Hi Amanda,
Good to know that the radiation is over. The local skin reaction will get better soon, Sree's right calf looks almost normal now.
I'm sorry to hear about your rib lesion. How did the doctor know that its been there for years ?
All the best with the surgery and do update when you find the time.
Amanda R :) from California - Dx 2009 - RIP March 2015
Re: Amanda R. :)
Hi Arch 
They said that they think it has been there for years because it made a lil hole in my rib. Also, for about a year or so i have had a lil bit of pain in my rib in that area so i am guessing that is why. I was told all kinda of things when i would tell the doctors about it and sadly they were wrong and it was ASPS. I think my surgery will be on July 6th or 7th and I cant wait to get it over with! Then four weeks to get myself better and then i HOPE i can go back to work for a few months. Life is so up in the air now with making long term plans now. I am sure oyu are going thru the same as i am right now.. How is he feeling now and what is the next step? How are you holding up and the kids?
Healing hopes for a cure!
Amanda R
They said that they think it has been there for years because it made a lil hole in my rib. Also, for about a year or so i have had a lil bit of pain in my rib in that area so i am guessing that is why. I was told all kinda of things when i would tell the doctors about it and sadly they were wrong and it was ASPS. I think my surgery will be on July 6th or 7th and I cant wait to get it over with! Then four weeks to get myself better and then i HOPE i can go back to work for a few months. Life is so up in the air now with making long term plans now. I am sure oyu are going thru the same as i am right now.. How is he feeling now and what is the next step? How are you holding up and the kids?
Healing hopes for a cure!
Amanda R
Arch wrote:Hi Amanda,
Good to know that the radiation is over. The local skin reaction will get better soon, Sree's right calf looks almost normal now.
I'm sorry to hear about your rib lesion. How did the doctor know that its been there for years ?
All the best with the surgery and do update when you find the 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: Amanda R. :)
Hi Amanda,
All the best for your surgery in July. Our next step is to go to Dr.Rolle for the second surgery, he operated on the right lung last time, the left lung also has many mets. We need to also think of a systemic treatment for Sree, his thoroctomy on the right lung is incomplete.
We are just taking it one day at a time. Whenever he feels ok, we go about and live the close to normal life. Regarding our kid, we try to maintain her normal routine, she understands a lot about her father's disease. I feel its ok to tell the children some things because they know something is happening and when we don't talk about it to them, they imagine a lot more things.
All the best for your surgery in July. Our next step is to go to Dr.Rolle for the second surgery, he operated on the right lung last time, the left lung also has many mets. We need to also think of a systemic treatment for Sree, his thoroctomy on the right lung is incomplete.
We are just taking it one day at a time. Whenever he feels ok, we go about and live the close to normal life. Regarding our kid, we try to maintain her normal routine, she understands a lot about her father's disease. I feel its ok to tell the children some things because they know something is happening and when we don't talk about it to them, they imagine a lot more things.
Re: Amanda R. :)
Hello,
I am so sleepy right now from the radiation thearapy and it is frightening to me
Does anyone have any tips or ideas to make me feel better? Olga, i wish i didnt do this you were right i feel so bad right now
My Onc said this is normal. But, this is so bad
Healing hopes for all!
Amanda R
I am so sleepy right now from the radiation thearapy and it is frightening to me
Does anyone have any tips or ideas to make me feel better? Olga, i wish i didnt do this you were right i feel so bad right now My Onc said this is normal. But, this is so bad
Healing hopes for all!
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: Amanda R. :)
Greetings
This is just a small update on how i am feeling and surgery information...
The surgery to remove the 2.5 cm tunor on and in my right side 8th rib has been moved to July 16th 09 because i have a sunus infection.
Other then the sinus infection i feel great and have no pain in any part of my body.
My hair and skin are continuing to look better and after many talks about this we have concluded that what ever the tumor was putting out in my body was stopped when we removed it i have continued to heal rapidly.
After 33 radiation treatments to my right leg my leg looked not so great and i was very much feeling the effects.
I am happy to post that my leg is even in color almost compleatly healed after three weeks and i am very happy about that and i now have no side effects to post.
I am in hopes that this desease has not spread beyond my rib and that there will be no new things in my CT scans end of Aug.
When i last spoke to my Onc i asked if it was at all possible that this had just gone to my rib and he stated yes. But, with ASPS i have no trust in what anyone says about if it is in more places till i see scan results. Though as we all do with ASPS we have hope and that is really what matters.
In healing hopes for all!
AmandaR
This is just a small update on how i am feeling and surgery information...
The surgery to remove the 2.5 cm tunor on and in my right side 8th rib has been moved to July 16th 09 because i have a sunus infection.
Other then the sinus infection i feel great and have no pain in any part of my body.
My hair and skin are continuing to look better and after many talks about this we have concluded that what ever the tumor was putting out in my body was stopped when we removed it i have continued to heal rapidly.
After 33 radiation treatments to my right leg my leg looked not so great and i was very much feeling the effects.
I am happy to post that my leg is even in color almost compleatly healed after three weeks and i am very happy about that and i now have no side effects to post.
I am in hopes that this desease has not spread beyond my rib and that there will be no new things in my CT scans end of Aug.
When i last spoke to my Onc i asked if it was at all possible that this had just gone to my rib and he stated yes. But, with ASPS i have no trust in what anyone says about if it is in more places till i see scan results. Though as we all do with ASPS we have hope and that is really what matters.
In healing hopes for all!
AmandaR
“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. :)
Greetings,
Update time and some decisions now pending and would love to get feed back from you all!
In the last two months aprox I ended radiation 33 treatments and now though my leg looks good. The pain that i felt after the surgery seems to be back to where it was pre radiation and i am slowly re healing again.
The surgery to the 2.5 CM tumor in my rib has been at a stand still because the surgen says he wants me to heal first. I have has this tumor for a very very long time to the point that it made a hole in my 8th rib. When i ased him if he felt it was becoming necrotic he said that it maybe but that the small amount taken in the biopsy showed that it was not. But, again said it was a small amount taken and he cant rule either thought out at this time.
We talked about the chemo option and my retort to them was as fallowes and please corect me if i am worng
I told him that if there is no change chemo would be a bad idea for a few reasons. The tumor is stable there is no evidence of any grouth at all and that if they damage my immune system then it has a strong possibility of either starting to grow again or the tumor becoming resistant to the chemo they wanted to use. Furthermore my chances of getting into a clinical trial my be denied and other treatments maybe denied because i have gone on chemo. Also, that if they wanted to see what chemo would work then the tumor could be tested for a responce.
I am at a point now that i must go back to work or loose my insurance and this would be very bad! The surgen said that this tumor has not changed in about seven months and he would like a scan done in about a week and he wants to look at my lungs and rib again to make sure that there is no change and then i may go back to work for three and a half months to keep my insurance and also make some money to support my family thru this next surgery.
I am in a lot of fear about the surgery They said they will have me in ICU and though thats great that i will be watched so close it drove a deep fear into me that what if they think i will die from this and what will happen to my lil boy! I would realy love it is a few paitents would post back to me about this fear I need to talk to someone that has been there and felt this fear also! Many of you have gone thru a lot and I need to eaither be told aww Amanda hush this is not a huge deal and it will be fine or Amanda i was scarred also.
In hopes for healing for all!
Amanda R
Update time and some decisions now pending and would love to get feed back from you all!
In the last two months aprox I ended radiation 33 treatments and now though my leg looks good. The pain that i felt after the surgery seems to be back to where it was pre radiation and i am slowly re healing again.
The surgery to the 2.5 CM tumor in my rib has been at a stand still because the surgen says he wants me to heal first. I have has this tumor for a very very long time to the point that it made a hole in my 8th rib. When i ased him if he felt it was becoming necrotic he said that it maybe but that the small amount taken in the biopsy showed that it was not. But, again said it was a small amount taken and he cant rule either thought out at this time.
We talked about the chemo option and my retort to them was as fallowes and please corect me if i am worng
I told him that if there is no change chemo would be a bad idea for a few reasons. The tumor is stable there is no evidence of any grouth at all and that if they damage my immune system then it has a strong possibility of either starting to grow again or the tumor becoming resistant to the chemo they wanted to use. Furthermore my chances of getting into a clinical trial my be denied and other treatments maybe denied because i have gone on chemo. Also, that if they wanted to see what chemo would work then the tumor could be tested for a responce.
I am at a point now that i must go back to work or loose my insurance and this would be very bad! The surgen said that this tumor has not changed in about seven months and he would like a scan done in about a week and he wants to look at my lungs and rib again to make sure that there is no change and then i may go back to work for three and a half months to keep my insurance and also make some money to support my family thru this next surgery.
I am in a lot of fear about the surgery
They said they will have me in ICU and though thats great that i will be watched so close it drove a deep fear into me that what if they think i will die from this and what will happen to my lil boy! I would realy love it is a few paitents would post back to me about this fear I need to talk to someone that has been there and felt this fear also! Many of you have gone thru a lot and I need to eaither be told aww Amanda hush this is not a huge deal and it will be fine or Amanda i was scarred also.In hopes for healing for all!
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: Amanda R. :) Scan 7/09
Hello Everyone,
I just got my scan results back from my CT of chest and they said all five things found in my lungs are still stable. No change sence first scan done in Jan 09. I also remember seeing the scan and seeing inflamation surounding all of the things in my lungs they said it was inflamation and does this mean possible necrossis?
My 8th rib they said showed only a mm change and that this could be from the CT pictures and not mean a grouth.
I was told i can go back to work till Nov 09 and then do the surgery on he rib. Anyone have any imput on all this?
In healing hopes for all!
Amanda R
I just got my scan results back from my CT of chest and they said all five things found in my lungs are still stable. No change sence first scan done in Jan 09. I also remember seeing the scan and seeing inflamation surounding all of the things in my lungs they said it was inflamation and does this mean possible necrossis?
My 8th rib they said showed only a mm change and that this could be from the CT pictures and not mean a grouth.
I was told i can go back to work till Nov 09 and then do the surgery on he rib. Anyone have any imput on all this?
In healing hopes for all!
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: Amanda R. :)
What is the size of this tumor on the rib? I have seen the cases when the ASPS mets in the bones were completely treated by the radiation treatment alone. You surely have to do everything possible to keep the health insurance.
Olga
-
Fictional
Re: Amanda R. :)
Do hold onto your insurance. That is very important.
It is not true that any chemo will prevent you from getting into a clinical trial. All trials vary - but usually there is a period - if you had been on something you have to wait for 2-3 weeks before beginning a trial.
Don't be worried about surgery. Surgery is so much better than it used to be - and most people agree that surgery is easier than conventional cytotoxic chemo. 'K' has had 3 surgeries now on her lungs - brief ICU stay each time after surgery. By a week after, she was walking around or discharged (when in LA) from the hospital.
Sounds like you're doing well, Amanda. Great!
It is not true that any chemo will prevent you from getting into a clinical trial. All trials vary - but usually there is a period - if you had been on something you have to wait for 2-3 weeks before beginning a trial.
Don't be worried about surgery. Surgery is so much better than it used to be - and most people agree that surgery is easier than conventional cytotoxic chemo. 'K' has had 3 surgeries now on her lungs - brief ICU stay each time after surgery. By a week after, she was walking around or discharged (when in LA) from the hospital.
Sounds like you're doing well, Amanda. Great!
Re: Amanda R. :)
Hello Olga,
If i am remembering corect the tumor in my rib is 2.5 CM and they said i have had this in my rib for so many years that the tumor eat a hole in my rib. I am thankful that it went to my rib and not outward as far as we can see. They said that they are worried about hitting my lung with the radiation so maybe this is why they are not doing it and the surgery :/ To be honest i would rather do the radiation. The surgon i have is amasing though for the rib. Either way i would be in excelent hands. If after you post you feel this can be hopfuly dealt with radiation only then i will tell them i would like that looked into asap
What do you feel about the lungs :/
If i am remembering corect the tumor in my rib is 2.5 CM and they said i have had this in my rib for so many years that the tumor eat a hole in my rib. I am thankful that it went to my rib and not outward as far as we can see. They said that they are worried about hitting my lung with the radiation so maybe this is why they are not doing it and the surgery :/ To be honest i would rather do the radiation. The surgon i have is amasing though for the rib. Either way i would be in excelent hands. If after you post you feel this can be hopfuly dealt with radiation only then i will tell them i would like that looked into asap
What do you feel about the lungs :/
Olga wrote:What is the size of this tumor on the rib? I have seen the cases when the ASPS mets in the bones were completely treated by the radiation treatment alone. You surely have to do everything possible to keep the health insurance.
“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. :)
Hello 'F',
I am going to do all in my power to keep this insurance. It is very good and covered almost every thing even when i went out of network to Ceders here in La. I am keeping my fingers crossed that i get a show right after the one i will i hope be starting on monday.
I am very glad to hear you say that i can do chemo if they choose to do this on me. I am holding hope that i can get on the same drug Brittany is on when needed!
I think i am more worried as a mother about the possibilites of my not making it thru any thing because of my lil one :/ Everyone is saying what you are about surgerys and I need to try and not be such a worrie wart about this. I am just starting this journey and i think i need to get a bit tuffer because who knows what is on the horizon for me.
I am doing great for now and though i did cry happy tears when they told me the results i know that it is on a day to day basis and that this evil desease does what it wants when it wants. But, for this moment yes it is great!
Amanda R
I am going to do all in my power to keep this insurance. It is very good and covered almost every thing even when i went out of network to Ceders here in La. I am keeping my fingers crossed that i get a show right after the one i will i hope be starting on monday.
I am very glad to hear you say that i can do chemo if they choose to do this on me. I am holding hope that i can get on the same drug Brittany is on when needed!
I think i am more worried as a mother about the possibilites of my not making it thru any thing because of my lil one :/ Everyone is saying what you are about surgerys and I need to try and not be such a worrie wart about this. I am just starting this journey and i think i need to get a bit tuffer because who knows what is on the horizon for me.
I am doing great for now and though i did cry happy tears when they told me the results i know that it is on a day to day basis and that this evil desease does what it wants when it wants. But, for this moment yes it is great!
Amanda R
'F' wrote:Do hold onto your insurance. That is very important.
It is not true that any chemo will prevent you from getting into a clinical trial. All trials vary - but usually there is a period - if you had been on something you have to wait for 2-3 weeks before beginning a trial.
Don't be worried about surgery. Surgery is so much better than it used to be - and most people agree that surgery is easier than conventional cytotoxic chemo. 'K' has had 3 surgeries now on her lungs - brief ICU stay each time after surgery. By a week after, she was walking around or discharged (when in LA) from the hospital.
Sounds like you're doing well, Amanda. Great!
“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. :)
Hi Amanda,
Glad to know that your rib and lung mets are stable. Don't worry, it doesn't help one bit. We just have to do our best and see how things go.
Take care and maybe going back to work will get your mind off this for some time now.
Arch
Glad to know that your rib and lung mets are stable. Don't worry, it doesn't help one bit. We just have to do our best and see how things go.
Take care and maybe going back to work will get your mind off this for some time now.
Arch
Need input please ;)
Hello
Well, I am righting because I am in two weeks going to be getting my scans done again and as usual I am freaked out to what will be seen inthe scans. Also, the surgery for my rib should be in about forty five days. I wanted to ask everyone what they thought about if I am still stable pushing this surgery for the rib a few months more into next year :/ Or do you feel that even if I am stable that it can spread?
I have the flue right now and I pray with all my heart that none of you get this! I am miserable to say the least. It has made my sinus infection come back and now I am on my 5th round of antibiotics *sigh*
My concern is that the antibiotics are hurting my immune system
I know this post is not like my others I am far from peppy and positive at this moment and for this I apologize!
Please, let me know what you all think it as always means a lot to me! <3
In healing hopes for all and smiles as we enter the holidays!
Amanda
Well, I am righting because I am in two weeks going to be getting my scans done again and as usual I am freaked out to what will be seen inthe scans. Also, the surgery for my rib should be in about forty five days. I wanted to ask everyone what they thought about if I am still stable pushing this surgery for the rib a few months more into next year :/ Or do you feel that even if I am stable that it can spread?
I have the flue right now and I pray with all my heart that none of you get this! I am miserable to say the least. It has made my sinus infection come back and now I am on my 5th round of antibiotics *sigh*
My concern is that the antibiotics are hurting my immune system
I know this post is not like my others I am far from peppy and positive at this moment and for this I apologize!
Please, let me know what you all think it as always means a lot to me! <3
In healing hopes for all and smiles as we enter the holidays!
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
Re: Amanda R. :)
Amanda - I am sorry to hear about the flu, is it the regular one or H1N1 variety? Some of my sarcoma friends from NY said that they got this new flu - all 4 people in the family starting with the kids, brought it from school - so they started taking Tamiflu 12 hours after the first symptoms and they were OK after being 2 days on it!
Re. the surgery - my advice is to do is as soon as possible, because the problem is that you should really try to achieve having lung mets ONLY in case you'll ever need a surgery, so having other mets somewhere would not preclude you from having that. And yes, it is able to spread as it stays and also it might have a negative influence on your immune system.
Re. the surgery - my advice is to do is as soon as possible, because the problem is that you should really try to achieve having lung mets ONLY in case you'll ever need a surgery, so having other mets somewhere would not preclude you from having that. And yes, it is able to spread as it stays and also it might have a negative influence on your immune system.
Olga
Re: Amanda R. :)
Hello Olga,
Thank you for responding so fast
I feel like i was hit by a bus then yelled at and then run over again for good measure. I am now four to five days into this and i dont know what kinbd of flue this is. I will see the doctor today at 3:00 and see what he thinks this is. It also started with my lil one and then my boyfriend got it and i didnt and i made a proud crack that i had not gotten it.. Well, I got it worse then them both *sigh* so i will see what the doctor says today and post back.
Ok, you confurmed my fear also that it can spread and I will have the surgery done in November We still have no idea if what is in my lungs is mets and it is frustrating if they are necrotic wouldnt they have started to go away by now? They say all other areas at this time are clear and i pray it stayes this way yet i know this can come back in two months or twenty years.
I again wish i wouldnt have done the radiation it has created more problems in my leg and possibly my immune system and with the odds of re acurance in that area I wouldnt advise this now with negitive margins to anyone. After my surgery my leg was healing fast and doing well no swelling and the pain was almost gone. Then i did the 32 treatments and now i have swelling and pain that at times ot the light touch is very bad!
In healing hopes for all!
AmandaR
Thank you for responding so fast
I feel like i was hit by a bus then yelled at and then run over again for good measure. I am now four to five days into this and i dont know what kinbd of flue this is. I will see the doctor today at 3:00 and see what he thinks this is. It also started with my lil one and then my boyfriend got it and i didnt and i made a proud crack that i had not gotten it.. Well, I got it worse then them both *sigh* so i will see what the doctor says today and post back.
Ok, you confurmed my fear also that it can spread and I will have the surgery done in November
We still have no idea if what is in my lungs is mets and it is frustrating if they are necrotic wouldnt they have started to go away by now? They say all other areas at this time are clear and i pray it stayes this way yet i know this can come back in two months or twenty years. I again wish i wouldnt have done the radiation it has created more problems in my leg and possibly my immune system and with the odds of re acurance in that area I wouldnt advise this now with negitive margins to anyone. After my surgery my leg was healing fast and doing well no swelling and the pain was almost gone. Then i did the 32 treatments and now i have swelling and pain that at times ot the light touch is very bad!
In healing hopes for all!
AmandaR
“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