MDA Patients AND SKYSAR from Hotlantr-

Hey ShadyGrady:

I have lung mets as well.  I did 1 year of interferon in 2007.  IL-2 in 2010, which I did not tolerate so well.  By blood pressure dropped considerably.  I went thru a total of 8 bags in 2 cycles and the response was not what we had hoped.  Dr. Lawson at Emory suggested we do not continue since I had such a rough time and the response was not all that great.

In June I had VATS done on my left lung.  Surgeon removed 1 nodule  we were aware of and another that did not show up on any of the scans.  I also have mets on the right lung.

A a few days after surgery my lung collapsed and EMT took me to Emory from Newnan (50 miles)!  Had to stay about 4 days.  

My husband and I did a lot of research regarding the docs at the top cancer organizations.  We were able to get an appointment with Dr. Weber at Moffitt who is highly recommended on this board.  We both liked him very much.  However, Moffitt received so many patients for the IPI compassionate trial they had to send everyone to MD Anderson in Orlando.  Dr. Weber recommended we go to Houston.  The trial at Moffitt is different than the one at MDA in Houston.   Houston offers IPI 10 mg/with Temodar.

Our other choice was Dr. Patrick Hwu at MDA in Houston.  I was fortunate enough to get an appointment.  It took a couple of weeks.  I have been extremely pleased so far with MDA helping us work thru this process especially with our insurance issues. 

We leave this afternoon and my first treatment is tomorrow afternoon.  I'll keep everyone posted.  By the way, I'm fixin' to be 60 in December.  Oh Boy!

Sue

Hotlanta

Hey ShadyGrady:

I have lung mets as well.  I did 1 year of interferon in 2007.  IL-2 in 2010, which I did not tolerate so well.  By blood pressure dropped considerably.  I went thru a total of 8 bags in 2 cycles and the response was not what we had hoped.  Dr. Lawson at Emory suggested we do not continue since I had such a rough time and the response was not all that great.

In June I had VATS done on my left lung.  Surgeon removed 1 nodule  we were aware of and another that did not show up on any of the scans.  I also have mets on the right lung.

A a few days after surgery my lung collapsed and EMT took me to Emory from Newnan (50 miles)!  Had to stay about 4 days.  

My husband and I did a lot of research regarding the docs at the top cancer organizations.  We were able to get an appointment with Dr. Weber at Moffitt who is highly recommended on this board.  We both liked him very much.  However, Moffitt received so many patients for the IPI compassionate trial they had to send everyone to MD Anderson in Orlando.  Dr. Weber recommended we go to Houston.  The trial at Moffitt is different than the one at MDA in Houston.   Houston offers IPI 10 mg/with Temodar.

Our other choice was Dr. Patrick Hwu at MDA in Houston.  I was fortunate enough to get an appointment.  It took a couple of weeks.  I have been extremely pleased so far with MDA helping us work thru this process especially with our insurance issues. 

We leave this afternoon and my first treatment is tomorrow afternoon.  I'll keep everyone posted.  By the way, I'm fixin' to be 60 in December.  Oh Boy!

Sue

Hotlanta

Hi Grady,

I have small lung met, like yours, and was diagnosed in March this year after a needle biopsy(Stage IV).  I am one of 3 people who are doing the trial you mention at MD Anderson – I started August 3rd.  I arrived at this trial at MDA after having been tested at the U of Colorado for genetic mutations (BRAF, etc) that they could treat locally in trials here.  As far as I can tell MDA is certainly among the best places for melanoma – at least I believe that there are none better in this country.  I researched all the clinical trial available currently for melanoma, and felt that the one I was able to do involving both Ipi and chemotherapy (temador) looked very promising and was my preferred option.  For more information, go here:

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01119508

So in my case I wanted this trial and I referred myself to MDA, which maybe is not the usual way other go about this, but I am one who does my homework and prefers to make my own decisions.   I was given an appointment with Dr. Wen Jen Hwu since she was the first Oncologist available.   I had to wait about 3 weeks to be seen the first time.  MDA will want to your records, scans, and slides (tissue samples) before you first appointment.  I did not have insurance issues, but apparently Sue has had some, so don't ignore that angle.  There are a number of excellent Oncologists there, and I think you could not go wrong with any of them. 

You must be screened to be admitted to this trial, and there are strict criteria for both inclusion and/or exclusion.  You should learn more about clinical trials in general, and this one in particular.  Your question #4 above suggests you could benefit from a better understanding of how clinical trials work.  For example, IL2 and temador are both already FDA approved, so you do not need to be enrolled in any trial to receive them.  Ipilimumab is not yet approved, although it has shown effectiveness and will likely be approved by FDA   There is no assurance that Ipi will receive 'fast track" approval, so waiting may not be in your best interest unless you like to take risks.  When Ipi is approved, it will be a very expensive treatment, which may not be such a positive thing for patients depending on their insurance situation.  You may also want to research IL2 further – the potential side effects are at least as much of a potential issue as with interferon, from what I have seen. 

A couple of other points – don't take anyone's opinion for a fact.  Even the Mayo Docs cannot (and should not) say whether your other lung nodules are melanoma or not.  In my view, the probabilities thrown around by would-be experts (are your Docs really melanoma experts at Mayo?) don't mean much – your nodules are ether 100% or 0% melanoma.  I have other nodules in my left lung, but Dr Hwu says she does not know if they are melanoma or not unless they are excised and tested (I smoked for 40 years).  Whether my remaining nodules are melanoma does not really matter regarding my choice of treatment.  The idea is that they will hopefully not grow and they will be monitored (scanned) perodically.  I have had no "primary" melanoma identified, which happens around 15% of now diagnoses, although I have a family history of melanoma and am at high risk (red hair, fair skin, sun overexposure as a child/adolescent, numerous basil and squamous surface tumors over the last 25 years).

I don't think you have anything to lose by going to Houston – make the appointment.  Learn more about the disease and treatment options before you go so you can ask informed questions.  Don't expect any treatment to be a sure thing – try to figure out what Plan B might look like.  If you can slow this disease down, or stop it from progressing, those may be realistic and achievable goals.  Reversing it and having it not come back – those may be harder to achieve, but are worthy goals to have.  Take it one step at a time, and see what you options are, then make your decisions after doing your homework.  Best wishes to you ahd hope I have helped you a little.

Regards,

Jim

Hi Grady,

I have small lung met, like yours, and was diagnosed in March this year after a needle biopsy(Stage IV).  I am one of 3 people who are doing the trial you mention at MD Anderson – I started August 3rd.  I arrived at this trial at MDA after having been tested at the U of Colorado for genetic mutations (BRAF, etc) that they could treat locally in trials here.  As far as I can tell MDA is certainly among the best places for melanoma – at least I believe that there are none better in this country.  I researched all the clinical trial available currently for melanoma, and felt that the one I was able to do involving both Ipi and chemotherapy (temador) looked very promising and was my preferred option.  For more information, go here:

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01119508

So in my case I wanted this trial and I referred myself to MDA, which maybe is not the usual way other go about this, but I am one who does my homework and prefers to make my own decisions.   I was given an appointment with Dr. Wen Jen Hwu since she was the first Oncologist available.   I had to wait about 3 weeks to be seen the first time.  MDA will want to your records, scans, and slides (tissue samples) before you first appointment.  I did not have insurance issues, but apparently Sue has had some, so don't ignore that angle.  There are a number of excellent Oncologists there, and I think you could not go wrong with any of them. 

You must be screened to be admitted to this trial, and there are strict criteria for both inclusion and/or exclusion.  You should learn more about clinical trials in general, and this one in particular.  Your question #4 above suggests you could benefit from a better understanding of how clinical trials work.  For example, IL2 and temador are both already FDA approved, so you do not need to be enrolled in any trial to receive them.  Ipilimumab is not yet approved, although it has shown effectiveness and will likely be approved by FDA   There is no assurance that Ipi will receive 'fast track" approval, so waiting may not be in your best interest unless you like to take risks.  When Ipi is approved, it will be a very expensive treatment, which may not be such a positive thing for patients depending on their insurance situation.  You may also want to research IL2 further – the potential side effects are at least as much of a potential issue as with interferon, from what I have seen. 

A couple of other points – don't take anyone's opinion for a fact.  Even the Mayo Docs cannot (and should not) say whether your other lung nodules are melanoma or not.  In my view, the probabilities thrown around by would-be experts (are your Docs really melanoma experts at Mayo?) don't mean much – your nodules are ether 100% or 0% melanoma.  I have other nodules in my left lung, but Dr Hwu says she does not know if they are melanoma or not unless they are excised and tested (I smoked for 40 years).  Whether my remaining nodules are melanoma does not really matter regarding my choice of treatment.  The idea is that they will hopefully not grow and they will be monitored (scanned) perodically.  I have had no "primary" melanoma identified, which happens around 15% of now diagnoses, although I have a family history of melanoma and am at high risk (red hair, fair skin, sun overexposure as a child/adolescent, numerous basil and squamous surface tumors over the last 25 years).

I don't think you have anything to lose by going to Houston – make the appointment.  Learn more about the disease and treatment options before you go so you can ask informed questions.  Don't expect any treatment to be a sure thing – try to figure out what Plan B might look like.  If you can slow this disease down, or stop it from progressing, those may be realistic and achievable goals.  Reversing it and having it not come back – those may be harder to achieve, but are worthy goals to have.  Take it one step at a time, and see what you options are, then make your decisions after doing your homework.  Best wishes to you ahd hope I have helped you a little.

Regards,

Jim