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any one knows of NED from watch and wait

Forums General Melanoma Community any one knows of NED from watch and wait

  • Post
    bball
    Participant

      Most discussions I have seen or to do 30 day interferon vs. one year. Two onc have reccomended to me to watch and wait instead of interferon.

      I am 2a but it was 3.4mm ,nodular,and high mitosis. I also am 4 months from diagnosis and still not sure I am doing the best for me. Other than the mel I am very healthy. Thanks for any inpiut. Also has anyone done vit C IV?

      Most discussions I have seen or to do 30 day interferon vs. one year. Two onc have reccomended to me to watch and wait instead of interferon.

      I am 2a but it was 3.4mm ,nodular,and high mitosis. I also am 4 months from diagnosis and still not sure I am doing the best for me. Other than the mel I am very healthy. Thanks for any inpiut. Also has anyone done vit C IV?

    Viewing 17 reply threads
    • Replies
        washoegal
        Participant

          I am 3a, and doing wait and watch.  I did not feel that interferon was a good option for me at the time it was all that was an option.  That was almost a year ago.  I am hesitant to say I am NED in that short of a time, let's just say, so far so good!

          washoegal
          Participant

            I am 3a, and doing wait and watch.  I did not feel that interferon was a good option for me at the time it was all that was an option.  That was almost a year ago.  I am hesitant to say I am NED in that short of a time, let's just say, so far so good!

            Carver
            Participant

              I was diagnosed in February 2005 with a 6.8 mm nodular primary and I had an addition 2.8 mm of dermal residual melanoma removed during the wide excision. I also had one positive lymph node. I did the groin dissection since my sentinel node was positive. I have had no other treatment. I have had some scares but so far so good with no new melanoma. I have had a lot of scans and see an oncologist and dermatologist. Best of luck, Carver

              Carver
              Participant

                I was diagnosed in February 2005 with a 6.8 mm nodular primary and I had an addition 2.8 mm of dermal residual melanoma removed during the wide excision. I also had one positive lymph node. I did the groin dissection since my sentinel node was positive. I have had no other treatment. I have had some scares but so far so good with no new melanoma. I have had a lot of scans and see an oncologist and dermatologist. Best of luck, Carver

                EmilyandMike
                Participant
                  My husband is 18 mos NED and chose not to do interferon. We just celebrated clear scans in Vegas. He his stage 3a with low mitosis and 1.3 breslow. After reading all of the research, taking his pathology into account, and talking to melanoma docs (not a regular onc) we decided against it. With stage 2a, you have even less available clinical trials then stage 3a and interferon is all they have to offer. I know some places don’t prescribe it anymore (Sloan in Ny) but i also know that some people just can’t mentally do watch and wait and that interferon has worked well for a small minority …so it is really such a personal HARD decision. I wish you the best.
                  EmilyandMike
                  Participant
                    My husband is 18 mos NED and chose not to do interferon. We just celebrated clear scans in Vegas. He his stage 3a with low mitosis and 1.3 breslow. After reading all of the research, taking his pathology into account, and talking to melanoma docs (not a regular onc) we decided against it. With stage 2a, you have even less available clinical trials then stage 3a and interferon is all they have to offer. I know some places don’t prescribe it anymore (Sloan in Ny) but i also know that some people just can’t mentally do watch and wait and that interferon has worked well for a small minority …so it is really such a personal HARD decision. I wish you the best.
                    jag
                    Participant

                      Well, in the spirit of doing the "best you can" you could always look into a vaccine trial, and maybe have your tumors tested for a BRAF mutation.  Other than that, I haven't seen too many people on this board where interferon has made any difference.  The only studies that show benefit show an increased time period for recurrance.  You could always try it and if it seems doable, you could go ahead with it.  If it were me though, I would go for the quality of life over quantity.

                      jag
                      Participant

                        Well, in the spirit of doing the "best you can" you could always look into a vaccine trial, and maybe have your tumors tested for a BRAF mutation.  Other than that, I haven't seen too many people on this board where interferon has made any difference.  The only studies that show benefit show an increased time period for recurrance.  You could always try it and if it seems doable, you could go ahead with it.  If it were me though, I would go for the quality of life over quantity.

                        Cynthia C
                        Participant

                          I am what you might call a watch and wait. 10 years NED this March. Mine was 3.1 mm with ulceration, Clarks IV, 2 positive nodes, Stage 3b. I was only offered Interferon, 1 month high dose followed by 11 months low dose. I did only 8 doses (8 days only) and could not make myself do any more. No scans were offered. I just did routine oncology visits with chest x-ray and labs. If you are being vigilent, living a healthy lifestyle, staying informed and educated and doing appropriate tests and scans as indicated don't think you are not doing anything. I don't like the term "watch and wait". Be aware of any changes to your body and check out anything unusual and go live a great life. I have never heard of IV Vitamin C but I purchased a Jack Lalane juicer and juice oranges with strawberries. This is the nectar of Gods.

                          Sending best wishes and positive healing thoughts your way, Cynthia C

                          Cynthia C
                          Participant

                            I am what you might call a watch and wait. 10 years NED this March. Mine was 3.1 mm with ulceration, Clarks IV, 2 positive nodes, Stage 3b. I was only offered Interferon, 1 month high dose followed by 11 months low dose. I did only 8 doses (8 days only) and could not make myself do any more. No scans were offered. I just did routine oncology visits with chest x-ray and labs. If you are being vigilent, living a healthy lifestyle, staying informed and educated and doing appropriate tests and scans as indicated don't think you are not doing anything. I don't like the term "watch and wait". Be aware of any changes to your body and check out anything unusual and go live a great life. I have never heard of IV Vitamin C but I purchased a Jack Lalane juicer and juice oranges with strawberries. This is the nectar of Gods.

                            Sending best wishes and positive healing thoughts your way, Cynthia C

                            bball
                            Participant

                              thanks for all the input makes me feel much more positive

                              bball

                              bball
                              Participant

                                thanks for all the input makes me feel much more positive

                                bball

                                Bonnie Lea
                                Participant

                                  Hi I was dx in 2004 with 2B 4.00 mm mitosis of 4 I guess it is the breslow? IV (not sure it has been many years)  was offered the one month high dose, and  11 month low dose, I declined.  so watch and wait, have any strange things removed for biopsy.  had a LMM removed from bottom eyelid in 2007 but not the same thing, so I suppose I am NED since 2004.  Did not had a sentinel node thing done either, as that was not available. but had careful checkkups every 3 months then six months and now finally yearly, BUT still have derm checks every six months elsewhere.

                                   

                                  eyelid stuff is different. each person is different, you do what is best for you.  No interferon was best for me, as I could not do it and still do my 'life' perhaps and all that went with 'my life'

                                   

                                  no regrets

                                    S o o z y Q
                                    Participant
                                      Hello!
                                      I would love more info regarding your eyelid melanoma. My 11 year old dauhter is having a strange fecently appearing fas growing black spot removed from her lower left lid on Wednesday. I have been desperate for info but have not found much as far as similarity to my daughters lesion. We have had 2 Derms say it is “highly suspicious” for melanoma, but because of her
                                      Young age from what I’ve read a malignancy is unlikely?? Thanks for any info.
                                      Susan
                                      S o o z y Q
                                      Participant
                                        Hello!
                                        I would love more info regarding your eyelid melanoma. My 11 year old dauhter is having a strange fecently appearing fas growing black spot removed from her lower left lid on Wednesday. I have been desperate for info but have not found much as far as similarity to my daughters lesion. We have had 2 Derms say it is “highly suspicious” for melanoma, but because of her
                                        Young age from what I’ve read a malignancy is unlikely?? Thanks for any info.
                                        Susan
                                      Bonnie Lea
                                      Participant

                                        Hi I was dx in 2004 with 2B 4.00 mm mitosis of 4 I guess it is the breslow? IV (not sure it has been many years)  was offered the one month high dose, and  11 month low dose, I declined.  so watch and wait, have any strange things removed for biopsy.  had a LMM removed from bottom eyelid in 2007 but not the same thing, so I suppose I am NED since 2004.  Did not had a sentinel node thing done either, as that was not available. but had careful checkkups every 3 months then six months and now finally yearly, BUT still have derm checks every six months elsewhere.

                                         

                                        eyelid stuff is different. each person is different, you do what is best for you.  No interferon was best for me, as I could not do it and still do my 'life' perhaps and all that went with 'my life'

                                         

                                        no regrets

                                        Bonnie Lea
                                        Participant

                                          Hi I was dx in 2004 with 2B 4.00 mm mitosis of 4 I guess it is the breslow? IV (not sure it has been many years)  was offered the one month high dose, and  11 month low dose, I declined.  so watch and wait, have any strange things removed for biopsy.  had a LMM removed from bottom eyelid in 2007 but not the same thing, so I suppose I am NED since 2004.  Did not had a sentinel node thing done either, as that was not available. but had careful checkkups every 3 months then six months and now finally yearly, BUT still have derm checks every six months elsewhere.

                                           

                                          eyelid stuff is different. each person is different, you do what is best for you.  No interferon was best for me, as I could not do it and still do my 'life' perhaps and all that went with 'my life'

                                           

                                          no regrets

                                          Bonnie Lea
                                          Participant

                                            Hi I was dx in 2004 with 2B 4.00 mm mitosis of 4 I guess it is the breslow? IV (not sure it has been many years)  was offered the one month high dose, and  11 month low dose, I declined.  so watch and wait, have any strange things removed for biopsy.  had a LMM removed from bottom eyelid in 2007 but not the same thing, so I suppose I am NED since 2004.  Did not had a sentinel node thing done either, as that was not available. but had careful checkkups every 3 months then six months and now finally yearly, BUT still have derm checks every six months elsewhere.

                                             

                                            eyelid stuff is different. each person is different, you do what is best for you.  No interferon was best for me, as I could not do it and still do my 'life' perhaps and all that went with 'my life'

                                             

                                            no regrets

                                            mom3girlsFL
                                            Participant

                                              I did high dose interferon – 4wks which turned in to 6 wks b/c my low wbc – then started the 3x week self inject.  Unfortunately I had a recurrence so the interferon did not work for me.  I am currently watch and wait since Nov of last year.  I will have a scan in April to see how things are going.

                                              It is a very personal choice to make.  For me, I felt (with 3 young children) I had to take any option I could.  "Watch and wait" is not my preference b/c I don't feel I am being proactive.  It is also mentally draining.  Whatever you decide keep informed and stay vigilant.

                                              Good luck!

                                              mom3girlsFL
                                              Participant

                                                I did high dose interferon – 4wks which turned in to 6 wks b/c my low wbc – then started the 3x week self inject.  Unfortunately I had a recurrence so the interferon did not work for me.  I am currently watch and wait since Nov of last year.  I will have a scan in April to see how things are going.

                                                It is a very personal choice to make.  For me, I felt (with 3 young children) I had to take any option I could.  "Watch and wait" is not my preference b/c I don't feel I am being proactive.  It is also mentally draining.  Whatever you decide keep informed and stay vigilant.

                                                Good luck!

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