disease.
Regarding your question about the speed of growth. First of all you have to make sure it is really an ASPS. There is a very similar pathologically close looking disease called Renal Cells Carcinoma (RCC) that has the same chromosomal pathology but with the different arrangement so they can be mistaken one for another. RCC usually starts in the kidney so you would need to see if the kidneys are clear. RCC is a faster growing disease.
On the other hand we have few people here with the same location of the ASPS primary tumor as Xenia.
If you are trying to judge the speed of growth based on the X-Rays it is really impossible - it is a very low resolution unit so its normal deviation would be big, the tumors might even look differently when she inhales etc. or when it is done on the different X-Ray units. Did she have any CT scan yet - baseline, before starting Sutent? What is the size of the biggest lung met.
I have a concern about starting the Sutent for the patient with the known brain metastases - if the drug works, it affects the blood vessels feeding the tumors and they can start to bleed. ASPS tumors are very highly vascular and the risk of bleeding is even higher in ASPS patient that in the other diseases. Most clinical trials for the TKI drugs (Sutent is one of them) exclude the patients with the known brain metastases just because of this high risk of bleeding. In my opinion, she had to have her brain mets treated first, before starting the TKI.
Is there any access to the GammaKnife radiosurgery treatment unit in Taipei? The brain mets are very small at the moment and might be treated at one or two sessions at once, the outcome is usually good with ASPS brain mets treated by the radiosurgery which is a high dose narrow focused radiation beam hit the tumor and virtually burns it.
Regarding your question about the speed of growth. First of all you have to make sure it is really an ASPS. There is a very similar pathologically close looking disease called Renal Cells Carcinoma (RCC) that has the same chromosomal pathology but with the different arrangement so they can be mistaken one for another. RCC usually starts in the kidney so you would need to see if the kidneys are clear. RCC is a faster growing disease.
On the other hand we have few people here with the same location of the ASPS primary tumor as Xenia.
If you are trying to judge the speed of growth based on the X-Rays it is really impossible - it is a very low resolution unit so its normal deviation would be big, the tumors might even look differently when she inhales etc. or when it is done on the different X-Ray units. Did she have any CT scan yet - baseline, before starting Sutent? What is the size of the biggest lung met.
I have a concern about starting the Sutent for the patient with the known brain metastases - if the drug works, it affects the blood vessels feeding the tumors and they can start to bleed. ASPS tumors are very highly vascular and the risk of bleeding is even higher in ASPS patient that in the other diseases. Most clinical trials for the TKI drugs (Sutent is one of them) exclude the patients with the known brain metastases just because of this high risk of bleeding. In my opinion, she had to have her brain mets treated first, before starting the TKI.
Is there any access to the GammaKnife radiosurgery treatment unit in Taipei? The brain mets are very small at the moment and might be treated at one or two sessions at once, the outcome is usually good with ASPS brain mets treated by the radiosurgery which is a high dose narrow focused radiation beam hit the tumor and virtually burns it.
Olga
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Xenia from Taiwan - Dx Sep 2013
Dear Kajer,
I am so very sorry for your girlfriend Xenia's recent ASPS diagnosis and the uncharacteristic seemingly rapid metastatic spread to the brain from her primary tumor site in the iliac crest area of her pelvis. I am grateful that you found your way to this Web site and that you have reached out to the Board for information, input, and support. I wonder how long Xenia may have had her primary tumor since if she actually had it for quite awhile before it became symptomatic, the spread to her lungs and brain may not actually be as rapid as it appears. I agree with Olga that I think that it is premature and concerning for Xenia to be on a systemic Sutent treatment before her brain mets have been surgically removed or treated with Gamma Knife because of the known risk of cerebral hemmorhage with tyrosine kinase inhibitors (TKI's) such as Sutent. I strongly encourage you to discuss these concerns and the situation with Xenia's doctors as soon as possible and to request that she be taken off of the Sutent until her brain mets have been successfully treated with radiosurgery like Gamma Knife or surgically removed. I will be anxiously awaiting your next update and sending my most positive thoughts and very best wishes across the miles. In the meantime, stay strong and know that you and Xenia are not alone in this difficult battle. Those of us on this Board are here to share invaluable researched and anecdotal treatment information as well as strengthening support and encouragement.
With special caring thoughts, healing wishes for Xenia, and continued Hope,
Bonni Hess, mother of now 31 year old Brittany diagnosed with ASPS at age 19 in July 2001
I am so very sorry for your girlfriend Xenia's recent ASPS diagnosis and the uncharacteristic seemingly rapid metastatic spread to the brain from her primary tumor site in the iliac crest area of her pelvis. I am grateful that you found your way to this Web site and that you have reached out to the Board for information, input, and support. I wonder how long Xenia may have had her primary tumor since if she actually had it for quite awhile before it became symptomatic, the spread to her lungs and brain may not actually be as rapid as it appears. I agree with Olga that I think that it is premature and concerning for Xenia to be on a systemic Sutent treatment before her brain mets have been surgically removed or treated with Gamma Knife because of the known risk of cerebral hemmorhage with tyrosine kinase inhibitors (TKI's) such as Sutent. I strongly encourage you to discuss these concerns and the situation with Xenia's doctors as soon as possible and to request that she be taken off of the Sutent until her brain mets have been successfully treated with radiosurgery like Gamma Knife or surgically removed. I will be anxiously awaiting your next update and sending my most positive thoughts and very best wishes across the miles. In the meantime, stay strong and know that you and Xenia are not alone in this difficult battle. Those of us on this Board are here to share invaluable researched and anecdotal treatment information as well as strengthening support and encouragement.
With special caring thoughts, healing wishes for Xenia, and continued Hope,
Bonni Hess, mother of now 31 year old Brittany diagnosed with ASPS at age 19 in July 2001
Re: Xenia from Taiwan - Dx Sep 2013
Kajer and Xenia
We are sorry to hear of your recent diagnosis
Our son Josh, whose story is in the personal section , was diagnosed last year with ASPS
We've had the primary removed and both lungs cleared of multiple tumors
Right now through research we have found surgery to be the best treatment to combat this slow growing but very persistent disease . They need to be removed at the smallest possible size as you don't want to wait till the create symptoms
The ASPS forum home page has several ways to remove them
Take some time to make good choices and ask lots of questions as it is very important for your futures
Keep in touch as you are able
Sincerely
Debbie and family
We are sorry to hear of your recent diagnosis
Our son Josh, whose story is in the personal section , was diagnosed last year with ASPS
We've had the primary removed and both lungs cleared of multiple tumors
Right now through research we have found surgery to be the best treatment to combat this slow growing but very persistent disease . They need to be removed at the smallest possible size as you don't want to wait till the create symptoms
The ASPS forum home page has several ways to remove them
Take some time to make good choices and ask lots of questions as it is very important for your futures
Keep in touch as you are able
Sincerely
Debbie and family
Debbie
Re: Xenia from Taiwan - Dx Sep 2013
Dear all,
Thanks for your kindly help!
She found that her left iliac crest bone looked a little different than the right side for about 3 or 4 month. But since we knew she has spine scoliosis, we thought it was just asymmetry of her pelvis position. I think the tumor was there.
For the result of CT scan on 9/12, the largest one is about 2 to 3 cm. I will get a copy of the imagine and have more precise number.
When she did the CT scan , it all covered part of her kidney, and it shows normal with the imagine. And and pathology report shows that the tumor cells' characters including immunostains results are consistent with ASPS. But I will ask her
doctor if' it's possible to do a kidney examination to rule out RCC !
And I mentioned the risk of bleeding in her brain, her doctor said that he knew the risk of bleeding when taking Sutent, but consider the possibility including the tumor size and other condition, and the cost of Gamma knife( it's not cover in her
insurance), he's still suggesting taking Sutent first. I'm still asking more opinion about it and will discuss with her parents and doc ! I hope we can figure out ASAP !
For the long term goal, I think we want to control the tumor good enough for the primary or even the metastasis to be removed. After all that is the most efficiency way to treat ASPS !
Thank you all for your opinion and please forgive me if my English sometimes is not enough to explain what i want to say !
Thanks for your kindly help!
She found that her left iliac crest bone looked a little different than the right side for about 3 or 4 month. But since we knew she has spine scoliosis, we thought it was just asymmetry of her pelvis position. I think the tumor was there.
For the result of CT scan on 9/12, the largest one is about 2 to 3 cm. I will get a copy of the imagine and have more precise number.
When she did the CT scan , it all covered part of her kidney, and it shows normal with the imagine. And and pathology report shows that the tumor cells' characters including immunostains results are consistent with ASPS. But I will ask her
doctor if' it's possible to do a kidney examination to rule out RCC !
And I mentioned the risk of bleeding in her brain, her doctor said that he knew the risk of bleeding when taking Sutent, but consider the possibility including the tumor size and other condition, and the cost of Gamma knife( it's not cover in her
insurance), he's still suggesting taking Sutent first. I'm still asking more opinion about it and will discuss with her parents and doc ! I hope we can figure out ASAP !
For the long term goal, I think we want to control the tumor good enough for the primary or even the metastasis to be removed. After all that is the most efficiency way to treat ASPS !
Thank you all for your opinion and please forgive me if my English sometimes is not enough to explain what i want to say !
Re: Xenia from Taiwan - Dx Sep 2013
Hi kajer,
Here is my 2 cents:
The brain mets are very dangerous and develops much faster than the mets in the lung. Since Xenia just began Suten, you can't know if Sutent will work on her. Even if Sutent can work on the primary and the lung mets, we don't know if Sutent can go through her Blood Brain Barrier to work on the brain mets.
So it will be very tough to treat the brain mets if they can't be controlled by Sutent and grow up.
Lynette
Here is my 2 cents:
The brain mets are very dangerous and develops much faster than the mets in the lung. Since Xenia just began Suten, you can't know if Sutent will work on her. Even if Sutent can work on the primary and the lung mets, we don't know if Sutent can go through her Blood Brain Barrier to work on the brain mets.
So it will be very tough to treat the brain mets if they can't be controlled by Sutent and grow up.
Lynette
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Xenia from Taiwan - Dx Sep 2013
Dear Kajer,
Thank you for the additional information. I strongly agree with Lynette regarding the urgency and necessity of treating the brain mets as the first and highest priority as soon as possible for all of the critically important reasons that she has listed. I encourage you to pursue Gamma Knife treatment, but if Gamma Knife is absolutely not an option due to being cost prohibitive and not covered by Xenia's insurance, perhaps an appeal could be made to the insurance company for coverage based on the documented success of Gamma Knife for small ASPS brain mets. If this is not a possibility, perhaps her brain mets could be surgically removed if they are in a resectable area of the brain. It is imperative that the brain mets be treated or removed as soon as possible and before they become too large to successfully treat with radiosurgery or to be surgically removed. Unfortunately, Sutent has thus far not proven to show very significant, sustained, or long term success for ASPS patients, and I don't think that you should gamble that it might work to shrink/destroy the brain mets.
Regarding Xenia having just noticed her iliac crest tumor 3-4 months ago, by the time that it surfaced to become a noticeable lump, it certainly could have been present deeper in her pelvis for a long time, as we feel Brittany's primary tumor in her thigh was which is why we think that it had already metastasized to her lungs with innumerous mets by the time the thigh tumor appeared and ASPS was diagnosed.
Once the brain mets are treated/removed, then I think that the next priority should be removal of the iliac crest tumor, if it is resectable, so that Xenia's body's tumor burden can be reduced. Based on my twelve+ years of extensive research and following other ASPS patients, TKI drugs like Sutent have unfortunately not been very successful in significantly shrinking/destroying large tumors so the tumors need to be resected or treated with some type of radiosurgery or ablation if possible.
My continued most caring thoughts and very best wishes are with Xenia, you, and her family, and I will be anxiously awaiting your next update regarding the treatment decisions.
With deepest caring, healing wishes for Xenia, and continued Hope,
Bonni
Thank you for the additional information. I strongly agree with Lynette regarding the urgency and necessity of treating the brain mets as the first and highest priority as soon as possible for all of the critically important reasons that she has listed. I encourage you to pursue Gamma Knife treatment, but if Gamma Knife is absolutely not an option due to being cost prohibitive and not covered by Xenia's insurance, perhaps an appeal could be made to the insurance company for coverage based on the documented success of Gamma Knife for small ASPS brain mets. If this is not a possibility, perhaps her brain mets could be surgically removed if they are in a resectable area of the brain. It is imperative that the brain mets be treated or removed as soon as possible and before they become too large to successfully treat with radiosurgery or to be surgically removed. Unfortunately, Sutent has thus far not proven to show very significant, sustained, or long term success for ASPS patients, and I don't think that you should gamble that it might work to shrink/destroy the brain mets.
Regarding Xenia having just noticed her iliac crest tumor 3-4 months ago, by the time that it surfaced to become a noticeable lump, it certainly could have been present deeper in her pelvis for a long time, as we feel Brittany's primary tumor in her thigh was which is why we think that it had already metastasized to her lungs with innumerous mets by the time the thigh tumor appeared and ASPS was diagnosed.
Once the brain mets are treated/removed, then I think that the next priority should be removal of the iliac crest tumor, if it is resectable, so that Xenia's body's tumor burden can be reduced. Based on my twelve+ years of extensive research and following other ASPS patients, TKI drugs like Sutent have unfortunately not been very successful in significantly shrinking/destroying large tumors so the tumors need to be resected or treated with some type of radiosurgery or ablation if possible.
My continued most caring thoughts and very best wishes are with Xenia, you, and her family, and I will be anxiously awaiting your next update regarding the treatment decisions.
With deepest caring, healing wishes for Xenia, and continued Hope,
Bonni
Re: Xenia from Taiwan - Dx Sep 2013
Kajer and Xenia and family
We hope that you have been able to make some progress in understanding and getting a plan together for Xenia's treatment for her ASPS
Let us know when time permits
Sincerely
Debbie and Family
We hope that you have been able to make some progress in understanding and getting a plan together for Xenia's treatment for her ASPS
Let us know when time permits
Sincerely
Debbie and Family
Debbie
Re: Xenia from Taiwan - Dx Sep 2013
Dear all,
Thanks for everyone's helpful opinion and warm blessings!
After a discuss with Xenia's oncologist, we were referred to a neurosurgeon, and then she will have gamma knife in 2-3 week.
We also discussed about the risk of bleeding, the neurosurgeon evaluated her brain meta in MRI and other things, he also suggested us to keep taking Sutent to control the disease over all, but it's better for us to monitor her for some detail changes.
If the gamma knife is success, the next step for us is to ask the surgeon if it's possible to remove the primary ASAP.
Your every single opinion is very helpful for us! And I hope that everyone can overcome this tough disease together!!
Kajer
Thanks for everyone's helpful opinion and warm blessings!
After a discuss with Xenia's oncologist, we were referred to a neurosurgeon, and then she will have gamma knife in 2-3 week.
We also discussed about the risk of bleeding, the neurosurgeon evaluated her brain meta in MRI and other things, he also suggested us to keep taking Sutent to control the disease over all, but it's better for us to monitor her for some detail changes.
If the gamma knife is success, the next step for us is to ask the surgeon if it's possible to remove the primary ASAP.
Your every single opinion is very helpful for us! And I hope that everyone can overcome this tough disease together!!
Kajer
Re: Xenia from Taiwan - Dx Sep 2013
Kajer and Xenia
Your plans sound really good
Let us know how Xenia is doing after her surgery as soon as is possible for you
In the mean time enjoy the progress you are making and each other!
Sincerely
Debbie and family
Ps how long has Xenia been on sutent?
Your plans sound really good
Let us know how Xenia is doing after her surgery as soon as is possible for you
In the mean time enjoy the progress you are making and each other!
Sincerely
Debbie and family
Ps how long has Xenia been on sutent?
Debbie
Re: Xenia from Taiwan - Dx Sep 2013
Dear Debby,
She started her first sutent on 9/30 , so it's about 3 weeks.
BTW, she started to feel a little pain on her primary tumor these days. Is it possible that the pain is caused by the effect of sutent on the tumor??
She started her first sutent on 9/30 , so it's about 3 weeks.
BTW, she started to feel a little pain on her primary tumor these days. Is it possible that the pain is caused by the effect of sutent on the tumor??
Re: Xenia from Taiwan - Dx Sep 2013
Kajer and Xenia
Good to hear from you
The pain could be a side effect of the drug OR it could be the drug working on the tumor, as I understand it
What is the goal of taking Sutent? Are the doctors doing bloodwork to check liver functions ?
Bonni pointed out that the ASPS , even though unfortunately there are brain mets, probably has been growing for along time.
I know it must be terrifing that the ASPS has spread this far. Please be very careful in taking this drug. It has lots of side effects. You all are doing a great job in combating this disease by taking care of the brain mets.
Stay strong
Love
Debbie
Good to hear from you
The pain could be a side effect of the drug OR it could be the drug working on the tumor, as I understand it
What is the goal of taking Sutent? Are the doctors doing bloodwork to check liver functions ?
Bonni pointed out that the ASPS , even though unfortunately there are brain mets, probably has been growing for along time.
I know it must be terrifing that the ASPS has spread this far. Please be very careful in taking this drug. It has lots of side effects. You all are doing a great job in combating this disease by taking care of the brain mets.
Stay strong
Love
Debbie
Debbie