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Confused

Forums General Melanoma Community Confused

  • Post
    tlynn
    Participant

      so im coming up on my 2 year mark, i feel like nothing has been done… i have had 4 surgries and am constantly back at the doctor. On top of all that im a college student with no support system around me…. i have been looking for a chat site and stumbled upon this one by chance. My next apt. is on Thursday and im freaking out.. Any advice?

      so im coming up on my 2 year mark, i feel like nothing has been done… i have had 4 surgries and am constantly back at the doctor. On top of all that im a college student with no support system around me…. i have been looking for a chat site and stumbled upon this one by chance. My next apt. is on Thursday and im freaking out.. Any advice?

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    • Replies
        glewis923
        Participant

          Dear TLYNN:

          Tell me about it ! (70's lingo)…..really, what exactly is your current condition?  If you are still stg. 3 as i once was, I can give you all kinda advice ! ;  things i wish i had done instead of being pacified by "feel-good" but DO NOTHING Drs.

          Good luck, and albeit cyber-friends from a-far, you have a lot of peeps on here with tons-o-knowledge and/or warm friendly caring…..and sometimes blout advice/ opinions.

          Hang in there ! (more 70's lingo),  We Love You, Grady & Family.

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            tlynn
            Participant

              well, at my dianosis i went in for immediate removal, The main spot was removed 3 times in 4 weeks, along with a centinal node biopsy, which came back with a tumor, but they said that the didnt want to advance in treatment becasue they didnt THINK it would do anything. My original diagnosis was stage 3 metastatic melanoma. (ps, i cant spell to save my life!) I havent actually asked for a recent stage diagnosis because everytime im there i just get so angry…

              thank you for you fast reply, i have been sitting here for hours just pondering what will happen on thursday.

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              LynnLuc
              Participant

                Find another oncologist…if it's in the lymph nodes you really  should have started some kind of treatment by now…when I was in wisconson they took out 5 sentinal lymph nodes and said they were all clear…recommended no follow up …nothing…next time it popped up it was  6.8 cent and  and in a lymph node by my heart pressing aginst my superior vena cava….I am stage 4-NED…We lived in North Dakota and they didn't want to do anything and I went to Mayo and all they could offer me after surgery was Leukine injections…we finally moved to Florida so I could go to Moffitt…Heck I am worth it!

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                LynnLuc
                Participant

                  Find another oncologist…if it's in the lymph nodes you really  should have started some kind of treatment by now…when I was in wisconson they took out 5 sentinal lymph nodes and said they were all clear…recommended no follow up …nothing…next time it popped up it was  6.8 cent and  and in a lymph node by my heart pressing aginst my superior vena cava….I am stage 4-NED…We lived in North Dakota and they didn't want to do anything and I went to Mayo and all they could offer me after surgery was Leukine injections…we finally moved to Florida so I could go to Moffitt…Heck I am worth it!

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                  tlynn
                  Participant

                    well, at my dianosis i went in for immediate removal, The main spot was removed 3 times in 4 weeks, along with a centinal node biopsy, which came back with a tumor, but they said that the didnt want to advance in treatment becasue they didnt THINK it would do anything. My original diagnosis was stage 3 metastatic melanoma. (ps, i cant spell to save my life!) I havent actually asked for a recent stage diagnosis because everytime im there i just get so angry…

                    thank you for you fast reply, i have been sitting here for hours just pondering what will happen on thursday.

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                  glewis923
                  Participant

                    Dear TLYNN:

                    Tell me about it ! (70's lingo)…..really, what exactly is your current condition?  If you are still stg. 3 as i once was, I can give you all kinda advice ! ;  things i wish i had done instead of being pacified by "feel-good" but DO NOTHING Drs.

                    Good luck, and albeit cyber-friends from a-far, you have a lot of peeps on here with tons-o-knowledge and/or warm friendly caring…..and sometimes blout advice/ opinions.

                    Hang in there ! (more 70's lingo),  We Love You, Grady & Family.

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                    JoanR
                    Participant

                      Well you have stumbled across the very best melanoma site  for education and above all support. Feel free to post on the bulletin board (people don't go to the chatroom much since it was changed)..ask anything you want or let us know what your concerns are, and I will guarantee you will have a response from someone who has experienced what you are.

                      Good luck, and congratulations on 2 years …

                      Joan

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                      JoanR
                      Participant

                        Well you have stumbled across the very best melanoma site  for education and above all support. Feel free to post on the bulletin board (people don't go to the chatroom much since it was changed)..ask anything you want or let us know what your concerns are, and I will guarantee you will have a response from someone who has experienced what you are.

                        Good luck, and congratulations on 2 years …

                        Joan

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                        JakeinNY
                        Participant

                          Do your best to keep your mind occupied with other things. When you go to the Dr. on Thursday, write down all that you can so that you can post it here if need be. Any reports, etc. would help.

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                          JakeinNY
                          Participant

                            Do your best to keep your mind occupied with other things. When you go to the Dr. on Thursday, write down all that you can so that you can post it here if need be. Any reports, etc. would help.

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                            Fen
                            Participant

                              Where are you being treated?  It's important to go to a melanoma specialist because mel doesn't act like other cancers.  Where was your primary?  Who is your dr.?      It will help people give you specific info if you post these things.

                              fen

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                                tlynn
                                Participant

                                  My primary spot was located im my upper right arm, facing my chest. I go to the University of Iowa Hospital in Iowa city. My doctor is a melanoma specialist, Dr. Milham, his way of "dealing" with my stress about these things is having me visit more often, which sucks even more because i live 2 hrs away… I have my apt. today at 1pm. And i dont think I can handle him or my surgeon giving me the run around again. Has anyone reasearched ipi? I dont think im eligable for the study, but it sounds great.

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                                  tlynn
                                  Participant

                                    My primary spot was located im my upper right arm, facing my chest. I go to the University of Iowa Hospital in Iowa city. My doctor is a melanoma specialist, Dr. Milham, his way of "dealing" with my stress about these things is having me visit more often, which sucks even more because i live 2 hrs away… I have my apt. today at 1pm. And i dont think I can handle him or my surgeon giving me the run around again. Has anyone reasearched ipi? I dont think im eligable for the study, but it sounds great.

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                                    tlynn
                                    Participant

                                      My primary spot was located im my upper right arm, facing my chest. I go to the University of Iowa Hospital in Iowa city. My doctor is a melanoma specialist, Dr. Milham, his way of "dealing" with my stress about these things is having me visit more often, which sucks even more because i live 2 hrs away… I have my apt. today at 1pm. And i dont think I can handle him or my surgeon giving me the run around again. Has anyone reasearched ipi? I dont think im eligable for the study, but it sounds great.

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                                      tlynn
                                      Participant

                                        My primary spot was located im my upper right arm, facing my chest. I go to the University of Iowa Hospital in Iowa city. My doctor is a melanoma specialist, Dr. Milham, his way of "dealing" with my stress about these things is having me visit more often, which sucks even more because i live 2 hrs away… I have my apt. today at 1pm. And i dont think I can handle him or my surgeon giving me the run around again. Has anyone reasearched ipi? I dont think im eligable for the study, but it sounds great.

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                                        tlynn
                                        Participant

                                          My primary spot was located im my upper right arm, facing my chest. I go to the University of Iowa Hospital in Iowa city. My doctor is a melanoma specialist, Dr. Milham, his way of "dealing" with my stress about these things is having me visit more often, which sucks even more because i live 2 hrs away… I have my apt. today at 1pm. And i dont think I can handle him or my surgeon giving me the run around again. Has anyone reasearched ipi? I dont think im eligable for the study, but it sounds great.

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                                          tlynn
                                          Participant

                                            My primary spot was located im my upper right arm, facing my chest. I go to the University of Iowa Hospital in Iowa city. My doctor is a melanoma specialist, Dr. Milham, his way of "dealing" with my stress about these things is having me visit more often, which sucks even more because i live 2 hrs away… I have my apt. today at 1pm. And i dont think I can handle him or my surgeon giving me the run around again. Has anyone reasearched ipi? I dont think im eligable for the study, but it sounds great.

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                                          Fen
                                          Participant

                                            Where are you being treated?  It's important to go to a melanoma specialist because mel doesn't act like other cancers.  Where was your primary?  Who is your dr.?      It will help people give you specific info if you post these things.

                                            fen

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                                            TAC
                                            Participant

                                              If I read your post correctly that after surgery and the nodes conatined melanoma, the doctor didn't offer any further treatment. If this is so, you need another oncologist!! Go to your appt, write a list of questions to ask, write down the answers he gives you and then come back here to post again. There are lots of folks here with more experience with meanoma than your doc will have in his life time. Come back and get advice, support, information and education about your situation and melanoma. Best wishes.

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                                              TAC
                                              Participant

                                                If I read your post correctly that after surgery and the nodes conatined melanoma, the doctor didn't offer any further treatment. If this is so, you need another oncologist!! Go to your appt, write a list of questions to ask, write down the answers he gives you and then come back here to post again. There are lots of folks here with more experience with meanoma than your doc will have in his life time. Come back and get advice, support, information and education about your situation and melanoma. Best wishes.

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                                                lhaley
                                                Participant

                                                  I'm sorry you've had to join us.  When they removed the SNB and found that it contained melanoma did they remove any more?  At that point your options were limited but some choices should have been ; interfuron (much discussed and no one agrees), radiation, further surgery, or sometimes a trial.   The thing about melanoma is if there is no evidence of disease (NED) than most trials will not take you. They want something they can watch to see if and prove if the drug works.  Also, many institutions will not help you find a trial if they don't have it at their hospital. Very frustrating and you often have to do all of the research yourself.  That's what makes this board so great!! We hear what others are doing and many will help you find what you need.

                                                  My Doctors usually go for surgery with me.  After my first recurrance I was then put on a year of gmcsf on a trial. At that time it was the only thing out there if NED. Since then the trial has been completed and did not prove that it improved survival.  My arm was disclosed and I did get the drug and I've since that date had 4 recurrances and they are now watching other spots. 

                                                  Unfortunately lots of watch and wait in this disease.  Please let us know where you live and maybe we can get you to a Doctor that has more knowledge.  A melanoma specialist will definitely inspire more confidence in your future treatment!!

                                                  Please fill out your profile and then others can read it without you having to type it in each time you ask a question.

                                                  Linda

                                                  Stage IV since 06 currently 2 stable lung nodules

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                                                  lhaley
                                                  Participant

                                                    I'm sorry you've had to join us.  When they removed the SNB and found that it contained melanoma did they remove any more?  At that point your options were limited but some choices should have been ; interfuron (much discussed and no one agrees), radiation, further surgery, or sometimes a trial.   The thing about melanoma is if there is no evidence of disease (NED) than most trials will not take you. They want something they can watch to see if and prove if the drug works.  Also, many institutions will not help you find a trial if they don't have it at their hospital. Very frustrating and you often have to do all of the research yourself.  That's what makes this board so great!! We hear what others are doing and many will help you find what you need.

                                                    My Doctors usually go for surgery with me.  After my first recurrance I was then put on a year of gmcsf on a trial. At that time it was the only thing out there if NED. Since then the trial has been completed and did not prove that it improved survival.  My arm was disclosed and I did get the drug and I've since that date had 4 recurrances and they are now watching other spots. 

                                                    Unfortunately lots of watch and wait in this disease.  Please let us know where you live and maybe we can get you to a Doctor that has more knowledge.  A melanoma specialist will definitely inspire more confidence in your future treatment!!

                                                    Please fill out your profile and then others can read it without you having to type it in each time you ask a question.

                                                    Linda

                                                    Stage IV since 06 currently 2 stable lung nodules

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