Hi Everyone,
Due to insurance reasons Tom's synergy procedure has been postponed until the 27th of October. We are trying to stay focused and positive, but the thought of this in his body even a second longer than it has to be really angers us. I will post after the 27th to let you all know how he is doing.....
God bless,
Kathy
Tom from Pennsylvania - Dx 2002, RIP 2021
Re: Tom's Story
Hello Everyone,
I am very sorry for not posting sooner. It has been a bit of a tough year. The good news, Tom's lungs look good. Going to Germany was the best decision we could have made. When it came time for his routine scan the local ongologist decided to check the brain... they found a met there as well as one in the back... We were very upset to hear the spot on the L4 verterbrea had been there for at least a year. Noone had ever said anything to us. I try to look at it as a blessing, b/c if Dr. Rolle had known about the back, he would not have taken care of the lungs.... so I am finally over the anger. But we no longer rely on The Doctors to tell us everything... we read all the reports top to bottom and we call with everything that we do not understand or any term we need explained.
Our local oncologist was not sure how to procede next.... we called Dr. David Bartlett at Hillman Cancer Insistute in PItt right away and he helped us move quickly. Within 2 days we had an appointment with Dr. Flinkinger and Dr. Konziokla at UPMC. Tom had Radiosurgery on both spots. The follow up on the brain met showed slight decrease in size and the one in the back, as well as the brain again will be checked in February. The follow up on his lungs will be in March.
We send you all hope and hugs....
Tom feels pretty good. He has always worked full time, and is the most involved and amazing husband and daddy......
All the best,
Kathy
I am very sorry for not posting sooner. It has been a bit of a tough year. The good news, Tom's lungs look good. Going to Germany was the best decision we could have made. When it came time for his routine scan the local ongologist decided to check the brain... they found a met there as well as one in the back... We were very upset to hear the spot on the L4 verterbrea had been there for at least a year. Noone had ever said anything to us. I try to look at it as a blessing, b/c if Dr. Rolle had known about the back, he would not have taken care of the lungs.... so I am finally over the anger. But we no longer rely on The Doctors to tell us everything... we read all the reports top to bottom and we call with everything that we do not understand or any term we need explained.
Our local oncologist was not sure how to procede next.... we called Dr. David Bartlett at Hillman Cancer Insistute in PItt right away and he helped us move quickly. Within 2 days we had an appointment with Dr. Flinkinger and Dr. Konziokla at UPMC. Tom had Radiosurgery on both spots. The follow up on the brain met showed slight decrease in size and the one in the back, as well as the brain again will be checked in February. The follow up on his lungs will be in March.
We send you all hope and hugs....
Tom feels pretty good. He has always worked full time, and is the most involved and amazing husband and daddy......
All the best,
Kathy
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom's Story
Dear Kathy,
Thank you very much for your thoughtful update. I am so happy and encouraged that Dr. Rolle's procedure seems to have been successful in treating Tom's lung mets, but I am so deeply sorry to hear about his brain and spine mets. I share your great anger and frustration about the L4 met having been missed by the radiologist/oncologist for a year, a very similar situation to that which we devastatingly experienced with Brittany's large thoracic spinal mass which was inexcusably allowed to grow to nearly five centimeters before symptoms of upper back pain finally initiated the diagnosis. We were stunned that this could happen when we have always been extremely proactive in Brittany's treatment and care, as informed and well researched as possible, and extremely conscientious about having regular scans and in closely reviewing the scans and the radiologist report. An interim oncologist who mishandled Brittany's care for a year while a new oncologist was being hired, repeatedly dismissed our requests to personally review the scans with him as he said that they weren't yet available and/or that he was too busy, and since the radiologist reports, which we now know were totally erroneous and negligent , stated that there were no new tumors, we naiively accepted not visually looking at the scans as we had always done with the previous oncologist. In reviewing the previous year's scans following the devastating diagnosis of Brittany's spinal tumor, which was by then threatening compression of her spinal cord and paralysis, the spinal mass was clearly visible for at least six months before but had been inexcusably missed in two separate radiologist reports three months apart. Because Brittany's spinal tumor was allowed to grow so large, she has had to endure two major and very dangerous spinal resections, unsuccessful spinal radiation ( radiosurgery was not an option due to the dangerous location of the tumor which was pressing on the spinal cord), and intense, relentless, debilitating, and ongoing post op spinal pain. We also feel that the large tumor caused aggessive and extensive disease progression and metastasis because it acted like a primary tumor. We have always requested a copy of the radiologist report for our own records, but we now demand to not only personally review the scans with the oncologist, but to also receive a CD copy of the scans which we are able to review and compare at Home. Unfortunately, doctors can and do make mistakes, and these mistakes can cause serious consequences as we and you have heartbreakingly learned the hard way.
Did Tom receive Gamma Knife or Cyberknife treatment for his brain and spine mets? Will he be undergoing any kind of systemic treatment to try to stabilize the progression of the disease and prevent any new tumors? I will be holding very tight to Hope for good news results from his February brain and spine scans, and his March chest scans, and anxiously awaiting your next update. In the meantime, please take care dear Kathy and know that Tom, you, and your family are all in my most special thoughts and prayers.
With warm hugs, special caring, best wishes, and continued Hope,
Bonni Hess
Thank you very much for your thoughtful update. I am so happy and encouraged that Dr. Rolle's procedure seems to have been successful in treating Tom's lung mets, but I am so deeply sorry to hear about his brain and spine mets. I share your great anger and frustration about the L4 met having been missed by the radiologist/oncologist for a year, a very similar situation to that which we devastatingly experienced with Brittany's large thoracic spinal mass which was inexcusably allowed to grow to nearly five centimeters before symptoms of upper back pain finally initiated the diagnosis. We were stunned that this could happen when we have always been extremely proactive in Brittany's treatment and care, as informed and well researched as possible, and extremely conscientious about having regular scans and in closely reviewing the scans and the radiologist report. An interim oncologist who mishandled Brittany's care for a year while a new oncologist was being hired, repeatedly dismissed our requests to personally review the scans with him as he said that they weren't yet available and/or that he was too busy, and since the radiologist reports, which we now know were totally erroneous and negligent , stated that there were no new tumors, we naiively accepted not visually looking at the scans as we had always done with the previous oncologist. In reviewing the previous year's scans following the devastating diagnosis of Brittany's spinal tumor, which was by then threatening compression of her spinal cord and paralysis, the spinal mass was clearly visible for at least six months before but had been inexcusably missed in two separate radiologist reports three months apart. Because Brittany's spinal tumor was allowed to grow so large, she has had to endure two major and very dangerous spinal resections, unsuccessful spinal radiation ( radiosurgery was not an option due to the dangerous location of the tumor which was pressing on the spinal cord), and intense, relentless, debilitating, and ongoing post op spinal pain. We also feel that the large tumor caused aggessive and extensive disease progression and metastasis because it acted like a primary tumor. We have always requested a copy of the radiologist report for our own records, but we now demand to not only personally review the scans with the oncologist, but to also receive a CD copy of the scans which we are able to review and compare at Home. Unfortunately, doctors can and do make mistakes, and these mistakes can cause serious consequences as we and you have heartbreakingly learned the hard way.
Did Tom receive Gamma Knife or Cyberknife treatment for his brain and spine mets? Will he be undergoing any kind of systemic treatment to try to stabilize the progression of the disease and prevent any new tumors? I will be holding very tight to Hope for good news results from his February brain and spine scans, and his March chest scans, and anxiously awaiting your next update. In the meantime, please take care dear Kathy and know that Tom, you, and your family are all in my most special thoughts and prayers.
With warm hugs, special caring, best wishes, and continued Hope,
Bonni Hess
Re: Tom's Story
Dear Kathy and Tom - thank you so much for an update and a good news that Tom is doing good. I am also so happy that Tom could use the window of the opportunity to have his lung mets resected and now they do not get in the way of other mets treatment - I hate this situation when people do not get more aggressive treatment for their other mets because there are multiple lung mets and they can not get lung mets resected because there are other mets present. I guess that we will always feel that special bond after everything that we went trough together at the German hospital.
Olga.
Olga.
Olga
Re: Tom's Story
Thanks for the posts.... It helps to feel like we are not alone..... Tom had Gamma Knife on his brain met and Synergy on his back. Nonone has suggested that there is a need to pursue any other treatments right now... it is so hard to know what we should do. We want to be as pro active as possible, but it is sometimes hard to know what the right path is.
We continue to keep you all in our prayers... and Olga.... we send you and Ivan our love. We will always charish the bond we made in Germany.
Prayers and love,
Kathy
We continue to keep you all in our prayers... and Olga.... we send you and Ivan our love. We will always charish the bond we made in Germany.
Prayers and love,
Kathy
Re: Tom's Story
Kathy and Tom, best of luck to you. Do you best - this is the only thing all of us can do.
Re: Tom's Story
It looks like we will be going to Pitt on the 18th. Tom will have the Gamma Knife again for a new brain met that they found yesterday. The old met and the back both look to be responding well to the previous treaments. We continue to pray and we want you all to know how much confort we get from all of you....
God Bless,
Kathy
God Bless,
Kathy
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom's Story
Dear Kathy,
I am so sorry to hear that Tom has a new brain met, but am grateful that he will be able to have it treated with Gamma Knife, and that his previously treated brain met appears to be responding well to the Gamma Knife treatment as well as his back tumor to the Synergy radiosurgery. Please travel safe to Pittsburgh and know that my special thoughts, prayers, and best wishes will be with Tom for a successful outcome to the Gamma Knife procedure.
Heart to heart with special caring thoughts and continued Hope,
Bonni
I am so sorry to hear that Tom has a new brain met, but am grateful that he will be able to have it treated with Gamma Knife, and that his previously treated brain met appears to be responding well to the Gamma Knife treatment as well as his back tumor to the Synergy radiosurgery. Please travel safe to Pittsburgh and know that my special thoughts, prayers, and best wishes will be with Tom for a successful outcome to the Gamma Knife procedure.
Heart to heart with special caring thoughts and continued Hope,
Bonni
Re: Tom's Story
Hello Bonnie,
thank you for your reply. We are wondering if you and anyone else reading this (we consider you all to be the experts), would give us your opinion if you feel there is anything else we should be doing. The news of the latest brain met is knocking us down a bit..... Tom will be having a lung CT in March..... Any advice or info you have we would really appreciate....
Thanks for continuing to give us hope and a place where we do not feel so alone.
God Bless,
Kathy
thank you for your reply. We are wondering if you and anyone else reading this (we consider you all to be the experts), would give us your opinion if you feel there is anything else we should be doing. The news of the latest brain met is knocking us down a bit..... Tom will be having a lung CT in March..... Any advice or info you have we would really appreciate....
Thanks for continuing to give us hope and a place where we do not feel so alone.
God Bless,
Kathy
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Fictional
Re: Tom's Story
I do not know for sure there would be any benefit, But because one of the devilish natures of ASPS is that the metastases can continue to present themselves (and there can potentially be a lot of trouble depending where it shows up) over the course of years. we have been interested in systemic therapies that have the potential to reduce microscopic spread and new metastases - but also have low risk for making the situation worse or causing toxic side effects. We are not interested in agents that are immunosuppressive.
For these purposes, ARQ fit the bill - it may have no benefit or it may reduce the number of new metastases. It seems to have few side effects. In people, the longer you were on it, the fewer new metastases were seen after 3 months on the drug. In animal studies, it reduced the number of metastases by 90% (not 100% though). It is a small molecule too, so is likely to cross the blood brain barrier.
The other thing we will be trying is low dose or metronomic chemo which has shown promise in sarcomas as well as a few people with ASPS (case report, forum). It usually stabilizes disease rather than shrinks existing disease, and would probably work better if there are not large tumor masses throughout the body. The advantage of metronomic chemo is that no travel is involved and your local oncologist can prescribe it. The success rate for partial / stabilizing disease seems to be at 40% or sometimes more - as a group a better success rate than randoma investigational agents.
For these purposes, ARQ fit the bill - it may have no benefit or it may reduce the number of new metastases. It seems to have few side effects. In people, the longer you were on it, the fewer new metastases were seen after 3 months on the drug. In animal studies, it reduced the number of metastases by 90% (not 100% though). It is a small molecule too, so is likely to cross the blood brain barrier.
The other thing we will be trying is low dose or metronomic chemo which has shown promise in sarcomas as well as a few people with ASPS (case report, forum). It usually stabilizes disease rather than shrinks existing disease, and would probably work better if there are not large tumor masses throughout the body. The advantage of metronomic chemo is that no travel is involved and your local oncologist can prescribe it. The success rate for partial / stabilizing disease seems to be at 40% or sometimes more - as a group a better success rate than randoma investigational agents.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom's Story
Dear Kathy,
I am not a doctor, but based on seven and a half years of experience with this extremely rare and poorly understood disease as well as extensive research and networking with other ASPS patients, I agree with 'F' that you might want to consider some kind of a systemic treatment for Tom to try to prevent the development of any new metastatic tumors. The harsh reality of this disease is that once it has metastasized, microscopic tumors can go anywhere, and may already have, because it is a vascular disease and the tumor cells are carried and spread in the blood stream. Research has shown that surgically removing and/or destroying tumors with ablation or radiosurgery has to this point proven to be the most effective way to control ASPS. Unfortunately if a tumor develops in a place in the body where the tumor cannot be successfully resected or treated with ablation or radiosurgery procedures ( such as the inoperable tumor located at the head of our daughter's pancreas), then there may devastatingly be no options to try to remove/destroy it and prevent it from ultimately growing so large that it is Life threatening. Therefore, it is critically important to try find an effective systemic treatment to try to prevent the spread/development of the mets to inoperable areas, and to shrink/destroy any mets that are already located in inoperable areas. Brittany's doctors have made it very clear to us that it is extremely important that we find and begin an effective systemic for her due to the extremely concerning aggressive and extensive spread of her disease. We are currently exploring some of the promising new anti-angionetic treatments including Cediranib, Pazopanib, Sutent, Dasatanib, and Brivinib which we will pursue following her upcoming scheduled Cryoablation treatments in Detroit with Dr. Littrup for her three largest lung mets which we feel need to be destroyed with ablation because we are concerned that they may be too large to successfully respond to a systemic treatment. I think that following Tom's Gamma Knife treatment you should at least address and discuss with his doctors the issue of some kind of systemic treatment for him which can cross the blood brain barriar. In the meantime, please take care dear Kathy and know that my continued caring thoughts, best wishes, and special prayers will be with Tom and your family.
Heart to heart with special caring and continued Hope,
Bonni
I am not a doctor, but based on seven and a half years of experience with this extremely rare and poorly understood disease as well as extensive research and networking with other ASPS patients, I agree with 'F' that you might want to consider some kind of a systemic treatment for Tom to try to prevent the development of any new metastatic tumors. The harsh reality of this disease is that once it has metastasized, microscopic tumors can go anywhere, and may already have, because it is a vascular disease and the tumor cells are carried and spread in the blood stream. Research has shown that surgically removing and/or destroying tumors with ablation or radiosurgery has to this point proven to be the most effective way to control ASPS. Unfortunately if a tumor develops in a place in the body where the tumor cannot be successfully resected or treated with ablation or radiosurgery procedures ( such as the inoperable tumor located at the head of our daughter's pancreas), then there may devastatingly be no options to try to remove/destroy it and prevent it from ultimately growing so large that it is Life threatening. Therefore, it is critically important to try find an effective systemic treatment to try to prevent the spread/development of the mets to inoperable areas, and to shrink/destroy any mets that are already located in inoperable areas. Brittany's doctors have made it very clear to us that it is extremely important that we find and begin an effective systemic for her due to the extremely concerning aggressive and extensive spread of her disease. We are currently exploring some of the promising new anti-angionetic treatments including Cediranib, Pazopanib, Sutent, Dasatanib, and Brivinib which we will pursue following her upcoming scheduled Cryoablation treatments in Detroit with Dr. Littrup for her three largest lung mets which we feel need to be destroyed with ablation because we are concerned that they may be too large to successfully respond to a systemic treatment. I think that following Tom's Gamma Knife treatment you should at least address and discuss with his doctors the issue of some kind of systemic treatment for him which can cross the blood brain barriar. In the meantime, please take care dear Kathy and know that my continued caring thoughts, best wishes, and special prayers will be with Tom and your family.
Heart to heart with special caring and continued Hope,
Bonni
Re: Tom's Story
Hello Everyone,
Thank you so much for your advice. We are going to meet with Tom's local oncologist in 2 weeks.... his next Lung scan is the 5th of March. He seems to be doing really well after the Gamma Knife that he had done on Wednesday. He had a little headache, but that was all. We praise God that everything went well. They are going to do a Brain MRI in 2 months. At that time I assume they will check the back as well.
I have been gathering all the info you have all given and agree that we need to be doing something. Often we get the advice that we just need to wait and see, and check him often, and if something shows up, we go and in and get it. My fear is that it will show up somewhere where they can't...It is hard b/c for the most part Tom feels pretty good. He hated being on the trials in the past... hated how he felt and how it affected his life... so maybe with some of the treatments you suggested the side effects would not be as bad...... I pray we find the right answers and that Tom and all of us here on the site and put this past us.....
God Bless you all. You give knowledge, Hope, Love and Courage to so many.....
Thanks for taking the time to help us get Daddy better:)
Kathy
Thank you so much for your advice. We are going to meet with Tom's local oncologist in 2 weeks.... his next Lung scan is the 5th of March. He seems to be doing really well after the Gamma Knife that he had done on Wednesday. He had a little headache, but that was all. We praise God that everything went well. They are going to do a Brain MRI in 2 months. At that time I assume they will check the back as well.
I have been gathering all the info you have all given and agree that we need to be doing something. Often we get the advice that we just need to wait and see, and check him often, and if something shows up, we go and in and get it. My fear is that it will show up somewhere where they can't...It is hard b/c for the most part Tom feels pretty good. He hated being on the trials in the past... hated how he felt and how it affected his life... so maybe with some of the treatments you suggested the side effects would not be as bad...... I pray we find the right answers and that Tom and all of us here on the site and put this past us.....
God Bless you all. You give knowledge, Hope, Love and Courage to so many.....
Thanks for taking the time to help us get Daddy better:)
Kathy
Re: Tom's Story
Hello Everyone,
It has been some time and I thought I would post and let everyone know how Tom is doing. His last lung scan showed a met in the upper left lobe. As for the brain and back, they both look good. One of the brain mets is gone and the other is half the size it was. The back looks smaller as well. The spot in his lung is small, and we are not sure how we will proceed from here. We are meeting with Dr. Burton at UPMC next week to discuss Cyber Knife on the lung met - I haven't heard a lot about this so we are eager to hear what he has to say. We have also sent his scans to Dr. Littrup as well and we are waiting to hear back from him.
We will continue to keep everyone posted. You are all such an inspiration to us and we thank God everyday for this site and for connecting with all of you. Even if we are not posting, we are reading and praying..... I sometimes find it difficult to post - it makes this all so real and even though it has been 7 years, I still find us "pretending" we are normal....... It does not seem to get easier does it?
With prayers and love for you all,
Kathy
It has been some time and I thought I would post and let everyone know how Tom is doing. His last lung scan showed a met in the upper left lobe. As for the brain and back, they both look good. One of the brain mets is gone and the other is half the size it was. The back looks smaller as well. The spot in his lung is small, and we are not sure how we will proceed from here. We are meeting with Dr. Burton at UPMC next week to discuss Cyber Knife on the lung met - I haven't heard a lot about this so we are eager to hear what he has to say. We have also sent his scans to Dr. Littrup as well and we are waiting to hear back from him.
We will continue to keep everyone posted. You are all such an inspiration to us and we thank God everyday for this site and for connecting with all of you. Even if we are not posting, we are reading and praying..... I sometimes find it difficult to post - it makes this all so real and even though it has been 7 years, I still find us "pretending" we are normal....... It does not seem to get easier does it?
With prayers and love for you all,
Kathy
Re: Tom's Story
Hey Kathy
Hopefully Tom is doing alright. I see intermittent Facebook updates and stuff. Could you post an update for the benefit of everyone?
Regarding your last post, I just had cryoablation done by Dr. Littrup. It's so awesome! Since I only had ONE growing, no thoracotomy for me
Hopefully Tom is doing alright. I see intermittent Facebook updates and stuff. Could you post an update for the benefit of everyone?
Regarding your last post, I just had cryoablation done by Dr. Littrup. It's so awesome! Since I only had ONE growing, no thoracotomy for me
Re: Tom's Story
Hello Everyone!
Thanks for the email Ivan! Tom is doing alright. I am eager to hear more about your experience with the cryoablation... I have been in contact with Dr. Littrup myself.
Tom has been followed every 3 mo with scans. His last met was treated in January at the L4. He had radiosurgery done on it 2x but we just learned today that it did not work again and the tumor has grown. We are going down to Pitt next week to meet with his Dr. to discuss it further.
I would appreciate any ideas or advice you might have. He is having a brain mri tomorrow - I pray that is clear! His lungs looked good at his last check.
I think of you all everyday... you always have our prayers!
kath
Thanks for the email Ivan! Tom is doing alright. I am eager to hear more about your experience with the cryoablation... I have been in contact with Dr. Littrup myself.
Tom has been followed every 3 mo with scans. His last met was treated in January at the L4. He had radiosurgery done on it 2x but we just learned today that it did not work again and the tumor has grown. We are going down to Pitt next week to meet with his Dr. to discuss it further.
I would appreciate any ideas or advice you might have. He is having a brain mri tomorrow - I pray that is clear! His lungs looked good at his last check.
I think of you all everyday... you always have our prayers!
kath