JuliaZ

For our relative it took almost 5 weeks to confirm responce. Fewer and skin rush reaction as a positive immune system responce happened 2 weeks after second treatment.

Medication actualy helped. He was progression free from start ( June 2010) to reaccurance ( Jan. 2011). We blame steroids as a trigger for cancer to reactivate. Within a month after 3 weeks on massive dose of steroids metastases multyplied in unmeasurable amount.

For our relative it took almost 5 weeks to confirm responce. Fewer and skin rush reaction as a positive immune system responce happened 2 weeks after second treatment.

Medication actualy helped. He was progression free from start ( June 2010) to reaccurance ( Jan. 2011). We blame steroids as a trigger for cancer to reactivate. Within a month after 3 weeks on massive dose of steroids metastases multyplied in unmeasurable amount.

For PLX 4032 – study ID number is ML25597. You can google it. This is a last trial that is being offered for this medication.

Trial site are:

Sarah Cannon Research Institute (Tennessee Oncology)
Nashville, TN
Investigator: John Hainsworth
Phone number: 1-877-691-7274

Karmanos Cancer Center
Detroit, MI
Investigator:  Lawrence Flaherty
Coordinator:  Lisa Kolomyski
Phone number:  313-576-9386

The Angeles Clinic and Research Center
Los Angeles, CA
Investigator:  Steven O’Day
Coordinator:  Gina Deck
Phone number: 310-231-2121

UCLA Department of Medicine
Los Angeles, CA
Investigator: Antoni Ribas
Coordinator:  Liz Seja
Phone Number:  310-794-6892

Providence Portland Medical Center
Portland, OR
Investigator:  Brendan Curti
Coordinator:  Christopher Fountain
Phone Number:  503-215-2691

South Carolina Oncology
Columbia, South Carolina
Investigator: Dr. Kudirk
Coordinators:
Primary: Sue Modugno 803-461-3090
Secondary: Pam Tims. 803-461-3089

Virginia Cancer Institute
Richmond, VA
Investigator: Dr. Khatcheressian
Coordinator:  Vicki Tolbert
Phone Number: 804-287-3000

Texas Oncology, PA
Dallas, TX
Investigator:  Dr. Cowey Lance
Administrator: Rosanna Quiroz
Phone Number:  214-370-1986

Florida Cancer Specialists
Ft. Meyers, FL
Investigator:  Dr. Robert Weaver
Coordinator:  Cara O’Keefe
239-274-9930

Oncology & Hematology Care, Inc.
Cincinnati, OH
Investigator:  Dr.  Peter Ruehlman
Coordinator:  Ann Bradley
Phone: 513-751-2273

University of Pennsylvania
Philadelphia, PA
Investigator:  Dr. Lynn Schuchter
Coordinator:  Joanne Ciconte
Phone: 215-349-8622

Washington University School of Medicine
St. Louis, MO
Investigator:  Gerald Linette
Coordinator:  Chloe Fournier
Phone: 314-747-4235

There is exclusion for people with activity in the brain. But once it get treated with radiology and there is no new progress, then patient can qualify.

Plexxikon apllied for FDA approval for PLX 4032 on May 12. Once it will be approved it will be widely available.

Best wishes.

For PLX 4032 – study ID number is ML25597. You can google it. This is a last trial that is being offered for this medication.

Trial site are:

Sarah Cannon Research Institute (Tennessee Oncology)
Nashville, TN
Investigator: John Hainsworth
Phone number: 1-877-691-7274

Karmanos Cancer Center
Detroit, MI
Investigator:  Lawrence Flaherty
Coordinator:  Lisa Kolomyski
Phone number:  313-576-9386

The Angeles Clinic and Research Center
Los Angeles, CA
Investigator:  Steven O’Day
Coordinator:  Gina Deck
Phone number: 310-231-2121

UCLA Department of Medicine
Los Angeles, CA
Investigator: Antoni Ribas
Coordinator:  Liz Seja
Phone Number:  310-794-6892

Providence Portland Medical Center
Portland, OR
Investigator:  Brendan Curti
Coordinator:  Christopher Fountain
Phone Number:  503-215-2691

South Carolina Oncology
Columbia, South Carolina
Investigator: Dr. Kudirk
Coordinators:
Primary: Sue Modugno 803-461-3090
Secondary: Pam Tims. 803-461-3089

Virginia Cancer Institute
Richmond, VA
Investigator: Dr. Khatcheressian
Coordinator:  Vicki Tolbert
Phone Number: 804-287-3000

Texas Oncology, PA
Dallas, TX
Investigator:  Dr. Cowey Lance
Administrator: Rosanna Quiroz
Phone Number:  214-370-1986

Florida Cancer Specialists
Ft. Meyers, FL
Investigator:  Dr. Robert Weaver
Coordinator:  Cara O’Keefe
239-274-9930

Oncology & Hematology Care, Inc.
Cincinnati, OH
Investigator:  Dr.  Peter Ruehlman
Coordinator:  Ann Bradley
Phone: 513-751-2273

University of Pennsylvania
Philadelphia, PA
Investigator:  Dr. Lynn Schuchter
Coordinator:  Joanne Ciconte
Phone: 215-349-8622

Washington University School of Medicine
St. Louis, MO
Investigator:  Gerald Linette
Coordinator:  Chloe Fournier
Phone: 314-747-4235

There is exclusion for people with activity in the brain. But once it get treated with radiology and there is no new progress, then patient can qualify.

Plexxikon apllied for FDA approval for PLX 4032 on May 12. Once it will be approved it will be widely available.

Best wishes.

Michelle,

I hope that you were able to resolve issues with dr. ibrahim. But, unfortunately, i believe that if you decide to stay with this "doctor" you will loose your husband very quickly. It happening to my brother-in-law as i wright this. She said "we lost him. there is no reason to complain now". But he is still alive!!!!!!

She is unorganized and panics when situation requires quick action. She does not listen to paitien complains and when situation gets out of control she makes an "angel" face and asks " did i miss something". Once melanoma get to the advanced stage, treatment was stoped. And now, 3 month later, when we know that so much was not done, we fill that it actually our failure that we trusted her and now we are loosing beloved person. 

My sister tried to contact Dr. Hodi to get at least second opinion, but he refused to meet with her. And he was very rude and unpleasant  and sugested that she should transfer her husband to other hospital. They treated him for more then a year and now just want to get him out of their hoispital. There is no other melanoma oncologist in Dana Farber. And there is simply no time to look for other hospital. And on top of this very rude and unprofessional medical pesonal. 

Unfortunately, there is not much good that could be said about dr. Ibrahim and you probably still have time to find better oncology clinic. 

Sorry, if i dissappointed you.

Michelle,

I hope that you were able to resolve issues with dr. ibrahim. But, unfortunately, i believe that if you decide to stay with this "doctor" you will loose your husband very quickly. It happening to my brother-in-law as i wright this. She said "we lost him. there is no reason to complain now". But he is still alive!!!!!!

She is unorganized and panics when situation requires quick action. She does not listen to paitien complains and when situation gets out of control she makes an "angel" face and asks " did i miss something". Once melanoma get to the advanced stage, treatment was stoped. And now, 3 month later, when we know that so much was not done, we fill that it actually our failure that we trusted her and now we are loosing beloved person. 

My sister tried to contact Dr. Hodi to get at least second opinion, but he refused to meet with her. And he was very rude and unpleasant  and sugested that she should transfer her husband to other hospital. They treated him for more then a year and now just want to get him out of their hoispital. There is no other melanoma oncologist in Dana Farber. And there is simply no time to look for other hospital. And on top of this very rude and unprofessional medical pesonal. 

Unfortunately, there is not much good that could be said about dr. Ibrahim and you probably still have time to find better oncology clinic. 

Sorry, if i dissappointed you.

It is all familiar situation with Ibrahim She gets alert and responsive once she gets pushed a little. Two weeks ago we placed complain with patient rep's about dr. Ibrahim questionable performance and not respondng to paitient condition and failing to schedule a simple follow-up appointment.  Paitient rep said that just today Ibrahim called them and warned them that we would call with complaint. And, miracle, next day she, by herself, came to the hospital room where my brother-in-law was already for almost a week already. More, she came with a tem of doctors and there was a great progress made in planning future treatment.  And here we are right now, one week later, she does not return phone calls and even scheduled unnecessary Cat-scan an MRI (tsame tests were done 2 weeks ago) at the same time when radiation was scheduled. When question come up about those tests, she simply cancels those without any explanation. Even nurse was surprised and had no idea what is going on.

About trials at DF. They have few of them that are sutable for melanoma. The problem is, those are trials that they want to push thru. As a metter of fact one of them Ipilimumab + Bevacizumab is in Phase I for quite a while now. Medication is very toxic and they can not stabilize proportion of medications. Ipilimumab ( Yarvoy) is very toxic by itself. ( survaival rate about 20%) Looks like person will get more sicker from it, then from melanoma itself. According to toxicologist, side effects may appear even few month after the trial. 

One more thing about trials, that we found the hard way. Dana Farber ( as any other clinic) will push for trials that available at they hospital. It is all about money and having another " trial rabbit" for their medication. Very often, once trial has started other trials automaticly became not available for patient, since those trials require no prior treatment.  We made a huge misteke when agreed to DF trial without prior research. Ibrahim pished hard and since there were other health problems, trial was on in no time. We just found out, that at the same time other hospitals around country were reqruting patients without prior treatment for trial PLX 4032 (Plexikkon) that in fact has 80% survival. It is for BRAF mutation, perfect much for my brother-in-law. Trial is over now and Plexikkon filled for FDA approval on May 12. They still offer extended acces for trial for the same medication. Trial ML25597 for RG7204 (PLX 4032). 

When in January question we asked about Plexikkon's trial Ibraim said that closest city where it was offered is Detroit, but it is too far and she does not recommend to go there, since Plexikkon will be available at DF in 4 weeks. After 4 weeks pasts, there were another 4 weeks, and another 4 weeks. Lies, lies, lies……

I called Plexikkon and found out that they d offer this extended acces trial in Philadelphia, which is much closer then Detroit. Coordinator at Philadelphia was very helpfull and paperwork was started in no time. BUT,…. it is too late.

You can check all trials at cancer.gov. Do not hesitate to cal them also.

Best wishes.

Julia

It is all familiar situation with Ibrahim She gets alert and responsive once she gets pushed a little. Two weeks ago we placed complain with patient rep's about dr. Ibrahim questionable performance and not respondng to paitient condition and failing to schedule a simple follow-up appointment.  Paitient rep said that just today Ibrahim called them and warned them that we would call with complaint. And, miracle, next day she, by herself, came to the hospital room where my brother-in-law was already for almost a week already. More, she came with a tem of doctors and there was a great progress made in planning future treatment.  And here we are right now, one week later, she does not return phone calls and even scheduled unnecessary Cat-scan an MRI (tsame tests were done 2 weeks ago) at the same time when radiation was scheduled. When question come up about those tests, she simply cancels those without any explanation. Even nurse was surprised and had no idea what is going on.

About trials at DF. They have few of them that are sutable for melanoma. The problem is, those are trials that they want to push thru. As a metter of fact one of them Ipilimumab + Bevacizumab is in Phase I for quite a while now. Medication is very toxic and they can not stabilize proportion of medications. Ipilimumab ( Yarvoy) is very toxic by itself. ( survaival rate about 20%) Looks like person will get more sicker from it, then from melanoma itself. According to toxicologist, side effects may appear even few month after the trial. 

One more thing about trials, that we found the hard way. Dana Farber ( as any other clinic) will push for trials that available at they hospital. It is all about money and having another " trial rabbit" for their medication. Very often, once trial has started other trials automaticly became not available for patient, since those trials require no prior treatment.  We made a huge misteke when agreed to DF trial without prior research. Ibrahim pished hard and since there were other health problems, trial was on in no time. We just found out, that at the same time other hospitals around country were reqruting patients without prior treatment for trial PLX 4032 (Plexikkon) that in fact has 80% survival. It is for BRAF mutation, perfect much for my brother-in-law. Trial is over now and Plexikkon filled for FDA approval on May 12. They still offer extended acces for trial for the same medication. Trial ML25597 for RG7204 (PLX 4032). 

When in January question we asked about Plexikkon's trial Ibraim said that closest city where it was offered is Detroit, but it is too far and she does not recommend to go there, since Plexikkon will be available at DF in 4 weeks. After 4 weeks pasts, there were another 4 weeks, and another 4 weeks. Lies, lies, lies……

I called Plexikkon and found out that they d offer this extended acces trial in Philadelphia, which is much closer then Detroit. Coordinator at Philadelphia was very helpfull and paperwork was started in no time. BUT,…. it is too late.

You can check all trials at cancer.gov. Do not hesitate to cal them also.

Best wishes.

Julia

From our experience, there is not much to expect from dr. ibrahim. She does not like to return messages. Dr. hodi is not a big help as well. There are only two melanoma oncologists left at Dana Farber and they are overwhelmed with paitients.

From our experience, there is not much to expect from dr. ibrahim. She does not like to return messages. Dr. hodi is not a big help as well. There are only two melanoma oncologists left at Dana Farber and they are overwhelmed with paitients.