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.

WLE and SNB update

Forums General Melanoma Community WLE and SNB update

  • Post
    makedoandmend
    Participant

    For those that don't know I was diagnosed with an ulcerated malignant melanoma with a breslow depth of 9mm in early sept. It was nodular melanoma and there was a satellite lesion below/to the side.  The primary was removed during biopsy by the derm. Went to oncologist who schedule wle and snb.  Pet Scan came back with 4 small nodules on my lung. Those didn't light up but we are thinking they are from a nasty bout of pnemonia I had a year and a half ago.  The onc said it is more likely scar tissue than mel.  Nothing lit up anywhere, including the groin.

    For those that don't know I was diagnosed with an ulcerated malignant melanoma with a breslow depth of 9mm in early sept. It was nodular melanoma and there was a satellite lesion below/to the side.  The primary was removed during biopsy by the derm. Went to oncologist who schedule wle and snb.  Pet Scan came back with 4 small nodules on my lung. Those didn't light up but we are thinking they are from a nasty bout of pnemonia I had a year and a half ago.  The onc said it is more likely scar tissue than mel.  Nothing lit up anywhere, including the groin. I was really psyched about that because I thought for sure it travedled to the groin.    WLE excision went well, margins are clear. Just have a chunk of my calf missing, no big deal.  Skin graph taken from my other thigh so far so good.  They did a Sentinal Node Biopsy on my right groin.  Took ten nodes.  1 out of 10 were positive there was a mitotic rate of 4/mm2.  Not really sure what that means.  I now am scheduling another surgery on the groin and they are going to remove all of the remaining nodes.  So at this point I believe that I am stage IIIC but not sure.  My concern is that since the groin didn't light up on the PET, what else is there that didn't light up.  My surgeion mentioned Lymphedema and putting some drains in the groin.  I had one oncologist offer interferron or an adjuvant ipi trial 50/50 placebo.  I had a second opinion set up for Oct 21st  at sloan but have to push that back until after the surg.  I was just wondering if anyone can give me some insight on where I am and where I need to be.  I guess maybe it just depends on how many nodes come back positive after the full dissection.  I just feel like I am not being agressive enough.   I have been reading a lot about boosting the immune system and I am pretty excited about this since I would like  to give my immune system the best shot in this fight.  So besides exercising which I know is key are there any specific immune system diets or immune system supplement/vitamin regimens that people are doing?  Any imput on what I should be eating/taking would be appreciated.  Thakns to anyone who posts here. I love this board. I feel like its such a great weapon to have in this fight. 

     

    pat on li

    Loading spinner
Viewing 7 reply threads
  • Replies
      bill58
      Participant

      Pat,

      Good luck with your next round of surgery.

      You can review my profile.  It sounds similar to yours, except they never got clear margins.

      After WLE and inquininal lymphadectamy, they kept drains in the lymph area for a few weeks as long as they were draining a certain amount each day.  The second surgery was looking for the main lymph node in the area and they took out 20 or so nodes, but since the main one was negative, they did not remove all of the nodes.  I was healing up nicely after the surgery at the end of May.  Took the month of June off on short term disability.  My leg was bandages in a soft cast for a while to let the skin graft heal. Progressed from Wheelchair, to crutches to cane.  kept walking each day, as much as possible.  By mid July i was feeling pretty good and could walk for 2 miles and bike for 7 miles, although not on the same day.  Things were healing nicely until I started radiatoin treatment.  That really tore up the skin graft and it still has not fully healed.  My pain was not too bad after surgery, but hey, when you have a morphine drip hooked up to a button, it is easy to press that sucker to avoid any pain.  The pain got worse as the radiation progressed.

      I still have lymphadema in my leg and have a compression stocking on the lower calf and a size G tubigrip on the upper thigh to aid in compression as well as keep the wound dressing in place.  My tumor was just above my knee, but the total skin graft area was something like 10cm x 21 cm, which is quite large in my opinion.  Don't know how long I will have lymphadema.

      As far as nutrition to boost your immune system, you should be able to find other postings on this board.  I have not pursued that option as vigorously as I should and my exercise level has dropped to almost nothing until my leg has healed and I dont walk with a limp. 

      You should check out various clinical trials in your area or nationwide if you dont mind travelling.

      http://www.clinicaltrials.gov/ct2/search

      You will probably want to make sure they test your tumor for the BRAF mutation to see if you are eligible for those trials.  Also should get your blood tested for HLA-A2 to see if you qualify for other trials.

      I looked at the IPI 50/50 trial but decided I did not want the chance to get the placebo.  From what I understand, if you are in the Ipi 50/50 trial and get the placebo, you are prevented from getting compassionate use Ipi after that.  Something to discuss with your oncologist and think about.  They cant put you in the Ipi compassionate use after your surgery until you have some type of reoccurrence.  Lets hope that does not happen.  Most of the clinical trials seem to be geared towards individuals with active disease.  After my surgery, I did not have any active disease and that was one reason I tried the radiation to my leg to mop up any floating mel cells.  I guess that was not of much use since they did a scan a few weeks after radiation ended and found mets in my spine and subq tumors on various spots of my body, including my leg that had radiation.

      I hope this information was useful.  if you need any more information, feel free contact me or reply to this posting.

      Bill

      Loading spinner
      bill58
      Participant

      Pat,

      Good luck with your next round of surgery.

      You can review my profile.  It sounds similar to yours, except they never got clear margins.

      After WLE and inquininal lymphadectamy, they kept drains in the lymph area for a few weeks as long as they were draining a certain amount each day.  The second surgery was looking for the main lymph node in the area and they took out 20 or so nodes, but since the main one was negative, they did not remove all of the nodes.  I was healing up nicely after the surgery at the end of May.  Took the month of June off on short term disability.  My leg was bandages in a soft cast for a while to let the skin graft heal. Progressed from Wheelchair, to crutches to cane.  kept walking each day, as much as possible.  By mid July i was feeling pretty good and could walk for 2 miles and bike for 7 miles, although not on the same day.  Things were healing nicely until I started radiatoin treatment.  That really tore up the skin graft and it still has not fully healed.  My pain was not too bad after surgery, but hey, when you have a morphine drip hooked up to a button, it is easy to press that sucker to avoid any pain.  The pain got worse as the radiation progressed.

      I still have lymphadema in my leg and have a compression stocking on the lower calf and a size G tubigrip on the upper thigh to aid in compression as well as keep the wound dressing in place.  My tumor was just above my knee, but the total skin graft area was something like 10cm x 21 cm, which is quite large in my opinion.  Don't know how long I will have lymphadema.

      As far as nutrition to boost your immune system, you should be able to find other postings on this board.  I have not pursued that option as vigorously as I should and my exercise level has dropped to almost nothing until my leg has healed and I dont walk with a limp. 

      You should check out various clinical trials in your area or nationwide if you dont mind travelling.

      http://www.clinicaltrials.gov/ct2/search

      You will probably want to make sure they test your tumor for the BRAF mutation to see if you are eligible for those trials.  Also should get your blood tested for HLA-A2 to see if you qualify for other trials.

      I looked at the IPI 50/50 trial but decided I did not want the chance to get the placebo.  From what I understand, if you are in the Ipi 50/50 trial and get the placebo, you are prevented from getting compassionate use Ipi after that.  Something to discuss with your oncologist and think about.  They cant put you in the Ipi compassionate use after your surgery until you have some type of reoccurrence.  Lets hope that does not happen.  Most of the clinical trials seem to be geared towards individuals with active disease.  After my surgery, I did not have any active disease and that was one reason I tried the radiation to my leg to mop up any floating mel cells.  I guess that was not of much use since they did a scan a few weeks after radiation ended and found mets in my spine and subq tumors on various spots of my body, including my leg that had radiation.

      I hope this information was useful.  if you need any more information, feel free contact me or reply to this posting.

      Bill

      Loading spinner
      dian in spokane
      Participant

      Good to hear your update. It looks like Bill has covered things pretty well so there's not much to add.

      I've not had to deal with a total lymph node dissection, but I do know from my years here that those who do the best, have the least problems with lymphadema and other issues, are those that keep those drains in for a long time..as long as they are giving any output at all.

      Treatment choice is a struggle, but it sounds like you are getting all the facts, and you'll make the right choice.

      As far as supplements, I'd reccommend Turmeric, and Vitamin D3.

      There's a book out there called the PH Diet that you might want to look into as well, if you have the kind of personality that can stand an complete change in diet (I'm don't! ) You can find out a lot about it on the web too.

      I'm glad to hear that your PET results were good, and that you are not dealing with organ involvement.

      Good luck with your recovery from these surgeries, and making your next decisions.

       

      dian in spokane

      Loading spinner
      dian in spokane
      Participant

      Good to hear your update. It looks like Bill has covered things pretty well so there's not much to add.

      I've not had to deal with a total lymph node dissection, but I do know from my years here that those who do the best, have the least problems with lymphadema and other issues, are those that keep those drains in for a long time..as long as they are giving any output at all.

      Treatment choice is a struggle, but it sounds like you are getting all the facts, and you'll make the right choice.

      As far as supplements, I'd reccommend Turmeric, and Vitamin D3.

      There's a book out there called the PH Diet that you might want to look into as well, if you have the kind of personality that can stand an complete change in diet (I'm don't! ) You can find out a lot about it on the web too.

      I'm glad to hear that your PET results were good, and that you are not dealing with organ involvement.

      Good luck with your recovery from these surgeries, and making your next decisions.

       

      dian in spokane

      Loading spinner
        bill58
        Participant

        Just don't leave the drains in too long.  I forget how long mine were in, but the took one out and waited a week to take the other one out.  That was enough time for parts of my body to wrap around the drain tube.  When the doctor pulled the tube out it was quite an adventure.  lets just say I am glad I took my vicodin before that doctor visit.

        Always keep some pain meds on hand.  You never know when you are going to need them, but anytime they pull stuff out of your body or remove staples that they say should not be a big deal, take a pill before those appointments.

        Bill

        Loading spinner
        bill58
        Participant

        Just don't leave the drains in too long.  I forget how long mine were in, but the took one out and waited a week to take the other one out.  That was enough time for parts of my body to wrap around the drain tube.  When the doctor pulled the tube out it was quite an adventure.  lets just say I am glad I took my vicodin before that doctor visit.

        Always keep some pain meds on hand.  You never know when you are going to need them, but anytime they pull stuff out of your body or remove staples that they say should not be a big deal, take a pill before those appointments.

        Bill

        Loading spinner
        makedoandmend
        Participant

        wow thanks for the great replies..I feel like if I hadn't found this board that I would be so far behind..I'll bet if we did a study the mpip board does more for the 5 year survival than most cancer drugs.. I didn't even know radiation was an option for stage III..I had know idea about these drains either…  ITs weird, i just feel like there isn't a definied path a stage iii person can choose. I mean I know that is a good problem to have…and I can do the ipi adjuvant or maybe just wait for it to get approved…  I'm wondering if I should get tested for BRAF..If I am positive for BRAF I don't think there are any options for me at stage III…   Lymphedema and drains don't sound fun but it doesn't sound too bad either.  Bill I'd like to email you a few questions if thats cool..

        Loading spinner
        makedoandmend
        Participant

        wow thanks for the great replies..I feel like if I hadn't found this board that I would be so far behind..I'll bet if we did a study the mpip board does more for the 5 year survival than most cancer drugs.. I didn't even know radiation was an option for stage III..I had know idea about these drains either…  ITs weird, i just feel like there isn't a definied path a stage iii person can choose. I mean I know that is a good problem to have…and I can do the ipi adjuvant or maybe just wait for it to get approved…  I'm wondering if I should get tested for BRAF..If I am positive for BRAF I don't think there are any options for me at stage III…   Lymphedema and drains don't sound fun but it doesn't sound too bad either.  Bill I'd like to email you a few questions if thats cool..

        Loading spinner
        bill58
        Participant

        Sure,

        Feel free to email me with your questions.  I dont know if the email addresses show up in the profile.

        Use [email protected].

        Bill

        Loading spinner
        bill58
        Participant

        Sure,

        Feel free to email me with your questions.  I dont know if the email addresses show up in the profile.

        Use [email protected].

        Bill

        Loading spinner
        LynnLuc
        Participant
        If there ever was a promising trial this would probably be it…I don't fit the criteria because I am NED    but if I was just diagnosed I would seriously get into this trial…I guess I wasn't the only one thinking the combination would be one made in heaven—MDX 1106 and MDX 010!!
        Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma

         

         

        Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma
        This study is currently recruiting participants.
        Verified by Bristol-Myers Squibb, August 2010

         

         

        Locations

         

        United States, California
        Local Institution Not yet recruiting
        Los Angeles, California, United States, 90025
        Contact: Site 002            
        United States, Connecticut
        Yale University School Of Medicine Recruiting
        New Haven, Connecticut, United States, 06520
        Contact: Mario Sznol, Site 001            
        United States, New York
        Memorial Sloan Kettering Cancer Center Recruiting
        New York, New York, United States, 10021
        Contact: Jedd D. Wolchok, Site 003     646-888-2395      
        Loading spinner
        LynnLuc
        Participant
        If there ever was a promising trial this would probably be it…I don't fit the criteria because I am NED    but if I was just diagnosed I would seriously get into this trial…I guess I wasn't the only one thinking the combination would be one made in heaven—MDX 1106 and MDX 010!!
        Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma

         

         

        Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma
        This study is currently recruiting participants.
        Verified by Bristol-Myers Squibb, August 2010

         

         

        Locations

         

        United States, California
        Local Institution Not yet recruiting
        Los Angeles, California, United States, 90025
        Contact: Site 002            
        United States, Connecticut
        Yale University School Of Medicine Recruiting
        New Haven, Connecticut, United States, 06520
        Contact: Mario Sznol, Site 001            
        United States, New York
        Memorial Sloan Kettering Cancer Center Recruiting
        New York, New York, United States, 10021
        Contact: Jedd D. Wolchok, Site 003     646-888-2395      
        Loading spinner
        lhaley
        Participant

        I just talked to my surgeon the other day about ippi – I'm stage IV and NED after surgery a week ago.  He told me that when it gets FDA approved it will be only for those with active disease.  I don't know how accurate that info is but that's what I was told. 

        My Dr. was very willing to have me tested for B-Raf for future options (I've had many recurrances, I hope you don't, not everyone does!!).

        Good luck with your decisions on what to do,

        Linda

        Stage IV for 4.5 years. Currently a little more than 1 week NED!! 

        Loading spinner
        lhaley
        Participant

        I just talked to my surgeon the other day about ippi – I'm stage IV and NED after surgery a week ago.  He told me that when it gets FDA approved it will be only for those with active disease.  I don't know how accurate that info is but that's what I was told. 

        My Dr. was very willing to have me tested for B-Raf for future options (I've had many recurrances, I hope you don't, not everyone does!!).

        Good luck with your decisions on what to do,

        Linda

        Stage IV for 4.5 years. Currently a little more than 1 week NED!! 

        Loading spinner
      ChristineL
      Participant

      Hi Pat,

      I too am in a similar situation, recovering from groin lymphadenectomy as we speak.  To answer your PET scan question, I asked my doc that question, and she said that a PET only can detect tumors that are at least 1 cm.  In my opinion, that's pretty large, and therefore smaller tumors/nodes may go undetected. 

      Hope this helps,

      ChristineL

      Loading spinner
      ChristineL
      Participant

      Hi Pat,

      I too am in a similar situation, recovering from groin lymphadenectomy as we speak.  To answer your PET scan question, I asked my doc that question, and she said that a PET only can detect tumors that are at least 1 cm.  In my opinion, that's pretty large, and therefore smaller tumors/nodes may go undetected. 

      Hope this helps,

      ChristineL

      Loading spinner
      MonicaD
      Participant

      Hi Pat,

      I'm fairly new here so I don't know all the abbreviations/terms for everything,so please be patient with me. :)  I'll just try to share what I've gone through so far and hope you find it helpful. 

      My original biopsy site/mole that came back as melanoma was on my left leg just below my knee.  After the initial biopsy came back as melanoma, I had a rather large bit of tissue around it removed to get clear margins and had a sentinal node biopsy.  My sentinel node came back as positive so just last Monday (18th) I had the rest of my inguinal nodes dissected on that side.  I'm still very bruised and very much in the active healing stage.  Today I had my staples removed from my incision and right now the plan is to remove my drain on Thurs.  They originally planned to remove my drain yesterday but I requested it be left in longer because it's been very helpful in keeping my swelling in check.  The doc agreed and will re-evaluate on Thurs.  I plan on asking that it be kept in as long as possible.  So far having it and just keeping my leg up when I'm sitting/lying down has been very helpful for me.  I'm really worried about the prospect of lymphedema so am trying to do everything I can early on to hopefully minimize it!

      My stage hasn't been determined yet but from what I know about the things removed from me so far, I think at best I'll be Stage 3.  I see the surgeon next week to get results from this most recent surgery and then will go from there.  I haven't seen an Oncologist yet, but should be soon and expect to begin on Interferon.  I understand what you mean when you say you're not sure you've been aggressive enough…I feel like this process is taking forever!!  Besides what the medical specialists are doing, my biggest focus has been on nutrition and boosting my immune system as best I can as naturally as I can.  Personally, I take Vitamin D3, Vitamin E, and a B complex vitamin as well as making sure I get enough fiber and I take a fish oil supplement.  I'm not a doctor so I won't tell you to take these things, but it's what I've done to work towards my goal of keeping my body overall as healthy as I can.  I also eat a lot of organic fruits & vegetables and whole grains as well as fish & chicken and stay away from processed food as much as I possibly can.  I feel very strongly about using nutrition as a tool for healing and right now I'm reading a book on a macrobiotic diet which I'm finding interesting.  I really miss exercise right now but hope to be able to get back to some sort of exercise soon – even if just stationary bike or walking.  I was a very active person before melanoma and I plan to be one after!  The only other immune boosting things I try to do are get good quality sleep and try not to stress too much…easier said than done as I'm sure you understand, but stress inhibits your immune system so I try to avoid it as much as possible.  I also love this site for info but try not to visit it too much because sometimes I find the information overwhelming and then I have a hard time sleeping…  I'd probably understand all the abbreviations more if I spent more time here though..lol..

      Anyway, that ended up longer than I meant… I hope you find something in there helpful!

      Take Care,

      Monica :)  BBes bbbbbfffedew

      Loading spinner
        makedoandmend
        Participant

        thank you so much for your reply. Sounds like were in a very similar situation. You sound like you are handling this so well!  I'm having the nodes all removed on the 12th of November.  Not looking foward to this drain i'm hearing about.  Thanks for letting me know what you do to boost your immune system.  Boosting ones own immune system is the only course of action I don't have doubts about.  I am tryiing to get opinions from anyone I can who was or is at stage III.  I think I am stage IIIC and it seems like there are a few different options but nothing that strikes me as the right way to go.  I could do high dose interferron but is it worth it?  There is the adjuvant IPI trial but  I don't think there is compassionate use for a stage III trial so what about the chances of getting placebo?  Of course we are all advised to get tested for BRAF, but are there any BRAF trials at stage III?  IL2 or biochemo does help some but is that being overagressive at stage III? And then theres the old reliable "watch and wait" which does seem to make sense but then again PET scans aren't perfect and can't detect mel under 1cm (from what I hear, not sure if thats accurate).  And wouldn't it be easier to start attacking at stage III rather than waiting for stage IV?  Hopefully the answer will come to me.

        pat on li

        Loading spinner
        MonicaD
        Participant

        I guess I'm handing it well at this point but in the beginning I certainly wasn't.  Who does?  I just came to the point where I accepted that there were only certain parts of this journey I could have an effect on so that's where I place my focus.  The rest, while I might make some decisions about treatment, etc., is really out of my hands.  When I was first diagnosed and came to this board and asked if people survive melanoma, one person responded with something I needed to hear.  They reminded me that life is terminal.  They are sooo right!  At some point I will not be here and nobody guaranteed I would be here until I was a little old lady – so it's up to me how I spend that time.  From then on, I just decided to have the most positive attitude I could and go with it.  I still try to crack jokes, smile, eat well, and be as positive as I can.  Does cancer suck?  For sure!  Would I love not to have it?  For sure!  but I do have it so the choice of how to deal with that reality is up to me.  I choose not to waste my time wishing I didn't have it because I do.  My plan is just to make the most of each day I'm given, it's really all I can do and I truly believe overall it's one of the most valuable things I can do for myself.

        The drain you hear about isn't so bad.  My surgeon has decided to leave mine in now until Monday (Nov 1st) at least (that'll be 2 weeks since surgery).  While it's annoying to have this thing hanging out of my leg, and therefore a limited amount of pants I can wear (I find shorts easier), I have found my drain to be very helpful in relieving the pressure of fluid in my leg…especially once I realized how to "milk it" and keep it draining. 

        Good luck with everything.

        Monica 

         

        Loading spinner
        MonicaD
        Participant

        I guess I'm handing it well at this point but in the beginning I certainly wasn't.  Who does?  I just came to the point where I accepted that there were only certain parts of this journey I could have an effect on so that's where I place my focus.  The rest, while I might make some decisions about treatment, etc., is really out of my hands.  When I was first diagnosed and came to this board and asked if people survive melanoma, one person responded with something I needed to hear.  They reminded me that life is terminal.  They are sooo right!  At some point I will not be here and nobody guaranteed I would be here until I was a little old lady – so it's up to me how I spend that time.  From then on, I just decided to have the most positive attitude I could and go with it.  I still try to crack jokes, smile, eat well, and be as positive as I can.  Does cancer suck?  For sure!  Would I love not to have it?  For sure!  but I do have it so the choice of how to deal with that reality is up to me.  I choose not to waste my time wishing I didn't have it because I do.  My plan is just to make the most of each day I'm given, it's really all I can do and I truly believe overall it's one of the most valuable things I can do for myself.

        The drain you hear about isn't so bad.  My surgeon has decided to leave mine in now until Monday (Nov 1st) at least (that'll be 2 weeks since surgery).  While it's annoying to have this thing hanging out of my leg, and therefore a limited amount of pants I can wear (I find shorts easier), I have found my drain to be very helpful in relieving the pressure of fluid in my leg…especially once I realized how to "milk it" and keep it draining. 

        Good luck with everything.

        Monica 

         

        Loading spinner
        ChristineL
        Participant

        Hi Pat,

        As far as I know, there's only one trial for  BRAF drugs for Stage III.

        10.

         

        Phase: Phase III
        Type: Treatment
        Status: Active
        Age: 18 and over
        Sponsor: Pharmaceutical / Industry
        Protocol IDs: NO25026, 2009-012293-12, NCT01006980

        I spent hours looking at clinical trials for stage III, and most are for unresectable melanoma.  However, ipi is an option in one trial like your oncologist mentioned, although yes, there's a 50-50 chance of getting placebo.  

        I'm IIIb, and decided, after much thought, to not do Interferon, but that's a very personal decision.  I think most people do the Interferon as pretty much Standard of Care, however.  I agree that there's really nothing that seems like the "right" way to go, but it comes down to this:  after you make your decision, whatever it is, and whatever transpires in the future, you need to be able to look yourself in the mirror and have no regrets.  Whatever it is that will give you that comfort, I'd suggest doing it. 

        I too am all for immune boosting, and have been taking lots of Vit. C, D, fish oil, garlic oil, mushroom extract, lots of organic veggies (a dark green salad every night) and am considering Resveratrol, but still on the fence about that one.

        Good luck with your decision-making.  Whatever decision you make will be the right one for you.

        Keep in touch,

        ChristineL

        Loading spinner
        ChristineL
        Participant

        Hi Pat,

        As far as I know, there's only one trial for  BRAF drugs for Stage III.

        10.

         

        Phase: Phase III
        Type: Treatment
        Status: Active
        Age: 18 and over
        Sponsor: Pharmaceutical / Industry
        Protocol IDs: NO25026, 2009-012293-12, NCT01006980

        I spent hours looking at clinical trials for stage III, and most are for unresectable melanoma.  However, ipi is an option in one trial like your oncologist mentioned, although yes, there's a 50-50 chance of getting placebo.  

        I'm IIIb, and decided, after much thought, to not do Interferon, but that's a very personal decision.  I think most people do the Interferon as pretty much Standard of Care, however.  I agree that there's really nothing that seems like the "right" way to go, but it comes down to this:  after you make your decision, whatever it is, and whatever transpires in the future, you need to be able to look yourself in the mirror and have no regrets.  Whatever it is that will give you that comfort, I'd suggest doing it. 

        I too am all for immune boosting, and have been taking lots of Vit. C, D, fish oil, garlic oil, mushroom extract, lots of organic veggies (a dark green salad every night) and am considering Resveratrol, but still on the fence about that one.

        Good luck with your decision-making.  Whatever decision you make will be the right one for you.

        Keep in touch,

        ChristineL

        Loading spinner
        makedoandmend
        Participant

        thank you so much for your reply. Sounds like were in a very similar situation. You sound like you are handling this so well!  I'm having the nodes all removed on the 12th of November.  Not looking foward to this drain i'm hearing about.  Thanks for letting me know what you do to boost your immune system.  Boosting ones own immune system is the only course of action I don't have doubts about.  I am tryiing to get opinions from anyone I can who was or is at stage III.  I think I am stage IIIC and it seems like there are a few different options but nothing that strikes me as the right way to go.  I could do high dose interferron but is it worth it?  There is the adjuvant IPI trial but  I don't think there is compassionate use for a stage III trial so what about the chances of getting placebo?  Of course we are all advised to get tested for BRAF, but are there any BRAF trials at stage III?  IL2 or biochemo does help some but is that being overagressive at stage III? And then theres the old reliable "watch and wait" which does seem to make sense but then again PET scans aren't perfect and can't detect mel under 1cm (from what I hear, not sure if thats accurate).  And wouldn't it be easier to start attacking at stage III rather than waiting for stage IV?  Hopefully the answer will come to me.

        pat on li

        Loading spinner
      MonicaD
      Participant

      Hi Pat,

      I'm fairly new here so I don't know all the abbreviations/terms for everything,so please be patient with me. :)  I'll just try to share what I've gone through so far and hope you find it helpful. 

      My original biopsy site/mole that came back as melanoma was on my left leg just below my knee.  After the initial biopsy came back as melanoma, I had a rather large bit of tissue around it removed to get clear margins and had a sentinal node biopsy.  My sentinel node came back as positive so just last Monday (18th) I had the rest of my inguinal nodes dissected on that side.  I'm still very bruised and very much in the active healing stage.  Today I had my staples removed from my incision and right now the plan is to remove my drain on Thurs.  They originally planned to remove my drain yesterday but I requested it be left in longer because it's been very helpful in keeping my swelling in check.  The doc agreed and will re-evaluate on Thurs.  I plan on asking that it be kept in as long as possible.  So far having it and just keeping my leg up when I'm sitting/lying down has been very helpful for me.  I'm really worried about the prospect of lymphedema so am trying to do everything I can early on to hopefully minimize it!

      My stage hasn't been determined yet but from what I know about the things removed from me so far, I think at best I'll be Stage 3.  I see the surgeon next week to get results from this most recent surgery and then will go from there.  I haven't seen an Oncologist yet, but should be soon and expect to begin on Interferon.  I understand what you mean when you say you're not sure you've been aggressive enough…I feel like this process is taking forever!!  Besides what the medical specialists are doing, my biggest focus has been on nutrition and boosting my immune system as best I can as naturally as I can.  Personally, I take Vitamin D3, Vitamin E, and a B complex vitamin as well as making sure I get enough fiber and I take a fish oil supplement.  I'm not a doctor so I won't tell you to take these things, but it's what I've done to work towards my goal of keeping my body overall as healthy as I can.  I also eat a lot of organic fruits & vegetables and whole grains as well as fish & chicken and stay away from processed food as much as I possibly can.  I feel very strongly about using nutrition as a tool for healing and right now I'm reading a book on a macrobiotic diet which I'm finding interesting.  I really miss exercise right now but hope to be able to get back to some sort of exercise soon – even if just stationary bike or walking.  I was a very active person before melanoma and I plan to be one after!  The only other immune boosting things I try to do are get good quality sleep and try not to stress too much…easier said than done as I'm sure you understand, but stress inhibits your immune system so I try to avoid it as much as possible.  I also love this site for info but try not to visit it too much because sometimes I find the information overwhelming and then I have a hard time sleeping…  I'd probably understand all the abbreviations more if I spent more time here though..lol..

      Anyway, that ended up longer than I meant… I hope you find something in there helpful!

      Take Care,

      Monica :)  BBes bbbbbfffedew

      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.