Having some first hand experience with Dr Rolle and his awsome surgery, id say that 3mm is perfect, but im not sure if only 1 met is enough reason to go in. But then again, scans can only pick up nodules the sice of 2mm plus. In my case i had 20 on CT in one lung and 30 in the other... atleast something like that... In each case, 3 more where found, that where just too small for CT scans. Rolle can "feel" nodules down to about 1mm in size. Its a hard type of tissue while lung tissue is very soft. Like a grain of sand.
id consult Rolle AND The other doctor in franfurt... These eople know what they are doing.
I understand why this desease haves doctors guessing at best. What i dont undertsand is, why doctors dont consult those with knowledge.
Paula from Poland - Dx 2009 - RIP 31/08/2011
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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,
It was so very good to hear from you again. Thank you for the thoughtful update about Paula's recent CT and MRI scans. I am sorry that the CT shows that there is a possible slight increase in the size of one of her lung mets, but it is very good and encouraging news that she has no new tumors since her last scans six months ago, and that several of the lung mets have decreased in size. 3 mm. is a very small amount of increase in a six month period, but I know that you don't want to see any increase. Olga has provided some very good input and information regarding your concern about the 3 mm. increase in the lung met, and it certainly could be that the Sutent is continuing to work on the majority of the mets, but that the one that appears to have slightly grown is resistant to the Sutent for some reason. We had a similar experience with Brittany on her Cediranib treatment where all of her other mets shrank or were no longer visible, but her small superficial abdominal tumor continued to grow, so Dr. Sawyer, her very knowledgeable clinical trial oncologist, wisely recommended that Brittany have it resected to eliminate the additional tumor burden, which she did. Also, if you follow ASPS patient LCMA's blog (http://LCMA.blogspot.com/) regarding her Sutent treatment experience and results, her most recent scans showed stable disease where her April scans had shown possible 1mm. growth in two of her lung mets.
Scans may not always accurately reflect increase or decrease in the size of tumors because the measurement of the tumor depends on where the CT scan slices the tumor. All that we can do is remain vigilant in looking at and reviewing the scans with the doctor, closely read the radilogist report, and discuss any concerns with the doctor that may have been raised by the report. Did the doctors address the issue of the "significantly increased right hilar lymph node" that was noted in the radiologist report, and if so, what was their opinion regarding this issue? I Hope that your concerns will be negated by future scans, and that Paula will continue to have a successful response to the Sutent with no new tumors, no increased tumor growth, and stable disease. In the meantime, please give Paula my best wishes, give my hugs to both of you, take care, and keep the Baord updated as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
It was so very good to hear from you again. Thank you for the thoughtful update about Paula's recent CT and MRI scans. I am sorry that the CT shows that there is a possible slight increase in the size of one of her lung mets, but it is very good and encouraging news that she has no new tumors since her last scans six months ago, and that several of the lung mets have decreased in size. 3 mm. is a very small amount of increase in a six month period, but I know that you don't want to see any increase. Olga has provided some very good input and information regarding your concern about the 3 mm. increase in the lung met, and it certainly could be that the Sutent is continuing to work on the majority of the mets, but that the one that appears to have slightly grown is resistant to the Sutent for some reason. We had a similar experience with Brittany on her Cediranib treatment where all of her other mets shrank or were no longer visible, but her small superficial abdominal tumor continued to grow, so Dr. Sawyer, her very knowledgeable clinical trial oncologist, wisely recommended that Brittany have it resected to eliminate the additional tumor burden, which she did. Also, if you follow ASPS patient LCMA's blog (http://LCMA.blogspot.com/) regarding her Sutent treatment experience and results, her most recent scans showed stable disease where her April scans had shown possible 1mm. growth in two of her lung mets.
Scans may not always accurately reflect increase or decrease in the size of tumors because the measurement of the tumor depends on where the CT scan slices the tumor. All that we can do is remain vigilant in looking at and reviewing the scans with the doctor, closely read the radilogist report, and discuss any concerns with the doctor that may have been raised by the report. Did the doctors address the issue of the "significantly increased right hilar lymph node" that was noted in the radiologist report, and if so, what was their opinion regarding this issue? I Hope that your concerns will be negated by future scans, and that Paula will continue to have a successful response to the Sutent with no new tumors, no increased tumor growth, and stable disease. In the meantime, please give Paula my best wishes, give my hugs to both of you, take care, and keep the Baord updated as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Paula
Hi,
new update. This time from polish ct, which was done 1 week ago. Doesn't look too great. Paula is freaking out.
SHe is very nervous
as she will be talking with polish oncologist tomorrow. You know, he is very poor in communicating any news, so having him preparing to tell not such great news could be very very hard.
I'm copying our report below, If I'm reading it right, lymphnodes that were discussed here already by some of us, prooved to be bad sings.
But could lymphnodes be like that becaouse of something else???
Maybe it doesn't have to necesserly show progression of disease?
Maybe we are fooling ourselves, but we are trying to hang in there.
I'm kind of living through the days with my eyes and ears shut and not trying to get into this report before we get oncologist opinions. I can imagine how Paula feels.
I'm puting this report anyway so it is here. Take a look at it.
From the report below, could anyone here suggest what do sings of disintegration mean?
Does this report look poor to You?
It is so comforting having possibility to write this here, and knowing it will be red. Thank You so much.
I will keep updating how things proceed next days/weeks.First she has polish oncologist opinion, second - tc cd's are already flying to boston with fedecs to dr Butrynski.
Hugs Hugs and love
m
Chest CT scan, pelvic CT scan with IV contrast
„Compared to the previous scan (performed in Poland on 16 April) nodular lesions in the mediastinum and in the hilum – unhomogeneous, most of them showing signs of disintegration:
− upper paratracheal 7 mm
− of the aortic-pulmonic window up to 7mm
− lower paratracheal – at the bifurcation level 15 x 14 mm
− subcarinal lymph nodes 26 x 16 mm
− under the left primary bronchus up to 11mm
− in the right hilum 31 x 29 mm
− in the left hilum 20 x17 mm
Bilateral progression (?) of lung tumours, some nodules are larger than previously, new ones have appeared, a 16 x 8 mm density in the right upper lobe, apart from that, nodules of up to 4 mm bilaterally.
Fragments of abdominal cavity organs visible, partially within the scope of the examination, with no focal lesions. The pelvic organs as in the previous examination of 16 April 2010.
The liquid area has become slightly larger in the area operated on subcutaneously 20 x 10 mm and below at the level of the acetabulum 18 x 7 mm. A massive periosteal reaction and soft tissue calcifications in the area within the scope of the examination by the greater trochanter of the right femur – further diagnostics in necessary (the lesions are not fully within the scope of the examination).”
new update. This time from polish ct, which was done 1 week ago. Doesn't look too great. Paula is freaking out.
SHe is very nervous as she will be talking with polish oncologist tomorrow. You know, he is very poor in communicating any news, so having him preparing to tell not such great news could be very very hard.
I'm copying our report below, If I'm reading it right, lymphnodes that were discussed here already by some of us, prooved to be bad sings.
But could lymphnodes be like that becaouse of something else???
Maybe it doesn't have to necesserly show progression of disease?
Maybe we are fooling ourselves, but we are trying to hang in there.
I'm kind of living through the days with my eyes and ears shut and not trying to get into this report before we get oncologist opinions. I can imagine how Paula feels.
I'm puting this report anyway so it is here. Take a look at it.
From the report below, could anyone here suggest what do sings of disintegration mean?
Does this report look poor to You?
It is so comforting having possibility to write this here, and knowing it will be red. Thank You so much.
I will keep updating how things proceed next days/weeks.First she has polish oncologist opinion, second - tc cd's are already flying to boston with fedecs to dr Butrynski.
Hugs Hugs and love
m
Chest CT scan, pelvic CT scan with IV contrast
„Compared to the previous scan (performed in Poland on 16 April) nodular lesions in the mediastinum and in the hilum – unhomogeneous, most of them showing signs of disintegration:
− upper paratracheal 7 mm
− of the aortic-pulmonic window up to 7mm
− lower paratracheal – at the bifurcation level 15 x 14 mm
− subcarinal lymph nodes 26 x 16 mm
− under the left primary bronchus up to 11mm
− in the right hilum 31 x 29 mm
− in the left hilum 20 x17 mm
Bilateral progression (?) of lung tumours, some nodules are larger than previously, new ones have appeared, a 16 x 8 mm density in the right upper lobe, apart from that, nodules of up to 4 mm bilaterally.
Fragments of abdominal cavity organs visible, partially within the scope of the examination, with no focal lesions. The pelvic organs as in the previous examination of 16 April 2010.
The liquid area has become slightly larger in the area operated on subcutaneously 20 x 10 mm and below at the level of the acetabulum 18 x 7 mm. A massive periosteal reaction and soft tissue calcifications in the area within the scope of the examination by the greater trochanter of the right femur – further diagnostics in necessary (the lesions are not fully within the scope of the examination).”
Re: Paula
Mania, hi, from the report it looks like Paula developed resistance to Sutent and her lung mets progressed. "signs of disintegration" means some of these nodules are partially necrotic either from Sutent or spontaneously (it often happens as ASPS tumors/mets outgrow their blood supply). The other thing they say in the report is some changes in the right femur and additional scanning is recommended to see what is it, she probably will be sent to have MRI. It looks like the primary site is OK though.
Olga
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
I am so very sorry about the concerns raised by Paula's recent CT scans radiologist report which I concur with Olga heartbreakingly seems to indicate disease progression in the lungs of both the size and number of mets. Hopefully you will have a better clarification of the situation following the meeting with the oncologist tomorrow in addition to Dr. Butrynski's review of the scans, and then you can move forward in planning for a new treatment to re-stabilize the disease. Since Paula had a positive response to Sutent, it might be worth considering Cediranib as the next treatment option since studies have shown that switching to a different anti-angiogenic tyrosine kinase inhibitor (TKI) can re-establish the effectiveness of the previous TKI. In addition to Sutent and Cediranib, there are other promising new TKI's including Pazaponib, Sorefanib (Nexavar), and Dasatonib which could be considered, but to my knowledge, Cediranib has shown the greatest success for ASPS patients thus far. My heart breaks for all of the worry and anguish that you and Paula are going through right now, but I am so grateful that you have each other to provide strengthening love and support to one another. Know that I am here to try to help in any way that I can with shared information, and know that I will be holding both of you and your family very close in my heart and special thoughts. Take care dear Mania and please keep the Board updated as you are able.
Reaching out across the miles to embrace you and Paula with warm hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
I am so very sorry about the concerns raised by Paula's recent CT scans radiologist report which I concur with Olga heartbreakingly seems to indicate disease progression in the lungs of both the size and number of mets. Hopefully you will have a better clarification of the situation following the meeting with the oncologist tomorrow in addition to Dr. Butrynski's review of the scans, and then you can move forward in planning for a new treatment to re-stabilize the disease. Since Paula had a positive response to Sutent, it might be worth considering Cediranib as the next treatment option since studies have shown that switching to a different anti-angiogenic tyrosine kinase inhibitor (TKI) can re-establish the effectiveness of the previous TKI. In addition to Sutent and Cediranib, there are other promising new TKI's including Pazaponib, Sorefanib (Nexavar), and Dasatonib which could be considered, but to my knowledge, Cediranib has shown the greatest success for ASPS patients thus far. My heart breaks for all of the worry and anguish that you and Paula are going through right now, but I am so grateful that you have each other to provide strengthening love and support to one another. Know that I am here to try to help in any way that I can with shared information, and know that I will be holding both of you and your family very close in my heart and special thoughts. Take care dear Mania and please keep the Board updated as you are able.
Reaching out across the miles to embrace you and Paula with warm hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
Re: Paula
Thahnk You Olga and Bonnie for such a quick reply and support.
I forgot to mention that we menaged to sent scans from august to dr Rolle and talked with him as he received them (it all took about 3 weeks).
He looked at the scans, not very sofisticatedly (these are his own words) for about 10 minutes and talked with Paula after (I was right there by the phone) He said to watch the dynamics of the disease, and at the moment it was not right to go into surgery according to him (and according to our main oncologist). Maybe we should have asked for better evaluation, I don't know. It was just like a favour he did for us.
As for 'signs of desintegration' that comforted me, thank You Olga for your opinion.
Well, have a wonderfull day, and keep your fingers crossed !
I forgot to mention that we menaged to sent scans from august to dr Rolle and talked with him as he received them (it all took about 3 weeks).
He looked at the scans, not very sofisticatedly (these are his own words) for about 10 minutes and talked with Paula after (I was right there by the phone) He said to watch the dynamics of the disease, and at the moment it was not right to go into surgery according to him (and according to our main oncologist). Maybe we should have asked for better evaluation, I don't know. It was just like a favour he did for us.
As for 'signs of desintegration' that comforted me, thank You Olga for your opinion.
Well, have a wonderfull day, and keep your fingers crossed !
-
skyflower
- New Member
- Posts: 26
- Joined: Wed Sep 03, 2008 9:25 pm
- Location: Seattle, WA (previously Orange County, CA)
Re: Paula
Hi Mania! I hope Paula's meeting with oncologist goes well tomorrow.
Here's a neat picture that shows what is going on with the lungs:
http://lelaneemeollamokowich.wordpress. ... mph-nodes/
maybe doctors can resect subcarinal lymph nodes and other mets that are not directly on the lungs. The mets that are not directly on the lungs (like the subcarina) dr. rolle might not be able to use his laser on and might prefer they are removed before he is able to work. in case, it's good to get opinions on what the local surgeons can and can not do. i can only compare this to lucio (husband), he had a subcarinal lymph node resected last year. dr. rolle said that after that mass removed, he can do surgery on lungs. lucio's subcarinal lymph node was size of chicken egg when it was removed, so paula's node is still small
my fingers are crossed for paula!
-lokelani
Here's a neat picture that shows what is going on with the lungs:
http://lelaneemeollamokowich.wordpress. ... mph-nodes/
maybe doctors can resect subcarinal lymph nodes and other mets that are not directly on the lungs. The mets that are not directly on the lungs (like the subcarina) dr. rolle might not be able to use his laser on and might prefer they are removed before he is able to work. in case, it's good to get opinions on what the local surgeons can and can not do. i can only compare this to lucio (husband), he had a subcarinal lymph node resected last year. dr. rolle said that after that mass removed, he can do surgery on lungs. lucio's subcarinal lymph node was size of chicken egg when it was removed, so paula's node is still small
my fingers are crossed for paula!
-lokelani
Re: Paula
So my wonderfull friends
Our polish medical team stated that disease is in progress and decided to stop sutent now and suggested to go to CHEMO
They think of 2 kinds o chemo:
- fosfamid followed by dox+ dtic.
Afterwards they would put Paula on chest radiation.
We don't like their idea at all.
Dr Butrynsky is in contact with us and he suggests that Cediranib is the next step. We believe that as well. We will have logistic issues to overcome since this drug is not registered in Poland, and there are no clinical trials for it here. But I'm sure we will menage. I think London would be the place to find clinical trial at. It's just 2-3 hours flight. We just need to organise ourselves and see how to do this.
First, though, we are waiting till CT cds get to dr Butrynskis' office in Boston, and then we would hear his opinion based on analisys of latest scans compared to previous ones,and his opinion is most important to us.
Some of You may wander why we choose the doctor who is so far away from the place we live. Well, no one in Poland has such expirience with patiens with ASPS as he does. He gives Paula so much comfort, and the way he can speak is so great.
I wish polish medical team would want to talk with him as well and cooperate and it would be so much easier. But for some reason they do not want to....can You imagine?
ANyway I'm not going to complain for our national medical system here, cause it will not fix it. I'm happy we have our doctor in Boston, and to have You here at this forum. Paula is taking it all brave, trying not to give up. She is a bit lonely and feels she would want to have a support of beloved one (since unfortunately her relationship didn't survive), but she menages to be a great warrior anyway. Sends You all lots of good spirit
Lokelani (I love your name:) thank You for helpfull picture
hugs to all of You
Our polish medical team stated that disease is in progress and decided to stop sutent now and suggested to go to CHEMO
They think of 2 kinds o chemo:
- fosfamid followed by dox+ dtic.
Afterwards they would put Paula on chest radiation.
We don't like their idea at all.
Dr Butrynsky is in contact with us and he suggests that Cediranib is the next step. We believe that as well. We will have logistic issues to overcome since this drug is not registered in Poland, and there are no clinical trials for it here. But I'm sure we will menage. I think London would be the place to find clinical trial at. It's just 2-3 hours flight. We just need to organise ourselves and see how to do this.
First, though, we are waiting till CT cds get to dr Butrynskis' office in Boston, and then we would hear his opinion based on analisys of latest scans compared to previous ones,and his opinion is most important to us.
Some of You may wander why we choose the doctor who is so far away from the place we live. Well, no one in Poland has such expirience with patiens with ASPS as he does. He gives Paula so much comfort, and the way he can speak is so great.
I wish polish medical team would want to talk with him as well and cooperate and it would be so much easier. But for some reason they do not want to....can You imagine?
ANyway I'm not going to complain for our national medical system here, cause it will not fix it. I'm happy we have our doctor in Boston, and to have You here at this forum. Paula is taking it all brave, trying not to give up. She is a bit lonely and feels she would want to have a support of beloved one (since unfortunately her relationship didn't survive), but she menages to be a great warrior anyway. Sends You all lots of good spirit
Lokelani (I love your name:) thank You for helpfull picture
hugs to all of You
Re: Paula
As far as I know there is no clinical trial for the cediranib in London, we have a member who traveled from London to US every month to participate in the trial for ASPS that is still open the link is here:
they accept international patients and you should discuss this trial with Paula oncologist in Poland so they might pay for the flights if they agree that this is the good option and the only ASPS specific phase 2 trial that is open, the participation in a trial is free for the patient at the NCI in US and I think they help with the accommodation there.
http://clinicaltrials.gov/ct2/show/NCT0 ... ib&rank=24
I would ask Pf.Judson from UK Royal Marsden Hospital what his opinion is as how to proceed, he was kind enough to members of the ASPS community to answer to e-mials or alternatively you might want to go there and see him. He has the most experience with ASPS in Europe and is one of the leaders of the EORTC Soft Tissue and Bone Sarcoma Group and Paula's oncologist might know him/about him (and Poland probably participate in that group) so his second opinion would be very much appropriate to request and to use in the further communication with the local doctors. I expect that Pf.Judson would support going to US for a cediranib or he might have some other new trial open or he might have an info when cediranib will be approved for ASPS in Europe (Astra Zeneca works with him very closely). And what is his opinion about this drug overall after he used it on his ASPS patients for a few years already, longer then anyone in the world.
they accept international patients and you should discuss this trial with Paula oncologist in Poland so they might pay for the flights if they agree that this is the good option and the only ASPS specific phase 2 trial that is open, the participation in a trial is free for the patient at the NCI in US and I think they help with the accommodation there.
http://clinicaltrials.gov/ct2/show/NCT0 ... ib&rank=24
I would ask Pf.Judson from UK Royal Marsden Hospital what his opinion is as how to proceed, he was kind enough to members of the ASPS community to answer to e-mials or alternatively you might want to go there and see him. He has the most experience with ASPS in Europe and is one of the leaders of the EORTC Soft Tissue and Bone Sarcoma Group and Paula's oncologist might know him/about him (and Poland probably participate in that group) so his second opinion would be very much appropriate to request and to use in the further communication with the local doctors. I expect that Pf.Judson would support going to US for a cediranib or he might have some other new trial open or he might have an info when cediranib will be approved for ASPS in Europe (Astra Zeneca works with him very closely). And what is his opinion about this drug overall after he used it on his ASPS patients for a few years already, longer then anyone in the world.
Olga
Re: Paula
I developed a resistance to Sutent also, after 2 years. I just started Nexavar, but I would also consider Cederanib if things don't go well with my new drug. I hope you can get in on the trial. This is strictly my personal opinion, but I would not do the chest radiation...as my doctor has always stressed to me it is important to not damage the healthy lung tissue. This is just my experience, but like you said you didn't like their opinion anyway. I am wishing you the best, and if you ever want to talk with me, my personal email is linds11zee@gmail.com
Re: Paula
Olga thank You for Your suggestion. You are really well informed about asps things in the world, I admire that.
Lindsey, I wrote you twice during last and a half year I know about. It's good that you are here.
So!
After getting an opinion from Boston Paula decides to apply for Cediranib in Bethesda.
It means that we will no longer listen to polish doctors . It's maybe better, cause they didn't get Paula's heart at all, but having no doctor in homecountry kind of sucks anyway
Our Bostonian oncologist dr Butrynski didn't need radiologist report to see that nodules in the lungs seem the same, and the lymphnodes are sligtly bigger.
It seems like Paula is developing resitanse to Sutent, and the next step for her is Cediranib. There is no trialas in Europe for Cediranib (that's right Olga), so Paula will apply for Bethesda.
We were hoping so much that maybe lymphnodes are bigger because something else... But because of excellent Paula's overall condition it is a sign of growing ASPS unfortunately
S000, there is dr Kummar who is in charge of Cediranib trial in Bethesda and she pointed a coordinator who would help us.
Anyone is familiar with dr Kummar?
Butrynski sugested that Sutent is still working but not so well anymore, and Paula is taking it till the end of Nov.
SO....we will see how it goes.
Paula is thinking she'd have to move to Bethesda. She is warried about leaving all her life, her friends, home, her animals. But till it's decided she doesn't want to think nor talk about it. Do you thnik is possible to live in Europe and be on this trial? It could be difficult and exhausting really.
Olga, who was this patient who flew from Europe?
Money is another issue, but it's something that we can raise, or earn or organise, this is the task that we have at least little knowledge how to overcome.
I whish there was more knowledge in how to win with ASPS....
Do you thnik it's possible to live in Europe and be on this trial? It could be difficult really.
I'm staying tuned to this forum and will post soon. In the meanwhile I'm trying to read everybody's elses stories with cediranib.
Have a wonderfull day.
m
Lindsey, I wrote you twice during last and a half year I know about. It's good that you are here.
So!
After getting an opinion from Boston Paula decides to apply for Cediranib in Bethesda.
It means that we will no longer listen to polish doctors . It's maybe better, cause they didn't get Paula's heart at all, but having no doctor in homecountry kind of sucks anyway
Our Bostonian oncologist dr Butrynski didn't need radiologist report to see that nodules in the lungs seem the same, and the lymphnodes are sligtly bigger.
It seems like Paula is developing resitanse to Sutent, and the next step for her is Cediranib. There is no trialas in Europe for Cediranib (that's right Olga), so Paula will apply for Bethesda.
We were hoping so much that maybe lymphnodes are bigger because something else... But because of excellent Paula's overall condition it is a sign of growing ASPS unfortunately
S000, there is dr Kummar who is in charge of Cediranib trial in Bethesda and she pointed a coordinator who would help us.
Anyone is familiar with dr Kummar?
Butrynski sugested that Sutent is still working but not so well anymore, and Paula is taking it till the end of Nov.
SO....we will see how it goes.
Paula is thinking she'd have to move to Bethesda. She is warried about leaving all her life, her friends, home, her animals. But till it's decided she doesn't want to think nor talk about it. Do you thnik is possible to live in Europe and be on this trial? It could be difficult and exhausting really.
Olga, who was this patient who flew from Europe?
Money is another issue, but it's something that we can raise, or earn or organise, this is the task that we have at least little knowledge how to overcome.
I whish there was more knowledge in how to win with ASPS....
Do you thnik it's possible to live in Europe and be on this trial? It could be difficult really.
I'm staying tuned to this forum and will post soon. In the meanwhile I'm trying to read everybody's elses stories with cediranib.
Have a wonderfull day.
m
Re: Paula
Hi Mania,
I'll share what I know about the cediranib trial at Bethesda, hope its of some use to you or any other person reading this post.
We first contacted the NCI referral nurse(contact information is available on the clinicaltrial.gov website) and soon were introduced to Agnes, she's the research nurse for this trial. Her contact details are -
Agnes Strassberger, RN
Medical Oncology Branch, NCI, NIH
9000 Rockville Pike
Building 10, Rm 13N 214
Bethesda MD 20892
(301) 435- 5664 (Phone)
(301) 480 7281 (Fax)
agnes.strassberger@nih.gov
You will have to send all medical records to her, they also asked us for the slides to reconfirm the dx. Agnes will then arrange for your initial screening which will include blood work, CT scans, PET scan,ECHO and then finally an appointment with Dr.Kummar. If eligible, you will be asked to pick up a 28 days supply of cediranib from the pharmacy at NCI. We finished all this in one day, some people like to spread it out into 2 days, that way you are not running from one apt to the other from 6:30 am to 5:00pm.
Initially they will ask you to return every 2 weeks for a checkup at NCI, after the 3rd cycle(each cycle is 28 days), you will need to go to NCI only once a month. For patients in the US, they pay for the flight to Bethesda(only for the patient, not for anyone accompanying). But I don't think they provide any such assistance for international patients. Sandeep Bhandari from UK, used to travel to Bethesda for this trial, as per his latest communication, he is not on this trial anymore. He did manage the travel from UK to Bethesda for the 5-6 months that he was on the trial.
There are plenty of hotels around the NIH campus and you have shuttles that will take you to the hospital, so that is not a big problem. There are shuttles from the airport to NIH also. NCI will reimburse $50 per night for hotel stay, the rest is the patient's responsibility.
Apart from all this, you will need to get blood work done every week at your home location and have that faxed to Agnes. So its quite a bit of monitoring that they do. Restaging scans are done every 2 months, at all the other visits, they do blood work and physical. You will meet Dr.Kummar at the end of every visit, she'll answer any questions that you may have. Side effects of cediranib are not trivial, patients may need medications to control high blood pressure, for diarrhea or for hypothyroidism.
Having said all that, cediranib also doesn't work indefintely, many patients have had to leave the trial because their tumors develop resistance to the drug or even because of side effects. So also explore any surgical options that you may have.
Take care and convey our best wishes to Paula.
Arch
I'll share what I know about the cediranib trial at Bethesda, hope its of some use to you or any other person reading this post.
We first contacted the NCI referral nurse(contact information is available on the clinicaltrial.gov website) and soon were introduced to Agnes, she's the research nurse for this trial. Her contact details are -
Agnes Strassberger, RN
Medical Oncology Branch, NCI, NIH
9000 Rockville Pike
Building 10, Rm 13N 214
Bethesda MD 20892
(301) 435- 5664 (Phone)
(301) 480 7281 (Fax)
agnes.strassberger@nih.gov
You will have to send all medical records to her, they also asked us for the slides to reconfirm the dx. Agnes will then arrange for your initial screening which will include blood work, CT scans, PET scan,ECHO and then finally an appointment with Dr.Kummar. If eligible, you will be asked to pick up a 28 days supply of cediranib from the pharmacy at NCI. We finished all this in one day, some people like to spread it out into 2 days, that way you are not running from one apt to the other from 6:30 am to 5:00pm.
Initially they will ask you to return every 2 weeks for a checkup at NCI, after the 3rd cycle(each cycle is 28 days), you will need to go to NCI only once a month. For patients in the US, they pay for the flight to Bethesda(only for the patient, not for anyone accompanying). But I don't think they provide any such assistance for international patients. Sandeep Bhandari from UK, used to travel to Bethesda for this trial, as per his latest communication, he is not on this trial anymore. He did manage the travel from UK to Bethesda for the 5-6 months that he was on the trial.
There are plenty of hotels around the NIH campus and you have shuttles that will take you to the hospital, so that is not a big problem. There are shuttles from the airport to NIH also. NCI will reimburse $50 per night for hotel stay, the rest is the patient's responsibility.
Apart from all this, you will need to get blood work done every week at your home location and have that faxed to Agnes. So its quite a bit of monitoring that they do. Restaging scans are done every 2 months, at all the other visits, they do blood work and physical. You will meet Dr.Kummar at the end of every visit, she'll answer any questions that you may have. Side effects of cediranib are not trivial, patients may need medications to control high blood pressure, for diarrhea or for hypothyroidism.
Having said all that, cediranib also doesn't work indefintely, many patients have had to leave the trial because their tumors develop resistance to the drug or even because of side effects. So also explore any surgical options that you may have.
Take care and convey our best wishes to Paula.
Arch
Re: Paula
Hi Mania, I strongly suggest not to break the ties with the local Polish oncologist but instead show to her/him the communications with the trials people and explain to her that this is the only Phase 2 trial for ASPS specifically that is open so she might reconsider her position and make an official referral for Paula to participate in that trail, you can ask Pf.Judson to give you guys a letter for the oncologist that this trial is a right option for the ASPS patients, may be it will convince her. That way they will work in cooperation and the monitoring of the side effects will be done properly. I know it is hard to go against the opinion of the local oncologist and stay her patient and be friendly, but you have to explain your decision. It is unlikely you won't need their help in the future, and they also under the obligation to consider the opinion of the experts. When Ivan was heading to Germany for his first lung surgery, his local doctors were mostly against it but I have collected few expert opinions that in ASPS surgery is the best way to manage metastatic disease providing it all seems resectable on the planning stage, Pf.Judson was very gracious and supportive with his thoracic surgeon backing our plan up across the oversea based on the scans he saw and overall excellent condition of the patient. And I have few other expert opinions from the US. Now they have got used to our position to seek the best care available regardless of the country, and really - they too glad to see the good results.
I also agree with Arch that probably some of the fast growing mets should be ablated - you probably have no option for the surgery now since Dr.Rolle did not offer to take Paula for the surgery now.
If Paula gets enrolled into this trial, may be there are some special medical airfares for the patient flying there when there are no options where he lives, find this out.
I also agree with Arch that probably some of the fast growing mets should be ablated - you probably have no option for the surgery now since Dr.Rolle did not offer to take Paula for the surgery now.
If Paula gets enrolled into this trial, may be there are some special medical airfares for the patient flying there when there are no options where he lives, find this out.
Olga
Re: Paula
Olga thanks for Your suggestion, Paula doesn't want to break the ties. I think I misunderstood her and wrote her my impression. But I will keep in mind to fight our decision and make polish doctors support us. I think it matters big time for other polish people who will be in our situation in the feature. We'll work on that.
Things are getting set up.
Paula is very active in arranging her medical issues with dr Butrynski and NCI. It's unlike comparing to the situation with primary tumor in 2009 where she was kind of out of it. I'm very proud of her.
Dr Butrynski is so much help, he and his crew are in touch with NCI people.
Archi thank You for the information. We appreaciate your great effort. Fortunately Paula doesn't really need to go into all the logistic things. Slides and medical records are taken care of! they are on their way.
Paula is thinking to go to Bethesda before Christmass. oh boy...here we go again. It just looked like things got settled for her.
We trust our Dana Farber oncologist. But there are questions floating in my head: maybe we should search more for other options? I just read Karinas' update and found out about Crizotinib. I'm starting to getting to know that with ASPS one has to be pushing for knowledge, researching. I think we are not perfect in doing this, we are good in hoping things are going to be fine.... It's bit naive maybe, but I'm sure You understand.
Anyway I will keep posting when I know more details.
Love and healing whishes to all of You wonderful people
Things are getting set up.
Paula is very active in arranging her medical issues with dr Butrynski and NCI. It's unlike comparing to the situation with primary tumor in 2009 where she was kind of out of it. I'm very proud of her.
Dr Butrynski is so much help, he and his crew are in touch with NCI people.
Archi thank You for the information. We appreaciate your great effort. Fortunately Paula doesn't really need to go into all the logistic things. Slides and medical records are taken care of! they are on their way.
Paula is thinking to go to Bethesda before Christmass. oh boy...here we go again. It just looked like things got settled for her.
We trust our Dana Farber oncologist. But there are questions floating in my head: maybe we should search more for other options? I just read Karinas' update and found out about Crizotinib. I'm starting to getting to know that with ASPS one has to be pushing for knowledge, researching. I think we are not perfect in doing this, we are good in hoping things are going to be fine.... It's bit naive maybe, but I'm sure You understand.
Anyway I will keep posting when I know more details.
Love and healing whishes to all of You wonderful people
Re: Paula
I think it's fairly obvious that Cediranib is the best known option right now for someone seeking immediate relief. There is plenty of evidence, which shows its effectiveness in ASPS. There is, of course, no such evidence for Crizotinib.MANIA wrote:Olga thanks for Your suggestion, Paula doesn't want to brake the ties. I think I misunderstood her and wrote her my impression. But I will keep in mind to fight our decision and make polish doctors support us. I think it matters big time for other polish people who will be in our situation in the feature. We'll work on that.
Things are getting set up.
Paula is very active in arranging her medical issues with dr Butrynski and NCI. It's unlike comparing to the situation with primary tumor in 2009 where she was kind of out of it. I'm very proud of her.
Dr Butrynski is so much help, he and his crew are in touch with NCI people.
Archi thank You for the information. We appreaciate your great effort. Fortunately Paula doesn't really need to go into all the logistic things. Slides and medical records are taken care of! they are on their way.
Paula is thinking to go to Bethesda before Christmass. oh boy...here we go again. It just looked like things got settled for her.
We trust our Dana Farber oncologist. But there are questions floating in my head: maybe we should search more for other options? I just read Karinas' update and found out about Crizotinib. I'm starting to getting to know that with ASPS one has to be pushing for knowledge, researching. I think we are not perfect in doing this, we are good in hoping things are going to be fine.... It's bit naive maybe, but I'm sure You understand.
Anyway I will keep posting when I know more details.
Love and healing whishes to all of You wonderful people