I am pissed at her radiologist also. Better not mention any names.
I will pray for her quick recovery. I know this is probably a stupid question, but has it been confirmed to be ASPS. That still seems to be rapid growth for ASPS.
God bless and take care,
Scott
Brittany from Washington - Dx 2001
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Dear ASPS Community Friends,
I would first of all like to thank all of you who have written to express your special caring, support, and encouragement and to share your helpful insights and information. After emergency consultations with two different highly regarded Seattle spinal surgeons, one an orthopedic and one a neuro, Brittany underwent emergency surgery at the University of Washington Hospital on last Monday, May 5th to resect her large spinal muscle tumor which was dangerously close to compressing her spinal cord. Prior to the resection, a vascular embolization was done to cut off the blood supply to the highly vascular tumor. The excellent spinal neurosurgeon, Dr. Trent Tredway, was able to resect "almost all" of the tumor along with a large amount of muscle to try to ensure the best margins, without having to remove any vertebrae which thankfully prevented the need for instrumentation with rods, screws, and a spinal fusion. He felt that the risk of paralysis was not worth trying to get all of the tumor out from between the vertebrae, with the Hope that post-op Proton radiation will be able to successfully completely destroy the very small amount of remaining tumor. We are of course extremely worried and nervous about there being any remaining tumor given the radiation resistant nature of this insidious disease, but we are holding tight to Hope that the small amount of tumor that is left can be successfully killed by the radiation. This was an extremely difficult, dangerous, and painful surgery, and we are deeply grateful for the relatively good outcome given all of the very serious possible risks. Heartbreakingly, but not unexpectedly due to the size and location of the incision and the large amount of muscle that was removed, Brittany suffered severe post-op pain, but, as always, she is amazing everyone including the doctors, nurses and physical therapists with her rapid recovery and she was discharged from the hospital on Saturday. This is Brittany's fifteenth surgery/invasive procedure in her almost seven year battle with this very challenging disease, and we continue to be deeply humbled and in awe of her continued incredible strength, courage, and resiliency. She will have to wait at least two weeks for the incision to heal before radiation can be started, and then the radiation in itself will pose some very serious short term and long term risks due to the necessary close proximity of the radiation treatment to the spinal cord. Unfortunately, because of the emergency nature of the surgery there was not enough time to coordinate the donation of the fresh tumor to the vitally important ASPS research, but we are making arrangements to donate the preserved tumor. I will keep the Web site updated, and will Hopefully be able to share good news about successful results of the radiation treatment. In the meantime, please take care everyone and keep in touch with the Web site as you are able.
With my deepest gratitude for all of your strengthening support, and with special caring thoughts for everyone and continued Hope,
Bonni
I would first of all like to thank all of you who have written to express your special caring, support, and encouragement and to share your helpful insights and information. After emergency consultations with two different highly regarded Seattle spinal surgeons, one an orthopedic and one a neuro, Brittany underwent emergency surgery at the University of Washington Hospital on last Monday, May 5th to resect her large spinal muscle tumor which was dangerously close to compressing her spinal cord. Prior to the resection, a vascular embolization was done to cut off the blood supply to the highly vascular tumor. The excellent spinal neurosurgeon, Dr. Trent Tredway, was able to resect "almost all" of the tumor along with a large amount of muscle to try to ensure the best margins, without having to remove any vertebrae which thankfully prevented the need for instrumentation with rods, screws, and a spinal fusion. He felt that the risk of paralysis was not worth trying to get all of the tumor out from between the vertebrae, with the Hope that post-op Proton radiation will be able to successfully completely destroy the very small amount of remaining tumor. We are of course extremely worried and nervous about there being any remaining tumor given the radiation resistant nature of this insidious disease, but we are holding tight to Hope that the small amount of tumor that is left can be successfully killed by the radiation. This was an extremely difficult, dangerous, and painful surgery, and we are deeply grateful for the relatively good outcome given all of the very serious possible risks. Heartbreakingly, but not unexpectedly due to the size and location of the incision and the large amount of muscle that was removed, Brittany suffered severe post-op pain, but, as always, she is amazing everyone including the doctors, nurses and physical therapists with her rapid recovery and she was discharged from the hospital on Saturday. This is Brittany's fifteenth surgery/invasive procedure in her almost seven year battle with this very challenging disease, and we continue to be deeply humbled and in awe of her continued incredible strength, courage, and resiliency. She will have to wait at least two weeks for the incision to heal before radiation can be started, and then the radiation in itself will pose some very serious short term and long term risks due to the necessary close proximity of the radiation treatment to the spinal cord. Unfortunately, because of the emergency nature of the surgery there was not enough time to coordinate the donation of the fresh tumor to the vitally important ASPS research, but we are making arrangements to donate the preserved tumor. I will keep the Web site updated, and will Hopefully be able to share good news about successful results of the radiation treatment. In the meantime, please take care everyone and keep in touch with the Web site as you are able.
With my deepest gratitude for all of your strengthening support, and with special caring thoughts for everyone and continued Hope,
Bonni
Re:
How is she doing now?Bonni Hess wrote:Dear ASPS Community Friends,
I would first of all like to thank all of you who have written to express your special caring, support, and encouragement and to share your helpful insights and information. After emergency consultations with two different highly regarded Seattle spinal surgeons, one an orthopedic and one a neuro, Brittany underwent emergency surgery at the University of Washington Hospital on last Monday, May 5th to resect her large spinal muscle tumor which was dangerously close to compressing her spinal cord. Prior to the resection, a vascular embolization was done to cut off the blood supply to the highly vascular tumor. The excellent spinal neurosurgeon, Dr. Trent Tredway, was able to resect "almost all" of the tumor along with a large amount of muscle to try to ensure the best margins, without having to remove any vertebrae which thankfully prevented the need for instrumentation with rods, screws, and a spinal fusion. He felt that the risk of paralysis was not worth trying to get all of the tumor out from between the vertebrae, with the Hope that post-op Proton radiation will be able to successfully completely destroy the very small amount of remaining tumor. We are of course extremely worried and nervous about there being any remaining tumor given the radiation resistant nature of this insidious disease, but we are holding tight to Hope that the small amount of tumor that is left can be successfully killed by the radiation. This was an extremely difficult, dangerous, and painful surgery, and we are deeply grateful for the relatively good outcome given all of the very serious possible risks. Heartbreakingly, but not unexpectedly due to the size and location of the incision and the large amount of muscle that was removed, Brittany suffered severe post-op pain, but, as always, she is amazing everyone including the doctors, nurses and physical therapists with her rapid recovery and she was discharged from the hospital on Saturday. This is Brittany's fifteenth surgery/invasive procedure in her almost seven year battle with this very challenging disease, and we continue to be deeply humbled and in awe of her continued incredible strength, courage, and resiliency. She will have to wait at least two weeks for the incision to heal before radiation can be started, and then the radiation in itself will pose some very serious short term and long term risks due to the necessary close proximity of the radiation treatment to the spinal cord. Unfortunately, because of the emergency nature of the surgery there was not enough time to coordinate the donation of the fresh tumor to the vitally important ASPS research, but we are making arrangements to donate the preserved tumor. I will keep the Web site updated, and will Hopefully be able to share good news about successful results of the radiation treatment. In the meantime, please take care everyone and keep in touch with the Web site as you are able.
With my deepest gratitude for all of your strengthening support, and with special caring thoughts for everyone and continued Hope,
Bonni
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Brittany's devastating increased disease progression
Dear ASPS Community Friends,
Brittany is continuing to heal well from her May 5th spinal muscle tumor resection, although she is still suffering constant pain from the removal of so much muscle and the large size of the incision which continues to restrict her ability to bend, lift, or twist, but has not deterred her from continuing her very active Life style and passion for Living each day to the fullest. Because the surgeon was heartbreakingly unable to completely safely remove all of the spinal tumor without risk of paralysis, we are now exploring other treatment options to try to destroy the remaining tumor which has intruded into the vertebrae and is perilously close to the spinal cord, which greatly complicates radiation treatment because of the paralysis risks. The radiation oncologist has recommended standard photon radiation treatment (apparently the more powerful and more effective proton and neutron radiation are too dangerous to use due to the dangerously close location of the remaining tumor to the spinal cord), but after doing more research, we have decided to pursue the possibility of using Cyberknife Radiosurgery which according to the information which we've read can be safely used to treat spinal tumors because it is very focussed radiation which can be directed away from harming the spine itself. Cyberknife is not available at the University of Washington where Brittany's radiation oncologist practices ( which may be the reason why it was not offered to us), but it is newly available since February at Swedish Hospital in Seattle, as well as being in use at several other locations in the United States. Additionally and very devastatingly, we are now facing immense new challenges with the tragic news that we received from the results of Brittany's last Wednesday's ( May 21st) brain MRI, chest, abdominal, and pelvic CT's, and bone scan. The scans showed three new brain mets which were not visible in her February 26th brain MRI (thus the critical importance of having brain MRI's every three months if you have had prior brain mets!) Thankfully, because they were just found, the mets are relatively small with the largest one being about five millimeters. They are all located on the right side of the brain with one in the right parietal lobe, one in the right temporal lobe, and one in the right frontal lobe. Because of their deep locations, surgical removal is unfortunately not a very viable option without causing serious deficits and a large loss of brain tissue, so we will be trying Gamma Knife again which devastatingly was unsuccessful in the treatment of Brittany's larger left parietal and cerebellum tumors in October 2004 ( ultimately she had the two tumors successfully resected in March 2005, but she heartbreakingly lost her peripheral vision as a result of the deep location of the parietal tumor). We are praying and holding tight to Hope that the Gamma Knife will be successful this time due to the smaller size of the tumors, and since other ASPS patients who have undergone treatment with Gamma Knife for smaller mets have had a successful response. Because ASPS brain mets typically grow much faster than ASPS mets in other areas of the body, and to try to ensure the best chance of a successful response, Brittany will be undergoing the Gamma Knife treatment at Harborview Hospital in Seattle as soon as all of the arrangements have been made, hopefully within the next week or two. As if all of this is not enough. the scans also revealed a small new met in her abdomen and one in her chest wall, as well as several new ones in her lungs. Fortunately, the abdominal and chest wall tumors are quite small and, according to the surgeon, easily resectable, so we will have them resected after we have dealt with the much more pressing brain and spinal tumor issues. Needless to say, we are all stunned, devastated, and profoundly worried about all of the new tumors and the obvious rapid and extensive progression of this insidious disease, but we are determined to continue to fight it with all of the strength and resources we have and every possible weapon that we can find. It has become painfully obvious to us that the GVAX Immunotherapy Vaccine appears to have been heartbreakingly unsuccessful, at least for many of the patients, based on Brittany's and another Clincial Trial patient's continued disease progression, as well as the tragic loss of at least three other ASPS patients who we know of that participated in the Trial at the same time as Brittany in the Winter and Spring of 2006. We desperately need an effective systemic treatment and cure, and will be considering participation in the promising ARQ-197 Clinical Trial, but the protocol for that Trial requires that a patient be free of brain mets and out of treatment for three months, so this is not an option right now. I will try to keep this Web site updated as my time and the situation allow, and will prayerfully be able to share better news in my next update. In the meantime, please take care everyone and know how deeply appreciated all of your special caring, strengthening support and encouragement, and valuable information sharing are.
With an aching heart heavily burdened with immense sorrow and worry, but still holding tight to continued Hope,
Bonni
Brittany is continuing to heal well from her May 5th spinal muscle tumor resection, although she is still suffering constant pain from the removal of so much muscle and the large size of the incision which continues to restrict her ability to bend, lift, or twist, but has not deterred her from continuing her very active Life style and passion for Living each day to the fullest. Because the surgeon was heartbreakingly unable to completely safely remove all of the spinal tumor without risk of paralysis, we are now exploring other treatment options to try to destroy the remaining tumor which has intruded into the vertebrae and is perilously close to the spinal cord, which greatly complicates radiation treatment because of the paralysis risks. The radiation oncologist has recommended standard photon radiation treatment (apparently the more powerful and more effective proton and neutron radiation are too dangerous to use due to the dangerously close location of the remaining tumor to the spinal cord), but after doing more research, we have decided to pursue the possibility of using Cyberknife Radiosurgery which according to the information which we've read can be safely used to treat spinal tumors because it is very focussed radiation which can be directed away from harming the spine itself. Cyberknife is not available at the University of Washington where Brittany's radiation oncologist practices ( which may be the reason why it was not offered to us), but it is newly available since February at Swedish Hospital in Seattle, as well as being in use at several other locations in the United States. Additionally and very devastatingly, we are now facing immense new challenges with the tragic news that we received from the results of Brittany's last Wednesday's ( May 21st) brain MRI, chest, abdominal, and pelvic CT's, and bone scan. The scans showed three new brain mets which were not visible in her February 26th brain MRI (thus the critical importance of having brain MRI's every three months if you have had prior brain mets!) Thankfully, because they were just found, the mets are relatively small with the largest one being about five millimeters. They are all located on the right side of the brain with one in the right parietal lobe, one in the right temporal lobe, and one in the right frontal lobe. Because of their deep locations, surgical removal is unfortunately not a very viable option without causing serious deficits and a large loss of brain tissue, so we will be trying Gamma Knife again which devastatingly was unsuccessful in the treatment of Brittany's larger left parietal and cerebellum tumors in October 2004 ( ultimately she had the two tumors successfully resected in March 2005, but she heartbreakingly lost her peripheral vision as a result of the deep location of the parietal tumor). We are praying and holding tight to Hope that the Gamma Knife will be successful this time due to the smaller size of the tumors, and since other ASPS patients who have undergone treatment with Gamma Knife for smaller mets have had a successful response. Because ASPS brain mets typically grow much faster than ASPS mets in other areas of the body, and to try to ensure the best chance of a successful response, Brittany will be undergoing the Gamma Knife treatment at Harborview Hospital in Seattle as soon as all of the arrangements have been made, hopefully within the next week or two. As if all of this is not enough. the scans also revealed a small new met in her abdomen and one in her chest wall, as well as several new ones in her lungs. Fortunately, the abdominal and chest wall tumors are quite small and, according to the surgeon, easily resectable, so we will have them resected after we have dealt with the much more pressing brain and spinal tumor issues. Needless to say, we are all stunned, devastated, and profoundly worried about all of the new tumors and the obvious rapid and extensive progression of this insidious disease, but we are determined to continue to fight it with all of the strength and resources we have and every possible weapon that we can find. It has become painfully obvious to us that the GVAX Immunotherapy Vaccine appears to have been heartbreakingly unsuccessful, at least for many of the patients, based on Brittany's and another Clincial Trial patient's continued disease progression, as well as the tragic loss of at least three other ASPS patients who we know of that participated in the Trial at the same time as Brittany in the Winter and Spring of 2006. We desperately need an effective systemic treatment and cure, and will be considering participation in the promising ARQ-197 Clinical Trial, but the protocol for that Trial requires that a patient be free of brain mets and out of treatment for three months, so this is not an option right now. I will try to keep this Web site updated as my time and the situation allow, and will prayerfully be able to share better news in my next update. In the meantime, please take care everyone and know how deeply appreciated all of your special caring, strengthening support and encouragement, and valuable information sharing are.
With an aching heart heavily burdened with immense sorrow and worry, but still holding tight to continued Hope,
Bonni
Last edited by Bonni Hess on Sat May 31, 2008 10:20 am, edited 1 time in total.
With special caring thoughts and continued Hope,
Bonni Hess
Bonni Hess
-
Fictional
Re: Brittany's devastating increased disease progression
Bonni, we are praying fervently for you.
When we were conducting our search, the most promising agents seemed to be VEGF and Met inhibitors, although there is also some promise from perifosine and also possibly celebrex. I wouldn't necessarily rule out a medication because it only seems to cause disease stability. In ASPS the studies need to be carried out longer of course, but for instance, there is some evidence that some of the drugs that induce stability only (rather than tumor death), reduce the occurence of metastatic spread or appearance of new lesions.
With brain metastases, VEGF inhibitors or receptor blockers would probably be dangerous because of the bleeding risk. Talk this over with your doctor if you want to consider.
You are right to pursue surgical resection and other modalities first to attack the dangerous tumors. If you can reduce her total tumor burden, other therapies may be more effective. From what I have heard about ARQ197, I don't believe it's necessarily a slam dunk (i.e. all tumors melt away), but as one of 'K''s doctors said, you want to kill off any microscopic metastases before they appear in new places (the ones you don't see) - and with the activity of Brittany's disease, a systemic agent might be important to look for after her immediate challenges are addressed.
Also even if you are excluded from ARQ197 for now, there are other met inhibitors in trials of "advanced solid tumors" - and these might be worth investigating. We only landed on ARQ197 because they were farther along in their studies and we got shut out of XL880.
If you find possibly promising drugs, you might consider contacting clinical trial coordinators for more info (e.g. by phone or email). Our experience was that even for ARQ, which went pretty quickly, it still took 2 months or so to get things approved through IRB, etc. Our first inquiry about ARQ took place in December, although we only entered the trial this month.
'F'
When we were conducting our search, the most promising agents seemed to be VEGF and Met inhibitors, although there is also some promise from perifosine and also possibly celebrex. I wouldn't necessarily rule out a medication because it only seems to cause disease stability. In ASPS the studies need to be carried out longer of course, but for instance, there is some evidence that some of the drugs that induce stability only (rather than tumor death), reduce the occurence of metastatic spread or appearance of new lesions.
With brain metastases, VEGF inhibitors or receptor blockers would probably be dangerous because of the bleeding risk. Talk this over with your doctor if you want to consider.
You are right to pursue surgical resection and other modalities first to attack the dangerous tumors. If you can reduce her total tumor burden, other therapies may be more effective. From what I have heard about ARQ197, I don't believe it's necessarily a slam dunk (i.e. all tumors melt away), but as one of 'K''s doctors said, you want to kill off any microscopic metastases before they appear in new places (the ones you don't see) - and with the activity of Brittany's disease, a systemic agent might be important to look for after her immediate challenges are addressed.
Also even if you are excluded from ARQ197 for now, there are other met inhibitors in trials of "advanced solid tumors" - and these might be worth investigating. We only landed on ARQ197 because they were farther along in their studies and we got shut out of XL880.
If you find possibly promising drugs, you might consider contacting clinical trial coordinators for more info (e.g. by phone or email). Our experience was that even for ARQ, which went pretty quickly, it still took 2 months or so to get things approved through IRB, etc. Our first inquiry about ARQ took place in December, although we only entered the trial this month.
'F'
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Brittany's Gamma Knife procedure
Dear ASPS Community Friends,
Yesterday morning Brittany underwent a Gamma Knife procedure to treat her recently diagnosed brain mets. She courageously endured the very painful attachment of the immobilizing frame on her head which is done while the patient is sedated, but conscious, and then she was taken for a pre-procedure MRI which is able to detect even smaller mets than the regular MRI because the head is completely immobilized from any movement by the attached frame. Heartbreakingly, the MRI revealed another met in the frontal lobe. The bad news is that there was another tumor, but the good news is that it was found at a very small size and was able to be Gamma Knifed along with the other three previously diagnosed tumors. Following the two and a half hours of Gamma Knife treatment in which all four tumors were targeted and treated, Brittany was discharged to go home with only two small band aids on her forehead to cover the front pinholes where the frame was attached. We will not know if the procedure was successful in killing the tumors for several months during which time Brittany will be closely followed with frequent scans and check ups to determine if the tumors are showing signs of necrosis and shrinkage. We are holding very tight to Hope that the tumors were small enough to have a completely successful response to the Gamma Knife radiation, and that Brittany will not experience the extremely painful and debilitating headaches from post Gamma Knife brain swelling and edema that she did with her first Gamma Knife treatment in October 2004, which thus necessitated the long term high dosage Decadron steroid treatment regimen which caused so many very adverse and devastating side effects. Our next priority is to address the issue of the small amount of unresected spinal tumor, which we may treat with a combination of Cyberknife and standard proton radiation depending on the final recommendation from the radiation oncologists who we are consulting with for the best possible option for a successful response and outcome. As always, I will try to keep the Web site updated when there is more information to share, and as my time and situation allow. In the meantime, Brittany's spirit and attitude continue to be very strong and positive, and she is determined to continue to fight this monstrous disease, and to win this extremely challenging battle. Please take care everyone, and keep the Web site updated with your own personal information as shared information truly provides all of us with some of our most powerful weapons for fighting this cruel cancer.
With special caring thoughts and continued Hope,
Bonni
Yesterday morning Brittany underwent a Gamma Knife procedure to treat her recently diagnosed brain mets. She courageously endured the very painful attachment of the immobilizing frame on her head which is done while the patient is sedated, but conscious, and then she was taken for a pre-procedure MRI which is able to detect even smaller mets than the regular MRI because the head is completely immobilized from any movement by the attached frame. Heartbreakingly, the MRI revealed another met in the frontal lobe. The bad news is that there was another tumor, but the good news is that it was found at a very small size and was able to be Gamma Knifed along with the other three previously diagnosed tumors. Following the two and a half hours of Gamma Knife treatment in which all four tumors were targeted and treated, Brittany was discharged to go home with only two small band aids on her forehead to cover the front pinholes where the frame was attached. We will not know if the procedure was successful in killing the tumors for several months during which time Brittany will be closely followed with frequent scans and check ups to determine if the tumors are showing signs of necrosis and shrinkage. We are holding very tight to Hope that the tumors were small enough to have a completely successful response to the Gamma Knife radiation, and that Brittany will not experience the extremely painful and debilitating headaches from post Gamma Knife brain swelling and edema that she did with her first Gamma Knife treatment in October 2004, which thus necessitated the long term high dosage Decadron steroid treatment regimen which caused so many very adverse and devastating side effects. Our next priority is to address the issue of the small amount of unresected spinal tumor, which we may treat with a combination of Cyberknife and standard proton radiation depending on the final recommendation from the radiation oncologists who we are consulting with for the best possible option for a successful response and outcome. As always, I will try to keep the Web site updated when there is more information to share, and as my time and situation allow. In the meantime, Brittany's spirit and attitude continue to be very strong and positive, and she is determined to continue to fight this monstrous disease, and to win this extremely challenging battle. Please take care everyone, and keep the Web site updated with your own personal information as shared information truly provides all of us with some of our most powerful weapons for fighting this cruel cancer.
With special caring thoughts and continued Hope,
Bonni
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany's devastating increased disease progression
Dear ASPS Community Friends,
I am sorry to have not udated the Web site recently, but all of our time and energy has been required to fight Brittany's heartbreaking continued disease progression. Devastatingly, despite three weeks of intensive photon spinal radiation, Brittany's remaining spinal tumor continued to rapidly and aggressively grow up and down her spinal canal, pushing against the spinal cord and threatening certain paralysis in a few weeks if the tumor wasn't removed as soon as possible. On Thursday, August 7th Brittany underwent her second major spinal surgery in three months. Despite a possible risk of paralysis from the surgery itself, and the anticipated need to remove several vertebrae and replace them with debilitating and immobilizing instrumentation and spinal fusion, the surgery thankfully went much better than expected and Brittany's excellent neurosurgeon thinks that he successfully removed all of the visible tumor along the spinal canal. He removed the posterior 1/3 of the vertebrae bone from C5 to T6 and was then able to re-sect the tumor in the spinal canal and remove the pressure on the spinal cord. He said that her bones are fortunately very hard, and that he thinks with 2/3rds of the bone intact, she will be able to have full mobility and support without instrumentation. Further good news is that the void in her spinal muscle from the tumor re-section of May 5th was NOT filled with new growth cancer as was frighteningly suspected in the MRI and PET scan, but instead a fluid, which he drained. Brittany amazed everyone by her strong determination to rapidly decrease her high dose post op IV pain meds in Intensive Care so that she could be discharged directly from her 6 day stay in Intensive Care to come Home to recover instead of spending more time in the hospital on the regular floor. She is still experiencing severe post-op pain from this extremely painful surgery, but she is dealing with the pain with her usual incredible courage and perseverance. The challenging news is that there is still unresectable tumor in the pleura along her lung wall which we need to find an effective treatment for. She also has a small abdominal met and chest wall met which we are in the process of trying to schedule resection for hopefully sometime within the next two weeks when she has recovered sufficiently from her spinal surgery. The surgeon thinks that these two mets can be fairly easily removed because they are both close to the surface and not embedded in the muscle tissue. Brittany also has several lung mets in both lungs. We are desperately searching for an effective systemic treatment to try to destroy the tumor in the pleura and prevent or at least stabilize the metastatic disease progression. We are aggressivley working on the quest for that treatment now and are considering a Pfizer C-met inhibitor Clincal Trial currently being offered at Dana Farber. I will try to keep the Web site updated on the outcome of Brittany's upcoming abdominal and chest wall surgeries, as well as our systemic treatment decision and plans. In the meantime, please take care dear friends, enjoy the remaining summertime, and keep in touch with the Web site as you are able.
With special caring thoughts and continued Hope,
Bonni
I am sorry to have not udated the Web site recently, but all of our time and energy has been required to fight Brittany's heartbreaking continued disease progression. Devastatingly, despite three weeks of intensive photon spinal radiation, Brittany's remaining spinal tumor continued to rapidly and aggressively grow up and down her spinal canal, pushing against the spinal cord and threatening certain paralysis in a few weeks if the tumor wasn't removed as soon as possible. On Thursday, August 7th Brittany underwent her second major spinal surgery in three months. Despite a possible risk of paralysis from the surgery itself, and the anticipated need to remove several vertebrae and replace them with debilitating and immobilizing instrumentation and spinal fusion, the surgery thankfully went much better than expected and Brittany's excellent neurosurgeon thinks that he successfully removed all of the visible tumor along the spinal canal. He removed the posterior 1/3 of the vertebrae bone from C5 to T6 and was then able to re-sect the tumor in the spinal canal and remove the pressure on the spinal cord. He said that her bones are fortunately very hard, and that he thinks with 2/3rds of the bone intact, she will be able to have full mobility and support without instrumentation. Further good news is that the void in her spinal muscle from the tumor re-section of May 5th was NOT filled with new growth cancer as was frighteningly suspected in the MRI and PET scan, but instead a fluid, which he drained. Brittany amazed everyone by her strong determination to rapidly decrease her high dose post op IV pain meds in Intensive Care so that she could be discharged directly from her 6 day stay in Intensive Care to come Home to recover instead of spending more time in the hospital on the regular floor. She is still experiencing severe post-op pain from this extremely painful surgery, but she is dealing with the pain with her usual incredible courage and perseverance. The challenging news is that there is still unresectable tumor in the pleura along her lung wall which we need to find an effective treatment for. She also has a small abdominal met and chest wall met which we are in the process of trying to schedule resection for hopefully sometime within the next two weeks when she has recovered sufficiently from her spinal surgery. The surgeon thinks that these two mets can be fairly easily removed because they are both close to the surface and not embedded in the muscle tissue. Brittany also has several lung mets in both lungs. We are desperately searching for an effective systemic treatment to try to destroy the tumor in the pleura and prevent or at least stabilize the metastatic disease progression. We are aggressivley working on the quest for that treatment now and are considering a Pfizer C-met inhibitor Clincal Trial currently being offered at Dana Farber. I will try to keep the Web site updated on the outcome of Brittany's upcoming abdominal and chest wall surgeries, as well as our systemic treatment decision and plans. In the meantime, please take care dear friends, enjoy the remaining summertime, and keep in touch with the Web site as you are able.
With special caring thoughts and continued Hope,
Bonni
-
Fictional
Re: Brittany's devastating increased disease progression
Great news, Bonni!
Thanks for sharing. We have been keeping Brittany and your whole family in our prayers.
Thanks for sharing. We have been keeping Brittany and your whole family in our prayers.
Re: Brittany's devastating increased disease progression
Bonni, this is a huge relief to know that the surgery went well and that the growth was not that fast as it was suspected although there was a growth along the spinal column. Regarding the met in the pleura - I know a few cases with other sarcomas when the met in pleura was successfully ablated by RFA, if I remember correctly in one case the size was 4 cm (40 mm)and it did not preclude for it to be completely ablated. Is the chest wall/rib involved?
Olga
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany's devastating increased disease progression
Dear ASPS Community Friends,
It is with numbing shock and deepest heartbreak that we recently received the devastating news that Brittany has now developed a one centimeter met at the head of her pancreas. Our extensive research has found that it is extremely rare for any kind of metastatic cancer to metastasize to the pancreas, and we have only been able to find information about one case of ASPS having done so. Because of the extremely dangerous location of Brittany's pancreatic met at the head of the pancreas ( as opposed to the tail or body of the pancreas), resection and RFA are not viable treatment options due to the high mortality risk of those procedures. The only treatment option at this time is Cyberknife, but heartbreakingly, the insurance company has denied our request for this treatment because they say that it is an unproven treatment. However, we have, with Olga's invaluable help and dedicated research, found data of successful treatment outcomes of Cyberknife treatment for malignant melanoma pancreatic mets located at the head of the pancreas. Because ASPS has been closely linked to malignant melanoma because of some biological similarities, we feel that Cyberknife could also be effective in killing Brittany's pancreatic met, and we are appealing the insurance company's denial on this basis. In the meantime, we have enrolled Brittany in the ARQ197 Clinical Trial ( please see my today's entry in the ARQ197 Clinical Trial topic on this forum) in Hopes that the medication will be able to shrink/kill Brittany's multiple mets and stabilize the progression of her disease. Thankfully, this week's Trial screening brain MRI showed no new brain mets and possible shrinkage/necrosis of her four brain mets which were Gamma Knifed in May. The status of her recently resected cervical and thoracic spinal tumor was unclear from the PET/CT scan and we are now awaiting the transcribed results of the radiologist report. Of additional great concern is the inexplicable explosion of lung mets since Brittany's lung RFA in January, and the growing together of some of the mets into two large clusters of cells. We are very perplexed about this rapid growth of lung mets since at the time of her January RFA we were told that only five mets were visible that were then RFA'd. We are now concerned/suspicious that the RFA procedure may have actually possibly seeded all of the new lung mets, but we have no way of determining if this is what happened. Devastatingly, resection/ablation/ standard radiation are not treatment options for some of Brittany's mets, and she needs an effective systemic treatment to shrink/destroy her existing mets and to prevent the development of any new ones. We are holding very tight to Hope that the ARQ197 will prove to be very successful in doing this, and we continue our aggressive and relentless search for an effective cure for this insidious disease.
With special caring thoughts and continued Hope,
Bonni
It is with numbing shock and deepest heartbreak that we recently received the devastating news that Brittany has now developed a one centimeter met at the head of her pancreas. Our extensive research has found that it is extremely rare for any kind of metastatic cancer to metastasize to the pancreas, and we have only been able to find information about one case of ASPS having done so. Because of the extremely dangerous location of Brittany's pancreatic met at the head of the pancreas ( as opposed to the tail or body of the pancreas), resection and RFA are not viable treatment options due to the high mortality risk of those procedures. The only treatment option at this time is Cyberknife, but heartbreakingly, the insurance company has denied our request for this treatment because they say that it is an unproven treatment. However, we have, with Olga's invaluable help and dedicated research, found data of successful treatment outcomes of Cyberknife treatment for malignant melanoma pancreatic mets located at the head of the pancreas. Because ASPS has been closely linked to malignant melanoma because of some biological similarities, we feel that Cyberknife could also be effective in killing Brittany's pancreatic met, and we are appealing the insurance company's denial on this basis. In the meantime, we have enrolled Brittany in the ARQ197 Clinical Trial ( please see my today's entry in the ARQ197 Clinical Trial topic on this forum) in Hopes that the medication will be able to shrink/kill Brittany's multiple mets and stabilize the progression of her disease. Thankfully, this week's Trial screening brain MRI showed no new brain mets and possible shrinkage/necrosis of her four brain mets which were Gamma Knifed in May. The status of her recently resected cervical and thoracic spinal tumor was unclear from the PET/CT scan and we are now awaiting the transcribed results of the radiologist report. Of additional great concern is the inexplicable explosion of lung mets since Brittany's lung RFA in January, and the growing together of some of the mets into two large clusters of cells. We are very perplexed about this rapid growth of lung mets since at the time of her January RFA we were told that only five mets were visible that were then RFA'd. We are now concerned/suspicious that the RFA procedure may have actually possibly seeded all of the new lung mets, but we have no way of determining if this is what happened. Devastatingly, resection/ablation/ standard radiation are not treatment options for some of Brittany's mets, and she needs an effective systemic treatment to shrink/destroy her existing mets and to prevent the development of any new ones. We are holding very tight to Hope that the ARQ197 will prove to be very successful in doing this, and we continue our aggressive and relentless search for an effective cure for this insidious disease.
With special caring thoughts and continued Hope,
Bonni
Re: Brittany's devastating increased disease progression
Bonni---
I am so sorry to hear about all of your recent updates. I am so sorry to hear about the bad news...it's bound to swing to the up soon, right?? Please let me know if there is anything we can do to help...like write your insurance company and complain...
Sincerely,
Kim
I am so sorry to hear about all of your recent updates. I am so sorry to hear about the bad news...it's bound to swing to the up soon, right?? Please let me know if there is anything we can do to help...like write your insurance company and complain...
Sincerely,
Kim
Re: Brittany's devastating increased disease progression
Bonni,
I am so sorry to hear of your heartbreaking news. It is so frustrating that the insurance
companies have a right to determine what treatment should be used. In our situation,
there should be more understanding of unconventional treatments that may need to
be used. Thanks for keeping us informed.
Prayers,
Cindy sam's mom
I am so sorry to hear of your heartbreaking news. It is so frustrating that the insurance
companies have a right to determine what treatment should be used. In our situation,
there should be more understanding of unconventional treatments that may need to
be used. Thanks for keeping us informed.
Prayers,
Cindy sam's mom
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Fictional
Re: Brittany's devastating increased disease progression
My brother-in-law used to work in health insurance, and he recommended that we ask for a case manager - because approvals can get so complicated for cancer treatments - she does not always have the authority to do things, but she does know who to ask and how to expedite appeals. We used Premera - and all we needed to do was ask to have a case manager - it is free. Perhaps you can call the customer service number on your card and ask to be assigned a case manager...it may also help you down the line. I think it took us about 2 weeks to get a case manager (bureaucracy).
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Brittany's Cryoablation procedures
Dear ASPS Community Friends,
We just returned Home from two weeks in Detroit, Michigan where Brittany underwent two separate Cryoablation procedures a week apart to treat and Hopefully destroy three of her largest lung mets which were all about three centimeters, two of which were in her right lung, and one in her left lung. One of the tumors in her right lung was deeply located in the lung close to the heart and esophagus and was considered unresectable because it would have caused the loss of too much lung tissue with permanent debilitating quality of Life side effects. Both Cryoablations were done as outpatient procedures at Karmanos Cancer Institute by the excellent and very experienced surgeon and Cryoablation specialist, Dr. Peter Littrup, who pioneered Cryoablation to the lung, and is to our knowledge, the only doctor in the United States who currently performs this procedure for lung tumors. Both Cryoablations were done with Brittany under conscious sedation rather than general anesthetic, and she tolerated the procedures well, although her recovery has been more painful and difficult than it was when she had her first lung Cryoablation in November 2004 because of the larger size and more difficult location of the tumors which were treated this time, and having had both lungs ablated during a two week period. She has been experiencing quite a bit of expected post Cryo lung area pain and some coughing and shortness of breath, but is gradually recovering and regaining her strength and energy, and with her usual strong will and determination has resumed most of her normal activities and her very active Lifestyle. She still has about fifteen smaller tumors remaining in her lungs, as well as a small abdominal wall tumor and an increasingly concerning now three and half centimeter pancreatic area tumor, so we are planning to pursue a systemic treatment as soon as her body has adequately recovered from the Cryoablation procedures to try to stabilize the progression of the disease and shrink/destroy her multiple tumors. I will keep the Web site updated when I have more information to share. In the meantime, please take care everyone and keep in touch as you are able.
With special caring thoughts and continued Hope,
Bonni
We just returned Home from two weeks in Detroit, Michigan where Brittany underwent two separate Cryoablation procedures a week apart to treat and Hopefully destroy three of her largest lung mets which were all about three centimeters, two of which were in her right lung, and one in her left lung. One of the tumors in her right lung was deeply located in the lung close to the heart and esophagus and was considered unresectable because it would have caused the loss of too much lung tissue with permanent debilitating quality of Life side effects. Both Cryoablations were done as outpatient procedures at Karmanos Cancer Institute by the excellent and very experienced surgeon and Cryoablation specialist, Dr. Peter Littrup, who pioneered Cryoablation to the lung, and is to our knowledge, the only doctor in the United States who currently performs this procedure for lung tumors. Both Cryoablations were done with Brittany under conscious sedation rather than general anesthetic, and she tolerated the procedures well, although her recovery has been more painful and difficult than it was when she had her first lung Cryoablation in November 2004 because of the larger size and more difficult location of the tumors which were treated this time, and having had both lungs ablated during a two week period. She has been experiencing quite a bit of expected post Cryo lung area pain and some coughing and shortness of breath, but is gradually recovering and regaining her strength and energy, and with her usual strong will and determination has resumed most of her normal activities and her very active Lifestyle. She still has about fifteen smaller tumors remaining in her lungs, as well as a small abdominal wall tumor and an increasingly concerning now three and half centimeter pancreatic area tumor, so we are planning to pursue a systemic treatment as soon as her body has adequately recovered from the Cryoablation procedures to try to stabilize the progression of the disease and shrink/destroy her multiple tumors. I will keep the Web site updated when I have more information to share. In the meantime, please take care everyone and keep in touch as you are able.
With special caring thoughts and continued Hope,
Bonni
Re: Brittany's Cryoablation procedures
Hello Bonni 
I am so happy that you are both home and that she is as usual positive, strong and starting to smile again. I will e mail you back today when i get home i am running in a lil bit to see a doctor about a diet that should help me get my body very strong for this fight i am just starting.
You have been a dear friend to me thru this and i know your child has gained her streange thru you! You are an amasing mother!
Please, post back or e mail soon on how she is doing when you have time.
With love and light and hugs and prayers to you and your daughter!
Amanda
I am so happy that you are both home and that she is as usual positive, strong and starting to smile again. I will e mail you back today when i get home i am running in a lil bit to see a doctor about a diet that should help me get my body very strong for this fight i am just starting.
You have been a dear friend to me thru this and i know your child has gained her streange thru you! You are an amasing mother!
Please, post back or e mail soon on how she is doing when you have time.
With love and light and hugs and prayers to you and your daughter!
Amanda
“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