It has been about a month and so much was going on and you have not posted so i though i would send a *hug* to you both and let you know you are in my thoughts....
In healing hopes for all!
Amanda
Paula from Poland - Dx 2009 - RIP 31/08/2011
Re: Paula
Dear Mania and Paula
It has been about a month and so much was going on and you have not posted so i though i would send a *hug* to you both and let you know you are in my thoughts....
In healing hopes for all!
Amanda
It has been about a month and so much was going on and you have not posted so i though i would send a *hug* to you both and let you know you are in my thoughts....
In healing hopes for all!
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: Paula
Hi!
I pick in often on this forum. I read everyones updates, I never write anything because there are so many expirienced people here, I don't have much to say and I really feel I can't advise anything to others since I'm learning all about ASPS myself, and I feel I know so little. But always I cheer on everyone to be strong and happy on their way with this difficult disease! Amanda, thank You for thinking about us.
So here is a litlle update about Paula:
After surgery of removal of her big tumor from her hip, she healed and had ct scans which showed around 20 nodules in her lungs. It was hard to hear, but we tend to suspect they were there the whole time, maybe got slighlty bigger. She had proton radiation for 2 weeks, because some microscopic tumor cells were left in the pelvic area after removal (it was most likely because of the scar tissue after strong radiation she had in Poland right after diagnosis). Proton radiation went very well, no side effects. Now she is back in Poland, and almost 2 weeks after radiation. She is starting sutent nowdays. And in 3 months she will have her scans. The facts are she feels terrific, looks beautyfull, and enjoys her new life without big tumor, and with trustable doctors from Boston. It has been really exhausting 9 months since diagnosis, so now it's time for her and our family to regenerate a bit.
We have to stay alert obviously, we are all living with this cancer and we can't pretend it is not there.
So...I hope You are all well. Please know we keep You in our thoughts, we are sending You a lot of love.
I pick in often on this forum. I read everyones updates, I never write anything because there are so many expirienced people here, I don't have much to say and I really feel I can't advise anything to others since I'm learning all about ASPS myself, and I feel I know so little. But always I cheer on everyone to be strong and happy on their way with this difficult disease! Amanda, thank You for thinking about us.
So here is a litlle update about Paula:
After surgery of removal of her big tumor from her hip, she healed and had ct scans which showed around 20 nodules in her lungs. It was hard to hear, but we tend to suspect they were there the whole time, maybe got slighlty bigger. She had proton radiation for 2 weeks, because some microscopic tumor cells were left in the pelvic area after removal (it was most likely because of the scar tissue after strong radiation she had in Poland right after diagnosis). Proton radiation went very well, no side effects. Now she is back in Poland, and almost 2 weeks after radiation. She is starting sutent nowdays. And in 3 months she will have her scans. The facts are she feels terrific, looks beautyfull, and enjoys her new life without big tumor, and with trustable doctors from Boston. It has been really exhausting 9 months since diagnosis, so now it's time for her and our family to regenerate a bit.
We have to stay alert obviously, we are all living with this cancer and we can't pretend it is not there.
So...I hope You are all well. Please know we keep You in our thoughts, we are sending You a lot of love.
Re: Paula
I am really happy to hear that she's doing well. Sometimes, it's important to forget about it (when the disease gives you a break somewhat) and to just live a normal life.
I would encourage Paula to do some sports, and exercise to recover from her procedures better.
All the best to our Polish friends
I would encourage Paula to do some sports, and exercise to recover from her procedures better.
All the best to our Polish friends
Re: Paula
Hi!
Paula just had her followup check up and we want to share it with You. Scans of lungs showed that "there are numerous scattered small pulmonary nodules measuring between 2 to 4 mm, majority of which demonstrate mild interval decrease in size. Remaining pulmonary nodules are
stable and there are no new suspicious pulmonary nodules identified. For example, the largest pulmonary nodule in the right lower lobe now measures 4 mm compared to previously measuring 5 mm. " So she is stable, and trying to live her life not to worry too much. She stays on Sutent, next check up will be done in april in Poland, and june (latest) in Boston. We hope all of You are well - tons of greetings!
Paula just had her followup check up and we want to share it with You. Scans of lungs showed that "there are numerous scattered small pulmonary nodules measuring between 2 to 4 mm, majority of which demonstrate mild interval decrease in size. Remaining pulmonary nodules are
stable and there are no new suspicious pulmonary nodules identified. For example, the largest pulmonary nodule in the right lower lobe now measures 4 mm compared to previously measuring 5 mm. " So she is stable, and trying to live her life not to worry too much. She stays on Sutent, next check up will be done in april in Poland, and june (latest) in Boston. We hope all of You are well - tons of greetings!
-
Fictional
Re: Paula
Mania and Paula,
Great to hear that Paula has been feeling well and although it's disappointing to hear about all the new ones, it sounds as if she is doing well with the Sutent especially as it is not uncommon to have a dramatic rebound in growth after having a large primary tumor removed. The fact the largest ones (5 mm) even seemed to get smaller by a bit is great news at 3 months after her primary being removed.
'K' had Sutent before her primary was removed - and we think that was good for her, but she didn't have Sutent after the surgery and that may have been a mistake looking backwards. Some of the lung nodules really grew rapidly by then and that triggered her first lung surgery.
We may consider going on Sutent again if 'K''s current drug (R1507, 7 months) stops working. She was on Sutent now 2+ years ago. Cediranib looks good, but is more toxic.
Blessings to you and your families,
'F'
Great to hear that Paula has been feeling well and although it's disappointing to hear about all the new ones, it sounds as if she is doing well with the Sutent especially as it is not uncommon to have a dramatic rebound in growth after having a large primary tumor removed. The fact the largest ones (5 mm) even seemed to get smaller by a bit is great news at 3 months after her primary being removed.
'K' had Sutent before her primary was removed - and we think that was good for her, but she didn't have Sutent after the surgery and that may have been a mistake looking backwards. Some of the lung nodules really grew rapidly by then and that triggered her first lung surgery.
We may consider going on Sutent again if 'K''s current drug (R1507, 7 months) stops working. She was on Sutent now 2+ years ago. Cediranib looks good, but is more toxic.
Blessings to you and your families,
'F'
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
Thank you for your thoughtful update with the very good and encouraging news about Paula's most recent scan results. 'F' said that "it's disappointing to hear about all the new ones", but if I read your entry correctly that "there are numerous scattered small pulmonary nodules measuring between 2 to 4 mm, majority of which demonstrate mild interval decrease in size.", it indicates to me that the nodules are not new but rather lung mets which were already seen on previous scans and have now slightly decreased in size. If my interpretation of your upated information is correct, it appears that there are no new lung nodules and that the Sutent thankfully seems to be preventing the growth of any new mets and causing the shrinkage of many of the existing ones. Were any scans done to determine the status of the area of Paula's hip tumor resection, and pelvic area radiation, and will she be having only chest CT scans in April and June, or will she also have abdominal/pelvic Ct's and a brain MRI to ensure that there are no new mets anywhere else in her body? In Brittany's situation, her Cediranib Clinical Trial in Edmonton is only following her lung, pancreatic, spleen, and duodenum mets with chest and abdominal CT's because those are the mets that she had at the time that she started the Clinical Trial last April. However, because of her past history of brain and spinal mets, Brittany also has a brain and spinal MRI done every three months in Seattle to ensure that any new mets in those areas are not missed.
I Hope that Paula is tolerating the Sutent well with minimal side effects. Has she experienced the loss of pigmentation to her hair turning it white as other patients being treated with Sutent have? If and when your time allows, it would be very helpful to those ASPS patients considering Sutent treatment if you could please post an entry in the Sutent topic on the Board with information about Paula's Sutent treatment experience, side effects, and results thus far.
I am so very grateful that Paula's disease is stable and that she is now feeling well enough to move forward with Living her Life. Please give Paula and yourself a special hug from me, and tell her that my continued special thoughts and healing wishes are with her. Take care dear Mania and keep in touch with the Board as you are able.
With special caring and continued Hope,
Bonni
Thank you for your thoughtful update with the very good and encouraging news about Paula's most recent scan results. 'F' said that "it's disappointing to hear about all the new ones", but if I read your entry correctly that "there are numerous scattered small pulmonary nodules measuring between 2 to 4 mm, majority of which demonstrate mild interval decrease in size.", it indicates to me that the nodules are not new but rather lung mets which were already seen on previous scans and have now slightly decreased in size. If my interpretation of your upated information is correct, it appears that there are no new lung nodules and that the Sutent thankfully seems to be preventing the growth of any new mets and causing the shrinkage of many of the existing ones. Were any scans done to determine the status of the area of Paula's hip tumor resection, and pelvic area radiation, and will she be having only chest CT scans in April and June, or will she also have abdominal/pelvic Ct's and a brain MRI to ensure that there are no new mets anywhere else in her body? In Brittany's situation, her Cediranib Clinical Trial in Edmonton is only following her lung, pancreatic, spleen, and duodenum mets with chest and abdominal CT's because those are the mets that she had at the time that she started the Clinical Trial last April. However, because of her past history of brain and spinal mets, Brittany also has a brain and spinal MRI done every three months in Seattle to ensure that any new mets in those areas are not missed.
I Hope that Paula is tolerating the Sutent well with minimal side effects. Has she experienced the loss of pigmentation to her hair turning it white as other patients being treated with Sutent have? If and when your time allows, it would be very helpful to those ASPS patients considering Sutent treatment if you could please post an entry in the Sutent topic on the Board with information about Paula's Sutent treatment experience, side effects, and results thus far.
I am so very grateful that Paula's disease is stable and that she is now feeling well enough to move forward with Living her Life. Please give Paula and yourself a special hug from me, and tell her that my continued special thoughts and healing wishes are with her. Take care dear Mania and keep in touch with the Board as you are able.
With special caring and continued Hope,
Bonni
Re: Paula
Hi!
Thank You for your kind words Bonnie and 'F'.
Paula tolerates Sutent very very well. She has lost pigmentation, eybrowes, and her hair grow white. Sometimes she gets discomfort from sockets (kind of like bubbles) on her feet, where there is usually the biggest pressure from body weight.
She gets a lot reflexotherapy sessions and she noticed that during breakes from reflexo side effects like footsockets and fatigue tend to be stronger.
Paula stays on a strict diet which was defined after having her blood viewed through a fibre optic microscope. This test provided us with information about what kind of food is good for Paula, and what is absolutely forbiden to eat.
Considering lung mets:
Bonnie You are right - there are no new nodules since the surgery and they slightly decreased in size.
Paula had scans of pelvic area as well and they show nothing suspicious.
Dr Butrynski from Dana Faber suggested she should not forget about brain scans once a year, and I think she will have those done in june.For now he recomended she stays on sutent, and goes on with her life.
He is really great doctor, and great guy. I'm so greatefull to be part of this forum, since we wouldn't have met him without You guys! He is our doctor nuber 1! Too bad we have to fly half the world to see him.
Healing hugs to all of You!
Thank You for your kind words Bonnie and 'F'.
Paula tolerates Sutent very very well. She has lost pigmentation, eybrowes, and her hair grow white. Sometimes she gets discomfort from sockets (kind of like bubbles) on her feet, where there is usually the biggest pressure from body weight.
She gets a lot reflexotherapy sessions and she noticed that during breakes from reflexo side effects like footsockets and fatigue tend to be stronger.
Paula stays on a strict diet which was defined after having her blood viewed through a fibre optic microscope. This test provided us with information about what kind of food is good for Paula, and what is absolutely forbiden to eat.
Considering lung mets:
Bonnie You are right - there are no new nodules since the surgery and they slightly decreased in size.
Paula had scans of pelvic area as well and they show nothing suspicious.
Dr Butrynski from Dana Faber suggested she should not forget about brain scans once a year, and I think she will have those done in june.For now he recomended she stays on sutent, and goes on with her life.
He is really great doctor, and great guy. I'm so greatefull to be part of this forum, since we wouldn't have met him without You guys! He is our doctor nuber 1! Too bad we have to fly half the world to see him.
Healing hugs to all of You!
-
Fictional
Re: Paula
Hooray! This is Wonderful news!
'K' still has the faintest highlights from her being on Sutent for about 6 months 2.5 years ago and she thinks it's pretty and doesn't want to have her hair trimmed. I dyed her hair with ammonia-free dyes, but her pigment came back pretty soon after stopping sutent. 'K' is half-Chinese and she did not want to be blond! Blessings, 'F'
'K' still has the faintest highlights from her being on Sutent for about 6 months 2.5 years ago and she thinks it's pretty and doesn't want to have her hair trimmed. I dyed her hair with ammonia-free dyes, but her pigment came back pretty soon after stopping sutent. 'K' is half-Chinese and she did not want to be blond! Blessings, 'F'
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
Thank you for the additional important shared information about Paula's Sutent side effects. I am so grateful that she is tolerating the medication very well thus far, and that she is able to receive relief from the hand/foot syndrome and fatigue through reflexotherapy. I am very grateful too that you are so happy with Dr. Butrynski and have found him to be as good of a doctor as we did when Brittany was fortunate enough to have been under his highly qualified, experienced, and compassionate care in Seattle. I am glad that he is recommending that Paula have a brain MRI once a year which is vitally important in monitoring this disease even if everything else appears to be stable. Please tell him "Hello" from The Hesses next time you see him. In the meantime, please take care dear Mania, know how deeply appreciated your faithful updates and shared information are, and know too that Paula and you are held very close in my heart and most caring thoughts.
With warm hugs, special caring, and continued Hope,
Bonni
Thank you for the additional important shared information about Paula's Sutent side effects. I am so grateful that she is tolerating the medication very well thus far, and that she is able to receive relief from the hand/foot syndrome and fatigue through reflexotherapy. I am very grateful too that you are so happy with Dr. Butrynski and have found him to be as good of a doctor as we did when Brittany was fortunate enough to have been under his highly qualified, experienced, and compassionate care in Seattle. I am glad that he is recommending that Paula have a brain MRI once a year which is vitally important in monitoring this disease even if everything else appears to be stable. Please tell him "Hello" from The Hesses next time you see him. In the meantime, please take care dear Mania, know how deeply appreciated your faithful updates and shared information are, and know too that Paula and you are held very close in my heart and most caring thoughts.
With warm hugs, special caring, and continued Hope,
Bonni
Re: Paula
Hello great people
On 16th of april 2010 Paula had her checkup and mets in lungs are the same in number but... the largest is 2mm. Hurrah! It means a little regression of a disease which made doctors to keep Paula on 37.5mg daily dose of Sutent with no breaks in between monthly cycles. Blood tests are done every 2 weeks.
SIde effects started to be stronger - diarreah made her life less comfortable but after taking Trilac (Lactobacillus acidophilus) things got much much better (unfortunately I have no idea what would be equivalent for trilac in english ( One has to usualy take it while antibiotic treatment so your digestive system is not harmed). I will put this info in Sutent chapter.
Paula goes through a lot emotional swings since her life keeps changing, out of so many friends there were usually around her, only few prooved to be real and stayed with Paula, others simply vanished. Her life is not what regular 25year old life looks like, there are so many things she decided not to do cause she believes not doing them would help her become healthy one day. It clutched my hurt when I read on her blog how she complains she can't eat sweets, or icecream, or go for long walks, or dance or stay up all night without worring how she'd feel the next day, , or drink wine, or stay all day at her studies without being exhausted. She is really brave, but it is so hard to thing she is too young for all of this. Right now she went for short holidays into the nature to get some distanse.
Spring hugs for You all.
On 16th of april 2010 Paula had her checkup and mets in lungs are the same in number but... the largest is 2mm. Hurrah! It means a little regression of a disease which made doctors to keep Paula on 37.5mg daily dose of Sutent with no breaks in between monthly cycles. Blood tests are done every 2 weeks.
SIde effects started to be stronger - diarreah made her life less comfortable but after taking Trilac (Lactobacillus acidophilus) things got much much better (unfortunately I have no idea what would be equivalent for trilac in english ( One has to usualy take it while antibiotic treatment so your digestive system is not harmed). I will put this info in Sutent chapter.
Paula goes through a lot emotional swings since her life keeps changing, out of so many friends there were usually around her, only few prooved to be real and stayed with Paula, others simply vanished. Her life is not what regular 25year old life looks like, there are so many things she decided not to do cause she believes not doing them would help her become healthy one day. It clutched my hurt when I read on her blog how she complains she can't eat sweets, or icecream, or go for long walks, or dance or stay up all night without worring how she'd feel the next day, , or drink wine, or stay all day at her studies without being exhausted. She is really brave, but it is so hard to thing she is too young for all of this. Right now she went for short holidays into the nature to get some distanse.
Spring hugs for You all.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
I'm sorry to be so slow in responding to your very thoughtful update on Paula, but I somehow missed your entry when you posted it.
I am so happy and grateful to hear that the Sutent has caused some shrinkage of Paula's mets and that there are no new ones, but I am sorry that she is experiencing increased side effects from the medication. This cruel disease and the treatments heartbreakingly take such a terrible toll on our loved ones precious young bodies and their Lives, and they have to pay such a high price and sacrifice so much just to have the chance to Live that too many others their age just take for granted. I hope that Paula is able to stay strong and positive despite all that she is going through emotionally and physically because I truly believe that there is a strong link between the mind and the body, and that having a positive attitude and positive energy helps to strengthen the immune system to better fight the disease. She is very fortunate to have your strengthening love and support which is so very important in helping her fight her battle. I am glad that she was able to take a short holiday and Hope that it was very therapeutic for her. Please take care dear Mania, give Paula and yourself special hugs from me, know that I am holding you both very close in my heart and thoughts, have a beautiful Springtime, and keep this Board updated as you are able.
Reaching out across the miles to share special caring thoughts, healing wishes for Paula, and continued Hope,
Bonni
I'm sorry to be so slow in responding to your very thoughtful update on Paula, but I somehow missed your entry when you posted it.
I am so happy and grateful to hear that the Sutent has caused some shrinkage of Paula's mets and that there are no new ones, but I am sorry that she is experiencing increased side effects from the medication. This cruel disease and the treatments heartbreakingly take such a terrible toll on our loved ones precious young bodies and their Lives, and they have to pay such a high price and sacrifice so much just to have the chance to Live that too many others their age just take for granted. I hope that Paula is able to stay strong and positive despite all that she is going through emotionally and physically because I truly believe that there is a strong link between the mind and the body, and that having a positive attitude and positive energy helps to strengthen the immune system to better fight the disease. She is very fortunate to have your strengthening love and support which is so very important in helping her fight her battle. I am glad that she was able to take a short holiday and Hope that it was very therapeutic for her. Please take care dear Mania, give Paula and yourself special hugs from me, know that I am holding you both very close in my heart and thoughts, have a beautiful Springtime, and keep this Board updated as you are able.
Reaching out across the miles to share special caring thoughts, healing wishes for Paula, and continued Hope,
Bonni
Re: Paula
Hey everyone!!!!
I'm writing with an update on Paula situation.
Paula is now one year status post resection of a primary and radiation for her ASPS of the right pelvis.
Here is the impression from the raport after MRI and CT she just did in Boston this month:
"Significantly increased right hilar lymph node and interval slight increase in the size of a left upper lobe pulmonary nodule, measuring 3mm, concerning for progression of metastatic disease. At the same time numerous bilateral pulmonary nodules, several have decreased in size."
As I read it I found it very serious, although it's only 3mm nodule that grew over the last 6months. I HATE the word progression.
Doctors talked with her as if the news from raport were nothing. They told her they would call her status stable. That the word progression is exadurated.
I wander why would they say that?
Before radiologist wrote his raport of lung CT, Paula appeared disease free to her surgeon. (that's really wonderful, but it was spoken too soon I guess Surgeon looks at CT on his computer, radiologist spends hours of looking at the huge monitor)
This is so frustrating. Disease free - what a dream!!!!
What a dissapointment when Paula read the word progression! WHen this horrible nodule grew other nodules decreased in size. How is it possible? Does it mean sutent stops working?
She is souposed to continue on sutent but lower the dosage due to side effects as diarrhea, foot discomfort and also maybe it would be better to stop taking it one day and just watch what happens. Easy to say. I don't know if she would want to be not treated at all.
Lung surgery is not a right way in Paulas' case according to our Boston doctor. Her lung nodules are too small for surgery.
So this is all at the moment from us. I feel very happy to be a part of this forum and whenever I have news I'm writing. I just wish I was writing with the better news. And I whish this to everyone here. I hope all of you stay brave in learning about ASPS and continue to get and give the support. Healing whishes for all
m
Love
I'm writing with an update on Paula situation.
Paula is now one year status post resection of a primary and radiation for her ASPS of the right pelvis.
Here is the impression from the raport after MRI and CT she just did in Boston this month:
"Significantly increased right hilar lymph node and interval slight increase in the size of a left upper lobe pulmonary nodule, measuring 3mm, concerning for progression of metastatic disease. At the same time numerous bilateral pulmonary nodules, several have decreased in size."
As I read it I found it very serious, although it's only 3mm nodule that grew over the last 6months. I HATE the word progression.
Doctors talked with her as if the news from raport were nothing. They told her they would call her status stable. That the word progression is exadurated.
I wander why would they say that?
Before radiologist wrote his raport of lung CT, Paula appeared disease free to her surgeon. (that's really wonderful, but it was spoken too soon I guess Surgeon looks at CT on his computer, radiologist spends hours of looking at the huge monitor)
This is so frustrating. Disease free - what a dream!!!!
What a dissapointment when Paula read the word progression! WHen this horrible nodule grew other nodules decreased in size. How is it possible? Does it mean sutent stops working?
She is souposed to continue on sutent but lower the dosage due to side effects as diarrhea, foot discomfort and also maybe it would be better to stop taking it one day and just watch what happens. Easy to say. I don't know if she would want to be not treated at all.
Lung surgery is not a right way in Paulas' case according to our Boston doctor. Her lung nodules are too small for surgery.
So this is all at the moment from us. I feel very happy to be a part of this forum and whenever I have news I'm writing. I just wish I was writing with the better news. And I whish this to everyone here. I hope all of you stay brave in learning about ASPS and continue to get and give the support. Healing whishes for all
m
Love
Re: Paula
Hi Mania, I am glad to hear that most of the lung nodules are either stable or decreased and only two are causing the concern to be potentially dangerous as they grow. We had the same situation with latest Ivan's CT scans and had one nodule that has started to grow rapidly. It is often not at a problem at all if the nodule is located in the spot accesible for the ablation - we traveled to see Dr.Littrup in Detroit and he cryo ablated this concerning nodule in a simple 2 hours procedure with almost no pain. We needed to pay for that and it was fairly expensive but we are very grateful for the option like that - to fix this one and have his life go on with no problems. There is an awesome ablation doctor in Frankfurt, Germany that does cryo and everything else (Dr.Vogl, he is the head of the interventional radiology at the Frankfurt university), it is easy to get a consultation from him if you sent him a CT scan on a CD, I am almost sure that it will be cheaper then in US. But 3 mm is way to small for any ablation (although it is a very good size for the surgery and I would start consulting Dr.Rolle already so he would say when it is the best time for the surgery). As for the advice from the Boston's doctors that the size is too small for the surgery, you have to ask for an advise like that from the person who does the surgery, laser assisted technique is the very rare sub specialty and even thoiracic surgeons who does not do it can not advise on it.
So it is up to you guys how to proceed, but really the result of this scan is not that bad at all.
Dr.Vogl e-mail is here: t.vogl@em.uni-frankfurt.de his English is perfect, much better then mine.
So it is up to you guys how to proceed, but really the result of this scan is not that bad at all.
Dr.Vogl e-mail is here: t.vogl@em.uni-frankfurt.de his English is perfect, much better then mine.
Olga
-
Fictional
Re: Paula
I agree with the others - looks as if things are going well.
It would not be soon to consult with Dr. Rolle. I would think they would have to be bigger for him to operate though. Also sometimes a met pops up and then stops growing too. Our daughter has some 3 mm ones that haven't grown in 2 years.
Keep an eye on the hilar lymph node though - sometimes if it clearly looks as if the cancer has spread to the lymph nodes, Rolle may not operate.
In order to have major surgery, you would have to be off Sutent 3-4 weeks before and 3-4 weeks after.
All-in-all sounds like great news on the scans!
Remember there are some members of the 10-15+ year ASPS club who have "dormant tumors everywhere". You do not have to get rid of all of them, but you have to get rid of rapidly growing ones that appear in dangerous areas.
It would not be soon to consult with Dr. Rolle. I would think they would have to be bigger for him to operate though. Also sometimes a met pops up and then stops growing too. Our daughter has some 3 mm ones that haven't grown in 2 years.
Keep an eye on the hilar lymph node though - sometimes if it clearly looks as if the cancer has spread to the lymph nodes, Rolle may not operate.
In order to have major surgery, you would have to be off Sutent 3-4 weeks before and 3-4 weeks after.
All-in-all sounds like great news on the scans!
Remember there are some members of the 10-15+ year ASPS club who have "dormant tumors everywhere". You do not have to get rid of all of them, but you have to get rid of rapidly growing ones that appear in dangerous areas.
Re: Paula
I just forgot to address the question if these lung mets are developing resistance to the sunitinib. My uneducated guess is that it does not look like the developing resistance, in that case the established mets that were stable before on this drug would start to grow. Since this is a new small met, there might be a few reasons. First, there is a significant heterogeneity between the mets - they are different and some might have no target for this drug so won't be affected by it so you will see that at the same time when the rest of the mets are stable, this one-two are growing. Second, they might change as they grow and the smaller ones might initially have less or no target for this drug and may start expressing it and be affected by this drug as they grow, so for example the met can grow from 0 to 3-4 mm and later stabilize on this drug, so you need to see how it goes.
Olga