All together it is working *as i stated* and the vitamins to strengthen the immune system is fact..
An google the laser for gum infections it is far from not used ...
Where did you get "Pulsed laser" from ?
Laser is used for inflammation all over the world. So yes i fell better an i had no idea it was going to help with inflammation.. i told him the pain was stopping an asked why an then he told me and he is also a western medical Dr!
Im not going to defend myself and should not feel attacked in a place that is for healing!
Ivans post snide an it was blatant!
thank you, for all the help you've given me it was very much appreciated! It is going to be very hard trying to do this alone!
I will try and pop in soon...
I wish everyone all the best!
Amanda R :) from California - Dx 2009 - RIP March 2015
Amanda R :) from California - Dx 2009
Last edited by Amanda on Fri Nov 29, 2013 8:18 pm, edited 1 time in total.
“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: Amanda R :) from California - Dx 2009
Amanda
I know with all my heart that everyone is wishing you a day of continued and wonderful healing.
Love
Debbie and all the forum
I know with all my heart that everyone is wishing you a day of continued and wonderful healing.
Love
Debbie and all the forum
Debbie
Re: Amanda R :) from California - Dx 2009
Amanda, as Debbie said, everyone here wishes you the best and I am very sorry to watch your suffering with this endless, horrible pain with the jaw bone. It just can not go both ways - to care about you and to give you (and anyone here) the best available and evidence based information about what we can do to survive and in the same time NOT to care about you and just support whatever treatment you choose simply trying to cheer you up, if we have a sufficient reason to believe that some treatment proposed/taken is not evidence based and might be useless (and to distracts you from looking for other options) or even harmful.
Although we might need to try to be more gentle to each other by all means, understanding what are we all getting trough with this damn ASPS - Ivan including.
For example, you still do not know if this thing in you jaw bone is not an ASPS met. Does the doctor that performed the laser treatment on it know what effect can this treatment have on a bone metastasis - if it could increase the growth, cause dissemination? Unless it is studied, we do not know what effect it might have on the sarcoma cells. Any treatments to a suspected met should only be done after the origin of the problem is found for sure and all the options are carefully reviewed.
In general, any treatment can do 3 things - have zero effect (then why spend the money and support quackery), do something good (then there will be lots of happy publications out of there as any billion dollars industry is always happy to report the success and to promote itself) and do something bad (which is not to be ruled out unless proven otherwise esp. for the cancer patient).
Although we might need to try to be more gentle to each other by all means, understanding what are we all getting trough with this damn ASPS - Ivan including.
For example, you still do not know if this thing in you jaw bone is not an ASPS met. Does the doctor that performed the laser treatment on it know what effect can this treatment have on a bone metastasis - if it could increase the growth, cause dissemination? Unless it is studied, we do not know what effect it might have on the sarcoma cells. Any treatments to a suspected met should only be done after the origin of the problem is found for sure and all the options are carefully reviewed.
In general, any treatment can do 3 things - have zero effect (then why spend the money and support quackery), do something good (then there will be lots of happy publications out of there as any billion dollars industry is always happy to report the success and to promote itself) and do something bad (which is not to be ruled out unless proven otherwise esp. for the cancer patient).
Olga
Re: Amanda R :) from California - Dx 2009
Hello,
Ok, i see what you mean about the laser when put that way an ty
Being in pain this long also exasperates things so i think i went a little over the edge also on this situation an i am sorry for that but pain does wonderful things for nerves...
The vitamin C an B an D though there are lots of studies out showing its help with the immune system.
I am going thru a lot yes and even it is is now a each instead of the hellish pain i was in its now almost two months..
the anti biotic is not seeming to be able so far to kill this all the way though or it with an infection like this may take a lot longer to do its job an on Monday i hope he continues me on it and maybe steps it up a little.
the anti inflames *Morin 800mg* i am taking seem to make this smaller an now that the pain is a little less and not as wide spread i can feel where it is coming from it is the tube below the right side ear an sinus that is hurting an when i use the inflames the lump also gets smaller :/
Sarcoma doesn't shrink from mortin lol if it did we would all be put on it by our Oncs lol An this started the day the infection went to the sinus and ear an i am still stuffy ear and weird hearing in the right ear...
Ice cream stops the pain an thats a good thing
Ok, i see what you mean about the laser when put that way an ty
Being in pain this long also exasperates things so i think i went a little over the edge also on this situation an i am sorry for that but pain does wonderful things for nerves...
The vitamin C an B an D though there are lots of studies out showing its help with the immune system.
I am going thru a lot yes and even it is is now a each instead of the hellish pain i was in its now almost two months..
the anti biotic is not seeming to be able so far to kill this all the way though or it with an infection like this may take a lot longer to do its job an on Monday i hope he continues me on it and maybe steps it up a little.
the anti inflames *Morin 800mg* i am taking seem to make this smaller an now that the pain is a little less and not as wide spread i can feel where it is coming from it is the tube below the right side ear an sinus that is hurting an when i use the inflames the lump also gets smaller :/
Sarcoma doesn't shrink from mortin lol if it did we would all be put on it by our Oncs lol An this started the day the infection went to the sinus and ear an i am still stuffy ear and weird hearing in the right ear...
Ice cream stops the pain an thats a good thing
“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: Amanda R :) from California - Dx 2009
Amanda
Soooo glad your back
Here's to a pain free day, by way of ice cream and good vibes coming your way!
Love
Debbie
Soooo glad your back
Here's to a pain free day, by way of ice cream and good vibes coming your way!
Love
Debbie
Debbie
Re: Amanda R :) from California - Dx 2009
Lavender an rose water ice cream is a saving grace! Ty <3
“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
-
MarietjievdMerwe
- Member
- Posts: 162
- Joined: Fri Apr 13, 2012 7:59 am
Re: Amanda R :) from California - Dx 2009
Dear Amanda!
I would also like to add to your laser treatment. It is common practice in South Africa, only not the drs but physiotherapists are perfoming laser treatment on patients! And with great success.
As for the treatment by a homeopath: we had HUGE success in treating our youngest daughter, now 26 years old, when she was about 3 years old, by a homeopath. She had a serious lung infection which would not clear up for about two years. After homeopathy she was well away on her road to recovery.
I also believe that patients with this dreadfull asps will go to ANY lenghts to treat this monster, and therefor I do give you my support.
Do enjoy your beautiful ice cream on this Sunday.
Special thought and hugs from sunny South Africa.
Kind regards.
Marietjie.
I would also like to add to your laser treatment. It is common practice in South Africa, only not the drs but physiotherapists are perfoming laser treatment on patients! And with great success.
As for the treatment by a homeopath: we had HUGE success in treating our youngest daughter, now 26 years old, when she was about 3 years old, by a homeopath. She had a serious lung infection which would not clear up for about two years. After homeopathy she was well away on her road to recovery.
I also believe that patients with this dreadfull asps will go to ANY lenghts to treat this monster, and therefor I do give you my support.
Do enjoy your beautiful ice cream on this Sunday.
Special thought and hugs from sunny South Africa.
Kind regards.
Marietjie.
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear fellow ASPS Community members,
I continue to be deeply grateful for EVERYONE'S shared input and advice no matter how stated or given, because I know that it is offered out of special caring, concern, and friendship, and I am so appreciative of people taking the time and the effort to share information and personal insights. We may not always agree with each other because with many of the issues there are no definitive answers, but I personally appreciate having as much information as possible to assist me in researching the information and then reaching my own decisions. This is an extremely difficult and challenging battle which we all share and it is essential to not allow emotions and egos to prevent us from being willing to open mindedly consider other people's graciously offered information and advice without being offended or upset. Sadly, I personally know of three ASPS patients/their family members who became upset by comments made/advice given and consequently discontinued participation on this Board or the now defunct TAAASPS Board who tragically ultimately lost their battles. This is not to say that their continued participation would have saved their Lives, but perhaps they could have obtained some information about promising new treatments which may have given them other possibly effective treatment options, and at the very least, strengthening support and encouragement which is so very important for all of us fighting this extremely rare disease. We all need all of the information that we can obtain to make the most informed and best possible treatment decisions. Our focus needs to be fighting the disease, and not each other, and we all need to work together to fight it in harmony without hurt feelings or anger.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
I continue to be deeply grateful for EVERYONE'S shared input and advice no matter how stated or given, because I know that it is offered out of special caring, concern, and friendship, and I am so appreciative of people taking the time and the effort to share information and personal insights. We may not always agree with each other because with many of the issues there are no definitive answers, but I personally appreciate having as much information as possible to assist me in researching the information and then reaching my own decisions. This is an extremely difficult and challenging battle which we all share and it is essential to not allow emotions and egos to prevent us from being willing to open mindedly consider other people's graciously offered information and advice without being offended or upset. Sadly, I personally know of three ASPS patients/their family members who became upset by comments made/advice given and consequently discontinued participation on this Board or the now defunct TAAASPS Board who tragically ultimately lost their battles. This is not to say that their continued participation would have saved their Lives, but perhaps they could have obtained some information about promising new treatments which may have given them other possibly effective treatment options, and at the very least, strengthening support and encouragement which is so very important for all of us fighting this extremely rare disease. We all need all of the information that we can obtain to make the most informed and best possible treatment decisions. Our focus needs to be fighting the disease, and not each other, and we all need to work together to fight it in harmony without hurt feelings or anger.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Thank you for the very loving posts it meant very much to me! <3
An i am starting to slowly feel better now...
I am on a second two weeks of the antibiotic an then i will be going to drs and scans...
I saw rthw disease specialist an he is seeming to also lean towards infection but is very guarded it would seem because of my diagnosis.
12/12 CT JAW *They said they want a CT*
12/13 ENT will give me results
12/17 Dr Blackwell at UCLA *He will i am sure schedule a day to put me under to make sure this is NOT sarcoma by a biopsy* he is really well known for cancer treatments an i am praying that he will be able to make a fast diagnosis that doesn't need a biopsy..
but if i have ot have ne he is a good safer choice then many others...
In response to what happened...
Passions in helping others in this highly personal and painful emotionally horrible war with this cancer is sadly going to be filled with pain and struggle and frustration..
For myself i love the members here an i usually clearly understand that the posts are always given with a heart an a passion for helping everyone live thru this war!
Two months of pain for me made me less of an open hearted mind an it took Olga's post to wake that back up inside me about the laser an she was right an i am here today as i have stated before because of the posters here ...
Many have been upset by one person or another but i know though these posters are posting as they are because they are also fighting an are dam upset also so when they see another person going thru this it shows in the post.
In most cases if a calm mind an heart is present this is very visual in the reply...
Passion panic pain anger frustration devastation *to much to list* = sarcoma
No one is here to troll they are here to post an though at times it is in words that are not always loving and warm it is meant to help! We do not always have the warm fuzzies in our lives when we are dealing with sarcoma either as a family member or a patient...
As i was in so much pain for so long that reading what i did sent me thru the roof...
I would like to add that i do use western medical doctors and i do also see homeopathic licensed medical professionals that may oncs have sent me to see..
these are directors of major medical facilities that have refereed me to them in some cases...
sadly many doctors out there call themselves homeopathic doctors and they are not In my opinion some of these doctors from what i remember have possibly caused a few of our people to lose their fights early or use a medicine that counteracted the others medical treatment or pissed the sarcoma off *I suspect this* This is why at times there will be posts disagreeing with some things that may be done with our little special ASPS family. In my experience many in the medical field treat cancer as *cancer* well that doesn't work :/ and it is dangerous in some cases!
My homeopathic doctors know what i am taking and also refer back to my western medical Oncs...
I use many things many here wouldn't use sound wave and things that are not in the least proven to help in any medical records and in this country are being researched now to disrupt the cells...
Anyhow, myself an everyone needs to understand that this is a place that is fueled by sadness and frustration in a fight to live for themselves as a normal human or as a parent desperate to find a cure or help for their loved one. I will remember this next time i get hurt and though i will say that i was hurt i will also understand that it did come from a place of caring and that i will not leave nor will i stop posting in hopes that we all care an help each other enough and long enough that we win this ugly war!
My love an healing hopes for all of my ASPs family!
May we find a cure!
xox
An i am starting to slowly feel better now...
I am on a second two weeks of the antibiotic an then i will be going to drs and scans...
I saw rthw disease specialist an he is seeming to also lean towards infection but is very guarded it would seem because of my diagnosis.
12/12 CT JAW *They said they want a CT*
12/13 ENT will give me results
12/17 Dr Blackwell at UCLA *He will i am sure schedule a day to put me under to make sure this is NOT sarcoma by a biopsy* he is really well known for cancer treatments an i am praying that he will be able to make a fast diagnosis that doesn't need a biopsy..
but if i have ot have ne he is a good safer choice then many others...
In response to what happened...
Passions in helping others in this highly personal and painful emotionally horrible war with this cancer is sadly going to be filled with pain and struggle and frustration..
For myself i love the members here an i usually clearly understand that the posts are always given with a heart an a passion for helping everyone live thru this war!
Two months of pain for me made me less of an open hearted mind an it took Olga's post to wake that back up inside me about the laser an she was right an i am here today as i have stated before because of the posters here ...
Many have been upset by one person or another but i know though these posters are posting as they are because they are also fighting an are dam upset also so when they see another person going thru this it shows in the post.
In most cases if a calm mind an heart is present this is very visual in the reply...
Passion panic pain anger frustration devastation *to much to list* = sarcoma
No one is here to troll they are here to post an though at times it is in words that are not always loving and warm it is meant to help! We do not always have the warm fuzzies in our lives when we are dealing with sarcoma either as a family member or a patient...
As i was in so much pain for so long that reading what i did sent me thru the roof...
I would like to add that i do use western medical doctors and i do also see homeopathic licensed medical professionals that may oncs have sent me to see..
these are directors of major medical facilities that have refereed me to them in some cases...
sadly many doctors out there call themselves homeopathic doctors and they are not
In my opinion some of these doctors from what i remember have possibly caused a few of our people to lose their fights early or use a medicine that counteracted the others medical treatment or pissed the sarcoma off *I suspect this* This is why at times there will be posts disagreeing with some things that may be done with our little special ASPS family. In my experience many in the medical field treat cancer as *cancer* well that doesn't work :/ and it is dangerous in some cases! My homeopathic doctors know what i am taking and also refer back to my western medical Oncs...
I use many things many here wouldn't use sound wave and things that are not in the least proven to help in any medical records and in this country are being researched now to disrupt the cells...
Anyhow, myself an everyone needs to understand that this is a place that is fueled by sadness and frustration in a fight to live for themselves as a normal human or as a parent desperate to find a cure or help for their loved one. I will remember this next time i get hurt and though i will say that i was hurt i will also understand that it did come from a place of caring and that i will not leave nor will i stop posting in hopes that we all care an help each other enough and long enough that we win this ugly war!
My love an healing hopes for all of my ASPs family!
May we find a cure!
xox
“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: Amanda R :) from California - Dx 2009
Amanda
In response to your
My love an healing hopes for all of my ASPs family!
May we find a cure!
Amen
Love
Debbie
In response to your
My love an healing hopes for all of my ASPs family!
May we find a cure!
Amen
Love
Debbie
Debbie
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
Thank you for somehow finding the energy and clarity of thought in the midst of all of your pain, worry, stress, and anguish to post your heartfelt thoughts and feelings which will Hopefully bring closure to any further negativity on this Board resulting from hurt feelings, misunderstandings, or differences of opinions.
Thank you too for thoughtfully sharing the schedule for your upcoming scans and appointments to try to definitively determine the nature of your jaw pain and inflammation. Obviously all of us on this Board care very deeply about you, value your participation on the Board, and want only the most positive outcome for what you are going through. Hopefully you will continue to feel better with decreased and resolving pain and swelling, and the tentatively planned biopsy with Dr. Balckwell will prove to be unnecessary. Hopefully too you will be able to get plenty of rest and just focus your time and positive energy on healing. Please take care dear Amanda and keep the Board updated as you are able.
With gentle hugs, deepest caring, healing wishes, and continued Hope,
Bonni
Thank you for somehow finding the energy and clarity of thought in the midst of all of your pain, worry, stress, and anguish to post your heartfelt thoughts and feelings which will Hopefully bring closure to any further negativity on this Board resulting from hurt feelings, misunderstandings, or differences of opinions.
Thank you too for thoughtfully sharing the schedule for your upcoming scans and appointments to try to definitively determine the nature of your jaw pain and inflammation. Obviously all of us on this Board care very deeply about you, value your participation on the Board, and want only the most positive outcome for what you are going through. Hopefully you will continue to feel better with decreased and resolving pain and swelling, and the tentatively planned biopsy with Dr. Balckwell will prove to be unnecessary. Hopefully too you will be able to get plenty of rest and just focus your time and positive energy on healing. Please take care dear Amanda and keep the Board updated as you are able.
With gentle hugs, deepest caring, healing wishes, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Hello
Well, pain is a little less today and i am not feeling like the life was sucked out of me really as i was before!
Antibiotics are trying to get to me but yogurt is helping a lot!
the pain from this is unbelievable an it is still there but different an now much more tolerable thank goodness!
On the 12/17 appointment i will stress if a biopsy is a much i want it in the OR an inform him of the bleeding situation with ASPS..
I will also ask for an MRI an i will shove my dam head in the machine an take meds ...
I also want Cryo over any cutting surgery so i hope very much he does this or will talk to Ivans Dr an share information...
Hugs love and happy holidays no matter where you are in the world or celibrating xoxox
Well, pain is a little less today and i am not feeling like the life was sucked out of me really as i was before!
Antibiotics are trying to get to me but yogurt is helping a lot!
the pain from this is unbelievable an it is still there but different an now much more tolerable thank goodness!
On the 12/17 appointment i will stress if a biopsy is a much i want it in the OR an inform him of the bleeding situation with ASPS..
I will also ask for an MRI an i will shove my dam head in the machine an take meds ...
I also want Cryo over any cutting surgery so i hope very much he does this or will talk to Ivans Dr an share information...
Hugs love and happy holidays no matter where you are in the world or celibrating xoxox
“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: Amanda R :) from California - Dx 2009
Dear Amanda,
I am so grateful that your pain is decreasing and you are feeling better, but I wish, as I know that you do, that the pain would hurry up and go away completely and permanently!! Regarding your need to have a head MRI and you being so extremely claustrophobic, have you looked into finding an open MRI for the scan? I have seen these advertised several places and it would certainly help resolve your fear of and reluctance about having an enclosed MRI. Take care, keep feeling better, and enjoy a wonderful Holiday season.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
I am so grateful that your pain is decreasing and you are feeling better, but I wish, as I know that you do, that the pain would hurry up and go away completely and permanently!! Regarding your need to have a head MRI and you being so extremely claustrophobic, have you looked into finding an open MRI for the scan? I have seen these advertised several places and it would certainly help resolve your fear of and reluctance about having an enclosed MRI. Take care, keep feeling better, and enjoy a wonderful Holiday season.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
AmandaI will remember this next time i get hurt and though i will say that i was hurt i will also understand that it did come from a place of caring and that i will not leave nor will i stop posting in hopes that we all care an help each other enough and long enough that we win this ugly war!
You are correct in saying that it is hard to rise above being hurt
I am so glad you did cause you are correct. We are an ASPS family and care deeply for everyone here which means you too
I hope for a pain free night for you
Love
Debbie
Debbie
Re: Amanda R :) from California - Dx 2009
Hi Amanda,
How are you doing now? I hope the jaw pain is gone after the antibiotics--I really hope it's not ASPS.
Can't believe it tortured you over a month before something was prescribed.
Take care and wish you can get the MRI or biopsy from the doctor on your 12/17 appointment.
Lynette
How are you doing now? I hope the jaw pain is gone after the antibiotics--I really hope it's not ASPS.
Can't believe it tortured you over a month before something was prescribed.
Take care and wish you can get the MRI or biopsy from the doctor on your 12/17 appointment.
Lynette