The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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

Forums General Melanoma Community Compassion.Care, IPI, B-RAF, Sarcoidosis, & Confusion.

  • Post
    glewis923
    Participant

      Dear Friends:    I went to MDAnderson and met with Dr. Hwu (the female one).  She was very nice and knowledgeable, but I'm still a little lost and confused:

      Dear Friends:    I went to MDAnderson and met with Dr. Hwu (the female one).  She was very nice and knowledgeable, but I'm still a little lost and confused:

      1-  After 1 year of I-feron can I be eligible for IPI  OR B-Raf/PLX  IF my numerous lung nodules are "small"??  largest was 6mm?    ie.:  CAN I get ANY treatment without "histological Proof" that nodules are indeed m.mel.?     Dr. Hwu has said that until nodules/tumors grow to at least near 1cm. in size, an accurate biopsy/VATS/or even "open chest" surgery cannot be done……and NO treatment administered until this is done.

      2-  She suggested that the nodules could be sarcoidosis.  Anyone else with 8 or more nodules- some growing- been "luckey" enough for this to be the case?

      Thanks in advance for any suggestions or first hand simular experience.  I read y'alls' post every night and hope & pray for all.  This disease sure does suck and I realize I'm blessed to be here…..I just feel like i'm being told I've gotta wait till further progression before i can be treated.

      Love, Hope, and Peace-

      Grady.

      Loading spinner
    Viewing 7 reply threads
    • Replies
        bill58
        Participant

          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

          Loading spinner
          bill58
          Participant

            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

            Loading spinner
            lhaley
            Participant

              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

              Loading spinner
              lhaley
              Participant

                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

                Loading spinner
                Jim in Denver
                Participant

                  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

                  Loading spinner
                  Jim in Denver
                  Participant

                    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

                    Loading spinner
                    MaryD
                    Participant

                      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

                       

                      Loading spinner
                      MaryD
                      Participant

                        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

                         

                        Loading spinner
                    Viewing 7 reply threads
                    • You must be logged in to reply to this topic.
                    About the MRF Patient Forum

                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.