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It's back ........what do you try after Votrient?


#1

Votrient worked for 21 months. Can anyone suggest a clinical trial in the Chicago area? Or any t-Cell research? I need a couple more years to get my kids through collage.

Jim


#2

Hi Jim - sorry to hear the Votrient has stopped working. You got a lot of months out of it. My daughter only got 4 months. The next drug the doctors are leaning on having her take is Trabectedin. We will know more on Wednesday. Have you discussed this drug with your doctor? Also, I recently saw folks discussing this doctor, Dr. Chawla. I might reach out to him in email first. Just a thought for you...http://sarcomaoncology.com/s_cv_Chawla.html.

All the best. Trish


#3

Sorry to hear the bad news. Somebody mentioned a good response to TH-302. The trial is available in Chicago if you haven't reached the maximum limit for doxorubicin:

http://clinicaltrials.gov/ct2/show/study/NCT01440088

Northwestern University Recruiting
Chicago, Illinois, United States, 60611
Contact: Catherine Collins 312-■■■■■■■■ ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Principal Investigator: Mark Agulnik, MD

#4

Thanks - I see my oncologist on Wednesday and will bring this study up. I was doing some research and found this.

http://www.adaptimmune.com/wp-content/uploads/2011/07/Sarcoma-Trial-opening-July-2011.pdf

Do you know anything of this type of treatment?

Jim

Elodie Espesset said:

Sorry to hear the bad news. Somebody mentioned a good response to TH-302. The trial is available in Chicago if you haven't reached the maximum limit for doxorubicin:

http://clinicaltrials.gov/ct2/show/study/NCT01440088

Northwestern University Recruiting
Chicago, Illinois, United States, 60611
Contact: Catherine Collins 312-■■■■■■■■ ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Principal Investigator: Mark Agulnik, MD

#5

It looks like we will both know more on Wednesday. That is when I see my oncologist as well. I got the results via email yesterday evening and the wait is nerve racking. So sorry to hear and hear about your daughter. I hope the treatment works. My prayers are with your family.

Jim

Trish said:

Hi Jim - sorry to hear the Votrient has stopped working. You got a lot of months out of it. My daughter only got 4 months. The next drug the doctors are leaning on having her take is Trabectedin. We will know more on Wednesday. Have you discussed this drug with your doctor? Also, I recently saw folks discussing this doctor, Dr. Chawla. I might reach out to him in email first. Just a thought for you...http://sarcomaoncology.com/s_cv_Chawla.html.

All the best. Trish


#6

Here is the adaptimmune trial:

http://clinicaltrials.gov/ct2/show/NCT01343043

It's an interesting trial but restricted to patients who are HLA-A2 positive. Most people get rejected because they are not HLA-A2 positive :-( It's worth to check if you are...

jimK said:

Thanks - I see my oncologist on Wednesday and will bring this study up. I was doing some research and found this.

http://www.adaptimmune.com/wp-content/uploads/2011/07/Sarcoma-Trial...

Do you know anything of this type of treatment?

Jim

Elodie Espesset said:

Sorry to hear the bad news. Somebody mentioned a good response to TH-302. The trial is available in Chicago if you haven't reached the maximum limit for doxorubicin:

http://clinicaltrials.gov/ct2/show/study/NCT01440088

Northwestern University Recruiting
Chicago, Illinois, United States, 60611
Contact: Catherine Collins 312-■■■■■■■■ ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Principal Investigator: Mark Agulnik, MD

#7

Jim, I talked to Dr. Chawla today about my daughter. He stated the following options:

1st High-dose ifosfamide

2nd Aldoxorubicin with or without DTIC which I think is Dacarbazine, I can not find this trial on the clinical trials site?

3rd Yondelis (Trabectedin)

Dr. Chawla was very easy to talk to and seems to have an extensive amount of experience. I will be discussing these items with my daughter's doctor. Thank you to others who mentioned him.

It might be helpful to give him your history and see what he suggests. All the best. Trish


jimK said:

It looks like we will both know more on Wednesday. That is when I see my oncologist as well. I got the results via email yesterday evening and the wait is nerve racking. So sorry to hear and hear about your daughter. I hope the treatment works. My prayers are with your family.

Jim

Trish said:

Hi Jim - sorry to hear the Votrient has stopped working. You got a lot of months out of it. My daughter only got 4 months. The next drug the doctors are leaning on having her take is Trabectedin. We will know more on Wednesday. Have you discussed this drug with your doctor? Also, I recently saw folks discussing this doctor, Dr. Chawla. I might reach out to him in email first. Just a thought for you...http://sarcomaoncology.com/s_cv_Chawla.html.

All the best. Trish


#8

Jim, you may also want to check the following trial which is also in Chicago:

http://clinicaltrials.gov/ct2/show/NCT01405391

The results of the phase 1 trial for this drug just came out. 2 patients with synovial sarcoma participated in it and they both responded. According to the study report, they "had prolonged disease stabilizations with some radiological evidence of tumor shrinkage". The phase 1 trial was done in Chicago and Spain. The investigator in Chicago was Mark Ratain, MD:

http://www.uchospitals.edu/physicians/mark-ratain.html


#9

Definitely talk to Dr. Chawla's team. They're incredible.. I have never had such a good feeling about a doctor. They TRULY care.. you're not just another patient.


#10

Hi,

You have mentioned possible option for you. My mother tried all of them. The best tolerance and response was from Yondelis.

All the best


Trish said:

Jim, I talked to Dr. Chawla today about my daughter. He stated the following options:

1st High-dose ifosfamide

2nd Aldoxorubicin with or without DTIC which I think is Dacarbazine, I can not find this trial on the clinical trials site?

3rd Yondelis (Trabectedin)

Dr. Chawla was very easy to talk to and seems to have an extensive amount of experience. I will be discussing these items with my daughter's doctor. Thank you to others who mentioned him.

It might be helpful to give him your history and see what he suggests. All the best. Trish


jimK said:

It looks like we will both know more on Wednesday. That is when I see my oncologist as well. I got the results via email yesterday evening and the wait is nerve racking. So sorry to hear and hear about your daughter. I hope the treatment works. My prayers are with your family.

Jim

Trish said:

Hi Jim - sorry to hear the Votrient has stopped working. You got a lot of months out of it. My daughter only got 4 months. The next drug the doctors are leaning on having her take is Trabectedin. We will know more on Wednesday. Have you discussed this drug with your doctor? Also, I recently saw folks discussing this doctor, Dr. Chawla. I might reach out to him in email first. Just a thought for you...http://sarcomaoncology.com/s_cv_Chawla.html.

All the best. Trish


#11

I'm think about looking at the genetic modified t-cell trial. I go for blood tests on Monday to see if I'm HLA-A2 Positive. Does anyone know what my odds are of being HLA-A2 Positive? I can't find it on line anywhere.


#12

My one doctor suggested that as an option for me as well. It's really quite amazing what they do for your t-cells and engineer them to fight. But, he said it was a 50/50 chance and that being Caucasian gives an even bigger advantage. I don't know how entirely true that is but that's just what he told me.


#13

Are you moving forward with the treatment? If so, where? It sounds like my best option. I had radiation in the area of the tumor over two years ago and my surgeon is willing to remove the spot on my lung and lymph nodes but it seems like this treatment is just a game of cutting and removing. I already had 3 surgeries and I'm running out of lungs. Thanks for the answer and never give up!

Siimplycandace said:

My one doctor suggested that as an option for me as well. It's really quite amazing what they do for your t-cells and engineer them to fight. But, he said it was a 50/50 chance and that being Caucasian gives an even bigger advantage. I don't know how entirely true that is but that's just what he told me.


#14

Yeah I completely understand where you're coming from. I have tumors in both lungs.. they're thinking roughly around maybe 9 or 10 of them. And enlarged lymph nodes dead center in my chest which are really painful unfortunately. I'm seeing Dr. Chalwa and his team of doctors in Santa Monica, CA. I have an appointment on Tuesday so hopefully they've come up with a treatment plan by then. I've changed everything from my diet being organic now to using those crazy oils people keep talking about. I get my port put in soon. They kept putting in PICC lines in my arms because they didn't think it would spread as quickly as it did. SO we'll see! I have yet to have any surgery.. they said its not an option. Exactly NEVER give up and do everything to stay alive! Keep me updated with everything please!


#15

Jim, good luck with the blood test! Simplycandace, good luck with your appointment on Tuesday!


#16

I went for my blood test this morning and I'll keep you updated. My surgeon has not willing to operate on me two years ago, after I had radiation treatments. I also have an appointment with him coming up. The last lung and lymph node surgery was with a scope and was less invasive. He is willing to remove the largest lymph node that will cause the first real noticeable symptoms, as it will restrict my airway as it enlarges. Not sure I want to go through that and delay any clinical trials.

Keep up the fright!

Jim


#17

Do you have to get your tumor tested also to apply for the trial? thanks, Trish

jimK said:

I went for my blood test this morning and I'll keep you updated. My surgeon has not willing to operate on me two years ago, after I had radiation treatments. I also have an appointment with him coming up. The last lung and lymph node surgery was with a scope and was less invasive. He is willing to remove the largest lymph node that will cause the first real noticeable symptoms, as it will restrict my airway as it enlarges. Not sure I want to go through that and delay any clinical trials.

Keep up the fright!

Jim


#18

I had to have a blood test, they are looking for a particular gene. I need to be HLA-A2 positive. http://en.wikipedia.org/wiki/HLA-A*02. Depending on your daughter's age I believe she may qualify for the NIH version that would include travel expenses. SEE http://clinicaltrials.gov/ct2/show/study/NCT01343043

Trish said:

Do you have to get your tumor tested also to apply for the trial? thanks, Trish

jimK said:

I went for my blood test this morning and I'll keep you updated. My surgeon has not willing to operate on me two years ago, after I had radiation treatments. I also have an appointment with him coming up. The last lung and lymph node surgery was with a scope and was less invasive. He is willing to remove the largest lymph node that will cause the first real noticeable symptoms, as it will restrict my airway as it enlarges. Not sure I want to go through that and delay any clinical trials.

Keep up the fright!

Jim


#19

Hi Jim - that's the trial. My daughter tested positive for HLA-A2+ but the tumor sample sent to NCI did not test positive for NY-ESO-1+. Praying you will be positive for both. All the best. Trish


#20

So how did your appointment go? Do you have a treatment plan? I also went on a mostly vegan diet. I've been following Joel Fuhrman's Eat to Live diet. The recipes in the book produce a lot of food. I made the AntiCancer soup. It's enough soup for months. You basically eliminate all refined sugars and flours, breads etc..and meats. The diet consists of raw and vegie dishes. So far so good - my family is supportive and we have been on this diet for 3 weeks now. Let me know how you are doing.

Jim

Siimplycandace said:

Yeah I completely understand where you're coming from. I have tumors in both lungs.. they're thinking roughly around maybe 9 or 10 of them. And enlarged lymph nodes dead center in my chest which are really painful unfortunately. I'm seeing Dr. Chalwa and his team of doctors in Santa Monica, CA. I have an appointment on Tuesday so hopefully they've come up with a treatment plan by then. I've changed everything from my diet being organic now to using those crazy oils people keep talking about. I get my port put in soon. They kept putting in PICC lines in my arms because they didn't think it would spread as quickly as it did. SO we'll see! I have yet to have any surgery.. they said its not an option. Exactly NEVER give up and do everything to stay alive! Keep me updated with everything please!