Hi,
Let me start by introducing myself, I'm Mel, my sister is Jo. Jo was recently holidaying in the US (12 weeks ago) when she had an attack, at the time we thought it was a suspected Appendicitis. Jo was flown to Denver where she had several tests, xray, ct scans revealed she had 2 x large masses in her pelvis area around 5cm each (terratomas) and a large 10 x 5 mass growing outwards from her illiacus muscle. In-numberable nodules (500+) in her lungs but 4 large ones stood out being around 3-4cm. The most alarming is next to her heart. They immediately flew her home to Perth.
On arrival in Perth and after many more tests it was confirmed Jo has alveolar sarcoma of the illiacus muscle with metastasis to the lungs. All this in 12 weeks.
So here we are today - after her last appointment (one week ago) they have now placed Jo on Sunitinib orally once per day (about time they put her on something!) She was meant to commence a drug trail on a drug unnamed but due to the last PET scan (whereby all tumors had grown) Jo was told to take Sunitinib orally once per day. (she is now yellow! but this we are told is just a side effect of the drug).
In the past twelve weeks I have contacted surgeons all over the world - all to no avail. Dr Rolle was kind enough to look at Jo's CT scans and he too is unable to laser because of the in-numerable amount of nodules in her lungs. So no surgery, no radiation, no removing the primary.
Let me tell you about Jo - she is the most wonderful little sister in the world. Jo is beautiful inside and out - I constantly ask WHY HER? Jo is fit she runs everyday (and is still!) her diet is full of veggies and fruit - I do not know of another person who eats or exercises does yoga - and lives such a clean life! Im sure everyone asks this question and there is never an answer but it is still totally unfair.
So where to from here? I dont know she is the first person here in WA to have this terrible disease and not much is known. I wonder sometimes whether we have the resources to treat this disease. Hence my message today on icureASPS - I suppose Im wondering if there is anyone like Jo and at this stage with mets to the lungs that may know of another drug that may work on lung mets? Or if anyone has any ideas ?
Thanks, Mel & Jo
Jo from Perth Australia - Dx 2011
Re: New Member 2011 - Jo and Mel
Mel & Jo,
I'm glad that you have found this forum and hope that the people here can bring you some hope. My daughter, Jordanne has been in the Cediranib trial and after initial shrinkage of all of her tumors she has remained stable. I would encourage you to try to get into the NIH Cediranib trial. It has had some remarkable results for many.
The very best that I can offer is to assure you that I will be praying for both of you.
Warmest thoughts and prayers,
Dotty
I'm glad that you have found this forum and hope that the people here can bring you some hope. My daughter, Jordanne has been in the Cediranib trial and after initial shrinkage of all of her tumors she has remained stable. I would encourage you to try to get into the NIH Cediranib trial. It has had some remarkable results for many.
The very best that I can offer is to assure you that I will be praying for both of you.
Warmest thoughts and prayers,
Dotty
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: New Member 2011 - Jo and Mel
Dear Mel,
I am so very sorry for your sister Jo's recent ASPS diagnosis and for all that she, you , and your family have been through during the past twelve weeks. I am so sorry too that surgical removal and laser resection are not treatment options for Jo's innumerous lung mets because of the large number of mets. I am grateful that you found your way to this Web site, and that you wrote to share Jo's information on the Board, and to reach out for information and help. I am grateful too that Jo has such a loving, caring, and devoted sister, and that you have already been so pro-active in researching and seeking the best treatment for her. Although Sunitinib (Sutent) has shown some success in stabilizing the progression of disease and shrinking tumors in ASPS patients, Cediranib seems to have been more effective in terms of causing more sigmificant tumor shrinkage/disappearance. Unfortunately, Cediranib is only currently available for ASPS patients in Clinical Trial at the National institute of Health in Bethesda, Maryland, USA, but I think that it would be worthwhile for you to contact NIH to discuss the possibility of Jo being enrolled in the Trial. The contact information for the NIH Cediranib Trial is located under the "Clinical Trials" subject heading and the Cediranib topic link on this Discussion Board. Are Jo's liver enzymes being monitored with regular blood tests by her doctors while she is taking Sutent? This is very important because elevated liver enzymes are a possible risk of anti-angiogenic tyrosinc kinase inhibitors (TKI's) such as Sutent, and I am concerned about Jo's jaundiced (yellow) appearance which can be an indication of liver problems. Has Jo had complete scans including chest/abdominal/ pelvic CT scans, a brain MRI, and a full body bone scan to ensure that she has no other mets in other areas of her body? If any of these important diagnostic scans haven't been done yet, I strongly encourage you to request that Jo be scheduled to have them as soon as possible. Also, how large is Jo's primary tumor in her illiacus muscle, and have you sought second surgical opinions regarding the possibility of surgically removing it? Has radiosurgery or ablation been explored or discussed as a possible treatment option to help shrink and destroy the primary tumor? I know that I have asked a lot of questions and presented a lot of information which is probably very overwhelming for you, but there are many issues which need to be addressed as soon as possible. Please know that Jo and you are not alone in this battle and that I and others on this Board are here to try to answer any questions or to provide any information that we can. Please know too that my heart and my most caring thoughts are with Jo, you, and your family. Take care Mel, stay strong, let Hope lead you through each day, and keep the Board updated as you are able.
With deepest caring, special thoughts, healing wishes for Jo, and continued Hope,
Bonni Hess, mother of 29 year old Brittany diagnosed at age 19 in July 2001
I am so very sorry for your sister Jo's recent ASPS diagnosis and for all that she, you , and your family have been through during the past twelve weeks. I am so sorry too that surgical removal and laser resection are not treatment options for Jo's innumerous lung mets because of the large number of mets. I am grateful that you found your way to this Web site, and that you wrote to share Jo's information on the Board, and to reach out for information and help. I am grateful too that Jo has such a loving, caring, and devoted sister, and that you have already been so pro-active in researching and seeking the best treatment for her. Although Sunitinib (Sutent) has shown some success in stabilizing the progression of disease and shrinking tumors in ASPS patients, Cediranib seems to have been more effective in terms of causing more sigmificant tumor shrinkage/disappearance. Unfortunately, Cediranib is only currently available for ASPS patients in Clinical Trial at the National institute of Health in Bethesda, Maryland, USA, but I think that it would be worthwhile for you to contact NIH to discuss the possibility of Jo being enrolled in the Trial. The contact information for the NIH Cediranib Trial is located under the "Clinical Trials" subject heading and the Cediranib topic link on this Discussion Board. Are Jo's liver enzymes being monitored with regular blood tests by her doctors while she is taking Sutent? This is very important because elevated liver enzymes are a possible risk of anti-angiogenic tyrosinc kinase inhibitors (TKI's) such as Sutent, and I am concerned about Jo's jaundiced (yellow) appearance which can be an indication of liver problems. Has Jo had complete scans including chest/abdominal/ pelvic CT scans, a brain MRI, and a full body bone scan to ensure that she has no other mets in other areas of her body? If any of these important diagnostic scans haven't been done yet, I strongly encourage you to request that Jo be scheduled to have them as soon as possible. Also, how large is Jo's primary tumor in her illiacus muscle, and have you sought second surgical opinions regarding the possibility of surgically removing it? Has radiosurgery or ablation been explored or discussed as a possible treatment option to help shrink and destroy the primary tumor? I know that I have asked a lot of questions and presented a lot of information which is probably very overwhelming for you, but there are many issues which need to be addressed as soon as possible. Please know that Jo and you are not alone in this battle and that I and others on this Board are here to try to answer any questions or to provide any information that we can. Please know too that my heart and my most caring thoughts are with Jo, you, and your family. Take care Mel, stay strong, let Hope lead you through each day, and keep the Board updated as you are able.
With deepest caring, special thoughts, healing wishes for Jo, and continued Hope,
Bonni Hess, mother of 29 year old Brittany diagnosed at age 19 in July 2001
Re: New Member 2011 - Jo and Mel
Hi Bonnie,
Thank you for responding and for all the information - I will pass on immediately to Jo.
Jo will make contact in time - I think it is a great website how people can access such valuable information from other people suffering this terrible disease. I will look into the trial you mentioned on cediranib and see what they have to say. I thought it may be difficult for Jo to join a trial in the US as she can not travel ? Im not sure how they would send the drug here to Perth? but everything is worth a go.
Her next appointment isnt for 4 weeks! - I think more blood tests. Jo is very yellow - Ive never seen anything like it. She has been on sunitinib for just over a week. So has just had a blood test one week in. The results came back on Friday and all levels were normal (I havent pressed Jo about what levels etc but the doctor said everything was within normal range). I might get a second opinion form her gp - perhaps she can be retested and they can double check Jo's liver enzymes. Her next ct scans are in three months.
The mass on her illiacus muscle is 10 x 5cm. I have spoken to surgeons re all options or removal of the primary but all say it is best to leave it there now? We are hoping to find a drug that may shrink it and then ask if surgery is an option. Jo has had PET scans and CT scans on all organs/brain/bone and there are no other sites with mets. Her lungs are the biggest worry. We are heading into winter now and Jo has just caught the flu - Ill get onto contacting this trial now that I have worked out how to access the site!
Warmest regards, Mel
Thank you for responding and for all the information - I will pass on immediately to Jo.
Jo will make contact in time - I think it is a great website how people can access such valuable information from other people suffering this terrible disease. I will look into the trial you mentioned on cediranib and see what they have to say. I thought it may be difficult for Jo to join a trial in the US as she can not travel ? Im not sure how they would send the drug here to Perth? but everything is worth a go.
Her next appointment isnt for 4 weeks! - I think more blood tests. Jo is very yellow - Ive never seen anything like it. She has been on sunitinib for just over a week. So has just had a blood test one week in. The results came back on Friday and all levels were normal (I havent pressed Jo about what levels etc but the doctor said everything was within normal range). I might get a second opinion form her gp - perhaps she can be retested and they can double check Jo's liver enzymes. Her next ct scans are in three months.
The mass on her illiacus muscle is 10 x 5cm. I have spoken to surgeons re all options or removal of the primary but all say it is best to leave it there now? We are hoping to find a drug that may shrink it and then ask if surgery is an option. Jo has had PET scans and CT scans on all organs/brain/bone and there are no other sites with mets. Her lungs are the biggest worry. We are heading into winter now and Jo has just caught the flu - Ill get onto contacting this trial now that I have worked out how to access the site!
Warmest regards, Mel
Re: New Member 2011 - Jo and Mel
Hi Dotty,
Thank you so much for your thoughts and prayers for Jo - I too am sending positive thoughts and prayers to you and Jordanne.
It's all still surreal - and to be given no real options it is very frustrating - as like I said Jo is (otherwise) heathy and active.
Im going to look into the Cediranib trial today and see if I can get anywhere.
Mel x
Thank you so much for your thoughts and prayers for Jo - I too am sending positive thoughts and prayers to you and Jordanne.
It's all still surreal - and to be given no real options it is very frustrating - as like I said Jo is (otherwise) heathy and active.
Im going to look into the Cediranib trial today and see if I can get anywhere.
Mel x
Re: New Member 2011 - Jo and Mel
Mel, I just saw your post. Sorry to hear that. Ivan was Dx in 2003 and it is still surreal - and he was (and is) very healthy and active person that eat very sensibly and exercise daily, go figure.
Why Jo can not travel? We have few people that went to US just to participate in that trial.
But may be you should see if sunitinib is working? Some people get great response to it, at least for awhile. The she can try cediranib.
We also had a case described here:
http://www.cureasps.org/forum/viewtopic ... 1265#p1265
with the almost complete response of the multiple lung mets to gemcitabine (Gemzar) daily prolonged administration. But that girl had her primary resected, we feel that it is important to get rid of it and that it may produce direct immune suppressive effect.
Why Jo can not travel? We have few people that went to US just to participate in that trial.
But may be you should see if sunitinib is working? Some people get great response to it, at least for awhile. The she can try cediranib.
We also had a case described here:
http://www.cureasps.org/forum/viewtopic ... 1265#p1265
with the almost complete response of the multiple lung mets to gemcitabine (Gemzar) daily prolonged administration. But that girl had her primary resected, we feel that it is important to get rid of it and that it may produce direct immune suppressive effect.
Olga
Re: New Member 2011 - Jo and Mel
Hi and Welcome to the forums!
I too would seek entry in the Cediranib trial at NCI. I think it's about to stop accepting new patients, so act fast.
Cediranib is more effective than sutent for most people.
I too would seek entry in the Cediranib trial at NCI. I think it's about to stop accepting new patients, so act fast.
Cediranib is more effective than sutent for most people.
Re: Jo from Perth Australia - Dx 2011
Hi Mel,
I'm sorry to hear about your sister.
Regarding the skin turning yellow on Sunitinib, my husband's skin also turned very yellow when he was on sunitinib.
His blood work was all in the normal range and we learnt that this can be a common side effect of the dye found in this drug.
Allthough not everyone turns yellow while on this drug, it does happen to some. This side effect totally went away when he stopped Sunitinib.
Arch
I'm sorry to hear about your sister.
Regarding the skin turning yellow on Sunitinib, my husband's skin also turned very yellow when he was on sunitinib.
His blood work was all in the normal range and we learnt that this can be a common side effect of the dye found in this drug.
Allthough not everyone turns yellow while on this drug, it does happen to some. This side effect totally went away when he stopped Sunitinib.
Arch
Re: Jo from Perth Australia - Dx 2011
Hello Welcome to the forums!
I am so so sorry that cancer has entered your lives
I am happy though that you have found this forum and are posting it will help this new road in your lives a little less bumpy and also the feeling of being alone gone because you two are far from alone!
Welcome to our little family/group
*hugs to you both*
I am so so sorry that cancer has entered your lives
I am happy though that you have found this forum and are posting it will help this new road in your lives a little less bumpy and also the feeling of being alone gone because you two are far from alone!
Welcome to our little family/group
*hugs to you both*
“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: Jo from Perth Australia - Dx 2011
Mel
my heart clutched when I read about You girls. I immidiately felt close to You since I'm also an older sister of an ASPS patient.
I'm very sorry the ASPS just crashed in Your life so rude,
and when You wrote about Jo leading such healthylifestyle I saw a big question mark.
SInce You contacted every surgeon You could I think You did the right work. But I encourage You to keep looking.
We also were given 'unresectable primary' tag at the begginig, but we found surgeon in the US who resected Paula's tumor out.
SHe is treated in The US since then.
I don't know, it just crossed my mind I should share it with You, there is this clinic in China (which is kind of closer to where You are) one of polish cancer patients (who doctors gave very very limited options) flew there
and chinese doctors performed different kinds of treatmet on her (spine, lungs etc. ) She wasn't ASPS patient but uncurable sarcoma type patient and I think this clinic is worth researching.
There is this guy Frank Kamp Mortensen who helps to contact doctors, You can check below webpage he created and maybe he could be helpfull to give You more info:
http://www.opgivet.dk/2-89-om-opgivetdk.html
I just thought I should share it with You, since I also keep it in mind for Paula at some point where options get limited (of course I prefere they will not).
How is Jo doing now? Send her best hugs from Poland,
I'm sure she is very lucky to have You. I am also guessing what You are feeling, that's why I just hug You virtually with understandig. I'll be fallowing Your posts and thinking of You
all the best and happy and supporting to You
my heart clutched when I read about You girls. I immidiately felt close to You since I'm also an older sister of an ASPS patient.
I'm very sorry the ASPS just crashed in Your life so rude,
and when You wrote about Jo leading such healthylifestyle I saw a big question mark.
SInce You contacted every surgeon You could I think You did the right work. But I encourage You to keep looking.
We also were given 'unresectable primary' tag at the begginig, but we found surgeon in the US who resected Paula's tumor out.
SHe is treated in The US since then.
I don't know, it just crossed my mind I should share it with You, there is this clinic in China (which is kind of closer to where You are) one of polish cancer patients (who doctors gave very very limited options) flew there
and chinese doctors performed different kinds of treatmet on her (spine, lungs etc. ) She wasn't ASPS patient but uncurable sarcoma type patient and I think this clinic is worth researching.
There is this guy Frank Kamp Mortensen who helps to contact doctors, You can check below webpage he created and maybe he could be helpfull to give You more info:
http://www.opgivet.dk/2-89-om-opgivetdk.html
I just thought I should share it with You, since I also keep it in mind for Paula at some point where options get limited (of course I prefere they will not).
How is Jo doing now? Send her best hugs from Poland,
I'm sure she is very lucky to have You. I am also guessing what You are feeling, that's why I just hug You virtually with understandig. I'll be fallowing Your posts and thinking of You
all the best and happy and supporting to You
Re: Jo from Perth Australia - Dx 2011
Hi, MANIA, I am a Chinese. a physician. about the Cancer Hospital of Tianjin that you mentioned I am very familiar. The hospital's CyberKnife purchase in 2005, the doctor's technology is also not bad. Other treatment measures it is not to be commended. Please do not believe that web-site.
Re: Jo from Perth Australia - Dx 2011
Welcome doctorFeng zhou wrote:Hi, MANIA, I am a Chinese. a physician. about the Cancer Hospital of Tianjin that you mentioned I am very familiar. The hospital's CyberKnife purchase in 2005, the doctor's technology is also not bad. Other treatment measures it is not to be commended. Please do not believe that web-site.
Thank you very much doctor for letting us know this!
“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: Jo from Perth Australia - Dx 2011
Hi Everyone,
Just an update on my beautiful sister Jo.
Jo has finished her first cycle of sutent, 4 week on 2 weeks off. Only bloods were taken and all fine – so she can continue to take sutent.
So this is where the next episode begins. I question why would any hospital make it so hard for a patient to access treatment.
To be able to take Sutent Jo had to pay $7000 for a 4 week cycle. (Well actually Dad had to pay as Jo cannot work). Jo was told that her Doctor would write to the board to see if the hospital would pay for drugs required. Sutent is on the PBS but not for Asps therefore she would need to pay until the hospital agreed to allow her to take it.
We knew something was up when they cancelled her second appointment for chemo. Thankfully we managed to get another appointment the following week but were told that because Joanna is the only person in WA with this disease the hospital will not pay for the chemo.??? (I’m doing my best on holding back on what I would really like to say)…. not happy.
Jo has been given 2 months worth of chemo tablets but is not scheduled for any ct scans or blood tests now until she finishes the next two lots of chemo tablets. She will then have her scans and we are hoping if there is any shrinkage the Doctor will then take it up with the hospital board again.
Nothing else was really said apart from if her temperature reaches over 38’ to go to an emergency department. There may be a trail coming to Sydney or Melbourne but it could be up to a year away.
I would have thought that as Jo is still running 4km each day and looks and feels great that the Doctors would be trying to help her and the simple fact she is the only person here in WA but sadly no.
My next step…. Fundraising /petition to the hospital?
If anyone has any documented research on sutent helping asps (lung mets in particular) it would be great to access the information as I can present this in the petition? Or any other recommendations, thoughts, drugs, would be greatly appreciated.
Positive thoughts x
Just an update on my beautiful sister Jo.
Jo has finished her first cycle of sutent, 4 week on 2 weeks off. Only bloods were taken and all fine – so she can continue to take sutent.
So this is where the next episode begins. I question why would any hospital make it so hard for a patient to access treatment.
To be able to take Sutent Jo had to pay $7000 for a 4 week cycle. (Well actually Dad had to pay as Jo cannot work). Jo was told that her Doctor would write to the board to see if the hospital would pay for drugs required. Sutent is on the PBS but not for Asps therefore she would need to pay until the hospital agreed to allow her to take it.
We knew something was up when they cancelled her second appointment for chemo. Thankfully we managed to get another appointment the following week but were told that because Joanna is the only person in WA with this disease the hospital will not pay for the chemo.??? (I’m doing my best on holding back on what I would really like to say)…. not happy.
Jo has been given 2 months worth of chemo tablets but is not scheduled for any ct scans or blood tests now until she finishes the next two lots of chemo tablets. She will then have her scans and we are hoping if there is any shrinkage the Doctor will then take it up with the hospital board again.
Nothing else was really said apart from if her temperature reaches over 38’ to go to an emergency department. There may be a trail coming to Sydney or Melbourne but it could be up to a year away.
I would have thought that as Jo is still running 4km each day and looks and feels great that the Doctors would be trying to help her and the simple fact she is the only person here in WA but sadly no.
My next step…. Fundraising /petition to the hospital?
If anyone has any documented research on sutent helping asps (lung mets in particular) it would be great to access the information as I can present this in the petition? Or any other recommendations, thoughts, drugs, would be greatly appreciated.
Positive thoughts x
Re: Jo from Perth Australia - Dx 2011
Mel - there is a separate thread about our experience with Sutent and related discussion:
http://www.cureasps.org/forum/viewtopic.php?f=52&t=216
do a search by the "Sunitinib Alveolar soft part sarcoma" on a Pubmed and on ASCO web-site in the meetings proceedings to see what articles abstracts look good enough to be printed and presented as supportive to your hospital board.
This one looks good to me:
Sunitinib in advanced alveolar soft part sarcoma: evidence of a direct antitumor effect.
http://www.ncbi.nlm.nih.gov/pubmed/21242589
Also contact a local Pfizer reps to request a patient assistance - Jo has no income so might very well be qualified for that:
http://www.pfizerhelpfulanswers.com/pag ... ndAll.aspx
http://www.cureasps.org/forum/viewtopic.php?f=52&t=216
do a search by the "Sunitinib Alveolar soft part sarcoma" on a Pubmed and on ASCO web-site in the meetings proceedings to see what articles abstracts look good enough to be printed and presented as supportive to your hospital board.
This one looks good to me:
Sunitinib in advanced alveolar soft part sarcoma: evidence of a direct antitumor effect.
http://www.ncbi.nlm.nih.gov/pubmed/21242589
Also contact a local Pfizer reps to request a patient assistance - Jo has no income so might very well be qualified for that:
http://www.pfizerhelpfulanswers.com/pag ... ndAll.aspx
Olga
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jo from Perth Australia - Dx 2011
Dear Mel,
Thank you for your thoughtful update on Jo. My best wishes and great Hope are with her for a very successful response to her Sutent treatment. I am surprised that scans weren't done when she completed her first cycle of the medication, but am grateful that her blood work was all fine. I am grateful too that she is feeling good and able to remain active with her running. Has she ecperienced any negative side effects from the Sutent thus far? I am sorry for all of the financial obstacles that she is experiencing in obtaining the Sutent, but Hopefully the information that Olga has provided will be helpful in the appeal and Jo will be successful in obtaining approval for financial coverage of the medication, or financial assistance from the Pfizer pharmaceutical company. Please give Jo and yourself special hugs from me, and know that you are both in my continued special caring thoughts.
With deepest caring, healing wishes for Jo, and continued Hope,
Bonni
Thank you for your thoughtful update on Jo. My best wishes and great Hope are with her for a very successful response to her Sutent treatment. I am surprised that scans weren't done when she completed her first cycle of the medication, but am grateful that her blood work was all fine. I am grateful too that she is feeling good and able to remain active with her running. Has she ecperienced any negative side effects from the Sutent thus far? I am sorry for all of the financial obstacles that she is experiencing in obtaining the Sutent, but Hopefully the information that Olga has provided will be helpful in the appeal and Jo will be successful in obtaining approval for financial coverage of the medication, or financial assistance from the Pfizer pharmaceutical company. Please give Jo and yourself special hugs from me, and know that you are both in my continued special caring thoughts.
With deepest caring, healing wishes for Jo, and continued Hope,
Bonni