Dear Dotty,
I am so deeply sorry about this latest set back for dear Jordanne and for the pain that she is suffering from the new fracture. I am sorry too that she is going to have to temporarily discontinue the Cediranib, but am Hoping that it will be for just a brief amount of time. I have not yet had a chance to talk to Dr. Sawyer about the osteoporosis issue as a possible side effect of the Cediranib treatment since he has been traveling, and he won't be there for Brittany's November appointment, but I will ask him about it when we see him again. I am grateful that Jordanne has been able to maintain her positive spirits and attitude despite the heartache and pain of this new fracture. She is really an amazing young woman, and I'm sure that she won't let this keep her from continuing to move forward with Living and enjoying her young Life as she should be able to do. Please give her a very gentle hug and wishes for a very speedy recovery from all of us Hesses. We will be anxiously awaiting your update on the outcome of Jordanne's tomorrow's appointment with the orthopedic specialist. In the meantime, please take care and know how deeply I understand the pain and anger of the unfairness of our beloved young daughters not being able to just Live a normal Life doing the normal things that other people their age do and take so much for granted.
Sharing the heartache of this new set back with special caring thoughts, healing wishes for Jordanne, and continued Hope,
Bonni
Jordanne from Washington - Dx 2009 - RIP June 28 2013
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jordanne from Washington - Dx 2009
Hello all,
Jordanne was on the Cediranib trial from Jan 2010 through May of 2011 with 2 one month breaks for surgeries. She showed initial partial response and then stability until approximately January 2011. Details are in the Cediranib forum.
After coming back to Washington she broke her hip in June. The CT scan at her last NIH visit in May showed a small break in the neck of her hip joint. A few weeks later she fell and broke it completely. She was taken to the University of Washington Medical Center where she had a complete bone scan. At that time, they discovered that she had a number of mets in her skull, sternum/rib and possibly other areas. We were unable to get an MRI right away of her head because of the spinal cord stimulator she had implanted for sciatic nerve damage back in December 2010.
Dr. Chappie Conrad successfully did a bi-polar hip replacement and removed the stimulator during the hip surgery. After that she was able to have a brain MRI which showed a golf ball sized tumor in her skull which had not penetrated the brain, Praise the Lord. A week later she had a craniotomy which removed the large skull met and one other smaller met next to it. She still has 4 other small mets in the skull on different bones. She will be having more scans and we will be deciding a on a plan of action in the next couple of weeks at the Seattle Cancer Care Alliance.
We are grateful to Dr. Silbergeld for doing such a great job on her craniotomy while removing the least amount of hair which was very important to Jordanne. A woman's hair is her crowning glory and truly affects self esteem. The tumor had not penetrated any layers surrounding the brain either.
We are hoping that she can have different kinds of radiation on her bone mets and then may be able to start on Sutent. We shall see. Currently she is recuperating from two surgeries before starting on the next plan of action.
Jordanne was on the Cediranib trial from Jan 2010 through May of 2011 with 2 one month breaks for surgeries. She showed initial partial response and then stability until approximately January 2011. Details are in the Cediranib forum.
After coming back to Washington she broke her hip in June. The CT scan at her last NIH visit in May showed a small break in the neck of her hip joint. A few weeks later she fell and broke it completely. She was taken to the University of Washington Medical Center where she had a complete bone scan. At that time, they discovered that she had a number of mets in her skull, sternum/rib and possibly other areas. We were unable to get an MRI right away of her head because of the spinal cord stimulator she had implanted for sciatic nerve damage back in December 2010.
Dr. Chappie Conrad successfully did a bi-polar hip replacement and removed the stimulator during the hip surgery. After that she was able to have a brain MRI which showed a golf ball sized tumor in her skull which had not penetrated the brain, Praise the Lord. A week later she had a craniotomy which removed the large skull met and one other smaller met next to it. She still has 4 other small mets in the skull on different bones. She will be having more scans and we will be deciding a on a plan of action in the next couple of weeks at the Seattle Cancer Care Alliance.
We are grateful to Dr. Silbergeld for doing such a great job on her craniotomy while removing the least amount of hair which was very important to Jordanne. A woman's hair is her crowning glory and truly affects self esteem. The tumor had not penetrated any layers surrounding the brain either.
We are hoping that she can have different kinds of radiation on her bone mets and then may be able to start on Sutent. We shall see. Currently she is recuperating from two surgeries before starting on the next plan of action.
Re: Jordanne from Washington - Dx 2009
Dotty, thank you very much for the update. Looking at Jordanne on Facebook you would never guess she is even sick at all. She is always so cheerful, and full of life.
When you say skull - do you mean the actual bone, or brain? The golf-sized tumor which was just successfully removed (yay
) - was it asymptomatic?
When you say skull - do you mean the actual bone, or brain? The golf-sized tumor which was just successfully removed (yay
) - was it asymptomatic?Re: Jordanne from Washington - Dx 2009
Ivan,
Yes, Jordanne is almost always positive and very active. The tumor was just in the skull. It did not invade the outer dura or the brain. They removed a smaller one next to it at the same time. She also has 3-4 other ones in the skull but in different locations. She has had a few headaches, but it was hard to tell if they were Cediranib related. She had one that lasted for 3 days which radiated to her jaw. That one gave us the most concern. We were uninformed that her scan had shown a tumor in the skull quite a while ago, or at least one scan mentions it in comparison. She will have another Pet scan on the 18th in Seattle.
The bone scan that was done just prior to her hip surgery showed all of the skull mets. It would seem that most of her mets are in the bone. that was even the case originally when her jaw was the first area of concern and that was her first biopsy. It went through the jaw bone and was actually growing fairly quickly for ASPS.
I will try to keep the board updated after her next visit at the Seattle Cancer Care Alliance.
Blessings,
Dotty
Yes, Jordanne is almost always positive and very active. The tumor was just in the skull. It did not invade the outer dura or the brain. They removed a smaller one next to it at the same time. She also has 3-4 other ones in the skull but in different locations. She has had a few headaches, but it was hard to tell if they were Cediranib related. She had one that lasted for 3 days which radiated to her jaw. That one gave us the most concern. We were uninformed that her scan had shown a tumor in the skull quite a while ago, or at least one scan mentions it in comparison. She will have another Pet scan on the 18th in Seattle.
The bone scan that was done just prior to her hip surgery showed all of the skull mets. It would seem that most of her mets are in the bone. that was even the case originally when her jaw was the first area of concern and that was her first biopsy. It went through the jaw bone and was actually growing fairly quickly for ASPS.
I will try to keep the board updated after her next visit at the Seattle Cancer Care Alliance.
Blessings,
Dotty
Brittany on Cediranib trial Phase 1 in Edmonton
Guilty here!
We've been pretty discouraged and busy trying to chase Jordanne's tumors as she has had quite a bit of progression since gong off of Cediranib.
I agree, Bonni, that Cediranib has shown shrinkage and I believe Jordanne did not have any new mets for quite some time. Unfortunately, when she had to go off of it the second time the new mets started to form, I believe.
I am so happy that Brittany continues to have such a good response. At what point would they call this remission? As you and I have discussed, I wonder if her tumors are significantly more positive for Vegf rather than one of the other growth factors.
I would encourage anyone to have their tumors tested. Jordanne's are positive for both MET and Vegf. She was on Sutent for 2 months prior to her surgery this week and it showed shrinkage of her tumors that I would call soft tissue, lung and around the heart. However, there did not appear to be any affect on her numerous bone mets. Because of that, she has decided to try a Met inhibitor after she heals from the tumor resection of her femur.
We are hoping that the new trial in Seattle will be open within the next couple of weeks so she can get started right away.
I'll try to get around to posting on Jordanne's update later.
Thanks,
Dotty
We've been pretty discouraged and busy trying to chase Jordanne's tumors as she has had quite a bit of progression since gong off of Cediranib.
I agree, Bonni, that Cediranib has shown shrinkage and I believe Jordanne did not have any new mets for quite some time. Unfortunately, when she had to go off of it the second time the new mets started to form, I believe.
I am so happy that Brittany continues to have such a good response. At what point would they call this remission? As you and I have discussed, I wonder if her tumors are significantly more positive for Vegf rather than one of the other growth factors.
I would encourage anyone to have their tumors tested. Jordanne's are positive for both MET and Vegf. She was on Sutent for 2 months prior to her surgery this week and it showed shrinkage of her tumors that I would call soft tissue, lung and around the heart. However, there did not appear to be any affect on her numerous bone mets. Because of that, she has decided to try a Met inhibitor after she heals from the tumor resection of her femur.
We are hoping that the new trial in Seattle will be open within the next couple of weeks so she can get started right away.
I'll try to get around to posting on Jordanne's update later.
Thanks,
Dotty
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jordanne from Washington - Dx 2009
Dear Dotty,
Thank you for your very thoughtful post, and welcome back to the Board. You have really been missed, but we all certainly know and understand how very emotionally and physically demanding, exhausting, and discouraging fighting this insidious disease is, and that the highest priority absolutely needs to be addressing and pursuing treatment to stabilize disease progression and destroy tumors. Please just always remember that dear Jordanne and you are not alone in this battle, and that those of us on this Board are here for you to share information, special caring, understanding, and strengthening support and encouragement with you whenever you may want or need it.
I am so deeply sorry and saddened about dear Jordanne's post Cediranib rebound and disseminated disease progression, but am grateful that the Sutent was effective in at least shrinking her lung and pericardium mets. My most special healing wishes are with her for a speedy and full recovery from her femur tumor resection, and I am holding VERY tight to Hope that her upcoming Met Inhibitor Trial will be VERY successful in shrinking and destroying her multiple bone mets and stabilizing the progression of her disease.
Although Dr. DuBois, Brittany's ARQ-197 Clinical Trial oncologist at UCSF in San Francisco, told us that he didn't think that tumor tissue testing had any value in trying to determine what treatments might or might not be more effective for a patient, we personally feel that it does provide some valuable insights on which treatments to pursue. Brittany's 2008 tumor tissue test results showed lower levels of Met, and significantly higher levels of VEGF which may explain why she had a failed response to the ARQ-197 C-met inhibitor medication, but has had a very successful sustained response to Cediranib which targets VEGF. When I am able to access Brittany's tumor tissue testing results I will try to post them on the Board for possible comparison by other ASPS patients who have had their tumor tissue tested.
I cannot stress enough that shared anecdotal information from ASPS patients and their families continues to be one of our most powerful weapons in fighting this very challenging disease, and I Hope that everyone will more actively do so.
I will be closely following Jordanne's recovery from her femur surgery and her new Met Inhibitor Trial experience, sending my healing wishes and most positve energy her way, and anxiously awaiting your updates as your time and the situation allow. Please give dear Jordanne gentle hugs, and know that she and you are held very close in my heart and most caring thoughts.Take care dear friend.
Heart to heart with deepest caring, healing wishes, and continued Hope,
Bonni
Thank you for your very thoughtful post, and welcome back to the Board. You have really been missed, but we all certainly know and understand how very emotionally and physically demanding, exhausting, and discouraging fighting this insidious disease is, and that the highest priority absolutely needs to be addressing and pursuing treatment to stabilize disease progression and destroy tumors. Please just always remember that dear Jordanne and you are not alone in this battle, and that those of us on this Board are here for you to share information, special caring, understanding, and strengthening support and encouragement with you whenever you may want or need it.
I am so deeply sorry and saddened about dear Jordanne's post Cediranib rebound and disseminated disease progression, but am grateful that the Sutent was effective in at least shrinking her lung and pericardium mets. My most special healing wishes are with her for a speedy and full recovery from her femur tumor resection, and I am holding VERY tight to Hope that her upcoming Met Inhibitor Trial will be VERY successful in shrinking and destroying her multiple bone mets and stabilizing the progression of her disease.
Although Dr. DuBois, Brittany's ARQ-197 Clinical Trial oncologist at UCSF in San Francisco, told us that he didn't think that tumor tissue testing had any value in trying to determine what treatments might or might not be more effective for a patient, we personally feel that it does provide some valuable insights on which treatments to pursue. Brittany's 2008 tumor tissue test results showed lower levels of Met, and significantly higher levels of VEGF which may explain why she had a failed response to the ARQ-197 C-met inhibitor medication, but has had a very successful sustained response to Cediranib which targets VEGF. When I am able to access Brittany's tumor tissue testing results I will try to post them on the Board for possible comparison by other ASPS patients who have had their tumor tissue tested.
I cannot stress enough that shared anecdotal information from ASPS patients and their families continues to be one of our most powerful weapons in fighting this very challenging disease, and I Hope that everyone will more actively do so.
I will be closely following Jordanne's recovery from her femur surgery and her new Met Inhibitor Trial experience, sending my healing wishes and most positve energy her way, and anxiously awaiting your updates as your time and the situation allow. Please give dear Jordanne gentle hugs, and know that she and you are held very close in my heart and most caring thoughts.Take care dear friend.
Heart to heart with deepest caring, healing wishes, and continued Hope,
Bonni
Re: Jordanne from Washington - Dx 2009
Wow! I can't believe it's been a year since I last posted an update on Jordanne. Where do I start?
Shortly after that post Jordanne had severe pain in her back from tumors in her pelvis and lower back. We chose to do radiation to the pelvis in late December. The radiation did relieve the pain from those tumors. The radiation also severely messed up her digestive track. She lost almost 30 pounds and we were very discouraged. Her oncologist and radiologist at the time were somewhat at aloss. They did not recognize the incredible strength of this young woman.
We decided to try a different track than the recommended ASPS standard. She changed treatment to the Seattle Cancer Treatment and Wellness center and underwent a low dose of chemo on a weekly basis on the advice of the oncologist because he felt her bone tumors were more high grade because of the speed of their growth. She ended up putting on weight and feeling better over the next few months. She had some increased symptoms from a tumor at the base of her skull so we decided to try cyberknife radiation on this tumor. We did not see much result from that but the tumor appears to have stayed the same size so that's always a plus.
The day before going in for her follow up visit on the skull tumor Jordanne had a tumor in her head bleed which caused a seizure. She fell and broke her leg, another bone tumor. It was the scariest time for us. She was taken by ambulance to Olympia where they did a CT of her brain and found the brain bleed. From there she was airlifted to Seattle, UWMC. She had emergency brain surgery to remove that tumor. By the time she had the surgery, she had no use of her left side and was not speaking. Praise the Lord, she came out of the surgery talking and had regained use of her right leg within a day or two.
They had to wait a week to go in and repair her femur. This was a tricky surgery done by Chappie Conrad. Because she had a previous hip replacement, he had to put a plate in and attach it with cables wrapped around the bone. She went from 18 days at UW to rehab for a week.
Unfortunately, she continued to lose weight and has not really gained that back. The tumors in her bones have continued to proliferate. She has been wheelchair bound since July and can't really use a walker because she has tumors in her right arm. One bone in her forearm is currently broken and her new oncologist is weighing what is the best choice of action.
After this incident we switched care back to SCCA with a new oncologist, Dr. Robin Jones. He was a doc in London when they did the first Cediranib trial there. He has a lot of experience with ASPS patients and is a very kind and compassionate doctor. I highly recommend him.
Jordanne is currently taking Votrient (Pazopanib) and getting monthly Exgeva shots for her bones. She is working on getting an appetite back and hoping to gain some fat one of these days. She had scans last week which showed stable disease in her lungs and her skull tumors. My guess is that the tumor that is near the base of her skull is improving because her hearing has greatly improved in the last few weeks and her appetite is getting better on her own.
I forgot to mention that she also ended up in the hospital with Pneumonis in September which landed her back in the hospital. Her latest scans show a great improvement in her lungs. Dr. Jones was very concerned for her at that time but is very pleased with how she has bounced back. (Typical Jordanne)
Currently, Jordanne is continuing with the Votrient and Exgeva treatment. The Exgeva causes some pretty intense bone pain which comes and goes. Jordanne continues with her indomitable spirit and is my inspiration.
I'm sorry that this is pretty disjointed. There was a lot of ground to cover. My heart goes out to each of you living with this disease. I know one thing, cancer patients are some of the strongest people you will ever meet. This forum is a great place for the newly diagnosed to find support and advice. Jordanne gets lots of encouragement from Brittany H as well as another girl she met through this sight. To know others going through the very same things is a relief and a source of great encouragement and support.
blessings,
Dotty
Shortly after that post Jordanne had severe pain in her back from tumors in her pelvis and lower back. We chose to do radiation to the pelvis in late December. The radiation did relieve the pain from those tumors. The radiation also severely messed up her digestive track. She lost almost 30 pounds and we were very discouraged. Her oncologist and radiologist at the time were somewhat at aloss. They did not recognize the incredible strength of this young woman.
We decided to try a different track than the recommended ASPS standard. She changed treatment to the Seattle Cancer Treatment and Wellness center and underwent a low dose of chemo on a weekly basis on the advice of the oncologist because he felt her bone tumors were more high grade because of the speed of their growth. She ended up putting on weight and feeling better over the next few months. She had some increased symptoms from a tumor at the base of her skull so we decided to try cyberknife radiation on this tumor. We did not see much result from that but the tumor appears to have stayed the same size so that's always a plus.
The day before going in for her follow up visit on the skull tumor Jordanne had a tumor in her head bleed which caused a seizure. She fell and broke her leg, another bone tumor. It was the scariest time for us. She was taken by ambulance to Olympia where they did a CT of her brain and found the brain bleed. From there she was airlifted to Seattle, UWMC. She had emergency brain surgery to remove that tumor. By the time she had the surgery, she had no use of her left side and was not speaking. Praise the Lord, she came out of the surgery talking and had regained use of her right leg within a day or two.
They had to wait a week to go in and repair her femur. This was a tricky surgery done by Chappie Conrad. Because she had a previous hip replacement, he had to put a plate in and attach it with cables wrapped around the bone. She went from 18 days at UW to rehab for a week.
Unfortunately, she continued to lose weight and has not really gained that back. The tumors in her bones have continued to proliferate. She has been wheelchair bound since July and can't really use a walker because she has tumors in her right arm. One bone in her forearm is currently broken and her new oncologist is weighing what is the best choice of action.
After this incident we switched care back to SCCA with a new oncologist, Dr. Robin Jones. He was a doc in London when they did the first Cediranib trial there. He has a lot of experience with ASPS patients and is a very kind and compassionate doctor. I highly recommend him.
Jordanne is currently taking Votrient (Pazopanib) and getting monthly Exgeva shots for her bones. She is working on getting an appetite back and hoping to gain some fat one of these days. She had scans last week which showed stable disease in her lungs and her skull tumors. My guess is that the tumor that is near the base of her skull is improving because her hearing has greatly improved in the last few weeks and her appetite is getting better on her own.
I forgot to mention that she also ended up in the hospital with Pneumonis in September which landed her back in the hospital. Her latest scans show a great improvement in her lungs. Dr. Jones was very concerned for her at that time but is very pleased with how she has bounced back. (Typical Jordanne)
Currently, Jordanne is continuing with the Votrient and Exgeva treatment. The Exgeva causes some pretty intense bone pain which comes and goes. Jordanne continues with her indomitable spirit and is my inspiration.
I'm sorry that this is pretty disjointed. There was a lot of ground to cover. My heart goes out to each of you living with this disease. I know one thing, cancer patients are some of the strongest people you will ever meet. This forum is a great place for the newly diagnosed to find support and advice. Jordanne gets lots of encouragement from Brittany H as well as another girl she met through this sight. To know others going through the very same things is a relief and a source of great encouragement and support.
blessings,
Dotty
Re: Jordanne from Washington - Dx 2009
Dotty,
thank you so much for the long awaited update on Jordanne.
It is heartbreaking what she is going through, I wish her all the luck with the Pazopanib. Just to let you know - I read an article just today about the patient with another cancer having a very good response to Sunitinib but the problem was that the toxicity built up eventually and she could not continue on a treatment, so they stopped to wash it out. The tumors rebounded their growth but they decided to go back on the Sunitinib (they call it TKI re-challenge strategy) and the tumors responded again and her stability resumed. Keep that in mind. It is very good to hear that there is a new sarcoma oncologist in Seattle that probably worked under the Pf.Ian Judson supervision in London, it is really good to have him next door.
About the pneumonia. When we were at the Karmanos center for the cryoablation with Dr.Littrup 2 weeks ago, the nurse on the station said that Ivan should have been already pneumonia vaccinated and that they insist that all cancer patients and esp. the ones with the lung mets have to be vaccinated with it and with the flu vaccine either. I'll repost it in the general area to alert everyone. We are going to ask about it on the meeting with his oncologist in December.
I wanted to ask about the bone mets. It looks like Jordanne has got a lot of them. Where they visible on any bone scan before? What size are they? I know that Brittany had her bone met RFA treated on a very small size few years ago and it is fine since then.
thank you so much for the long awaited update on Jordanne.
It is heartbreaking what she is going through, I wish her all the luck with the Pazopanib. Just to let you know - I read an article just today about the patient with another cancer having a very good response to Sunitinib but the problem was that the toxicity built up eventually and she could not continue on a treatment, so they stopped to wash it out. The tumors rebounded their growth but they decided to go back on the Sunitinib (they call it TKI re-challenge strategy) and the tumors responded again and her stability resumed. Keep that in mind. It is very good to hear that there is a new sarcoma oncologist in Seattle that probably worked under the Pf.Ian Judson supervision in London, it is really good to have him next door.
About the pneumonia. When we were at the Karmanos center for the cryoablation with Dr.Littrup 2 weeks ago, the nurse on the station said that Ivan should have been already pneumonia vaccinated and that they insist that all cancer patients and esp. the ones with the lung mets have to be vaccinated with it and with the flu vaccine either. I'll repost it in the general area to alert everyone. We are going to ask about it on the meeting with his oncologist in December.
I wanted to ask about the bone mets. It looks like Jordanne has got a lot of them. Where they visible on any bone scan before? What size are they? I know that Brittany had her bone met RFA treated on a very small size few years ago and it is fine since then.
Olga
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jordanne from Washington - Dx 2009
Dear Dotty,
Thank you for your very thoughtful and detailed update on dear Jordanne's very challenging battle during the past year. You have really been missed, and it is so good to have you back on the Board again. My heart breaks for, and I so deeply share the sorrow and heartache of, all that Jordanne and your family have been through this past very difficult year. But in spite of all of her immense pain, suffering, and discouraging setbacks, Jordanne has faced her disease with incredible courage, strength, and resilience which is truly humbling, a source of great inspiration, and a testament to her invincible spirit.
I am SO happy that Jordanne's most recent scans showed stabilization of her lung and skull tumors. I am holding VERY tight to Hope that these VERY good and encouraging scan results mean that she is having a successful response to the Pazopanib, and that the Pazopanib will cause significant shrinkage/disappearance of her tumors and provide continued and sustained disease stabilization.
I am grateful that she is now under the excellent and very compassionate care of Dr. Robin Jones at Seattle Cancer Care Alliance. As you know, Dr. Jones is also Brittany's SCCA Sarcoma oncologist. We are very impressed with his knowledge, his dedication to his patients, his responsiveness to our requests and concerns, his special caring, and his kindness. You are right Olga about him having worked under Professor Judson's supervision at the Royal Marsden in London. Dr. Jones was involved with the Cediranib Trial there and Paul Mavers' treatment. He told us that he knew Paul very well as a patient and greatly admired him.
Since Jordanne is now on Pazopanib, it would be deeply appreciated dear Dotty if and when your time and the situation allow, you could post updates about her Pazopanib experience, side effects, and results in the Pazopanib topic on this Board. I am aware of several other ASPS patients who are currently taking Pazopanib who unfortunately don't/won't participate on the Board and share their anecdotal treatment information. This information is invaluable to everyone in the ASPS Community, and shared treatment information is one of our most powerful weapons in fighting this extremely rare and poorly understood disease.
Please give Jordanne gentle hugs from all of us Hesses and know that she and your family are held VERY close in our hearts and most caring thoughts. We are so deeply grateful for the special bond and friendship that Brittany and Jordanne share with each other, and for the faithful strengthening support and encouragement which dear Jordanne provides to Brittany in their personal communications.
Take care Dotty, have a beautiful and bountifully blessed Thanksgiving with Jordanne and your family, and keep in touch as you are able.
With deepest caring, positive thoughts, healing wishes for Jordanne, warm friendship, and continued Hope,
Bonni
Thank you for your very thoughtful and detailed update on dear Jordanne's very challenging battle during the past year. You have really been missed, and it is so good to have you back on the Board again. My heart breaks for, and I so deeply share the sorrow and heartache of, all that Jordanne and your family have been through this past very difficult year. But in spite of all of her immense pain, suffering, and discouraging setbacks, Jordanne has faced her disease with incredible courage, strength, and resilience which is truly humbling, a source of great inspiration, and a testament to her invincible spirit.
I am SO happy that Jordanne's most recent scans showed stabilization of her lung and skull tumors
. I am holding VERY tight to Hope that these VERY good and encouraging scan results mean that she is having a successful response to the Pazopanib, and that the Pazopanib will cause significant shrinkage/disappearance of her tumors and provide continued and sustained disease stabilization. I am grateful that she is now under the excellent and very compassionate care of Dr. Robin Jones at Seattle Cancer Care Alliance. As you know, Dr. Jones is also Brittany's SCCA Sarcoma oncologist. We are very impressed with his knowledge, his dedication to his patients, his responsiveness to our requests and concerns, his special caring, and his kindness. You are right Olga about him having worked under Professor Judson's supervision at the Royal Marsden in London. Dr. Jones was involved with the Cediranib Trial there and Paul Mavers' treatment. He told us that he knew Paul very well as a patient and greatly admired him.
Since Jordanne is now on Pazopanib, it would be deeply appreciated dear Dotty if and when your time and the situation allow, you could post updates about her Pazopanib experience, side effects, and results in the Pazopanib topic on this Board. I am aware of several other ASPS patients who are currently taking Pazopanib who unfortunately don't/won't participate on the Board and share their anecdotal treatment information. This information is invaluable to everyone in the ASPS Community, and shared treatment information is one of our most powerful weapons in fighting this extremely rare and poorly understood disease.
Please give Jordanne gentle hugs from all of us Hesses and know that she and your family are held VERY close in our hearts and most caring thoughts. We are so deeply grateful for the special bond and friendship that Brittany and Jordanne share with each other, and for the faithful strengthening support and encouragement which dear Jordanne provides to Brittany in their personal communications.
Take care Dotty, have a beautiful and bountifully blessed Thanksgiving with Jordanne and your family, and keep in touch as you are able.
With deepest caring, positive thoughts, healing wishes for Jordanne, warm friendship, and continued Hope,
Bonni
Re: Jordanne from Washington - Dx 2009
Hello Dotty!
It has been a long time and i was concerned! I am so sorry she has had a battle this year an pain
But, this news is good! It sheds well over due light on this situation and hope...
May your holidays be pain free an may you continue stability!
*hugs to you both*
It has been a long time and i was concerned! I am so sorry she has had a battle this year an pain
But, this news is good! It sheds well over due light on this situation and hope...
May your holidays be pain free an may you continue stability!
*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: Jordanne from Washington - Dx 2009
Hello Dotty,
I hope that you are both doing alright! When people are silent i get concerned as does everyone we are a special group... Please, let us know how you two are when you have time
I hope that you are both doing alright! When people are silent i get concerned as does everyone we are a special group... Please, let us know how you two are when you have time
“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: Jordanne from Washington - Dx 2009
Has anyone spoken with Dotti or Jordanne?
“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
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jordanne from Washington - Dx 2009
Dear Amanda,
Thank you for your caring concern about Jordanne. We are in frequent contact with both Jordanne and Dotty. Brittany and Jordanne share a close and special friendship with each other, and Brittany has been able to get together with Jordanne a couple of times during the past couple of months. i don't feel it is my place/right to share information about Jordanne's situation on the Board, but I have encouraged Dotty to post an update on Jordanne when her time allows, so Hopefully she will do so sometime soon.
With special caring thoughts and continued Hope,
Bonni
Thank you for your caring concern about Jordanne. We are in frequent contact with both Jordanne and Dotty. Brittany and Jordanne share a close and special friendship with each other, and Brittany has been able to get together with Jordanne a couple of times during the past couple of months. i don't feel it is my place/right to share information about Jordanne's situation on the Board, but I have encouraged Dotty to post an update on Jordanne when her time allows, so Hopefully she will do so sometime soon.
With special caring thoughts and continued Hope,
Bonni
Re: Jordanne from Washington - Dx 2009
Thank you Bonni
I just have not seen posts and i wanted to know how she an that pug are doing
I just have not seen posts and i wanted to know how she an that pug are doing
Bonni Hess wrote:Dear Amanda,
Thank you for your caring concern about Jordanne. We are in frequent contact with both Jordanne and Dotty. Brittany and Jordanne share a close and special friendship with each other, and Brittany has been able to get together with Jordanne a couple of times during the past couple of months. i don't feel it is my place/right to share information about Jordanne's situation on the Board, but I have encouraged Dotty to post an update on Jordanne when her time allows, so Hopefully she will do so sometime soon.
With special caring thoughts and continued Hope,
Bonni
“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: Jordanne from Washington - Dx 2009
With sadness, I report that after a long fight Jordanne succumbed to the damned ASPS on June 28, 2013.
You can leave a message for her family here - http://obit.whitesidefamilymortuaries.c ... id=1221866
This was her blog - http://jordannegerbing.wordpress.com/
You can leave a message for her family here - http://obit.whitesidefamilymortuaries.c ... id=1221866
This was her blog - http://jordannegerbing.wordpress.com/