Hey
Amanda thank you for nice words.
here is description of surgery that our surgeon from General mass made for us:
The type of surgery that is planned is a "radical resection of the right iliac wing, hip abductor muscles, and iliacus muscle." Before that is done a Urologist will place a catheter into Paula's right ureter (tube from the kidney to the bladder). The operation will be particularly complex because of the prior surgery and irradiation. We will need to explore the right femoral nerve in the pelvis and free it from scar. We will need to identify and protect the right ureter also in scar. We will need to free the iliac artery and vein from scar also.
Paula is nervous because surgery is very complicated, and there is some risk factors, I don't want to mention for now.
When I have more specified description of our treatment at GM in english I'll post it here.
Sunbeams for all of You
M
Paula from Poland - Dx 2009 - RIP 31/08/2011
Re: Paula
Hi all,
Now the date of our surgery is rescheduled for 9th of june, according to
difficulty securing the 'special' operating room required for intraoperative radiation that Paula is souposed to have.
So Paula is back on Sutent again and she will need to interrupt it for surgery. the question is when should she stop taking. In Poland we were advised to put Sutent away 48 hours before scheduled surgery of resection of primary. Some doctors though
said the break should be longer than 48 hours.
I am very curious if any of You had expirience with Sutent before surgery (I know that 'F' had with 'K') and how long was the break? Also how quick after surgery can one start taking sutent again?
warm greetings to you
mania
Now the date of our surgery is rescheduled for 9th of june, according to
difficulty securing the 'special' operating room required for intraoperative radiation that Paula is souposed to have.
So Paula is back on Sutent again and she will need to interrupt it for surgery. the question is when should she stop taking. In Poland we were advised to put Sutent away 48 hours before scheduled surgery of resection of primary. Some doctors though
said the break should be longer than 48 hours.
I am very curious if any of You had expirience with Sutent before surgery (I know that 'F' had with 'K') and how long was the break? Also how quick after surgery can one start taking sutent again?
warm greetings to you
mania
-
Fictional
Re: Paula
Hi mania,
We stopped for 3 weeks before surgery, and Fritz still said she was a little "oozey"...so little extra tendency to bleed. At that time we were on a 3-4 week on / 1 week off (don't remember exactly) schedule - though I think now more commonly people just take it every day... Because of the odd time that the surgery day fell on, we switched from the intermittent Sutent schedule to an every day schedule so it could be exactly 3 weeks off before surgery (if taken every day, the dose of Sutent was lower). After surgery, she waited 3 weeks before resuming.
: ) Great to have a set surgery day. Keeping her in our prayers,
'F'
We stopped for 3 weeks before surgery, and Fritz still said she was a little "oozey"...so little extra tendency to bleed. At that time we were on a 3-4 week on / 1 week off (don't remember exactly) schedule - though I think now more commonly people just take it every day... Because of the odd time that the surgery day fell on, we switched from the intermittent Sutent schedule to an every day schedule so it could be exactly 3 weeks off before surgery (if taken every day, the dose of Sutent was lower). After surgery, she waited 3 weeks before resuming.
: ) Great to have a set surgery day. Keeping her in our prayers,
'F'
Re: Paula
hi there
we have another rescheduling our paula's surgery. first we have to get all of the financial things in order to have the treatment started out of our country. i hope it won't last for too long, and next week we have another date for surgery. we are fund raising and waiting for our government decision to finance our treatment.
I wonder if this rescheduling is trying to tell us something. but what could that be possibly? resection of primary is always number 1 thing right?
In a meantime paula is feeling good. No sides effects of sutent.
Paula uses reflexology (zone therapy) wchich is an alternative medicine method involving the practice of massaging, squeezing, or pushing on parts of the face with the goal of encouraging a beneficial effect on other parts of the body, or to improve general health. She loves it very much, as it gives her a lot of relax and good feelings. She also fallows dr Budwigs diet, flax oil with cottage cheese every day.
She just swallowed a book by Dr Servan-Schreiber "anticaner" which I recommend to anyone interested in supporting cancer fighting with diet.
Greetings to all of You.
mania
we have another rescheduling our paula's surgery. first we have to get all of the financial things in order to have the treatment started out of our country. i hope it won't last for too long, and next week we have another date for surgery. we are fund raising and waiting for our government decision to finance our treatment.
I wonder if this rescheduling is trying to tell us something. but what could that be possibly? resection of primary is always number 1 thing right?
In a meantime paula is feeling good. No sides effects of sutent.
Paula uses reflexology (zone therapy) wchich is an alternative medicine method involving the practice of massaging, squeezing, or pushing on parts of the face with the goal of encouraging a beneficial effect on other parts of the body, or to improve general health. She loves it very much, as it gives her a lot of relax and good feelings. She also fallows dr Budwigs diet, flax oil with cottage cheese every day.
She just swallowed a book by Dr Servan-Schreiber "anticaner" which I recommend to anyone interested in supporting cancer fighting with diet.
Greetings to all of You.
mania
Re: Paula
Hello Mania 
I am happy to hear she is feeling well thru all this and that you are doing well also i am sure this is very hard for you both *hug*
As for the primary many in this forum believe that it is very important to remove it as did my surgon. My tumor was in my right calf and it was not as involved as what your sister is going thru right now. I am sure that the others will respond and let you know there feelings also soon I dont think it is a sign to not remove the tumor though it would be nice to not have to go thru this. I feel for myself and many others getting the main tumor removed is very important it spreads this desease more thru are system. How is the Sudent working? Reflexology is great and if she is feeling better from it i am very glad!
I too am using the Flax diet and though the taist is gross i believe it helps a lot. My sister is a five year cancer survivor and she was on the full Budwig diet and it is very very strict and must be continued for at least five years! Is she doing the full diet or just the breakfast? Diet helps the immune system and i and many others feel this can kill or keep some cancers at a stand still. But, please do not just use diet as a treatment! "Dr Servan-Schreiber "anticaner" I will look into this book thank you I am reading "Herbal Medicine, Healing & Cancer" By Donald R. Yance and i love it. My sister gave it to me..
My doctors say these diets could not hurt and that they are all finaly looking at the immune system to actually kill cancer in reasearch.
I belive that happieness and love and rest and laughter help also build an immune system. Please, make sure that what ever she is doing is talked over with the surgen and doctors so certine things can be stopped before the surgery. I think Flax maybe some thing that before the surgery must be stopped but i could be wrong.
Keeping you both and all of the families and paitents dealing with this ASPS diagnosis in are prayers and hearts!
Amanda R
I am happy to hear she is feeling well thru all this and that you are doing well also i am sure this is very hard for you both *hug*
As for the primary many in this forum believe that it is very important to remove it as did my surgon. My tumor was in my right calf and it was not as involved as what your sister is going thru right now. I am sure that the others will respond and let you know there feelings also soon
I dont think it is a sign to not remove the tumor though it would be nice to not have to go thru this. I feel for myself and many others getting the main tumor removed is very important it spreads this desease more thru are system. How is the Sudent working? Reflexology is great and if she is feeling better from it i am very glad! I too am using the Flax diet and though the taist is gross i believe it helps a lot. My sister is a five year cancer survivor and she was on the full Budwig diet and it is very very strict and must be continued for at least five years! Is she doing the full diet or just the breakfast? Diet helps the immune system and i and many others feel this can kill or keep some cancers at a stand still. But, please do not just use diet as a treatment! "Dr Servan-Schreiber "anticaner" I will look into this book thank you
I am reading "Herbal Medicine, Healing & Cancer" By Donald R. Yance and i love it. My sister gave it to me..My doctors say these diets could not hurt and that they are all finaly looking at the immune system to actually kill cancer in reasearch.
I belive that happieness and love and rest and laughter help also build an immune system. Please, make sure that what ever she is doing is talked over with the surgen and doctors so certine things can be stopped before the surgery. I think Flax maybe some thing that before the surgery must be stopped but i could be wrong.
Keeping you both and all of the families and paitents dealing with this ASPS diagnosis in are prayers and hearts!
Amanda R
MANIA wrote:hi there
we have another rescheduling our paula's surgery. first we have to get all of the financial things in order to have the treatment started out of our country. i hope it won't last for too long, and next week we have another date for surgery. we are fund raising and waiting for our government decision to finance our treatment.
I wonder if this rescheduling is trying to tell us something. but what could that be possibly? resection of primary is always number 1 thing right?
In a meantime paula is feeling good. No sides effects of sutent.
Paula uses reflexology (zone therapy) wchich is an alternative medicine method involving the practice of massaging, squeezing, or pushing on parts of the face with the goal of encouraging a beneficial effect on other parts of the body, or to improve general health. She loves it very much, as it gives her a lot of relax and good feelings. She also fallows dr Budwigs diet, flax oil with cottage cheese every day.
She just swallowed a book by Dr Servan-Schreiber "anticaner" which I recommend to anyone interested in supporting cancer fighting with diet.
Greetings to all of You.
mania
“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: Paula
Mania, thanks for the update. As you guys are waiting for the financial side of the treatment to be approved, in the mean time you could get a second opinion re.surgery plan from other recommended places and evaluate more options - to turn the delay into the advantage of getting more doctors look into Paula's situation.
Olga
Re: Paula
HI
thank You for your great advices!
Olga, You are so right. I am trying to get in touch with dr Eilber from CA recommended by 'F' here on this forum. But it is very difficult. I use phone, fax, emails, but unfortunately no answer. I sent scans of Paula in march there and still silence.
And dr Eilber is the only person that came to mind to have a second opinion from. I don't have any other surgeon expierienced in ASPS in mind . But if I only had I would be happy to have him evaluate our case.
Amanda it's so great You are also using this diet. it is such a little thing and it helps big time! I hope you love 'anticancer' book, i'm so happy we can share something here. Paula is trying to be strict with Budwig diet.
Of course I know for a fact that resection of a primary is crucial. It's just it's such a risky surgery in our case, that I'm hoping maybe delay is better? maybe sutent is killing the tumor, since Paula responded very well to it? and surgery will be easier?
Paula thinks diet ant other things are supportive for medical treatment, but we are far, far from saying "no" to traditional medicine. We know how crucial is surgery, then proton beam therapy after (by the way does any of you had expirienced proton radiation or heard it was used with ASPS?) and then after recovery we want to take care of lungs (thinking of guru of this subject dr Rolle).
Take good care.
Have a good day
Mania
thank You for your great advices!
Olga, You are so right. I am trying to get in touch with dr Eilber from CA recommended by 'F' here on this forum. But it is very difficult. I use phone, fax, emails, but unfortunately no answer. I sent scans of Paula in march there and still silence.
And dr Eilber is the only person that came to mind to have a second opinion from. I don't have any other surgeon expierienced in ASPS in mind . But if I only had I would be happy to have him evaluate our case.
Amanda it's so great You are also using this diet. it is such a little thing and it helps big time! I hope you love 'anticancer' book, i'm so happy we can share something here. Paula is trying to be strict with Budwig diet.
Of course I know for a fact that resection of a primary is crucial. It's just it's such a risky surgery in our case, that I'm hoping maybe delay is better? maybe sutent is killing the tumor, since Paula responded very well to it? and surgery will be easier?
Paula thinks diet ant other things are supportive for medical treatment, but we are far, far from saying "no" to traditional medicine. We know how crucial is surgery, then proton beam therapy after (by the way does any of you had expirienced proton radiation or heard it was used with ASPS?) and then after recovery we want to take care of lungs (thinking of guru of this subject dr Rolle).
Take good care.
Have a good day
Mania
Re: Paula
Hi!
Paula had CT scanc checking how Sutent is working.
Well it is working excellent! 15% of shrinkage in her pirmary, and ct scans showed only 2 mets left in right lung (abut 3mm big)
This is very good news! We are very encouraged.
I believe it is not only sutent working but also diet, reflexotherapy, simonton program at psychologicst. Paula works on every possible level, not only medical, and we are happy to see it is working.
greetings to all
Mania
Paula had CT scanc checking how Sutent is working.
Well it is working excellent! 15% of shrinkage in her pirmary, and ct scans showed only 2 mets left in right lung (abut 3mm big)
This is very good news! We are very encouraged.
I believe it is not only sutent working but also diet, reflexotherapy, simonton program at psychologicst. Paula works on every possible level, not only medical, and we are happy to see it is working.
greetings to all
Mania
Re: Paula
Thank you for the encouraging update about Sutent activity in ASPS. I have created new sub-forum for the Sutent (sunitinib) as a part of the Anti-Angiogenic Treatments to specifically collect all the info about Sutent use in ASPS patients and moved there what we had on Sutent before. I am opening a new topic for Paula there, could you please post more specifics there such as when did she start and how long did it take for the response, how many lung mets were seen then and now, what dose she takes and how are the side effects...
Olga
Re: Paula
Hello Paula
This is wonderful news!!!
Please, tell your sister what the doctors have told me "Keep doing what you are doing! "
I am so happy!
Healing wishes for all <3
Amanda R
This is wonderful news!!!
Please, tell your sister what the doctors have told me "Keep doing what you are doing! "
I am so happy!
Healing wishes for all <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
Re: Paula
Hi
Finally, after completing administrative/financial procedures we have surgery date at General Mass in Boston. It's scheduled on 19th of august! I will post the results of preoperative scans we are about to do soon, and see how everything looks. Paula is doing ok, a bit tired lately, but happy and optimistic.
Healing greatings for all
mania
Finally, after completing administrative/financial procedures we have surgery date at General Mass in Boston. It's scheduled on 19th of august! I will post the results of preoperative scans we are about to do soon, and see how everything looks. Paula is doing ok, a bit tired lately, but happy and optimistic.
Healing greatings for all
mania
Re: Paula
Dear Mania and Paula,
I am so glad you posted it had been a while and i was thinking about you both the other day wondering how you two were.
I am very glad every thing is now in order and that you will be getting the surgery soon!
I know you are sleepy and this maybe coming from the treatments or just the over all diagnosis it does take an emotional toll on you after a while. Now that you have the date for surgery there is a huge emotional exhale and that exhale made me also sleepy. Maybe this is why you feel like this?
Both of you hold strong and positive and smile! It has been a long trip and change in both of your lives.
Sending you both huge hugs! and healing hopes!
Amanda R
I am so glad you posted it had been a while and i was thinking about you both the other day wondering how you two were.
I am very glad every thing is now in order and that you will be getting the surgery soon!
I know you are sleepy and this maybe coming from the treatments or just the over all diagnosis it does take an emotional toll on you after a while. Now that you have the date for surgery there is a huge emotional exhale and that exhale made me also sleepy. Maybe this is why you feel like this?
Both of you hold strong and positive and smile! It has been a long trip and change in both of your lives.
Sending you both huge hugs! and healing hopes!
Amanda R
MANIA wrote:Hi
Finally, after completing administrative/financial procedures we have surgery date at General Mass in Boston. It's scheduled on 19th of august! I will post the results of preoperative scans we are about to do soon, and see how everything looks. Paula is doing ok, a bit tired lately, but happy and optimistic.
Healing greatings for all
mania
“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: Paula
Amanda
thanks it is very supportive to read from You.
I look and regulary here all the personal updates, I just don't write so often, never on other's people's subject. But I cheer for everyone, and I'm very happy to find You all here in such well organised and full of ino forum. Write You soon
Mania
thanks it is very supportive to read from You.
I look and regulary here all the personal updates, I just don't write so often, never on other's people's subject. But I cheer for everyone, and I'm very happy to find You all here in such well organised and full of ino forum. Write You soon
Mania
Re: Paula
So here I go with an update after Ct scans.
yesterday's Ct scans showed 1 nodule (about 3mm) in right lung. Primary stable, no change since june.
But...:
AROUND RIGHT HIP VESSELS - AN ABNORMAL SOFT TISSUE OBSERVED, OF THE SIZE OF 87 X 32 MM, COVERING THE RIGHT PARAMETRIUM. THE COMPUTER TOMOGRAPHY IMAGE REPRESENTS INFILTRATIVE LESION, DENSITY CA 25 J.H., SOME PROGRESSION SINCE JUNE 2009
We are so so so confused. We have no clue of what this is? 1.5 month and 80mm big new tumor???? Is it possible something grew so large over one month?
By the way Paulina is in excellent physical condition would it be possible something so big grew inside with no signs from the body?
It will be explained within next days hopefully. But it is unsure to discover such unpleasant surprises.
Greetings to all of You
mania
yesterday's Ct scans showed 1 nodule (about 3mm) in right lung. Primary stable, no change since june.
But...:
AROUND RIGHT HIP VESSELS - AN ABNORMAL SOFT TISSUE OBSERVED, OF THE SIZE OF 87 X 32 MM, COVERING THE RIGHT PARAMETRIUM. THE COMPUTER TOMOGRAPHY IMAGE REPRESENTS INFILTRATIVE LESION, DENSITY CA 25 J.H., SOME PROGRESSION SINCE JUNE 2009
We are so so so confused. We have no clue of what this is? 1.5 month and 80mm big new tumor???? Is it possible something grew so large over one month?
By the way Paulina is in excellent physical condition would it be possible something so big grew inside with no signs from the body?
It will be explained within next days hopefully. But it is unsure to discover such unpleasant surprises.
Greetings to all of You
mania