Dear all Friends
I wanted to update and seek advice from you about Jawad's case. I had a discussion with Dr Rolle regarding removal of lung mets. He did not agree to remove them now as there are many tiny mets( around 100) in each lungs. He was of the opinion that jawad should first undergo systemic treatment. If his tiny lesions responded to treatment, then he'll review the case. After that i've approached Janelle at NCI for jawad's enrolment in Cediranib trial. He was kind enough to respond quickly. I've to send him the slides for pathologic conformation of the Dx and after that things ll move further. I had a discussion with the Surgeon regarding the removal of the primary in Rt Thigh. After going through all the scans, he said that it was resectable with out compromising any vital structure in the thigh. My friends,keeping in view your personal experiences,I need your valuable advice regarding the future plan.
With Best Wishes and Regards for all
Jawad from Pakistan - Dx 2010
Re: Jawad's Story
Find out whether removing the primary would affect Jawad's enrollment in the cediranib clinical trial. Does he have another tumor big enough to qualify? I think there is a minimum size requirement.
Also ask the surgeon if ANYTHING is to be gained if the primary shrunk by cediranib. Would the surgery be easier, have a better outcome, etc?
Keeping those things in mind, I would remove the primary while it's still completely resectable.
Also ask the surgeon if ANYTHING is to be gained if the primary shrunk by cediranib. Would the surgery be easier, have a better outcome, etc?
Keeping those things in mind, I would remove the primary while it's still completely resectable.
Re: Jawad's Story
Hello 
I agree with all of what Ivan has sugjested...
The main tumor needs to be removed as soon as possible in my opinion also.. But, make sure that the lung mets will be enough to get you in this trial..
I am so glad you found someone there that will remove the tumor!
I agree with all of what Ivan has sugjested...
The main tumor needs to be removed as soon as possible in my opinion also.. But, make sure that the lung mets will be enough to get you in this trial..
I am so glad you found someone there that will remove the tumor!
“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
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jawad's Story
Dear Fawad,
I am not a medical doctor, and my opinion/recommendation is only based on my extensive research and nine years of experience with ASPS, but I agree with both Ivan and Amanda's recommendations regarding the importance of resecting Jawad's large primary tumor prior to his beginning the Cediranib treatment if his remaining lung mets would still qualify him for enrollment in the NIH Cediranib Trial. In my opinion, Jawad's large 6 Cm. x 11 Cm. primary tumor adds a significant tumor burden to his body which could weaken his immune system making it more difficult for him to fight the disease, and also make it more difficult for the Cediranib to be as effective as it could be with less tumor burden. Some of the other ASPS Cediranib Trial patients with intact large primary tumors unfortunately seem to have had less successful responses to the treatment. If Fawad proceeds with starting the Cediranib treatment prior to resection of his primary and then the primary does not respond and show shrinkage or at least stabilization, if Fawad then decided to temporarily go off of the medication to have his primary resected, the amount of time required for the surgery and recovery may be longer than is allowed by the Cediranib Trial protocol and Fawad would be unable to resume Cediranib treatment once he had recovered from the surgery. In Brittany's situation, she was allowed to discontinue her Cediranib long enough to have a minor outpatient surgery to remove a superficial abdominal met that didn't appear to be responding to the Cediranib, but she was only off of the medication for less than two weeks which is much less time than would be required for Jawad due to the more major surgery and extended recovery which will be involved in resection of his large primary. These concerns are something which need to be discussed with Dr. Kumar and the NIH Clinical Trial staff as soon as possible so that the treatment plan that offers Jawad the best chance of a successful outcome to both his surgery and Cediranib treatment can be made. Take care Fawad, and please keep this Board updated as you are able.
With special caring thoughts, healing wishes for Jawad, and continued Hope,
Bonni
I am not a medical doctor, and my opinion/recommendation is only based on my extensive research and nine years of experience with ASPS, but I agree with both Ivan and Amanda's recommendations regarding the importance of resecting Jawad's large primary tumor prior to his beginning the Cediranib treatment if his remaining lung mets would still qualify him for enrollment in the NIH Cediranib Trial. In my opinion, Jawad's large 6 Cm. x 11 Cm. primary tumor adds a significant tumor burden to his body which could weaken his immune system making it more difficult for him to fight the disease, and also make it more difficult for the Cediranib to be as effective as it could be with less tumor burden. Some of the other ASPS Cediranib Trial patients with intact large primary tumors unfortunately seem to have had less successful responses to the treatment. If Fawad proceeds with starting the Cediranib treatment prior to resection of his primary and then the primary does not respond and show shrinkage or at least stabilization, if Fawad then decided to temporarily go off of the medication to have his primary resected, the amount of time required for the surgery and recovery may be longer than is allowed by the Cediranib Trial protocol and Fawad would be unable to resume Cediranib treatment once he had recovered from the surgery. In Brittany's situation, she was allowed to discontinue her Cediranib long enough to have a minor outpatient surgery to remove a superficial abdominal met that didn't appear to be responding to the Cediranib, but she was only off of the medication for less than two weeks which is much less time than would be required for Jawad due to the more major surgery and extended recovery which will be involved in resection of his large primary. These concerns are something which need to be discussed with Dr. Kumar and the NIH Clinical Trial staff as soon as possible so that the treatment plan that offers Jawad the best chance of a successful outcome to both his surgery and Cediranib treatment can be made. Take care Fawad, and please keep this Board updated as you are able.
With special caring thoughts, healing wishes for Jawad, and continued Hope,
Bonni
Re: Jawad's Story
Dear All ASPS Forum Friends,
Thanks for sharing your valuable input to help guide me regarding the treatment decision. After going through the inclusion criteria in cediranib trial, i think that 2-3 lung lesions qualify for the criteria. I'll also ask Dr Kummar regarding the removal of the primary tumor. Does she go in favor of primary removal or not? If she says that removing primary does not affect my inclusion in the trial then i'll under go surgery ASAP.
My prayers are with you all.
Olga, Amanda, Ivan and Bonni- you all guys are doing a great community service through this forum by guiding and advising the new comers. I am so very greatful to all of you. May God bless you all.
With Best Wishes and Regards for all.
Thanks for sharing your valuable input to help guide me regarding the treatment decision. After going through the inclusion criteria in cediranib trial, i think that 2-3 lung lesions qualify for the criteria. I'll also ask Dr Kummar regarding the removal of the primary tumor. Does she go in favor of primary removal or not? If she says that removing primary does not affect my inclusion in the trial then i'll under go surgery ASAP.
My prayers are with you all.
Olga, Amanda, Ivan and Bonni- you all guys are doing a great community service through this forum by guiding and advising the new comers. I am so very greatful to all of you. May God bless you all.
With Best Wishes and Regards for all.
Re: Jawad's Story
Hello Fawad
I am so glad to hear that you are going to look into removing this tumor and then start this trial.
I do not know the doctor but i cant see the doctor not wanting this removed first it is recomended by every Sarcoma Specialist i know unless the lungs are growing rapidly..
I wish you a speedy answer from this doctor so you can move forward in your treatments..
My prayers are with you and your family! May all above bless you!
I am so glad to hear that you are going to look into removing this tumor and then start this trial.
I do not know the doctor but i cant see the doctor not wanting this removed first it is recomended by every Sarcoma Specialist i know unless the lungs are growing rapidly..
I wish you a speedy answer from this doctor so you can move forward in your treatments..
My prayers are with you and your family! May all above bless you!
“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: Jawad's Story
Fawad,
I am sorry to hear that Dr.Rolle is unable to resect the lung mets at least now, but it was very important to evaluate this option before of proceeding with the other routes so you guys know where you stand. I am also interested to know about Dr Kummar answer regarding the removal of the primary tumor. As I understand from the other cases that she was supervising on the trial, she does not usually go in favor of the primary removal when there are multiple unresectable lung mets, but probably it is affected by a different point of view of the clinical trial investigator and the patient, she might be very much interested to know how cediranib affects bulky primary tumors, and we have very strong opinion here that these bulky primary tumors have to go ASAP, we had cases when people died from the unresected primary tumor progression and not their multiple lung metastases, these primary tumors cased them significant suffering and pain that could have been avoided, time gained and other option to deal with the lung mets explored - like in Alicia Perlette case, when the primary tumor cased the destruction and infiltration of the bone by the primary tumor.
I am sorry to hear that Dr.Rolle is unable to resect the lung mets at least now, but it was very important to evaluate this option before of proceeding with the other routes so you guys know where you stand. I am also interested to know about Dr Kummar answer regarding the removal of the primary tumor. As I understand from the other cases that she was supervising on the trial, she does not usually go in favor of the primary removal when there are multiple unresectable lung mets, but probably it is affected by a different point of view of the clinical trial investigator and the patient, she might be very much interested to know how cediranib affects bulky primary tumors, and we have very strong opinion here that these bulky primary tumors have to go ASAP, we had cases when people died from the unresected primary tumor progression and not their multiple lung metastases, these primary tumors cased them significant suffering and pain that could have been avoided, time gained and other option to deal with the lung mets explored - like in Alicia Perlette case, when the primary tumor cased the destruction and infiltration of the bone by the primary tumor.
Olga
Re: Jawad - Dx 2010
Dear Olga and Ivan thanks for encouraging me to post. Sorry for the long absence from the forum. In fact I was running here and there in my quest of the best possible treatment available. As you people know that I was fulfilling the criteria to be included in CEDIRANIB trial but unfortunately even to date I’ve not been issued with visa by US Embassy despite my repeated requests and provision of all documents. After being disappointed from US embassy, I consulted various oncologists in my own country (Pakistan) and all had different opinions but none of them was expert in dealing with ASPS because of much lesser incident of the tumor. All of them had consensus that I should start with chemotherapy despite of the knowledge that it is a chemo and radio resistant tumor. I suggested them about sutent and sorafenib (drugs available in my country) but they did not agree to start right away with these newer agents due to lack of definite proof of their role in ASPS. I was put on a chemo regimen (CYVADEC). Revaluation after 2 X weeks showed disease progression with increase in lung lesions size (max 2cm increase in the largest lesion) primary also increased in size to about 1 cm, also my symptoms got worse. I revisited my oncologist and discussed the case with him in detail and suggested him to put me on SUTENT rather than trying another chemo regimen. He agreed to my suggestion and I started with Sutent 50 mg daily. With the start of sutent my symptoms improved significantly in a week and repeat scanning after 28 days cycle of sutent revealed 1cm regression in the size of largest lesion but the size of primary remained unchanged. My routine lab investigations were normal and I tolerated sutent very well, All I had was sore tongue for few days and greying of perioral hair. I continued with the same 50 mg dose for next 2 x cycles nad repeat imaging this time revealed another 1cm reduction in size of the largest lesion. However primary did grow in size from 5 x 10 cm to 6 x 11 cm. Upon reviewing my reports my oncologist recommended me to have the primary excised ASAP. I have under gone primary resection 2 days ago and still admitted in hospital.
One more thing I saw something about the possible role of camel milk and urine in cancer and I started taking it as well along with sutent. There are multiple areas of calcification in my lung mets which I suppose are not due to the effects of sutent, might be due to camel milk and urine. Prof Fateen in Saudi Arabia is doing work on it and in the process of preparing a medicine from camel milk and urine. Currently she only advises ingestion of milk and urine in measured quantity. I ll post her web page link….might prove useful for others as well.
WITH BEST WISHES AND REGARDS TO ALL FELLOWS ON BOARD
Dr Jawad
One more thing I saw something about the possible role of camel milk and urine in cancer and I started taking it as well along with sutent. There are multiple areas of calcification in my lung mets which I suppose are not due to the effects of sutent, might be due to camel milk and urine. Prof Fateen in Saudi Arabia is doing work on it and in the process of preparing a medicine from camel milk and urine. Currently she only advises ingestion of milk and urine in measured quantity. I ll post her web page link….might prove useful for others as well.
WITH BEST WISHES AND REGARDS TO ALL FELLOWS ON BOARD
Dr Jawad
Re: Jawad from Pakistan - Dx 2010
Jawad, I am very happy sutent is working for you now, and you had a great response. However, as you probably know, the effect is usually not permanent. I suggest that you send your scans to Dr. Rolle again to be re-evaluated, now that your primary has been removed, and the lung mets have shrunk up to 1 cm. That's a very good response, so see what he says.
Did I understand correctly that you saw a measurable increase in lung nodules in just TWO WEEKS? It's very unusual for ASPS to grow that quickly.
Meanwhile I also think it's a good idea to keep trying to get the US visa for cediranib, since it would be a good option of sutent stops working.
As far as camel urine, I think there is only one published article on very early research - http://www.ncbi.nlm.nih.gov/pubmed/20883769 - so it's kind of like shooting in the dark.
Did I understand correctly that you saw a measurable increase in lung nodules in just TWO WEEKS? It's very unusual for ASPS to grow that quickly.
Meanwhile I also think it's a good idea to keep trying to get the US visa for cediranib, since it would be a good option of sutent stops working.
As far as camel urine, I think there is only one published article on very early research - http://www.ncbi.nlm.nih.gov/pubmed/20883769 - so it's kind of like shooting in the dark.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jawad from Pakistan - Dx 2010
Dear Jawad,
Thank you for somehow finding the strength and energy to write to update from the hospital in the midst of your recovery from the resection of your primary tumor in your thigh. I Hope that your recovery is going well and that your post-op pain is being well controlled. I am so grateful that you were able to have your primary successfully surgically removed, and am very Hopeful that with the primary now removed and your body's tumor burden reduced, it will strengthen your immune system and enable the Sutent to be even more effective in shrinking your lung mets and maintaining the stability of your disease. I am grateful too that your lung mets are having such a successful response to the Sutent and that you have been tolerating it well thus far. You said that you are on a 50 mg. daily dose of Sutent which is higher than most of the other previous and current patients on this Board who were on Sutent and who I think were/are on a 37.5 dosage. Hopefully you will be able to continue to tolerate the higher dosage well and it will provide an even greater and more sustained response than the lower dosage did for the other patients who unfortunately had a fairly short term response. I am sorry that you have encountered so many problems with the delay of the approval of your American visa so that you can participate in the NIH Cediranib Clinical Trial, but Hopefully it will be approved soon so you will have that treatment option available to you if you do eventually develop resistance to Sutent. I am not personally aware about anything regarding taking camel milk and camel urine as a supplement for fighting cancer, but it will certainly be interesting to follow the research and your personal experience with this approach. We have always tried to remain open minded about any new treatment ideas, but it is important to thoroughly research the available data and information, to confer with your doctor, and to make sure that there are no risks or contraindications to whatever you decide to take. Since you are now on Sutent, Olga may want to move your updates to the Sutent topic on this Board so that everyone can follow your treatment experience and results there. In the meantime, please know that my most caring thoughts and very best wishes are with you for a speedy recovery from your surgery, and a continued successful response to the Sutent with additional and continuing shrinkage of your lung mets and stabilization of your disease. Take care Jawad and keep in touch with the Board as you are able.
With gentle healing hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Thank you for somehow finding the strength and energy to write to update from the hospital in the midst of your recovery from the resection of your primary tumor in your thigh. I Hope that your recovery is going well and that your post-op pain is being well controlled. I am so grateful that you were able to have your primary successfully surgically removed, and am very Hopeful that with the primary now removed and your body's tumor burden reduced, it will strengthen your immune system and enable the Sutent to be even more effective in shrinking your lung mets and maintaining the stability of your disease. I am grateful too that your lung mets are having such a successful response to the Sutent and that you have been tolerating it well thus far. You said that you are on a 50 mg. daily dose of Sutent which is higher than most of the other previous and current patients on this Board who were on Sutent and who I think were/are on a 37.5 dosage. Hopefully you will be able to continue to tolerate the higher dosage well and it will provide an even greater and more sustained response than the lower dosage did for the other patients who unfortunately had a fairly short term response. I am sorry that you have encountered so many problems with the delay of the approval of your American visa so that you can participate in the NIH Cediranib Clinical Trial, but Hopefully it will be approved soon so you will have that treatment option available to you if you do eventually develop resistance to Sutent. I am not personally aware about anything regarding taking camel milk and camel urine as a supplement for fighting cancer, but it will certainly be interesting to follow the research and your personal experience with this approach. We have always tried to remain open minded about any new treatment ideas, but it is important to thoroughly research the available data and information, to confer with your doctor, and to make sure that there are no risks or contraindications to whatever you decide to take. Since you are now on Sutent, Olga may want to move your updates to the Sutent topic on this Board so that everyone can follow your treatment experience and results there. In the meantime, please know that my most caring thoughts and very best wishes are with you for a speedy recovery from your surgery, and a continued successful response to the Sutent with additional and continuing shrinkage of your lung mets and stabilization of your disease. Take care Jawad and keep in touch with the Board as you are able.
With gentle healing hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Jawad from Pakistan - Dx 2010
Jawad - I am glad that you find some additional treatment that you feel may help you but I have to tell you that we in general do not support any treatments with no officially proven benefit (we need studies and articles in official medical literature) - we should not assume that any natural treatment is beneficial as it can in fact be harmful - we just do not know. There are many reasons for the people "fell sick with huge abdomens" and it might not be sarcoma. I would not use any milk as a treatment for the cancer/sarcoma diagnosis as many of them are hormone sensitive and milk is naturally high in hormones. Even different sarcomas can have different sensitivity to diff. hormones/compounds.
Urine-therapy is a long time discussed treatment by many alternative medicine docs - western and eastern alike - but once again, we have no information about its expected benefits in ASPS.
We have a separate thread for the unofficial treatments in the "Diet and lifestyle" and I move your post with the method to that area here:
http://www.cureasps.org/forum/viewtopic.php?f=53&t=626
so people can read it and use if they are interested, they can contact you trough the board's messenger. I hope that you understand my reason - we have people from all over the world with different beliefs but we have to keep this board neutral and search for the facts rather then for the expectations.
Speedy recovery from your surgery!
Urine-therapy is a long time discussed treatment by many alternative medicine docs - western and eastern alike - but once again, we have no information about its expected benefits in ASPS.
We have a separate thread for the unofficial treatments in the "Diet and lifestyle" and I move your post with the method to that area here:
http://www.cureasps.org/forum/viewtopic.php?f=53&t=626
so people can read it and use if they are interested, they can contact you trough the board's messenger. I hope that you understand my reason - we have people from all over the world with different beliefs but we have to keep this board neutral and search for the facts rather then for the expectations.
Speedy recovery from your surgery!
Olga
Re: Jawad from Pakistan - Dx 2010
Hi.Im from Pakistan too.And I just got diagnosed with asps too.Can you tell me about your treatment?