Ivan,
Prof.Rolle did mention about you a couple of times, he thinks you are doing well probably because you also stay very active. What kind of exercises did you do after you returned from the surgery? I guess we need to also be a little careful for 1-2 months post surgery. We have got the spiro ball, so Sree would be doing that, then maybe some walking, stretching. What else?
Sree from India (now USA) - Dx 2008 - RIP 03/05/2012
Re: Sree's recent diagnosis
Arch, we are glad to hear that everything went as well as it could be and that you liked the hospital, even though we have a really good health care system in Canada it lacks the quality that only specialized thoracic hospital can provide. I want to comment on "no necrosis in the nodules versus primary" issues. There is often a spontaneous necrosis in the bigger ASPS tumors, not treatment induced so probably this was the case in the primary. What about any signs of necrosis in the smaller mets, does the report mention something about 3-4 mm? Re.recovery - I am sure that Ivan will comment later on on the training specifics but we agreed that the bicycle is a good type of the after surgery training.
Olga
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Fictional
Re: Sree's recent diagnosis
Wonderful news, Arch and Sree! Amazing to see all gone on chest CT!
: )
: )
Re: Sree's recent diagnosis
Hi Olga,
Sree's largest lung met was 14mm and the rest were all smaller than 5 mm, some of the resected ones were 3-4mm and Prof.Rolle told us that they did not see necrosis in any of the mets. All the resected nodules were viable ASPS.
Another point that I would like to mention is that Sree's mets don't seem to have grown in the last 5 months. The size of the largest met was 14mm in the very first scan taken in Dec08. So could that be the reason why the AIM did not work ?
Maybe they were dormant, not dividing and for the chemo to work, they should be dividing..
The AIM chemo was the worst part of his treatment so far and unfortunately it doesn't seem to have done any good.
Sree's largest lung met was 14mm and the rest were all smaller than 5 mm, some of the resected ones were 3-4mm and Prof.Rolle told us that they did not see necrosis in any of the mets. All the resected nodules were viable ASPS.
Another point that I would like to mention is that Sree's mets don't seem to have grown in the last 5 months. The size of the largest met was 14mm in the very first scan taken in Dec08. So could that be the reason why the AIM did not work ?
Maybe they were dormant, not dividing and for the chemo to work, they should be dividing..
The AIM chemo was the worst part of his treatment so far and unfortunately it doesn't seem to have done any good.
Re: Sree's recent diagnosis
Hi All,
We are going to Dr.Rolle for Sree's second laser assisted thoractomy on July 12th. The position of the bigger mets on Sree's left lung seems to be a concern and so we are not wasting any time. Again, this will only be a tumor reduction procedure not a complete resection. Our hope is that Dr.Rolle will be able to get all the big ones out. Sree is otherwise quite fine, he seems to have recovered well from the previous surgery. Since his last surgery in Coswig, he has had some irritation in his throat, he often feels the need to clear his throat. We have pointed it out to his doctors and they are not too worried about that, they said it could be from the anesthesia tube.
I have been reading everybody's updates on the board, prayers and best wishes to everyone. I will keep all of you updated about how things go for us.
Take care.
Arch
We are going to Dr.Rolle for Sree's second laser assisted thoractomy on July 12th. The position of the bigger mets on Sree's left lung seems to be a concern and so we are not wasting any time. Again, this will only be a tumor reduction procedure not a complete resection. Our hope is that Dr.Rolle will be able to get all the big ones out. Sree is otherwise quite fine, he seems to have recovered well from the previous surgery. Since his last surgery in Coswig, he has had some irritation in his throat, he often feels the need to clear his throat. We have pointed it out to his doctors and they are not too worried about that, they said it could be from the anesthesia tube.
I have been reading everybody's updates on the board, prayers and best wishes to everyone. I will keep all of you updated about how things go for us.
Take care.
Arch
Re: Sree's recent diagnosis
Hi All,
We are back after Sree's second thoroctomy. Dr.Rolle resected 90 mets, all of them were ASPS. Sree was recovering quite well initially but on 8th day postop he had a pneumothorax and a chest tube had to be inserted back(his chest tubes were actually out by then). Anyway, he has recovered and is feeling quite fine.
Dr.Rolle has advised us not to start any systemic treatment now, he has asked us to do a CT scan in 3 months and take a call after that.
Arch
We are back after Sree's second thoroctomy. Dr.Rolle resected 90 mets, all of them were ASPS. Sree was recovering quite well initially but on 8th day postop he had a pneumothorax and a chest tube had to be inserted back(his chest tubes were actually out by then). Anyway, he has recovered and is feeling quite fine.
Dr.Rolle has advised us not to start any systemic treatment now, he has asked us to do a CT scan in 3 months and take a call after that.
Arch
Re: Sree's recent diagnosis
Dear Arch,
It has been a few weeks and i am wondering how you are both doing?
I hope well! I am doing well and at work and though my leg keeps swelling up the freedom in working is a blessing to me right now.
I hope with all my heart that he is doing well and please post soon you have both been on my mind a lot!
In healing hopes
AmandaR
It has been a few weeks and i am wondering how you are both doing?
I hope well! I am doing well and at work and though my leg keeps swelling up the freedom in working is a blessing to me right now.
I hope with all my heart that he is doing well and please post soon you have both been on my mind a lot!
In healing hopes
AmandaR
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Sree's recent diagnosis
Dear Amanda,
Glad to know that you are feeling fine and are back at work. We have nothing much to update, my husband is feeling better,
he's also back at work and we are trying to spend as much time as possible with our little daughter. Our plan is to do a CT scan in end of Oct and see how his lungs are. If we see stable disease(hoping and praying for that..), we probably will not do anything and just carry on till the next scan. If there are any bigger mets missed during the thoractomy or if there is progression, we will think of a systemic treatment, maybe an anti angiogenic drug like Sutent or Cediranib.
We did call and enquire about the cediranib trial at Maryland, its open to anyone who meets their eligibility criteria, but since they see patients every two weeks during the trial, it will be more difficult for us since we live in India. I really can't think of how we could manage all that. Sutent is something that our doctor here will be able to prescribe.
I follow everyone's story here on this forum, I can relate to everything you write and I often think about each one of you.
Take care and all the best.
Arch
Glad to know that you are feeling fine and are back at work. We have nothing much to update, my husband is feeling better,
he's also back at work and we are trying to spend as much time as possible with our little daughter. Our plan is to do a CT scan in end of Oct and see how his lungs are. If we see stable disease(hoping and praying for that..), we probably will not do anything and just carry on till the next scan. If there are any bigger mets missed during the thoractomy or if there is progression, we will think of a systemic treatment, maybe an anti angiogenic drug like Sutent or Cediranib.
We did call and enquire about the cediranib trial at Maryland, its open to anyone who meets their eligibility criteria, but since they see patients every two weeks during the trial, it will be more difficult for us since we live in India. I really can't think of how we could manage all that. Sutent is something that our doctor here will be able to prescribe.
I follow everyone's story here on this forum, I can relate to everything you write and I often think about each one of you.
Take care and all the best.
Arch
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Fictional
Re: Sree's recent diagnosis
Arch - You may know all this, but would add this given your last post...
There is a chance that Cediranib will be approved in the upcoming year by the FDA - probably for glioblastoma or maybe colon cancer - don't know what that means for India - but may mean it may be available there. Also when we asked about Cediranib, the doctor told us that the NCI would pay for our flights out from Washington state as well as allow us to stay at the Childrens Inn. I don't know if that would be different for an international family, but worth asking...after all, ASPS is a rare cancer, and they want to fill their study. For our study it would be 7-10 days at the beginning (all outpatient- but longer perhaps for our study because involves pharmacokinetics in kids) then monthly, the possibly every 2 months.
We are thinking of not doing it if we can wait, just because of the side effects.
Great to hear Sree is doing so well. : )
There is a chance that Cediranib will be approved in the upcoming year by the FDA - probably for glioblastoma or maybe colon cancer - don't know what that means for India - but may mean it may be available there. Also when we asked about Cediranib, the doctor told us that the NCI would pay for our flights out from Washington state as well as allow us to stay at the Childrens Inn. I don't know if that would be different for an international family, but worth asking...after all, ASPS is a rare cancer, and they want to fill their study. For our study it would be 7-10 days at the beginning (all outpatient- but longer perhaps for our study because involves pharmacokinetics in kids) then monthly, the possibly every 2 months.
We are thinking of not doing it if we can wait, just because of the side effects.
Great to hear Sree is doing so well. : )
Re: Sree's recent diagnosis
Dear 'F',
Thanks for sharing this information, I do remember your earlier update on this forum about the possibility of cediranib getting FDA approval. Your posts are always so informative and has been a big help for us in this battle.
I'm just hoping that cediranib will be effective for ASPS and more trials will be open, and we too could get access to it.At NCI, they do not allow long distance enrollment, I was just checking if we could make less frequent visits, seeing them every 2 weeks would require us to stay in the US for the entire duration of the trial. I did not check if they would pay for the flight,stay etc, I never thought that they would do that, now that you mention, I'll ask them, it could make things easier for us. Unfortunately looking at the side effects of the drug and our own logistics issues, we also want to wait and try something else if possible.
We had a email communication with Dr.Margaret Mehren, Director Sarcoma Oncology at Fox Chase Cancer Center, the doctor recommended not doing anything if there is stable disease and Sutent if disease progression occurs. When my husband was dx in Dec 2008, we had contacted Dr.Patel at MD Anderson and he too had suggested Sutent or any available anti-angiogenic drug. So maybe if something is required immediately, it could be sutent. I will also be eagerly awaiting your updates on R1507.
Best wishes and warm regards
Arch
Thanks for sharing this information, I do remember your earlier update on this forum about the possibility of cediranib getting FDA approval. Your posts are always so informative and has been a big help for us in this battle.
I'm just hoping that cediranib will be effective for ASPS and more trials will be open, and we too could get access to it.At NCI, they do not allow long distance enrollment, I was just checking if we could make less frequent visits, seeing them every 2 weeks would require us to stay in the US for the entire duration of the trial. I did not check if they would pay for the flight,stay etc, I never thought that they would do that, now that you mention, I'll ask them, it could make things easier for us. Unfortunately looking at the side effects of the drug and our own logistics issues, we also want to wait and try something else if possible.
We had a email communication with Dr.Margaret Mehren, Director Sarcoma Oncology at Fox Chase Cancer Center, the doctor recommended not doing anything if there is stable disease and Sutent if disease progression occurs. When my husband was dx in Dec 2008, we had contacted Dr.Patel at MD Anderson and he too had suggested Sutent or any available anti-angiogenic drug. So maybe if something is required immediately, it could be sutent. I will also be eagerly awaiting your updates on R1507.
Best wishes and warm regards
Arch
Re: Sree's recent diagnosis
I remember asking NCI in regards of the different study if they would pay for our flights out from Canada, but they would only pay from any US state. But I think that every two weeks visits are only needed in the beginning of the study?
Also some comment re. follow up scan after laser-assisted surgery - first scan is usually getting "progressive disease" description when there are new dots from the ablation of the nodules that were not seen on the pre-op scan and other nodules may seem bigger being in reality nodular shaped scars after the surgery using laser, we always have this situation on the first after surgery scan reading. Some bigger nodules that were found on the after-surgery scan stayed undissolved scars for as along as 3 years and only on the redo surgery were removed and found fibrotic/scar tissue so stability of the bigger nodules might be the sign of them being scars even if they are round shaped. Only growth on the non-first-after-surgery scan might be reliable sign of the nodule remained after the surgery (missed due to edema of the lung parenchima on the long surgery when the lung tissue gets stiff after being open to the air more then 2-3 hours).
Also some comment re. follow up scan after laser-assisted surgery - first scan is usually getting "progressive disease" description when there are new dots from the ablation of the nodules that were not seen on the pre-op scan and other nodules may seem bigger being in reality nodular shaped scars after the surgery using laser, we always have this situation on the first after surgery scan reading. Some bigger nodules that were found on the after-surgery scan stayed undissolved scars for as along as 3 years and only on the redo surgery were removed and found fibrotic/scar tissue so stability of the bigger nodules might be the sign of them being scars even if they are round shaped. Only growth on the non-first-after-surgery scan might be reliable sign of the nodule remained after the surgery (missed due to edema of the lung parenchima on the long surgery when the lung tissue gets stiff after being open to the air more then 2-3 hours).
Olga
Re: Sree's recent diagnosis
Hello 
I also agree with Olga that it is only the first time that they request two weeks after the treatment starts that they would like to have the paitent return. This would be of course also if he has no signifacant reactions to the medication and from what i remember i was told that my local Onc would be monitoring the reactions and in contact with the study. Then they would make the decision if i would need to return. Also this medication is *corect me if i am wrong please* at 30 mg and not the 45mg that many did have problems with. Though i am aware that the distance is a very long trip for you both i realy feel in my heart that this drug maybe amasing with ASPS and I hope that if his situation does becomes one that needs medications like this * I pray not* that he and myself and everyone else will be able to be lucky enough to go on this medication.
In healing hopes for all!
AmandaR
I also agree with Olga that it is only the first time that they request two weeks after the treatment starts that they would like to have the paitent return. This would be of course also if he has no signifacant reactions to the medication and from what i remember i was told that my local Onc would be monitoring the reactions and in contact with the study. Then they would make the decision if i would need to return. Also this medication is *corect me if i am wrong please* at 30 mg and not the 45mg that many did have problems with. Though i am aware that the distance is a very long trip for you both i realy feel in my heart that this drug maybe amasing with ASPS and I hope that if his situation does becomes one that needs medications like this * I pray not* that he and myself and everyone else will be able to be lucky enough to go on this medication.
In healing hopes for all!
AmandaR
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Sree's recent diagnosis
Hi Amanda,
Yes, on this trial you get 30mg and not 45mg of cediranib, I think 30mg is better tolerated. I was told that the enrollment has just started, hopefully it will not fill up very soon and we will have time to enquire everything about the trial and then take a decision. I also see one new post by Brian whose wife is on the cediranib trial. Hope we hear encouraging news from him and all others who are already on it.
Olga, I understand there is going to be some difficulty in interpreting the CT scan after the laser surgery. We have one CT scan taken after the 1st thoractomy(right side) and so when we take another scan in Oct end we might be able to compare atleast the right side.
Yes, on this trial you get 30mg and not 45mg of cediranib, I think 30mg is better tolerated. I was told that the enrollment has just started, hopefully it will not fill up very soon and we will have time to enquire everything about the trial and then take a decision. I also see one new post by Brian whose wife is on the cediranib trial. Hope we hear encouraging news from him and all others who are already on it.
Olga, I understand there is going to be some difficulty in interpreting the CT scan after the laser surgery. We have one CT scan taken after the 1st thoractomy(right side) and so when we take another scan in Oct end we might be able to compare atleast the right side.
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Fictional
Re: Sree's recent diagnosis
Usually you can tell the difference - although it can be a shock looking at the first postop scan - it is amazing to see how much of the post-surgical change goes away with time. Usually there is a path you can see from the surface of the lung where Rolle tunneled in with the laser. The mets are more like balloons - smooth, although little ones are hard to tell from blood vessels until they enlarge.
Re: Sree's recent diagnosis
Here are our updates -
Unfortunately, Sree's CT scan doesn't look good. There seem to be new mets visible on both lungs and we could compare atleast the right lung as this is the second scan since the thoractomy on the right side. I can see atleast one nodule which has grown from 6 mm to about 1 cm(in about 5 months). I'm not too sure about the left lung as this is the first scan after the surgery on the left lung. So we want to start a systemic treatment ASAP. Please give us your valuable inputs.
Unfortunately, Sree's CT scan doesn't look good. There seem to be new mets visible on both lungs and we could compare atleast the right lung as this is the second scan since the thoractomy on the right side. I can see atleast one nodule which has grown from 6 mm to about 1 cm(in about 5 months). I'm not too sure about the left lung as this is the first scan after the surgery on the left lung. So we want to start a systemic treatment ASAP. Please give us your valuable inputs.