Brittany from Washington - Dx 2001
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Fictional
Re: Brittany's Cryoablation procedures
Glad to hear you're all back home and that they were able to get to the largest ones. Hopefully the weather really will turn into spring and Brittany can recover and enjoy being outside. I just got back some of the profiling results - looks like anti-angiogenesis is still top of the list for ASPS.
Re: Brittany's Cryoablation procedures
Hello Bonni 
It has been a few days and i was wondering how Brittany is doing and how you are holding up.
*huge hugs and prayers*
Amanda R
It has been a few days and i was wondering how Brittany is doing and how you are holding up.
*huge hugs and prayers*
Amanda R
“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: Brittany Hess
Hello Bonni
I know you have a lot going on right now hun and i just wanted you to know that we are praying for Brittany and you and your husband thru this new treatment that i hope has or is about to start! From what i am reading it is great! If you need to talk you know how to reach me anytime. Please, post when you can how she and all of you are doing.
Love, healing, huge hugs and prayers <3
Amanda R
I know you have a lot going on right now hun and i just wanted you to know that we are praying for Brittany and you and your husband thru this new treatment that i hope has or is about to start! From what i am reading it is great! If you need to talk you know how to reach me anytime. Please, post when you can how she and all of you are doing.
Love, healing, huge hugs and prayers <3
Amanda R
“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
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany Hess
Dear ASPS Community Friends,
Devastatingly, Brittany is continuing to have aggressive increased disease progression. Recent specialized abdominal CT scans showed that her previously diagnosed pancreatic tumor is definitely unresectable as it is located in the head of the pancreas and is cemented to the superior mesenteric vein. Additionally, the scans showed a small bowel intussusception tumor, a tumor on her spleen, and one on her duodenum, in addition to the previously diagnosed superficial abdominal wall tumor. Heartbreakingly, surgery and ablation are not options. An effective systemic treatment is desperately needed to stabilize the progression of the disease and shrink/destroy the multiple tumors, so we have scheduled Brittany to begin a Cediranib Rifampicin Clinical Trial in Edmonton, Alberta, Canada beginning on April 21st. Despite the recent very concerning scan results, Brittany remains incredibly strong and filled with her invincible zest for Life, and her words, spirit, and actions express and demonstrate her ongoing and undeterred Hope and perseverance, and that is what we will hold tight to in the difficult journey that lies ahead. I will try to keep this Forum updated about Brittany's Cediranib experience and results, and will be holding very tight to Hope that I will be able to share good news of disease stabilization and tumor shrinkage/necrosis. In the meantime, please take care everyone, have a beautiful Springtime, and know that my special thoughts and healing wishes are with you.
With deepest caring and continued Hope,
Bonni
Devastatingly, Brittany is continuing to have aggressive increased disease progression. Recent specialized abdominal CT scans showed that her previously diagnosed pancreatic tumor is definitely unresectable as it is located in the head of the pancreas and is cemented to the superior mesenteric vein. Additionally, the scans showed a small bowel intussusception tumor, a tumor on her spleen, and one on her duodenum, in addition to the previously diagnosed superficial abdominal wall tumor. Heartbreakingly, surgery and ablation are not options. An effective systemic treatment is desperately needed to stabilize the progression of the disease and shrink/destroy the multiple tumors, so we have scheduled Brittany to begin a Cediranib Rifampicin Clinical Trial in Edmonton, Alberta, Canada beginning on April 21st. Despite the recent very concerning scan results, Brittany remains incredibly strong and filled with her invincible zest for Life, and her words, spirit, and actions express and demonstrate her ongoing and undeterred Hope and perseverance, and that is what we will hold tight to in the difficult journey that lies ahead. I will try to keep this Forum updated about Brittany's Cediranib experience and results, and will be holding very tight to Hope that I will be able to share good news of disease stabilization and tumor shrinkage/necrosis. In the meantime, please take care everyone, have a beautiful Springtime, and know that my special thoughts and healing wishes are with you.
With deepest caring and continued Hope,
Bonni
Last edited by Bonni Hess on Tue Apr 07, 2009 1:46 pm, edited 1 time in total.
Re: Brittany Hess
All I have to say is that my thoughts and prayers are with you!
Re: Brittany Hess
Bonni <3
We have been praying every night for Brittany and both you and your husband! I know this is a hard time and i wish i could help in some way!
I wish they could start her before the 21st. But, starting this treatment from what i have read maybe wonderful and make this progression stop! You are one of the most dear and wonderful people i have ever met and your strength is shown in your wonderful daughter! She truly is a light in this world!
My love to all of you and huge hugs from California!
Amanda R
We have been praying every night for Brittany and both you and your husband! I know this is a hard time and i wish i could help in some way!
I wish they could start her before the 21st. But, starting this treatment from what i have read maybe wonderful and make this progression stop! You are one of the most dear and wonderful people i have ever met and your strength is shown in your wonderful daughter! She truly is a light in this world!
My love to all of you and huge hugs from California!
Amanda R
“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: Brittany Hess
Hello Bonni
I was just wondering how Brittany was doing and wanted to post and let you know that she has been in my thoughts every day and prayers!
I dont remember if she has staretd the clinical yet and i am staying positive that the trial will be as helpful to her as it has for others.
Please, tell her i am cheering for her!
Love, prayers and huge hugs to you both and your husband!
Amanda R
I was just wondering how Brittany was doing and wanted to post and let you know that she has been in my thoughts every day and prayers!
I dont remember if she has staretd the clinical yet and i am staying positive that the trial will be as helpful to her as it has for others.
Please, tell her i am cheering for her!
Love, prayers and huge hugs to you both and your husband!
Amanda R
“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: Brittany Hess
Dear Bonni
Well, it is the 23rd and i was wondering how Brittany is doing and if she has started the trail yet? I hope that your drive north went well and look forward to hearing how you are all doing.
Please, tell Brittany she is my hero <3
Love and healing light to you all!
Amanda R
PS, Radiation is going well so far and will post CT results in a few weeks after they are done
Well, it is the 23rd and i was wondering how Brittany is doing and if she has started the trail yet? I hope that your drive north went well and look forward to hearing how you are all doing.
Please, tell Brittany she is my hero <3
Love and healing light to you all!
Amanda R
PS, Radiation is going well so far and will post CT results in a few weeks after they are done
“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: Brittany Hess
Dear ASPS Community Friends,
Thank you for your very kind and caring messages of encouragment and Hope. We are currently in Edmonton, Alberta where Brittany underwent all of the pre-Trial scans, lab work, and screening consultation appointments for the Cediranib Clinical Trial this week. She is now scheduled to begin taking the Cediranib medication next Tuesday, April 28th and will be closely monitored several times a week at the out patient clinic with multiple EKG tests and blood draws on the days of the monitoring. Additionally, we will need to personally take and monitor Brittany's blood pressure throughout the Trial because severely increased blood pressure is one of the known side effects/risks of the Cediranib. Brittany will start on 45 mg. of Cediranib, but the dosage will be reduced if the side effects become too severe. Possible side effects include severe debilitating fatigue, increased blood pressure, mouth sores, foot and hand redness, blisters, and peeling which can result in difficulty walking and using the fingers, decreased thyroid levels, changes in the taste of food, and sensitivity to spicy food. The affects of Cediranib on fertility are unknown at this time. If all goes well with the treatment, Brittany will receive the medication and be closely followed and monitored here in Edmonton for a month, and then she will need to return once a month after that for as long as she remains on the medication. We have been very impressed with all of the doctors, nurses, radiologist and lab technicians, support staff, and many volunteers at the excellent Cross Cancer Institute where Brittany is participating in the Clinical Trial. We are holding VERY tight to Hope that Brittany will tolerate the treatment well with only minimum side effects, and that it will be VERY successful in stabilizing the progression of her disease and shrinking/destroying her multiple tumors. I will try to keep this Forum updated on Brittany's Cediranib experience and status scan results as I am able. In the meantime, please know that you are all in my most caring thoughts, and that my special healing wishes and Hope are with each of you as you continue your courageous individual battles. Please take care everyone and keep in touch with this Forum as your time and situations allow. Shared researched and anecdotal treatment information remain one of our greatest weapons in fighting this extremely rare and challenging disease.
With special caring thoughts and continued Hope,
Bonni
Thank you for your very kind and caring messages of encouragment and Hope. We are currently in Edmonton, Alberta where Brittany underwent all of the pre-Trial scans, lab work, and screening consultation appointments for the Cediranib Clinical Trial this week. She is now scheduled to begin taking the Cediranib medication next Tuesday, April 28th and will be closely monitored several times a week at the out patient clinic with multiple EKG tests and blood draws on the days of the monitoring. Additionally, we will need to personally take and monitor Brittany's blood pressure throughout the Trial because severely increased blood pressure is one of the known side effects/risks of the Cediranib. Brittany will start on 45 mg. of Cediranib, but the dosage will be reduced if the side effects become too severe. Possible side effects include severe debilitating fatigue, increased blood pressure, mouth sores, foot and hand redness, blisters, and peeling which can result in difficulty walking and using the fingers, decreased thyroid levels, changes in the taste of food, and sensitivity to spicy food. The affects of Cediranib on fertility are unknown at this time. If all goes well with the treatment, Brittany will receive the medication and be closely followed and monitored here in Edmonton for a month, and then she will need to return once a month after that for as long as she remains on the medication. We have been very impressed with all of the doctors, nurses, radiologist and lab technicians, support staff, and many volunteers at the excellent Cross Cancer Institute where Brittany is participating in the Clinical Trial. We are holding VERY tight to Hope that Brittany will tolerate the treatment well with only minimum side effects, and that it will be VERY successful in stabilizing the progression of her disease and shrinking/destroying her multiple tumors. I will try to keep this Forum updated on Brittany's Cediranib experience and status scan results as I am able. In the meantime, please know that you are all in my most caring thoughts, and that my special healing wishes and Hope are with each of you as you continue your courageous individual battles. Please take care everyone and keep in touch with this Forum as your time and situations allow. Shared researched and anecdotal treatment information remain one of our greatest weapons in fighting this extremely rare and challenging disease.
With special caring thoughts and continued Hope,
Bonni
Re: Brittany Hess
It's a real shame we don't have a proper Stage 2 trial around here. Oh well, at least Britanny got accepted in Edmonton.
Hopefully you aren't too bored around there. My friend was born there and he said it's about as exciting as the middle of Mars.
Hopefully you aren't too bored around there. My friend was born there and he said it's about as exciting as the middle of Mars.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany Hess
Hi Ivan
Yes, it is unfortunate that there is not a Phase 2 Cediranib Trial available right now. We have always been opposed/resistant to Phase 1 Trials, but we had no choice because this is the only way that we could obtain the Cediranib medication for Brittany at this time. Actually, the Trial that Brittany is participating in is a combination Cediranib/Rifampicin Trial to try to determine the effect of Rifampicin on Cediranib. Rifampicin is the standard treatment used to treat tuberculosis, and the pharmaceutical company wants to determine if it reduces the effectiveness of Cediranib in cancer patients who also have tuberculosis and are being treated with Rifampicin. Brittany will receive the combination treatment of Cediranib/Rifampicin for the first week of her treatment, and then she will receive only the Cediranib thereafter. Edmonton would certainly not have been our choice of a place to spend a month as it is remotely located and the climate is quite cold and windy, but it is a clean city with plenty of shopping and restaurants and everyone has been very friendly thus far. There are beautiful recreation areas within a few hours drive from Edmonton, and we are currently spending a few days in the majestic mountain setting of Jasper National Park where we drove to yesterday since Brittany doesn't have another doctor appointment until Tuesday. Have you given any consideration to enrolling in this Trial? As far as I know, it is still open for enrollment and there are two new patients scheduled to begin it within the next few weeks. If you are interested, I will be glad to give you the contact information for the doctor and his research nurse. In the meantime, please take care, have a continued good recovery from your laser surgery, and enjoy a beautiful Springtime.
With special caring thoughts and continued Hope,
Bonni
Yes, it is unfortunate that there is not a Phase 2 Cediranib Trial available right now. We have always been opposed/resistant to Phase 1 Trials, but we had no choice because this is the only way that we could obtain the Cediranib medication for Brittany at this time. Actually, the Trial that Brittany is participating in is a combination Cediranib/Rifampicin Trial to try to determine the effect of Rifampicin on Cediranib. Rifampicin is the standard treatment used to treat tuberculosis, and the pharmaceutical company wants to determine if it reduces the effectiveness of Cediranib in cancer patients who also have tuberculosis and are being treated with Rifampicin. Brittany will receive the combination treatment of Cediranib/Rifampicin for the first week of her treatment, and then she will receive only the Cediranib thereafter. Edmonton would certainly not have been our choice of a place to spend a month as it is remotely located and the climate is quite cold and windy, but it is a clean city with plenty of shopping and restaurants and everyone has been very friendly thus far. There are beautiful recreation areas within a few hours drive from Edmonton, and we are currently spending a few days in the majestic mountain setting of Jasper National Park where we drove to yesterday since Brittany doesn't have another doctor appointment until Tuesday. Have you given any consideration to enrolling in this Trial? As far as I know, it is still open for enrollment and there are two new patients scheduled to begin it within the next few weeks. If you are interested, I will be glad to give you the contact information for the doctor and his research nurse. In the meantime, please take care, have a continued good recovery from your laser surgery, and enjoy a beautiful Springtime.
With special caring thoughts and continued Hope,
Bonni
Re: Brittany Hess
Yes, we have been thinking about enrolling in a cediranib trial. We have one in Vancouver, but it's not accepting any new patients right now. However, we have serious doubts about the effectiveness of cediranib on small lung metastases with no blood supply. It is, perhaps, not the best option for me right now. It being a Stage 1 is not helping either - all the negatives that come with it, such as overabundant bloodwork, and extended clinic visitation. It would have been a better option before the surgery, but since we had to go through with it, I am once again left with no sizeable mets to test it on for now.
Re: Brittany Hess
Dear Bonni and Brittany <3
Also to any ASPS paitent that is having side effects in the mouth...
My mother has sadly had cancer for close to ten years and is an MD and has also had problems with her mouth
Today i asked her what she was doing to help the pain and problems in her mouth because i dont want Brittany nor anyone else going thru more hell then they have to and she sent me this......
"the prescription mouthwash that I get is as follows:
1-Diphenhydramine liquid (2.5mg/ml) - 120ml
2-Dexamethasone sodium phosphate injection (4mg/ml) - o.6ml
3-Nystatin oral suspension (100,000 units/ml) -30ml
4-Tetracycline (25mg/ml or 500mg powder equivalent -22ml
5-Distilled water -30ml
Total volume:202.6
General directions: Swish,gargle and spit with 5ml Q4H PRN (that means every 4 hrs as needed).
This is a recipe made by the BC Cancer Agency, (604)877-6000, and it has to be prescribed by a Doctor, and then made up by a Compounding Pharmacy -i.e. one that makes its own prescriptions, following this recipe. Many pharmacies do. I would strongly suggest that the patient and especially the prescribing Doctor can call the BC Cancer Agency 604-877-6000-and ask the for the Pharmacy there for any info/questions, and to double check the prescription and its contents.
Some of you may already know about this mouth wash and some may not. In my own small way i am trying to help in any way i can and give back the huge amount of help and love i have receved in this forum...
*hugs and healing and wishes of hope*
Amanda R
Also to any ASPS paitent that is having side effects in the mouth...
My mother has sadly had cancer for close to ten years and is an MD and has also had problems with her mouth
Today i asked her what she was doing to help the pain and problems in her mouth because i dont want Brittany nor anyone else going thru more hell then they have to and she sent me this......
"the prescription mouthwash that I get is as follows:
1-Diphenhydramine liquid (2.5mg/ml) - 120ml
2-Dexamethasone sodium phosphate injection (4mg/ml) - o.6ml
3-Nystatin oral suspension (100,000 units/ml) -30ml
4-Tetracycline (25mg/ml or 500mg powder equivalent -22ml
5-Distilled water -30ml
Total volume:202.6
General directions: Swish,gargle and spit with 5ml Q4H PRN (that means every 4 hrs as needed).
This is a recipe made by the BC Cancer Agency, (604)877-6000, and it has to be prescribed by a Doctor, and then made up by a Compounding Pharmacy -i.e. one that makes its own prescriptions, following this recipe. Many pharmacies do. I would strongly suggest that the patient and especially the prescribing Doctor can call the BC Cancer Agency 604-877-6000-and ask the for the Pharmacy there for any info/questions, and to double check the prescription and its contents.
Some of you may already know about this mouth wash and some may not. In my own small way i am trying to help in any way i can and give back the huge amount of help and love i have receved in this forum...
*hugs and healing and wishes of hope*
Amanda R
Bonni Hess wrote:Dear ASPS Community Friends,
Brittany will start on 45 mg. of Cediranib, but the dosage will be reduced if the side effects become too severe. Possible side effects include severe debilitating fatigue, increased blood pressure, mouth sores, foot and hand redness, blisters, and peeling which can result in difficulty walking and using the fingers, decreased thyroid levels, changes in the taste of food, and sensitivity to spicy food. 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
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany Hess
Dear Amanda,
Thank you for so thoughtfully sharing the prescription mouthwash information. Hopefully mouth sores will not be an issue for Brittany during her Cediranib treatment, but we are very grateful to have the mouthwash information in the event that she does develop them. She received her first dose of the Cediranib medication this morning, but the doctor isn't expecting that she will experience any side effects for at least a week. I Hope that everything is going well with your radiation and that you are tolerating the treatment well. Please take care and know how deeply appreciative we are of your continued special caring and thoughtful sharing.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni
Thank you for so thoughtfully sharing the prescription mouthwash information. Hopefully mouth sores will not be an issue for Brittany during her Cediranib treatment, but we are very grateful to have the mouthwash information in the event that she does develop them. She received her first dose of the Cediranib medication this morning, but the doctor isn't expecting that she will experience any side effects for at least a week. I Hope that everything is going well with your radiation and that you are tolerating the treatment well. Please take care and know how deeply appreciative we are of your continued special caring and thoughtful sharing.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni
Re: Brittany Hess
Bonni,
thanks for sharing the wonderful news!
Beth
thanks for sharing the wonderful news!
Beth