Stage 3

I am new to this board, but not new to Melanoma.  I had my first run in with this monster back in July 2005.  A mole on my left buttock/thigh area.  Had since very little.  Grew somewhat bigger and darkend to almost black.  The derm. took one look at it and said it was melanoma and scheduled me for surgery before getting the lab work back.  Did a very wide excision even though the spot was really small.  There was less than a 5% chance it would ever reoccur.  Nothing more than some blood work.  Went back in like clock work for the next 2 1/2 years.  Plenty of other spots removed and tested or nitro'd off.  Went for a check-up in Feb 08 and even did more blood work, lymph nodes and everything was fine.  March 24th 08, woke up while on Spring break with my kids and I had a swollen lymph node in my groin area the same side as the primary site.  Within hours of finding this myself, I had already been in surgery to have it removed.  My life has been turned upside since then, as you all know that experience all to well.  NEVER thought I would be "stage3". Single mother of two, currently on FMLA.  Will run out of sick leave in a few weeks.  I guess I will be a non-pay status.  How are we suppose to fight a disease like this when you can't miss work?  Just so much to take all at once.  My PET scan did come back with more lit up in the groin area and something in the lower right lung.  They are pretty confident it is only scar tissue.  To small at this point and it did not light up in the PET.  I don't like their approach of "wait and see" what this spot does.  In the meantime I am scheduled for a large lymph node sugery in two weeks, then will discuss more treatment options.  They are pretty sure there is more lymphs involved.  Looking into Interferon at this point, seems there aren't a whole lot options available.  Been trying to study up on trials but it all just gets so confusing.  I will not look in to anything that is not at a Phase 3 trial. I've been told they have the best chance, if any to offer hope.   I was also told that I was in a category of less than 5% to have had this come back in a lymph node.  I guess the first primary was so small I should have never had another bout with this monster.  On that note maybe I can be the rare one to find hope.  Just as we all might be that lucky one. Want to get the point across if you have been so lucky to catch it early on only the outer layer of the skin, always stay on your app. insist on blood work yearly and exam your lymph nodes.  I would also insist on a SNB after the wide excision.  Could it have caught this sooner, I'll never know.  I am just ready to move forward wih any treatments I can get, and hope this doesn't come back for along time.  It will come back, Melanoma always does.  My prayers and luck are to each and everyone of you.  I truly hope we find more options out there so that we have more hope to kill this horrible monster.

I have a question for you. I had a spot removed two yrs ago that was pre melanoma (top layer melanoma). I had that spot for almost 10yrs but when i was pregnant it got bigger and I had it removed. The doctor had me come back to cut out more to make sure it was all gone but what im wondering by what you are experiencing is that could it spread even though i had it removed early? Did they diagnose the melanoma that you had orinally removed? Mine was a black looking spot and now i have more. Its been two years and i have an appt. next week but do i need to be concerned with this coming back worse or like before.

My sister has stage4 melanoma and it has now spread to her brain and liver and 3 tumors in her back were it originated from. This is very hard for everyone going through this!

I will keep you and your family in my prayers!

Sincerly,

Shalina, Dallas TX

My thoughts and prayers are with your sister and family right now.  This is such a horrible disease.  It is very hard to hang on to hope when it seems they just can't get ahead of this disease.  I would really like to know more about your sisters diagnosis.  Is she on clinical trials, what time frame has all this come about?  I am wanting to go further with out of state treatments, since IN doesn't offer much.  If I was you, ESPECIALLY since you already have a proven family member fighting the disease, I would tell the Derm. that you want every and anything done to look at all possibilities.  This disease doesn't care who or how it works, and percentages, statistics, and odds do not even phase it.  I was in the odds of never dealing with this ever again in my life.  I am stage 3 and probably will be futher along.  Looking back now, I had asked for a Sentinel Lymph Node biopsy, meaning they could have done a simple needle biopsy of the closest lymph node to the original mole that tested positive.  Had it been postive we would have went from there.  Also blood work LDH, I might have those in the wrong order, but the derms, know exactly what they are doing.  My problem, first one so small I was actually below the 5% rate of ever having this again, but I had just been in for my checkup in Feb.  No swollen lymph nodes and even insisted on the blood work. Nothing came back wrong.  3 weeks later, I am just blown out of the water.  The derm always said I never had any reason for any of my lymph nodes to be tested.  I would have to strongly disagree.  No harm done in checking the SLN when you have had melanoma and a family history.  I know this is long, but if I can get one person to do what my instinct was telling me years ago, then this board was the right place to start.  I always felt that I shouldn't question the experts, never went for 2nd opinions.  I now want somewhere to turn, for a 2nd opinion.  Don't know where to begin.  If only I could go back and be more persistent.  After all it is our life living thru this hell, not theirs.  I will keep you and your family in my prayers, I so wish for all the best.  Maybe you will be so lucky and never deal with this in your own body but I wish you everything in helping your sister.  It can seem like such a long and lonely road.  I still can't get over how many years has went by and no major progress.  Please stay on top of your app. which should be several times a year, and be demanding of what you want checked out and follow it thru.  I will be thinking of you and your family, keep me posted.

Kim,  Indiana