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MDA Patients AND SKYSAR from Hotlantr-

Forums General Melanoma Community MDA Patients AND SKYSAR from Hotlantr-

  • Post
    glewis923
    Participant

      Dear All:  

      First i'll ask Sue (skysar) since she seemed to have hit my nail on the head…..also any other of ya'll that have had lung mets and went to MDAnderson.  

      1–  After 1 yr. Interferon i finished in mid July.

      2– Had my 3 mth. CT scan at Mayo, JAX,  which showed increased # of lung nodules AND increase in size of 5 or more "micro-nodules" that have been present since my Feb. and/or May CT scan.  Largest noted is still under 1cm –  around 7 mm –  rest are around 5mm.

      Dear All:  

      First i'll ask Sue (skysar) since she seemed to have hit my nail on the head…..also any other of ya'll that have had lung mets and went to MDAnderson.  

      1–  After 1 yr. Interferon i finished in mid July.

      2– Had my 3 mth. CT scan at Mayo, JAX,  which showed increased # of lung nodules AND increase in size of 5 or more "micro-nodules" that have been present since my Feb. and/or May CT scan.  Largest noted is still under 1cm –  around 7 mm –  rest are around 5mm.

      3– I'm ready to go to MDA for the best?? advise/treatment.

       

      Questions:  

      1– Sue/others- are/were your circumstances simular?

      2– What treatment was recommended?  (besides IPI)

      3– How long after contact does it take to get appt.?? 

      4– I am considering IPI, but wonder if something more "proven" to at least hopefully suppress increased tumor growth- like IL-2 with Tremador thrown in- would perhaps be better for me …..and at least buy time 'till IPI  "easier" to get: ie.- FDA approved we hope around 1st of 2011.

      5– I'm fixn' to be 48 yrs. old and in pretty good health other than probable stage 4 mm now.

       

      Any input would be greatly appreciated- especially from those who know more than me-  …..from anyone, and especially people that are/were in same circumstances.  MDA experts like AmyB and others may could give me some good advise!

       

      Mayo in JAX said 80-90% sure at this pt. the mutiple spots on lungs are mm.  

       

      I think of ALL of you often; feel guilty that i only get on here for questions, but so far my only "big experience" has been I-feron.

       

      Love and God Bless EVERYONE! –    Grady.  aka  "ShadyGrady Low Swamps of GA."

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    • Replies
        skysar
        Participant

          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

           

           

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            glewis923
            Participant

              testing

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              glewis923
              Participant

                testing

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                glewis923
                Participant

                  Dear Sue & Family-  tried to reply earlier but it wouldn't take.  Have to use my wife's comp. as mine- altho. identical– won't let me log in……anyway….A very small world indeed:

                  Dr. Lawson at Emory/Winship was recommended by Keith Flannery (who knows my local Waycross Onc.) who is on cutting edge of B-Raf / PLX 4032  research.  Since you went to him I shall ask:

                  Did he discuss at all the B-Raf / PLX 4038 treatment; and what was reason(s) not to do that instead of IPI ?…….they are both showing great short-term promise if nothing else.  

                  My Mayo Dr. also directed me to Orlando for IPI, but I decided to go to MDA and get their opinion , as i'm torn between IPI/Tremado,  B-Raf,  or the conventional approach of IL-2 or such combo.

                   

                  Thanks so very much!

                  Love ALL,  Grady & Family.

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                  skysar
                  Participant

                    Hey Grady and Family:

                    I did not have one of the mutations for the B-RAF, however, they were going to check about additional mutations and also check for MEK?

                    IL-2 was horrible for me, however, there are several people on this board who have had great success with IL-2.  I think the IPI trial is the biggie right now.  I had to have an ekg, chest xray and ct/mri scans.  Tests for IL-2 was a bit more involved.   

                    I feel very comfortable with MDA and fortunate to be able to see the doc I researched.  

                    Leaving for the airport.  Keep me posted.

                     

                    Sue

                    Hotlanta

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                    skysar
                    Participant

                      Hey Grady and Family:

                      I did not have one of the mutations for the B-RAF, however, they were going to check about additional mutations and also check for MEK?

                      IL-2 was horrible for me, however, there are several people on this board who have had great success with IL-2.  I think the IPI trial is the biggie right now.  I had to have an ekg, chest xray and ct/mri scans.  Tests for IL-2 was a bit more involved.   

                      I feel very comfortable with MDA and fortunate to be able to see the doc I researched.  

                      Leaving for the airport.  Keep me posted.

                       

                      Sue

                      Hotlanta

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                      glewis923
                      Participant

                        Dear Sue & Family-  tried to reply earlier but it wouldn't take.  Have to use my wife's comp. as mine- altho. identical– won't let me log in……anyway….A very small world indeed:

                        Dr. Lawson at Emory/Winship was recommended by Keith Flannery (who knows my local Waycross Onc.) who is on cutting edge of B-Raf / PLX 4032  research.  Since you went to him I shall ask:

                        Did he discuss at all the B-Raf / PLX 4038 treatment; and what was reason(s) not to do that instead of IPI ?…….they are both showing great short-term promise if nothing else.  

                        My Mayo Dr. also directed me to Orlando for IPI, but I decided to go to MDA and get their opinion , as i'm torn between IPI/Tremado,  B-Raf,  or the conventional approach of IL-2 or such combo.

                         

                        Thanks so very much!

                        Love ALL,  Grady & Family.

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                      skysar
                      Participant

                        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

                         

                         

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                        Jim in Denver
                        Participant

                          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

                           

                           

                           

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                          Jim in Denver
                          Participant

                            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

                             

                             

                             

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