A blog about us…and journey with Melanoma

Mike’s Melanoma Story

Mike Melanoma Surgery

Melanoma Surgery Aug 2009

In late July 2009,  Emily noticed a strange looking mole on Mike’s back.  Mike went to the dermatologist and they removed the mole.  On Aug 4, we got the news that it was melanoma and Mike was immediately sent to an oncologist for surgery to remove the margins and that is the picture you see on the left (we call it the shark bite).  The depth of a melanoma tumor is called the “Breslow Depth” and it is one of the most important prognostic factors in Melanoma.  Mike’s mole was 1.3 mm deep into the epidermis.  If you catch a melanoma before it grows past 1mm, the chances of it spreading to your internal organs are much lower.  When Mike had surgery, they also tested his lymph nodes to see if the cancer had spread there.  Unfortunately, they found microscopic melanoma cells in one of his lymph nodes.  They sent Mike for full body scans to see if he had tumors inside his body.  Thankfully nothing was found and in September, he had a second surgery to remove all of the lymph nodes under his arm.  Out of 30+ lymph nodes, no further melanoma cells were found.  So Mike has Stage IIIa Melanoma and every 6 months we endure very stressful PET scans to see if the cancer has spread to his internal organs – something that happens to 30-70% of the people with Stage 3 melanoma.

December 2010: Mike has had no complications from surgery except for numbness in his arm from nerve damage.  He is doing very well now - thanks to a great surgeon – Dr Aziz Ahmad.   He has chosen not to do a year of Interferon – this is a type of immunotherapy that boosts the immune system, but it makes you quite sick.  It is the only FDA approved adjuvant (post surgical) therapy for Stage 3 melanoma.  According to the research, it does reduce the chance of recurrence by 10%, but it doesn’t affect “overall survival”.  So Mike has chosen to torture himself at the gym every day instead…until they find better drug options for melanoma…which are coming soon.

Update Feb 2010:  Scans are all clear 6 months after diagnosis.  He has no lymphedema from surgery and has healed very well.

Update July 2010: Scans are clear one year later.  He has some numbness in his arm but he is all healed one year later.  Unfortunately with melanoma the most common time of a recurrence in 18-24 mos after diagnosis.

Feb 2011: scans were clear and we went to Vegas to celebrate!

Aug 2011: 2 years NED – scans were clear.  This was an important milestone because many people recur before 2 years.  Instead of scans every 6 months, Mike will have scans once a year.   We hate scanxiety so much, that this is good news to us – but it is also kind of scary that we will have to rely on symptoms to detect any metastasis.

April 2012 – great checkup with Mike’s doc – scans will be ordered in late July for his 3 year anniversary.

Nov 2012 – His yearly scan says Mike is still all clear of melanoma.  He has had no treatment.  Yay!

LEARN MORE ABOUT MELANOMA.  IT COULD SAVE YOUR LIFE.  http://www.melanoma.org/

Melanoma is now the most common form of cancer for young adults 15-29 years old. If caught early - when it is confined to the surface of your skin - Melanoma is curable.  The prognosis worsens as it grows deeper into your body and affects your vital organs.  Get your skin checked by a dermatologist on a regular basis.  Pay attention to changes in your moles.  Melanoma can occur anywhere on the body, including places “where the sun don’t shine” -  it usually shows up on the trunk, neck, limbs, fingers, and toes.  People with fair skin are especially at risk – but anyone can get it and it doesn’t discriminate by age.

READ THE STORIES OF MELANOMA WARRIORS  HERE

READ STORIES OF MELANOMA ANGELS HERE

89 responses

  1. Ken Beeson

    Hi Mike,

    I and Judy write to each other frequently.
    Although my cancer was not skin caner, I am a 5 years survivor of kidney cancer, so you have to hang in there. Judy was telling me about your diet and I think your really onto something with it. Just keep doing what your doing and read and learn more your cancer then what your doctor knows, and ask him questions all the time. We patients need to know more then the Dr does to make the informed decisions.
    KEEP SMILING!

    September 18, 2010 at 11:12 pm

    • Hi Ken

      Thanks for writing! I am so happy that you are out 5 years from a kidney cancer diagnosis. And I totally agree that you, you need to stay as informed as your doctor when you have cancer.

      I constantly keep up on the latest research because of this. With melanoma, clinical trials are pretty much the only way to go. The New York Times just did a great article on melanoma and clinical trials – this is nothing new to us and I hope people realize that the FDA and the drug companies have some heartbreaking and infuriating practices that we need to rethink. http://www.nytimes.com/2010/09/19/health/research/19trial.html?src=tptw

      Stay in touch! Emily

      September 20, 2010 at 5:57 pm

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  3. Kim (Anderson) Romero

    HI Emily and Mike~

    My mom (Sharon Anderson) gave me your website to check out since I also had melanoma in 2005. Thankfully it was only stage 2 and I am now almost 6 years cancer free. I just wanted you to know that I understand your anxiety and your fear around the 6 month check ups. Waitig for results is the hardest part. Do much goes through your head. And like you, after I had my mole removed I felt like my leg looked as though a shark had taken a bite out of it! I used to be very self conscious of the scar it left but now I see it as a blessing. It’s a reminder of how precious life is and how quickly it can be taken from us. We need to do our best to stay on top of things, keep checking for new moles or moles that have changed, and when in doubt…just get it removed! My doctor no longer tells me to “keep an eye” on a mole…if I have to do that then you better just get rid of it. I will keep you guys in my prayers because I know that God has the ability to heal us and keep us healthy.
    God bless you and your family. Your kids are beautiful!
    Kim

    November 26, 2010 at 3:19 am

  4. joe

    Hello Mike,
    I just came across your web pages today. Our stories are very similar, so I thought I would comment here. Like you, I have a IIIa diagnosis. Had a mole removed from my left arm this past July that tested positive. Had the SNB, and one of them had a micrometastasis. I then had all the nodes (or at least 33 of them) under my left armpit removed. None of those were positive. Like you, I also declined the interferon treatment. I have been focused on diet and supplements, although I still search for some sort of clinical trial for a vaccine. I would very much like to compare notes with you on our respective regimes. I’m hoping maybe I might learn something from you, and vice versa. Please contact me via email when you have a chance.
    Best wishes,
    Joe

    December 20, 2010 at 3:28 am

  5. LACEY

    MY BOYFRIEND HAS MELANOMA ALSO, HE FOUND OUT IN JULY 2010. HIS MOLE WAS ON HIS CHEST….YALL STORIES ARE SO MUCH ALIKE. HE IS DOING THE TREATMENT, HE DID 5DAYS A WEEK/4 WEEKS OF THE IV Interferon AND NEVER GOT SICK, HE ONLY HAD FEVER HIS FIRST DAY, HE IS NOW TAKING THE SHOTS 3 DAYS A WEEK FOR A YEAR.
    GOOD LUCK WITH EVERYTHING! ILL CHECK BACK TO YOU BLOG TO SEE HOW YOUR DOING AND LET YO UKNOW ABOUT HIM AS WELL….GOD BLESS!

    January 20, 2011 at 3:59 am

  6. Hello and may I saw God bless each and everyone of you that is battling this awful melanoma or has a loved one that battles it. The Love of my life and my reason for living passed away on Nov.27th 2007. We both believed that his melanoma came from his service to his country in Vietnam where he was part of Operation Ranch Hand with the Air Force and we all know that agent orange was not a good chemical and I will always believe that it killed my husband. We had a wonderful love filled life for 33 years and he battled his cancer and looked to be cured. But we didn’t get our happy ending. I would love to hear from other people who have lost loved ones or are fighting the fight to get better and live a good long life. Please e-mail me at Dolls207@copper.net I would love to visit with you if you would like:) Thank you for your time, Jan Have a wonderful night:)

    July 6, 2011 at 4:57 am

  7. wendy

    Hi Mike

    My name is Wendy I also have melanoma skin cancer. I found a lump in my right upper thigh it started out the size of a quarte rtwo years ago in nov 2009. By that next Feb. 2010 it was as big as a hens egg.A doctor did some test and told me and my boyfriend it needed to come out. when i went for the check up after surgey they told me it was cancer so then had to go up to the U of iowa hospital. i was so scared did not know what to think or do because all they said was cancer. my oncloigst at my first appt. said wendy do you know what kind of cancer you have i said no.He looked at me and said you have melanoma skin cancer stage three and we have to do this surgery or you will have six months to a year. I sat there and cried still thinking what do i do why me? My boyfriend we will do the surgery. I can’t thank Dr. Mo and his team for all they did. I had two drain tubes one it seemed like forever. After both were out then started cheom.that was an ingection that my boyfriend did 14 days on 14 days off. I got sick could not go to work some days it sucked. I will get another pet scan in oct. cross fingers that it is clean. I will be cancer free for a whole year that would be the best news.I was a cna at a hospital now going back to school to be a medical asst.I will be 40 in nov. There were so many days i didn’t know if i could do it but my wonderful boyfriend stood by my side along with family and friends.Some times i wish people knew what skin cancer really was and that more and more people are finding out they have it. I wish i would have found your story sooner.I wish the best for you and others that have skin cancer. all cancer is bad this one i feel like just grabbed some of us. i enjoyed shareing my story. take care everyone amen.

    September 4, 2011 at 6:11 am

  8. Hi Wendy – thanks for sharing your story. What kind of chemo did you do? Interferon? I am so glad you are doing well. Did you have a mole removed at any point before you were diagnosed with Stage 3? Sending my best to you!
    Emily

    September 6, 2011 at 5:11 pm

  9. jessica

    I just came upon this blog and found out we have similar stories. My dad found out he had a rare melanoma called blue neavis on his lower back and it was into his lymph nodes in his upper thigh. We found this out in March of 2009, in April he had surgery at UCSF performed by Dr. Leon, the part they removed in his back they referred to as the “baby boy” because of how large it was, they removed the lymph nodes in his thigh at the same time. He did the year of interferon and which was extremely hard mentally and emotionally on all of us. There are still effects from it which we knew would probably happen but still hard to see. Fast forward to now, he is NED for 2 years! he went for a visit last thurs and they think we have this thing beat! he has a PET scan in nov. They say after 3 years chances are low that it will return. Hope all is well with you and we will continue to FIGHT the BEAST!

    September 13, 2011 at 3:25 am

  10. Sarah

    Hello. I was just diagnosed 1 week ago with stage 3 melanoma. Even as I type the words, it seems so unbelievable to me. I am only 32 years old. I am a child of God, a mother, a wife, a sister, a daughter, and a first year teacher. I want to know as much information about this thing as possible. For one, why are so many people opting out from taking Interferon? I thought that taking that was a no brainer cause it kept you alive. Someone fill me in here?!!

    September 28, 2011 at 5:07 am

    • Hi Sarah – sorry to meet you under these circumstances. I know how shocking it can be and to be honest it took us a good year to wrap our minds around a cancer diagnosis. Now it is just a part of our lives and we accept that. Melanoma doesn’t discriminate and actually younger people at the prime of their lives are diagnosed quite often. I believe there is some correlation between young people and melanoma that researchers haven’t pinpointed quite yet. Interferon is an old drug that they have used for a long time with dismal results for most – in addition to it being very toxic to your body. All of the recent research says interferon DOES NOT EXTEND OVERALL SURVIVAL – but it does extend recurrence free survival by a couple of months compared to observation…google it for more info. Some hospitals wont even prescribe it any more. Depending on what stage 3 (a-c) I would look into clinical trials, In 2014, the results of the Ipilimumab adjuvant trials for Stage 3 will be released and I am hoping we will have another option for Stage 3 NED then. I think the decision is something people must make their own decision on based on whether or not they can handle “watch and wait” AND the pathology of their primary tumor – those with ulcerated primaries seems to have better results with interferon. It is a huge debate among those with Stage 3. I would post on the Melanoma Research Foundation bulletin boards in addition to the Melanoma International Foundation boards to get more opinions on Interferon. Let me know what stage 3 you are (a-c) and I can help you with clinical trial options. All my best – Emily

      September 28, 2011 at 3:54 pm

  11. Ame

    Your stories are so touching. I am 23 and was just diagnosed with type II melanoma. I had it removed yesterday and remain scared to death. The whole disease is so frightening. I feel like nobody I know can relate and I am worrie for my next scan. I feel like i’m too young to have cancer and wish I could take away all the years I layed out in the sun. Your story inspires me and I hope I will remain cancer free.

    November 1, 2011 at 6:58 pm

    • Ame – sending you all my best! I know it is hard not to be scared but try and live in the moment and not worry about the past and present – these things are out of our control! Let me know if you need any advice or someone to talk to! best, Emily

      November 1, 2011 at 8:00 pm

  12. benji

    Hi Emily and Mike,

    My name is Benji and I am 24 years old. I was diagnosed with Melanoma in October 2011. I had a mole on my leg from since I was a young kid and over the past 5 years it had seem to have grown and even protrude. It also itched. My wife and I had been discussing whether or not we wanted to dish out the $175 dermatologist visit to have him look at it. Upon going to the dermatologist, he shaved it (by the way never let them shave it, they can do what’s called a hole punch biopsy) and sent it for pathology. It came back melanoma and 2 weeks later we were in LSUS Shreveport, La meeting with Dr. Benjamin Li (surgical oncologist). We decided to have surgery to have it removed. After the surgery, we found out it was a little more than 4mm thick, or what I believe is Stage II4. My sentinel node in my groin was clear of melanoma.

    I had a skin graft 2 weeks after my surgery to cover the 3 inch round hole in my calf. I was on percocet but stopped taking it after I got bowel impaction, which landed me in the worst night of my life in the ER. It’s been 5 weeks since my surgery and I’m slowly recovering, some what going back to work here and there on my good days.

    Had my last weekly checkup with Dr. Li and he said he didn’t want to see me for 3 months, but in the meantime he wanted me to speak with an oncologist about medicine because of the size of my tumor. I have done some research on interferon and I don’t know what my decision will be if that is what they suggest I take. It seems like every time I find some hope its quickly snatched away by more drugs or more operations. Fingers crossed that I will remain melanoma free regardless of my decision. My prayers are with y’all and congrats on the 2 year mark! I can’t wait to celebrate my 2 year and my 5 year with my wife.

    I will start up a blog tonight about my experience so far. Thanks for sharing with us!

    December 3, 2011 at 2:18 am

    • Hi Benji! Thanks for writing. I am sorry you are dealing with melanoma. I wanted to ask if your tumor was ulcerated? That would make you Stage 2C versus Stage 2B. You need to study your path report closely. What does the mitotic rate say? That is very important also. I can help you read it if you email it to me.

      4mm is quite deep. Yes, shave biopsies are horrible – but they do them anyway. And pain killers can cause horrible bowel problems! But you had a really horrible time it seems – Poor thing!

      Interferon is such a horrible decision to make. Some studies say that Interferon works better when the tumor is ulcerated. It has been proven to delay but not extend overall survival – so you need to decide if it is worth it..because it does make most feel like hell for a year. Stage 2 folks have about the same amount of choices in terms of treatment as Stage 3a. And it sucks! So I would suggest if you dont do interferon, keep researching to stay on top of the latest treatments and trials – check out this link for a list of trials http://www.collabrx.com/melanoma… and of course know what a recurrence might look like, check your nodes every day, etc.

      It does get easier as time goes on, but we know how this can be so traumatizing. Try to stay happy and stress free – all of things that we used to think were so important, are really not in the scheme of things.

      Stay in touch!
      Emily

      December 3, 2011 at 7:03 pm

      • Benji

        Thanks for the reply! I have not seen my pathology report and my surgeon seemed like there is low risk for the melanoma coming back. I can’t help but dread the thought of reoccurrence and
        I’ve downplayed Melanoma to all my friends and family. Most go with the whole, “it’s just skin cancer” thinking and I’m ok with that as long as my wife and
        I remember the dangers of this terrible disease. I will call and ask for my pathology report soon. I don’t think it was ulcerated. My nodes were also clear. I haven’t been instructed to check my nodes daily, what does that mean? Where the suture is on my groin it is filled by a big pocket of fluid that is shaped like an egg. Surgeon said that it will eventually go down. My blog is mymelanomastory.blogspot.com if you care to read. Thanks!

        December 4, 2011 at 12:04 am

      • Hi Benji..sorry for the delay in replying. So the most likely place for a recurrence is in between the mole that was removed and the nearest lymph node basin. The recurrence would present as a hard lump in the skin or most likely in the lymph nodes which would also get swollen. If your groin nodes get hard or swollen, call the doc who will normally check your nodes at each check up appt. please try and get your path report. Get the mitotic rate. And unfortunately people don’t understand melanoma and the seriousness. You need to educate them and I Am glad you have a blog…I will check it out now. All my best!!

        December 9, 2011 at 4:57 pm

      • Kelly

        Hi Emily,
        I know this is an old post, but I was just diagnosed as stage 3A, and I am also 33 weeks pregnant with my 3rd child. This is traumatizing no matter what the situation, but I feel like with the pregnancy, my choices are so extremely limited right now. I am near the end of the pregnancy, however, so I can start some treatment/have all lymph nodes in that region removed soon…I would love to talk to you. You seem like you have such knowledge of this terrible disease.

        February 4, 2014 at 5:33 pm

  13. Mandi

    Hi. My husband had a mole removed off of his chest about a month ago that came back positive for melanoma. After having the wide excision surgery and lymph node removal under his arm 1 lymph node was positive out of 23. We went to see an oncologist at Vanderbilt in Nashville,Tn this week & weren’t not very excited about our options. One option is to do the interferon inj for one year and the other option is the clinical trial using the Ipilimumab drug & they tell us that there as been deaths associated with this trial. I don’t kno if his is a stage 3 a,b or c as nobody has told us this information but I am going to try and find this out today. I was writing this to ask a question. What kind of diet have u changed to if any? I have done research online about a number of ppl changing to a certain diet and u mentioned suppliments…but what kind? I have also read online about certain foods that fight off cancer cells. Have you found this to be true. Please get back with me if u can. Thanks!!!

    December 9, 2011 at 3:00 pm

    • Hi Mandi ! Sorry to hear about your hubbies diagnosis. You really need to get copies of all of the path reports. I can help you read them if you need it. Just call his docs and they can fax them to you. This will tell you how many nodes were positive and the size of the tumor in the nodes. Ulceration bresliw, and mitotic rate are the big factors in the mole’s pathology report. There aren’t many options for stage 3 after surgery. There is Ipi versus interferon and Ipi versus placebo…these are the only clinical trials. I am not a fan of interferon..but it does seem to help those with ulceration prevent recurrence. It does not improve survival. I would go for a trial if there is a location nearby. Ipi did cause deaths in clinical trials before they knew the symptoms and how to control them (colitis). The dose they give now is lower and has way fewer side effects then interferon. I wouldn’t worry about that. I can go on and on so just let me know and we can email each other instead. Take care!! Emily

      December 9, 2011 at 5:09 pm

    • Forgot to add that with one tumor positive he is stage 3a but only if his primary tumor was not ulcerated. I am assuming he had micro mets in his node (seen via a microscope) versus macro (can be felt). micrometastsis has the best survival stats in stage 3 ..and even better than late stage 2 (deep with ulceration).

      December 9, 2011 at 5:14 pm

    • One more note! Supplements we both take are Vitamin D..this is the most important one. Turmeric and garlic are two other good ones. Being healthy is good for the immune system but I honestly haven’t seen it stop melanoma.

      December 9, 2011 at 5:17 pm

  14. Mandi

    Thanks for writing me back. I just recieved an email from my husband’s Dr and was told that he is a IIIb because it was ulcerated. The lymph nodes under his arm were checked before his surgery and could not be felt. I can look at the report when i get off work and tell u everything it says. My email is mandi0280@hotmail.com. That way we can just email if that is easier. Thanks :-)…this is all so new to me. I have never even known a person to have melanoma until my husbands diagnosis.

    December 9, 2011 at 6:52 pm

  15. Hi Guys
    I was diagnosed witns stage 3A melanoma in February 2008, had micro spots melanoma in just the 1 lymph node. The melanoma was on my left ankle and spread to my groin.
    I also did just the 4 weeks of interferon as the reseach I did at the time suggested 4 weeks at high dose will work if its going to work at all. I only managed to do just 3 weeks and 1 day due to my liver counts going really high. It did make me preety sick, buy glad I did it. The main side effects I have now is memory and lymphodema, although I am still here so its minor.
    In regards to diet I believe also that anything to keep your immune system at top peak will keep you in good stead, I juice everyday, and consume a real lot of carrots along with anything else i can put in the jucer, along with vitamin d tablets.

    Anyway just wanted to say hi, and nice work on the blog.
    It does get easier over time with scans etc.

    feel free to check out my website
    http://www.sunbedban.com
    another one http://www.melanoma.org.au

    Jay

    December 19, 2011 at 10:18 am

    • Hi Jay – great to hear from you! I am actually already one of your Facebook friends and have been following you for a while. I am so impressed with your activism and what you have done to ban sunbeds/solariums. Thanks for all that you do here and in Australia. I work for a software company that was founded in Brisbane Australia so I understand the seriousness of melanoma in your country. And thanks for reading my blog – I am going to add you to the survivors page! How often do you get scans now that you are 3 years out? Take Care! Emily

      December 19, 2011 at 6:23 pm

  16. Hi Emily, Wow, thanks for following me, its a small world:)
    I now go for scans every 6 months, but see my surgeon on the other 3rd month so am getting checked every 3 months which is good.
    Take care and keep up the great work!
    Jay

    January 4, 2012 at 4:07 am

  17. Carol

    My daughter is 28 and had a angry black mole on her thigh for years. ( angry mole is what i use to describe it…. everytime i saw her i would harass her to go and get it looked at, finally she did) Well it was melanoma 1mm and I thank God she did not wait any longer! She had a wide excision at the end of Nov 2011 and struggled with her incision opening ( single mother of 2 working full time) After taking good care it is healing slowly but it is healing!!! Well last week she noticed a new mole very close to the incision site she had not seen before, she saw her dermatologist this week and he sent it off for a biopsy, we feel like this whole thing is happening again, the worry and stress and wondering. My question is does anyone know how quickly a recurrence can happen??? She chose not to have her sentinel lobe tested as her surgeon thought best to hold on just incase she had a recurrence later in life since her age. We cant find much information on recurrence… let alone melanoma……please let me know if anyone has any good website ect….
    My heart goes to all of you as i read your stories…..this is a terrible cancer.

    January 12, 2012 at 5:29 am

    • Hi Carol – I am sorry to hear about your daughter. Could you tell me what the depth of her mole was (Breslow Depth) – sometimes they dont test the sentinel node if the melanoma is thin. They take a few nodes out to see if there are any cancer cells inside them and this is a big indicator to tell if the cancer has spread. A recurrence usually will show up in between the mole and the nearest lymph node basin. The recurrence is usually black spots or a hard bump that can be mistaken for scar tissue. Did you get the results yet? She should definitely get a sentinel node biopsy if there is a recurrence. A Recurrence can happen at ANY TIME with melanoma so she needs to be diligent about checking her skin and lymph nodes (if they are swollen). I have read of people who had recurrences 10-20 years after diagnosis but usually they occur within the first 2 years. I am happy to help you understand her pathology reports if you need help. The best place to go for advice is to the Melanoma International Foundation forum and the Melanoma Research Foundation patients info page forums. Post her story and you will get lots of good advice. Emily

      January 16, 2012 at 9:10 pm

  18. Della

    I had mine come back after one year it was a very low bredthlow and the doctors were so stunned it returned in my groin ive now had the c section so huge scar from belly button down almost half way of my leg im due to start radiation in princess alexander brisbane 16 th april for four weeks as im at a high risk of it returning its a very scary time for me

    March 25, 2012 at 12:04 pm

    • Hi Della – thanks for your note – small world – I work for a company in California and we were founded in Brisbane, Australia – office are in QLD. So that is why melanoma is so scary – a low breslow is not a guarantee that it wont return. Can you get Yervoy in Australia? That combined with radiation seems to be working well for people. Take care and please let us know how it goes – Emily

      March 30, 2012 at 4:50 pm

  19. NIrvana Anderson

    Please see my youtube posting CANCER. SHOCKING PHOTOS! SHOCKING FACTS! 3 ordinary people have their melanoma’s removed, one 5 years ago with no remission or secondary cancer. Even if you think this is a scam posting, please have a look. Their stories are important.

    April 11, 2012 at 3:03 pm

  20. Kristina

    Hello,
    I wanted to thank you for this site. I am a new mother of a 4 month old and just found out today that the melanoma has spread to the sentinel lymph node. I go in for surgery next week to remove some more lymph nodes and see if the tumor has spread there. I can only say that I am terrifed. Mine was also 1.3. Any advice?

    May 4, 2012 at 1:19 am

    • I hope you will read Jay’s comments to your post – my husband Mike would say the same thing. Try and stay positive and realistic. It is so terrifying at first but it does get somewhat easier to deal with the fear. Anyway, 1.3 is somewhat small and the odds are way in your favor that it did not spread to more nodes. Did you have microscopic cells in the sentinel node? Did you have ulceration? Sounds like you are/will be stage 3a. Would love to talk to you more so feel free to emily@emandmichael.com – TAKE CARE! Emily

      May 4, 2012 at 4:39 pm

      • Kristina

        The cells were only seen under the microscope so I think thats microscopic. It wasn’t ulcerated. Initially it was staged as a t2a. I go in next week to remove about 15 or so lymph nodes so we should have the results in two weeks about whether it spread or not. I’m requesting a PET scan as well.

        May 4, 2012 at 4:57 pm

  21. Hi There,
    I’m sorry you are terrified right now. I was exactly the same after I found out that my node was positive too. I went in and had the operation and the melanoma was only in the 1 node which was a big relief!
    I wish I could say everything will be ok but I do believe the power of a positive mind, mind over matter.
    I’m now almost 4 and half years away from being free of stage 3 melanoma.
    Hope this has helped you a little bit.
    Feel free to email me anytime
    jayallen@sunbedban.com

    May 4, 2012 at 5:30 am

    • Kristina

      Hi Jay,
      Your post brought me to tears. Thank you for taking time to write back. Did you go on chemo after they found it in that one node? I go for the surgery next week to remove some more lymph nodes and then meet with an oncologist. Can you think of any questions I should ask?

      May 4, 2012 at 5:05 pm

  22. Joe

    Hello Kristina,

    You may be on the receiving end of wildly differing recommendations regarding the lymphadenectomy and interferon. The doctor’s told me that cutting out big globs of lymph nodes from my armpit would give them a better assessment of how far the melanoma had progressed, but they also cautioned that once it is in the bloodstream (as it was to have reached the sentinel node) there’s no stopping it. Encouraging, right? Anyway, I researched the pros and cons of having 30+ lymph nodes removed and decided to proceed because 1) I wanted to know if there was any further spread (and if there was, I wanted it out before it became clinically evident) and 2) I came across a couple of medical journal articles that made very strong cases for the procedure.

    Interferon is another story. I could find little to justify this heinous treatment. I think the best argument in its favor is that about 10% of those who do it might get a one or two year delay in recurrence. Big whoop. Most hospitals that are recognized for excellence in melanoma treatment don’t even offer interferon anymore. That’s how much confidence they have in it. If you feel compelled to be proactive with a drug treatment, and you’re lucky enough to live in or near a major city where there are clinical trials going on, you may be able to get in one of them. Of course, you may end up in the placebo arm of the trial, but at least you’d be monitored closely.

    As for me, I am still IIIa with no evidence of disease after nearly 2 years (my anniversary will be in August). I had an axillary lymphadenectomy, but no drug/chemo treatment. I changed my diet completely and take a variety of supplements. Regardless of your decision on interferon or clinical trials, I would suggest you start googling “Melanoma and diet.” I found plenty of great information by doing this, and I’ve incorporated much of what I’ve found into my regime.

    I get the feeling the doctors think I’m a kook who’s just wasting his money, but there is a basis for everything I take/eat and I like to feel like I’m at least doing something besides the morbidly passive “watch and wait.” Most of what I’m eating/taking my doctors seem to have never even heard of, which is astonishing to me. You’d think they might have at least heard of foods that promote anti-angiogenesis.

    You’ll hear a lot of people say that this gets easier with time. That’s true. For the first year and a half, I couldn’t go more than about 1 minute without fixating on and worrying about what was going to happen to me next. Now I can sometimes go a whole 20 minutes or so without thoughts of melanoma blackening my mind. :)

    May 16, 2012 at 3:05 am

  23. Pingback: Guest Post: Your Skin is Like an Elephant « Live In Our Skinz!

  24. Paul Bonneau

    Mike thanks so much for creating this blog. I find it much easier to read and comprehend yours and others stories than the clinical-research-speak that is quite predominant on the web. After reading a few stories I think my case is fairly typical. I had a mole removed from the bald spot on the back of my head on 6/5/12 (my friends were telling me to get it looked at and nobody would have seen it had it been elsewhere–but then again it would have been exposed to less sun), and it was a 1.3mm deep, nodular, level IV melanoma. I had the wide area excision and sentinel node biopsy performed 07/03/12 (that was a long wait for me!).Turns out I had two sentinel nodes on the right side of my neck, one just behind and the other below my right ear. One of them had a micrometastisis and the other was clean so stage IIIa. I have been offered and rejected interferon. No PET scan has been performed. I have been offered to participate in a clinical trial where they will perform a CLND. I believe I am developing lymphadema from one of the two nodes as the sutures have begun to leak a clear yellowish fluid. The sutures on my head opened and I am going to have plastic surgery on 7/18/12 to close it.

    The thing that is hard to swallow and I see the same thing from other people is the “wait and see” approach instead of being proactive. The desire to “do something about it” is big! I have read that I could try Leukine as an adjuvant treatment if my insurance company will pay for it. I have researched the various clinical trials throughout the USA and I don’t see any applicable to a IIIa that offer hope of fighting the disease. You and your wife appear to have really educated yourselves about this disease. What are your thoughts?

    Thanks in advance!

    - Paul

    July 14, 2012 at 5:07 pm

  25. Kristina

    Paul,
    You found a great resource in Mike and Emily. I was diagnosed with stage 3a in April of this year and just underwent a month of interferon. I just wanted to tell you I’m thinking of you and am glad you are reaching out. Please let me know if I can answer any questions about my experience. One thing that has really encouraged me is diet change. Emily knows more but eating organic and minimal processed foods have really helped my immune system. Be encouraged, there are so many warriors out there! :)

    July 15, 2012 at 2:41 am

    • Paul Bonneau

      Thanks for the reply Kristina, and I am sorry to hear about your diagnosis, espcially being a young mother and all (I read your other posts). Did you get the CLND done? Did they find any more positive nodes? What about the PET scan? I am surprised that a PET is not automatically performed when a positive sentinel node is discovered. I guess I am doing the same thing that countless other before me have done–trying to learn more about this rotten disease.

      July 15, 2012 at 10:24 pm

      • Kristina

        Yes, it’s pretty rotten! I had 9 more lymph nodes removed and all tested and negative. I also demanded a pet/ct prior to my lymph node dissection. It was clear. I will go again every 6 months for pet scans. The one thing that has helped is staying off the Internet and not reading statistics. My husband does research or I ask, but don’t really want to hear/see statistics or other stories. I just want to focus on hope for now. Will you get a scan soon? When is your surgery for the clnd?

        July 15, 2012 at 11:00 pm

  26. Paul Bonneau

    That’s good news! So you are still a IIIa then?

    Nobody actually scheduled a CNLD. I have seen two oncologists (since my friends said get a second opinion) and one of them is suggesting I participate in a clinical trial where one of the groups receives a CNLD. Nobody has suggested a scan either, and I am starting to believe that it’s not standard practice when IIIa is diagnosed. I am meeting my first oncologist again at the end of the week so I can find out why a scan isn’t just automatic and to find out about having one now. I must admit I am a little apprehensive about the CNLD since I have what appears to be lymphedema from only removing two of them.

    If you would like to continue our conversation but take it off the blog you can email me at thermaller@comcast.net.

    July 16, 2012 at 1:46 pm

    • Hi Paul…thanks for writing! I should let you know that I maintain this site mostly..I am the crazy melanoma obsessed one (LOL) not my husband. He is kind of how Kristina says she is – he doesn’t look at stats and stories very often. But staying educated is so important and it could save your life. Everyone is different and the longer you get into the diagnosis, the easier it is to deal with the psychological effects. From the research I have seen, getting a CLND has a slightly better prognosis. When you see your oncologist, I am sure they will discuss scans and a CLND, as this is common practice. Once you have a CLND and a scan, you would know your official stage. Please see a melanoma specialist. Not all oncologists have the knowledge with dealing with melanoma and it is not like other cancers. Sounds like you are leaking lymph fluid and lympedema is common and will go away so please dont make decision based on that. Nodular melanoma is a more aggressive type of melanoma so I think you should also be aggressive. Mike tried to get Leukine but insurance would not allow it. There are Stage 3 clinical trials you could have access to but these would require you to have a CLND and to enter the trial within 6-8 weeks of surgery. Email me if you want more info on trials after you see your onc. Take care Paul! ~ emily@emandmichael.com

      July 16, 2012 at 7:34 pm

  27. Susan Hines

    Hope you guys are doing well? I am stage IIB, and so far six years clear. My doctor just decided to release me so I don’t have to come back every year. Still 6 month checkups at the dermatologist and I have to be vigilant of my own body and if anything changes, I’m to let him know. I’ve met so many great people through Melanoma, I guess in that way it’s a blessing. But it’s taking some really good young people. And still, no one takes it seriously! STAY WELL!!! (Hi Emily!)

    July 17, 2012 at 5:19 pm

    • Hi Susan – so true…and what gets me is that people think that other types of skin cancer are the same as melanoma. You cant just scrape it off! So great to hear you are 6 years out. Mike is coming up on 3 years since his diagnosis (next month) which means he gets a yearly scan soon and I am already getting anxious. Take care!! Emily

      July 17, 2012 at 5:38 pm

  28. Susan Hines

    I’ll keep praying! I know it starts to make you very nervous coming up on scans!!!!
    We lost a very young man in Greenville, NC that never even knew he had Melanoma until he turned up with brain metastases (sp?). Diagnosed stage IV in March, married in April, and just recently passed away. I really wish they hadn’t tried radiation, I think his quality of him remaining life would have been much better. I’ll keep you guys on my prayer list!!!

    July 17, 2012 at 7:37 pm

  29. Megan H

    Em & Michael- I stumbled across your blog tonight because I think I am going to start my own blog as a way to educate others on having a healthy lifestyle & melanoma awareness!

    Our stories are a little too close not to share-I got home today from my PET/CT scan to officially mark 3 years of being melanoma free! The spot on my arm, which we now call my shark bite, was also 1.3 mm & is believed to have very microscopic involvement on 1 lymph node. I was only 21 at the time of my original diagnosis- have never been in a tanning bed, never sunbathed, & was an avid sunscreen wearer growing up! It is so encouraging to see someone else having the same story as me & getting through these bumps in the road (scanxiety ran my life this week, I’m not going to lie!)

    Best Wishes,
    Megan

    October 20, 2012 at 2:06 am

    • Hi Megan! Wow your story is indeed very similar to Mike’s. He is still procrastinating on his 3rd year scans. It is just so stressful and we have so much other stress with work right now, it is just on the back burner. Funny that you call it a shark bite too! Have you been taking Vit D? Seems like many with melanoma have low levels of Vit D. So happy that you are NED!! Please keep in touch and let us know about your blog. Best, Emily.

      October 22, 2012 at 3:26 pm

  30. Kaye Hall

    Hi. First time here. Mole was removed from my neck in May 2012. Tested positive. I was sent to Roswell Park in Buffalo NY. 1st surgery was July for sentinel node. They took 4 and 1 was positive. Back in for more surgery end of August and they took 33 more nodes from neck area. Right arm is lazy/weak but I feel good. I have been referred to a local medical oncologist to discuss interferon. I have had blood work, CT scan and brain MRI but do not know the results yet. Tomorrow is my appt with the new doctor. Nervous about making the wrong decision. Also do not know about insurance yet. I have no sick time of vaca time left for 2012 but I will qualify for 1/2 pay for 3months. Thanks for letting me vent. Kaye

    October 23, 2012 at 5:59 pm

    • Hi Kaye – I am sure your nerve damage will heal over time. If your scans are clear, you will be stage 3a since no other nodes were positive. I will be honest – I am not a big fan of Interferon. It makes you feel sick for a year – if you can take it that long – and it does NOT improve overall survival…although some studies show a slight improvement in recurrence free survival. Sadly there are no new drugs for stage 3a – they are only for late stage 3 and 4. I hope you do lots of research before taking it. Here is a recent article from an oncologist magazine. You can see none of them agree on treatment due to conflicting clinical trial information, so please understand that each doctor will have a different opinion on what to do for stage 3a. http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2bTumors&d_id=148&i=September+2012&i_id=887&a_id=21719 – Let me know if you have questions. You can email me at emily@emandmichael.com Thanks Emily

      October 23, 2012 at 6:23 pm

  31. Kaye Hall

    Hi I am back. Yesterday I saw a new doc, medical oncologist. My CT scan and MRI came back clean. Also my blood work was good. I have 3 choices….do nothing, interferon, peg interferon. Checking with insurance to see what is covered. The nurse called last nite and advised that the Peg Interferon was extremely expensive, like $3000.00 per treatment. So waiting for insurance to advise. I leave for a cruise on November 1st, so nothing will happen until I get back. Kaye

    October 25, 2012 at 1:33 pm

  32. kristin bard

    Thanks for sharing your story. It is always great to hear success stories. I had a mole removed from my back in 2006 was told it was melanoma but they got it all. Well May of 2012 I felt a lump under my armpit well- long story short I did the lymph node disection, out of 33 taken – 2 were infected. 2 large tumors of 7cm and 3cm. Very large for the cancer world. Needless to say I did do radiation – was easy for me to handle really no problems except a bad sunburn. I did decide to do Interferon, which I did the high doses for the first month, I was fine after the first three treatments (those were hard with headaches and shakes) but the last 2 weeks were horrible. I am 38 with two 15 yr old boys and a 3 yr old girl, I could not even get out of bed. I have been off the treatment and decided not to do the year long injections because I was so so so sick. I am still very weak – although it has only been 7 days since my last treatment, but I feel awful and just pray to God everyday that I feel normal again someday. I have started alot of research in food and supplements and am going to rely on God’s grace for my healing. If you have any suggestions of what you are taking – Curcumin and garlic I already have, but if you suggest any other options of this natural active choice instead of sit and wait please keep me informed. Thank you and may God continue to bless you and your family.

    Kristin

    November 5, 2012 at 4:59 pm

    • Hi Kristin – I had a reply all typed out but I guess I failed to send to you! So sorry for late reply. I think radiation is a good option – especially when combined with another drug – even Interferon which I am not a big fan of – but from other survivers I know – the combo of drugs and radiation works better than a mono-therapy. I am sure you will feel better after interferon is out of your system. Make sure you are taking vitamin D!!! Which is the most important one…also there are recent studies on the benefit of aspirin and skin cancer. Maybe worth a try if you are healthy otherwise. Keep exercising also! Keep us updated on how everything is going for you! All my best, Emily.

      November 13, 2012 at 9:40 pm

  33. Kristina

    Kristin,
    I’m so grateful to God for this website, and Emily. I’m in a similar situation. I have a 9 month old and found out that I was stage 3 in April of this year. I did interferon for a month but then decided to stop. I am doing a lot of natural things, including seeing a natural doctor, but know that God is and will continue to heal me. I’d love to email you if you prefer to chat that way. Take care!

    November 5, 2012 at 7:59 pm

  34. Bunmom

    I am crying tears of relief after finding this page. I was diagnosed with Stage 3a a month ago and they found 1 cell of melanoma in the sentinel lymph node. I’m currently researching whether or not to have the axillary node dissection and am finding nothing but stories of death from melanoma. Yours is the first one I’ve found that is positive! You can’t imagine what this has done for my emotional state. I have 2 school-aged kids and am terrified of dying and leaving them. You have given me hope!

    March 6, 2013 at 4:56 am

    • Others have given you some great advice on this post and I am so glad you feel relief! I remember the first months after my husband’s diagnosis were SO SCARY. It gets easier and less scary – as some of the people on this blog can confirm. Can I ask what your primary melanoma’s Breslow depth was? I find the depth and mitosis rate seems to be more indicative of recurrence than having micromets in one node. Mike struggled with the decision to have the surgery on his lymph nodes also, but our doc (surgeon) is very aggressive. He had surgery 3 years ago and has no lasting affects except some numbness. Unless you get on a clinical trial where they monitor you very regularly with ultrasound (instead of having surgery), I would recommend getting the CLND. Let me know what you decide and feel free to email me at emily@emandmichael.com

      March 8, 2013 at 6:25 pm

  35. Mandi

    Hello Bunmom!

    So sorry to hear about your melanoma diganosis. My husband was diagnosed in October 2011. Stage 3b..he also had 1 positive node. He has been NED ( no evidence of disease) since surgery and treatments. This blog is a good place to get info and there are several stories on here you can read of melanoma survivors. Another good site is MRF (Melanoma Research Foundation). You can join that site or just read if you would like. It is full of ppl doing treatments,survivors,familiy members of ppl diagnosed with melanoma. Beware, they are not all good stories but you can stay up to date on all melanoma treatments and information. Melanoma does not always have a good outcome but it can. There are many survivor stories that i have come across since my husband was diagnosed. If you don’t already have one, find a melanoma specialist in your area to help you with the next step in your journey. He or she will help you with any decisions you are faced with about surgery or treatment options. Feel free to email me if you would like to talk or ask me any questions about my husband personal journey and what all he has done to help prevent this ugly cancer from coming back. mandi0280@hotmail.com

    Best of luck!

    Mandi

    March 6, 2013 at 3:35 pm

  36. Kristina

    Hello Bunmom,
    I’m so sorry about your diagnosis. I was diagnosed as stage 3a last year in April, right after giving birth to my son. This year in April I will have my one year scan. I was and still am in the same place as you with feeling very scared about this bit time has made it a little easier. I’m glad you are reaching out and researching. Please feel free to contact me if you need sometime to chat with.
    raabkristina@gmail.com

    March 6, 2013 at 4:42 pm

  37. Kaye Hall

    Hi everyone. 3a here. Did my month of everyday interferon just before Christmas. I am now on the Pega interferon and my shot is once a week. And boy, can I sleep!!! I have had some minor side effects but consider myself lucky so far. I notice hair falling out, annoying light muscle pain, get headaches everyday and blochy blurred vision. I eat like a horse and am still loosing weight. I go to the medical doc tonite for blood work and in 2 weeks will have my first 3 month CT scan. So far all is looking good but it’s always in the back of my mind. How is everyone else doing? Sure wish this winter weather would break. Sunshine is always good for the soul. Kaye

    March 6, 2013 at 6:44 pm

  38. Jason

    Hi mike my name is Jason 29yrs old from Massachusetts back in march I had a mole like wart removed from the exact same spot you had reported removed. When the doctors cut it out the doctors saw it was deep and unusual so they sent it out to get tested. The lab found it to be atypical spitizoid melanoma massgeneral danvers decided to perform centinal lymph node removal to check if cancer had spread. It was found it spread to that lymph node on a microscopic level. Which meant I had to go through a third surgery for regional lymph node removal. After removing additional lymph nodes no additional cancer was found. However they put a drain tube in to drain fluid after surgery for2 weeks. A month after they recommended beginning interferon for a year on June 10th 2013 got my first dose of interferon and got sicker than I ever thought possible and by 2 and 3 I got so sick I thought I would die and coincidently I got an infection where my surgeries were. The drs recommend to stop interferon because my leg was worse than post surgery which landed me in the hospital for 5 days. At this point I am in limbo to go back on interferon and go through all the pain and suffering or avoid it all together.

    Sent from my iPhone

    June 25, 2013 at 10:09 pm

    • Hi Jason – I am sorry you are having trouble with Interferon. I am not a fan of the drug since it is hard on the body and it the research says it doesn’t extend survival. Mike also declined it when he was diagnosed almost 4 years ago. He didn’t take anything actually. If there were a better option, he might have – like Benji said – Yervoy. The results of the Yervoy trial for Stage 3 patients will be released next year. Sometimes you can get it for Stage 3a but it is usually used for 3b and above. I will email you with some suggestions…Thanks Emily

      June 28, 2013 at 6:09 pm

  39. Benji Aymond

    You may want to ask your oncologist about any trials for melanoma, specifically the Yervoy ipulimumab. I declined interferon and have done 6 of 8 treatments of Yervoy with 0 side affects.

    June 26, 2013 at 12:55 am

  40. Emily

    Hi, my name is Emily. I’m 29 year old wife and a mother to a four year old little boy. In February I was diagnosed with melanoma IIIA . I had WLE and SNB followed by groin lymph node dissection. With the SNB I had micrometastitis less than 20 melanoma cells. I did high dose interferon therapy in June. I completed 13 out of the 20 infusions because my platlets were too low and liver enzymes were too high. My body could only handle 6 infusions before needing a three day break and labs would show toxicity. I had planned on doing th maintence doses 3x week for 11 months, but even with insurance we are looking at $1,100 a month for 11 months. I refuse to deplete our savings and 401k. Very frustrating and I had read lots on the therapy prior to starting it. I never saw complaints about price. We are unable to qualify for assistance because we both work full time with good jobs….. Who can afford that!?! Seeing your bling gives me more hope, and I have to remember that interferon will not extend survival rates.

    July 16, 2013 at 4:53 pm

    • Hi Emily (nice name)! Many people can only do interferon for short periods due to the side effects (please look through all of the comments on this page). As Jay said – there are studies that say doing interferon for a short period can be beneficial. My husband Mike is almost 4 years out and didnt do anything. It was a hard and very personal decision. There are much better drugs on the horizon that have fewer side effects. Please keep up on the research as it is very important to know what to do just in case your have a recurrence. So far so good and all my best to you – Emily

      July 16, 2013 at 10:38 pm

  41. Hi Emily,

    I was diagnosed with stage 3A back in February 2008. I had microscopic cells of melanoma in 1 lymph node in my left groin after my primary was on my left ankle.
    I then was meant to have interferon for 12 months. 4 weeks at high dose then 11 months low dose.
    I had the high dose for just 3 weeks and 1 day as like you my liver counts went too high. I then opted out to have the low dose as I read a lot about interferon and I made the choice to just have the high dose.
    This February 14th 2013, I was 5 years melanoma free. It was a great milestone to achieve.
    I really believe the high dose has helped me along with an overall healthy lifestyle, anything to keep your immune system in top peak is the way to go I believe.
    This is just my opinion, maybe not having the low dose and not being under so much financial pressure is the way to go. The stress that you could find yourself under by having this low dose, could cause more harm then good.
    I’m not a doctor, so please take this into consideration I’m just someone that has survived so far against the odds.
    I juice everyday and have done since 2008. A litre of fresh juice including a kilo of carrots, green apples, lemons, oranges, celery anything I can juice but I always have a litre of carrots.
    Fellow friend
    Jay

    July 16, 2013 at 8:17 pm

    • Jay I always love your comments! We just started juicing with a masiclating type juicer (Omega) and we love it. I am reading the book “Clean” by Dr Junger and highly recommend this approach to helping your immune system.

      July 16, 2013 at 10:43 pm

  42. When I went to take my 6th of 8 Yervoy treatments, I was informed by my oncologist that a new drug is about to hit phase 3 of clinical trials (the same phase I am on with the yervoy) and it is responding 3x more than Yervoy and has 1/3 the side affects. Yervoy has much more mild side affects (I’ve had NONE throughout treatment) so this is absolutely amazing news for melanoma patients!

    July 16, 2013 at 10:27 pm

    • Hi Benji – yes this new drug is called Anti-PD1. Very exciting!!

      July 16, 2013 at 10:40 pm

  43. Imogen

    Hi Emily & Michael
    I have found reading this blog and your stories from other readers very very reasuring.
    I am at the start of my journey – and in England where our NHS take a very different approach to Melanoma.
    on 11th JuneI had a wide excision of a mole from my back (the mole had been removed 5 weeks previously after being misdiagnosed as benign & had been shaved off – but they missed a bit).
    This mole had a Breslow of 4.5mm – ulcerated & mitotic rate of 10 per 1sqmm.(wide excision has got it all thank goodness!)
    CT scan all clear – they do not offer SLNB on the NHS in this region of England & it wasn’t even discussed or suggested.
    5 weeks ago I had another mole removed from my leg – also melanoma – breslow .67 so not as advanced.
    2 weeks ago they performed a wide excision on this mole site and also removed another mole from another part of my back that they referred to as “suspicious”.
    Now we wait for the results of this most recent back mole to see if I need further surgery on that site.
    I met with an oncologist last week who advised me that currently in the UK there is nothing that is offered for me at this stage.
    I could take interferon privately but they dont recommend it – and it would cost £20,000 plus.
    The only drugs available in England are if it goes inside me & they say there is a 50% chance of that happening in the next 5 years. & if it goes inside me the drugs available are Interferon – which just prolongs rather than cures.
    I am frustrated to say the least – how can there be nothing available to prevent this spreading…
    I am 35 – I have a 7 yr old & a 6 yr old.
    I am healthy – and apart from not being able to excersise at teh moment I am generally fit….I have been drinking Green Tea since diagnosis & having read this blog I will go & purchase Vitamin D tablets on my way home.
    Any other suggestions or tips welcome.
    Imogen
    x

    August 13, 2013 at 11:15 am

    • So sorry Imogen – it is very scary being diagnosed. Some good news is there are many amazing drugs in clinical trials all over the world right now for those with Stage 4 when it spreads to distant places – but not as many for those who havent had it spread. The doc is correct that Interferon is the only drug EASILY available at your stage (stage 2 and 3) since you have no evidence of disease in other places. One thing about Interferon is that some studies say it works better for those with ulcerated melanomas. But you just never know with Interferon. If interferon isn’t an option for you can try and sign up for a clinical trial in the UK. For example these ones are for adjuvant therapy (after surgery) http://clinicaltrials.gov/ct2/show/NCT01682083?term=melanoma+adjuvant+United+Kingdom&rank=3. There is also one drug being tested on Stage 3 patients called Yervoy. Some other good news is that those with multiple melanomas actually have better survival rates than those with just one tumor. The depth of the mole is very important. Since you have a pretty deep primary and it is ulcerated, you need to be very aware of your options if it does spread. Sadly, while it is so hard to “do nothing” it is sometimes the only choice for Stage 2/3 patients. I would recommend that you post here and ask for treatment advice since it is an international site and Catherine who runs it is very helpful: http://forum.melanomainternational.org/mif/ – please email me with any questions emily@emandmichael.com – please take care! Emily

      August 13, 2013 at 8:51 pm

  44. Jay

    Hi Imogen,
    Sorry to hear about your diagnosis. It is very scary just after being diagnosed as mentioned by Emily.
    I was diagnosed stage 3 melanoma in 2008 at the age of 32. Depth was 1.95mm no ulceration but the melanoma spread from my primary on left ankle to one node in my left groin. As a result I had all my left nodes taken out. I then had a high dose of interferon for 3 weeks and 1 day.
    5 years down the track I’m still all clear!!
    They gave me a 65% chance it would return with in 5 years.
    I’m happy to Skype you if you want, happy to help you anyway I can.
    jay.allen@melanoma.org.au

    August 13, 2013 at 9:03 pm

  45. Imogen

    Thanks Emily – I have investigated Yervoy – not given on nhs at this stage – there is a trial for a drug called Vemurafenib – do you know of anyone that has tried that drug?

    August 16, 2013 at 11:16 am

    • Imogen yes vemurafenib has been around for few years now and is FDA approved for stage 4 but only for those with the BRAF mutation. It was once hailed as an amazing success with low side effects and its a pill that melted away tumors. But the body eventually builds a tolerance and the melanoma comes back with a vengeance. This doesn’t happen to everyone and some people have had success for years. their might be a benefit with using it before the tumors start. You can read this post to learn more about the drug http://emandmichael.wordpress.com/2010/02/23/ny-times-covers-the-heartbreak-that-is-melanoma-and-a-miracle-drug/

      August 17, 2013 at 3:22 pm

  46. Sandi Dalton

    Good blog everybody. I have found it very encouraging. I am a (now retired due to illness) critical care nurse and educator.
    I had stage ll found in 2008, Had a simple resection and did not think about it afterward.
    While riding bikes with my sister in 2010, I had a seizure, fell and broke my hip, a rib and had concussion. When they scanned the concussion they found a large mass in my left temporal lobe. My brain had shifted all the way to the right (uncal herniation).
    I guess that makes me a pretty nasty stage Vl.
    I had an emergent craniotomy, started chemo and had whole brain radiation. I finished with a clinical trial. All that was almost three years ago. I am going to have routine scans this week. I feel pretty dumb most of the time {miss having my whole brain}, but other than having memory lapses, and word searching, I’m peachy. God does good work, doesn’t He?
    Hang in there everybody.

    September 9, 2013 at 3:37 am

    • Hi Sandi – thanks for your note! WOW – you are proof of how melanoma can be such a sneaky bastard! But I am so happy to hear that you are doing well (even without your whole brain LOL). Are you doing any other treatment? Take care – Emily

      September 9, 2013 at 4:32 pm

  47. Greetings from Davis, CA:
    It is so helpful for me to read other melanoma patients’ stories about their diagnoses and treatments.
    I had a 2.9MM nodular melanoma tumor removed from the back of my neck in February 2013. My wife took a photo of the tumor and emailed it to me because I could not see it due to its location on the middle of the back of my neck just under the hairline. I looked at the photo that she emailed to me and then googled skin cancer. Within a few minutes I was looking at a web site with a photo of a fatal nodular melanoma tumor that looked exactly like the growth on the back of my neck. Needless to say, the web site with the photo of the nodular melanoma tumor precipitated a surge of adrenaline in me.
    I immediately saw my general practitioner who told me to calm down because my tumor was actually a “blue navus”. He did refer me to a dermatologist. I saw my dermatologist one week later (after I called her office several times every day for four days until her receptionist “found” an appointment for me). My dermatologist also told me to calm down, because my tumor was at worst an unusual basal cell carcinoma. She did remove the tumor (punch biopsy, not excisional biopsy) and sent the tumor to a pathologist for evaluation.
    My dermatologist called me exactly one week after she removed the tumor and told me breathlessly that I was right and that the growth was a 2.9mm nodular melanoma tumor with a high mitotic rate.
    A couple of weeks later I had a WLE and a SLNB. The WLE and SNLB were both negative for malignant melanoma. I am now being MRI’d and PET Scanned every six months and examined by my oncologist, surgeon and dermatologist every three months.
    If my wife had not emailed a photo of the tumor to me, and if I had not found a photo of an amelanotic nodular melanoma tumor of the Internet, I likely would have ignored the tumor and it likely would have metastasized by now.
    Melanoma is a relatively rare cancer. SSM can be difficult to diagnose, even for trained pathologists who have an intact tumor to evaluate. Nodular melanoma can be even more difficult to diagnose, because it can look similar to a harmless blood blister or it can even be completely amelanotic. Both my wife and my son told me that my nodular melanoma tumor was a harmless blood blister. My son even offered to lance the “blood blister” with an Exacto knife to drain the blood out of the blood blister.
    I have high regard for my general practitioner and also for my dermatologist. There are so many benign skin growths that look exactly like SSM and NM that only a highly trained and experienced pathologist can accurately evaluate many melanoma tumors.
    Thankfully we all have access to the Internet to locate information and to share information and personal experiences.
    Thanks to everyone for so openly sharing their experiences, fears, successes and failures as well all attempt to successfully overcome what can be an extremely challenging disease.

    November 8, 2013 at 7:52 am

    • John this is an amazing story – not uncommon though. Many people think that something weird on their skin could never be a sign of a deadly disease. When I saw Mike’s odd patch of skin on his back, I never thought it would be so serious. Until I started googling. Luckily something told him to get his back looked at immediately and the general practitioner knew it looked like something bad. But nodular mel is definitely different than superficial spreading. I am so glad you and your wife were persistent. No one should ever be embarrassed to be persistent about their health. Wishing you continued health and thanks for writing! – Emily

      November 8, 2013 at 9:14 pm

  48. Angela

    I just found this site tonight. This has been a rough year for my family. I sent my husband 3 times to our family doctor last year for a suspicious mole on his lower back. Each time he came home and the doctor said it was fine, no biopsy done. By Christmas it started to crack open and bleed. He went back to our family doctor and asked for it to be removed. He was sent to a plastic surgeon who said it did not look good and surgically removed it in his office. My son was getting married Feb. 2 of this year so we kept it quiet. Then on the following Tuesday we received the terrifying diagnosis. Melanoma! It was 2.96mm. He had the WLE and SND. It came back as a hot spot. Recommendation was total node dissection and Interferon. We went to Memorial Sloan Kettering in New York for a second opinion. They recommended ultra sound and then doing a biopsy for the spot which showed on the CT scan done first before doing a total node dissection and not doing Interferon for the same reasons you mentioned. No benefits. They have not used it for years. It was found the spot was melanoma so he had a Total node dissection done under his arm. 3 more nodes came back with micro traces. This was done in June 2013. A terrible experience. The drain failed to work, no one returned my calls to fix it and the nurse VON did not know what she was doing. He was left with a Saroma. Hard mass under his arm formed when it would not drain properly. He had another CT scan done last Friday before he travels to New York(we live in Ontario). More terrifying news it has spread to his chest(3 more tumours) which are inoperable. He has been tested for the Braf gene which Canada knows nothing about since they have one standard of care. Remove everything and Interferon. If you don’t do things there way they toss you aside. He carries a rare Braf gene which there are no clinical trials for at this time. We are off to New York for his scheduled visit so hoping they have found some form of treatment or a clinical trial.
    It is quite the battle but we will fight the fight. It is just a relief to read other peoples stories. All information is beneficial I found.

    November 22, 2013 at 6:42 am

    • You are in great hands with MSK and they will give you more options. Please do me a favor and contact the Melanoma International Foundation at contact@melanomainternational.org 866-463-6663 International:610-942-3432.
      Catherine Poole will help you. For lung mets he should not be given interferon! There are new drugs that the FDA will approve in a few months – Anti-PD1 has an amazing cure rate and low side effects. You must look into getting this. Please ask Catherine about PD1 – she will know more than I do about the reality of the getting the drug right now. Yervoy is another FDA approved option as is Zelboraf (BRAF) but the latter only works for a limited time. Please keep us updated! Take Care, Emily

      November 22, 2013 at 5:49 pm

      • Angela Martin

        Well the roller coaster continues with this terrible disease. My husband had another lump show up under the scar where he had the Node Dissection. He had a biopsy done and this has shown to be positive for Melanoma. He has 2 Mets in each lung as well. The tumor under his arm actually turns out to help him to be accepted for the trial with Yervoy. He is off to MSK on Thursday to discuss how and when this will start. They have decided not to operate at this time. They will be able to do the biopsies on this tumor while they are giving him the drugs. This way they do not have to go in and do a more invasive surgery on the lungs. We are keeping our fingers crossed that these drugs will shrink the tumors. Thank you for giving me feed back on some of the options out there. I have checked them out and feel we definitely are getting good care at MSK.

        February 10, 2014 at 9:09 pm

      • Angela I am so sorry to hear – yes melanoma is a scary rollercoaster. I am very happy that he is at MSK and in a trial though. Is the trial in combo with anything else? Like anti-pd1? Please keep us posted.

        February 10, 2014 at 9:27 pm

  49. andrew

    Really helpful to hear of all the personal stories of melanoma. Great strength and will and courage! I am a 64 year old man, with no prior history of cancer, was diagnosed in August, 2013 with Stage IIa Melanoma; 2.5 mm; after a sentinal lode dissection found no lobe involvement; no mitotic activity (1 lobe was removed from my arm pit, the lesion having been found under my bicep). I have had no further treatment but am checked every 3 months. Thus far, all is well. In fact, after the clear sign from the lobe dissection, I was told I was “cured.” I feel very fortunate. Nonetheless, I am vigilant to be checked by both my oncologist and dermatologist every 3 months for the first year and 6 months the second and staying aware with regular check-ups each subsequent year.
    It was advised by my oncologist that I not have a PET scan since the lobes were clear and any involvement would have surfaced from that procedure.
    Any thoughts or comments from my case and follow-up would be greatly appreciated.

    December 28, 2013 at 8:15 pm

  50. mandi

    Emily, I try to keep up with your husband on your blog page but doesn’t look like it has been updated as to any recent scans since Nov 2012. Did he get any scans in 2013? If so how did he do? I like to keep up with him as his story is so closely related to my own husbands story and he does have scans this month.

    Thanks
    mandi

    February 4, 2014 at 8:04 pm

    • Sorry Mandi! I havent updated in a while but will soon – he hasnt had scans yet (procrastination). He is doing well otherwise! Hope you are as well – let us know – Emily

      February 10, 2014 at 9:24 pm

  51. Roseanne

    Hello
    My name is roseanne I found out in April of 2014 that I have stage 3 a melanoma and I had surgery to remove and remove and remove tissue from the top of my foot as well as surgery in sept to remove my sentinel lyphm node where they found the cancer had spread to. I also had surgery in sept to remove the rest of the lyphm nodes in my groin and I had a Infection that developed and they had to operate again at the end of sept to get it cleared out and close it up again. Today I had my stitches out from that surgery and I spoke to the oncologist about interferon and how it will be a rough year if I choose to do treatments and that I should think hard on the issue. It alwYs occurs to me at age 51 that I’m a single Mom of two grown kids who need me and any chance is a good chance of reacurrance coming. I understand that interferon is not a cure it is not even a good option really but I am told there’s nothing else. I spoke to both my kids to explain and talk to them about all this so they know what to expect from me this next while and the oncologist said I begin Monday if I agree to do the treatments. He kept telling me to think hard on this treatment issue as if to say don’t do it but I keep thinking what would it be like if I didn’t and 6 mths went by and I have a reacurrance and then all I can think of why didn’t I try. I should’ve tried I’d be saying. Kicking myself in the backside the whole time. I realize the interferon isn’t the best option but can you anyone please tell me I’m not crazy to consider this. I feel like it’s all I’ve got for options and what a fool I would be to not try after all I’ve gone thru with all this I have to try this last mile to do all I can do. Even if the 10% is all that keeps me from another reacurrance sooner then I have that 10 % it’s better than nothing right? I’m not nuts to think I wanna do this and I know I’ll be sick I’ll be weak I’ll be feeling awful but what else do I do sit here and wait for something to happen. No I can’t. I can’t just sit and wait for cancer to beat me. It’s in me to fight. Please can someone please email me I could use some reassurance and some encouragement honest I do. I thank you for sharing your story for sharing period so I can look for comfort. Thank you
    My email is annie_1963@hotmail.com if anyone would please offer me some encouragement please. Thank you so sincerely
    Roseanne

    November 13, 2014 at 6:53 am

    • Roseanne

      Hi I just wanted to apologize if my post sounds stupid I’ve been sitting here alone thinking and thinking and re reading all the posts and now in re thinking this interferon. Gosh I don’t know how what is the best I keep thinking. Some people seem to go thru the interferon easily and some have awful experiences. I must sound so whishy washy not knowing which way to go. It’s a tuff issue I think. Now that I stopped crying in thinking ok can I do it can I do it is the most important point. Im just wanting to say sorry if I sound silly I honestly didn’t mean to. This is all so emotional. So emotional.
      Thank you all for being patient with me kind and understanding of my words.
      Sincerely again,
      Roseanne

      November 13, 2014 at 7:37 am

    • Hi Roseanne – you are certainly not crazy to consider Interferon. Melanoma comes with so many tough decisions and this is one of them. I am not a huge fan of the drug but it doesnt mean you or anyone else should not research it and make your own decision. At age 42, my husband decided that it wasnt worth it to him or us. The side effects and his quality of life would not be the same. BUT he was stage 3a which has better prognosis than stage 2b and 2c. You also need to review your pathology for depth, ulceration and mitosis and how much was found in your sentinel node. If you feel strongly about doing adjuvant therapy, you can also consider an adjuvant clinical trial if there are any for Stage 3a. There are many promising drugs but sadly they arent available to Stage 3a. I think Interferon is only available up until a few months after lymph node surgery so the decision needs to be made sooner rather than later. As for encouragement, I have many friends who are stage 3a and doing very well years later. I also have many Stage 4 friends doing well years later. Take care, Emily

      November 13, 2014 at 4:40 pm

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