Compassion.Care, IPI, B-RAF, Sarcoidosis, & Confusion.

Grady,

This disease sucks.

I am trying to get into the BRAF treatment.  After confusion with my oncologist, it appears that you have to have current evident disease and have failed at least one prior chemo/immuno treatment and also have your tumor to be BRAF positive.  They can test your tumor for the BRAF mutation.

After my second surgery, i did not qualify for BRAF treatment since I did not have any evident disease.  After my scan 2 weeks ago they found evidence of disease in my spine.  My previous Radiation treatment did not qualify me for the trial so I will be taking an IV dose of dacarbazine this week and will wait for 30 days after treatment to start the BRAF trial.  If my oncologist screws it up this time and I cannot get into the trial I will be going to see another Melanoma specialist.  There are several good ones in the Chicago area.

As far as Ipi, from what I was told, if you have current evident disease, your oncologist can request the compassionate use.  I dont know if you have to have failed any prior treatment or not.   I do not know any restrictions on the size of the nodules or tumors in your body.  If your current oncologist does not want to pursue this option, you should get another opinion.  Everyone keeps telling me that, but I have not done so yet.  if the BRAF does not work then I will be pushing for compassionate Ipi as fallback plan B.  If that fails, then there are a few other trials or IL2 that I will have to look at.

Good luck.

Bill

Grady,

This disease sucks.

I am trying to get into the BRAF treatment.  After confusion with my oncologist, it appears that you have to have current evident disease and have failed at least one prior chemo/immuno treatment and also have your tumor to be BRAF positive.  They can test your tumor for the BRAF mutation.

After my second surgery, i did not qualify for BRAF treatment since I did not have any evident disease.  After my scan 2 weeks ago they found evidence of disease in my spine.  My previous Radiation treatment did not qualify me for the trial so I will be taking an IV dose of dacarbazine this week and will wait for 30 days after treatment to start the BRAF trial.  If my oncologist screws it up this time and I cannot get into the trial I will be going to see another Melanoma specialist.  There are several good ones in the Chicago area.

As far as Ipi, from what I was told, if you have current evident disease, your oncologist can request the compassionate use.  I dont know if you have to have failed any prior treatment or not.   I do not know any restrictions on the size of the nodules or tumors in your body.  If your current oncologist does not want to pursue this option, you should get another opinion.  Everyone keeps telling me that, but I have not done so yet.  if the BRAF does not work then I will be pushing for compassionate Ipi as fallback plan B.  If that fails, then there are a few other trials or IL2 that I will have to look at.

Good luck.

Bill

Grady,

There is a person that posted several months ago from Charleston, Patsy that had some lung nodules.  Hers ended up being sarcoidosis.  Patsy doesn't come on the board very often but if you e-mail me I will send you her e-mail address.

I recently had a tiny node biopsied that was under my collar bone. The radiologist (thinking he was helpful converted it to standard measurement) told me it was approx 1/5 of an inch!  It took about 65 min. for him to get a biopsy but he did. Not sure how different it is for a lung biopsy – most likely much more dangerous to keep trying.  They have told me for the surgery it will also need to be ct guided so I'll be awake for the first part.

It does seem unbelievable that you actually have to wait till it grows to find out what it is!!!!  Your going to one of the best Drs around. 

Sending you hugs and prayers,

Linda

Grady,

There is a person that posted several months ago from Charleston, Patsy that had some lung nodules.  Hers ended up being sarcoidosis.  Patsy doesn't come on the board very often but if you e-mail me I will send you her e-mail address.

I recently had a tiny node biopsied that was under my collar bone. The radiologist (thinking he was helpful converted it to standard measurement) told me it was approx 1/5 of an inch!  It took about 65 min. for him to get a biopsy but he did. Not sure how different it is for a lung biopsy – most likely much more dangerous to keep trying.  They have told me for the surgery it will also need to be ct guided so I'll be awake for the first part.

It does seem unbelievable that you actually have to wait till it grows to find out what it is!!!!  Your going to one of the best Drs around. 

Sending you hugs and prayers,

Linda

Hi Grady,

Dr. Wen Jen Hwu is my doctor at MDA also.  She is good at explaining your options and answering your questions, so I am unclear as to your confusion.  Perhaps you need to research some more?  You are also maybe not posting enough of your history for us to offfer helpful feedback.

You do not mention your staging, but it appears to be Stage III, which would commonly be treated with Interferon.  Who gave you your original diagnosis?  What tissue was tested – where was your primary?  Does MDA have the original tissue sample?  Did you respond at all to the treatment (i.e. did the nodlules change in size and/or number)? 

Have you had genetic testing performed (i.e BRAF testing) on your original tissue sample?  If you had a choice, why would you go for the PLX/Roche trial rather than the GSK trial?  Even if you tested positive for BRAF, would you decide try to get Ipi rather than a BRAF inhibitor?

Enough questions for now.  I went to MDA after having one 1.2 cm nodule excised by needle biopsy.  Dr. Hwu may have asked you to have another scan done in 3 months – did she?  Without a biopsy, it cannot be determined if a nodule is melanoma or not.  But if you have had melanoma found elsewhere, it then is quite possible that the lung nodlule(s) are melanoma. 

I have 6 other nodules in my left lung, all under 1cm, with no primary identified.  Dr. Hwu said that it is not possible to tell if my remaining nodules are, in fact, melanoma.  I am assuming that they are, but she will not say so because she does not know for sure.  She may be telling you that you could have sarcoidosis, because there is not way to tell what you have short of a biopsy.  I understand the frustration of waiting, but many of us have had that experience too.

When is your next appointment scheduled at MDA?  I am in the Ipi/Temador Trial at MDA, and will complete my 4th 3 week cycle during the week of October 4th.  Please keep posting and best wishes.

Regards,

Jim

Hi Grady,

Dr. Wen Jen Hwu is my doctor at MDA also.  She is good at explaining your options and answering your questions, so I am unclear as to your confusion.  Perhaps you need to research some more?  You are also maybe not posting enough of your history for us to offfer helpful feedback.

You do not mention your staging, but it appears to be Stage III, which would commonly be treated with Interferon.  Who gave you your original diagnosis?  What tissue was tested – where was your primary?  Does MDA have the original tissue sample?  Did you respond at all to the treatment (i.e. did the nodlules change in size and/or number)? 

Have you had genetic testing performed (i.e BRAF testing) on your original tissue sample?  If you had a choice, why would you go for the PLX/Roche trial rather than the GSK trial?  Even if you tested positive for BRAF, would you decide try to get Ipi rather than a BRAF inhibitor?

Enough questions for now.  I went to MDA after having one 1.2 cm nodule excised by needle biopsy.  Dr. Hwu may have asked you to have another scan done in 3 months – did she?  Without a biopsy, it cannot be determined if a nodule is melanoma or not.  But if you have had melanoma found elsewhere, it then is quite possible that the lung nodlule(s) are melanoma. 

I have 6 other nodules in my left lung, all under 1cm, with no primary identified.  Dr. Hwu said that it is not possible to tell if my remaining nodules are, in fact, melanoma.  I am assuming that they are, but she will not say so because she does not know for sure.  She may be telling you that you could have sarcoidosis, because there is not way to tell what you have short of a biopsy.  I understand the frustration of waiting, but many of us have had that experience too.

When is your next appointment scheduled at MDA?  I am in the Ipi/Temador Trial at MDA, and will complete my 4th 3 week cycle during the week of October 4th.  Please keep posting and best wishes.

Regards,

Jim

Hi Grady,

I had just one nodule that had grown from 3mm to 8 mm and I was able to get it removed with VATS surgery so not sure I quite understand either.   Did these nodules suddenly appear all at once or has there been any documented growth over time?

I've always done an adjuvant treatment after a recurrence and did so as well after the lung met (pulsed IL-2 because the clinical trial I had waited for did not start on time).  Prior to this recurrence I had done Ipi ..

Not sure how many opinions you have sought but maybe it wouldn't hurt to get some more input.

Wishing you good luck!

Mary

Stage IV – currently NED

Hi Grady,

I had just one nodule that had grown from 3mm to 8 mm and I was able to get it removed with VATS surgery so not sure I quite understand either.   Did these nodules suddenly appear all at once or has there been any documented growth over time?

I've always done an adjuvant treatment after a recurrence and did so as well after the lung met (pulsed IL-2 because the clinical trial I had waited for did not start on time).  Prior to this recurrence I had done Ipi ..

Not sure how many opinions you have sought but maybe it wouldn't hurt to get some more input.

Wishing you good luck!

Mary

Stage IV – currently NED