Anyone w/Metastatic Melanoma of Unknown Origin?

snormr · New User Joined: 03 Aug 2006 Posts: 6

Hi, everyone. My name is Rob. I'm 38, married, and have two beautiful young girls (2 and 4) and live in central North Carolina.

On July 17th I was diagnosed with a metastatic melanoma (MM). Examinations by my dermatologist and two doctors at the UNC Cancer Clinic revealed no primary site. I had a PET/CT scan from the neck down and an MRI of the neck up. Aside from the MM on my right upper arm, the results of the tests came back clean. My first reaction was that of great relief. For the 10 days between diagnosis and results of tests, I didn't know how much longer I was even going to live.

In a conversation with my surgical oncoligist today, I found out that a PET scan is only good at detecting tumors of roughly 5 mm or larger. So it's possible I could still have other tumors that just aren't showing up yet. I will go for a yearly PET scan...but it's as if docs are just going to be waiting for other areas to pop up and treat them.

I'm wonderng if anyone else is in this same situation. Apparently this happens in 7% of people diagnosed with MM. I considered myself very lucky....but I suppose luckier still would also have been to find the primary site and remove it. It is speculated that my body may have isolated the cancer and fought it off. However, my reading shows that most cases like this are just partial regression...and that only 33 patients have ever been documented to have a full regression.

If this sounds at all like you I'd love to hear your history, if you have had any recurrence, etc.

Thanks for reading this and thanks for your time.

Rob

Kaelie · Regular Joined: 11 May 2005 Posts: 29

Hi Rob,

It sounds like you've either done a ton of reading, or your docs are trying to keep you really well informed. Awesome. Getting doctors that you can converse with and who have the time to answer all of your questions is a Godsend. hold on to them.

While i'm not in your situation, nor do I know jack about it, I do want to just say hi and say welcome and thank you for peeking your head onto our boards. I can empathize with that "waiting on results" thing... that is the WORST. I was lucky in a way, my initial diagnosis of melanoma was a total shock... I didn't even know that the mole that was removed was being sent away for tests. But all these chunks of meat they scoop out every 6 months... now i'm a bit wiser. I keep forgetting to buy my dermatologist that melon-baller from the kitchen supply store to make things easier...

I hope that someone here can sympathize with your situation a lot better than I can.

~Kaelie
melanoma survivor since 2005 - GO ME!

snormr · New User Joined: 03 Aug 2006 Posts: 6

Hi, Kaelie...

Thanks for your response. This is incredibly scary stuff. When I first got my results back of being "clean", I was so relieved. I was figuring they would take the melanoma from my arm, I would be watched closely, and hopefully never see this thing again. If this was a primary, that might just be the case. That it is metastatic is what has ben alarmed.

I know how lucky I am to have a metastatic melanoma and have the PET/CT and MRI show nothing else. I won't go through chemo or radiation -- and won't do Proleukin or Interferon treatments. Part of me wishes I could do some preventative chemo or something in case there are areas that are hiding -- but I know how silly that is and there isn't going to be a Dr. on the plane that would put a patient through unneccessary treatments.

I see this melanoma on my arm...and it's this blob of poison that I just want off my body. Knowing that there may be other areas inside of me that are just not detectable yet is especially disturbing.

I see you are a melanoma survivor since 2005. Congratulations...that's great. Do you mind sharing your history with me? What have your treatments been beyong surgical removal of the melanomas? Where are you being treated? If you'd rather not share this with the whole world, I can be reached at snormr@yahoo.com

Oh...and yes...I've been doing a ton of reading. My docs are very good...and will gladly answer any question I have. The problem is they don't seem to willingfully volunteer information...and I'm not always sure of the right questions to ask. That seems to come with time and added information. Seems like I get one question answered and it spurs on two additional ones.

Regards,
Rob

Kaelie · Regular Joined: 11 May 2005 Posts: 29

i have tried 4 times to reply... maybe this was not meant to be. 3 power blips (one lasting 4 hours) and one just plain funky thing, so incoming attempt #5!

I'm a 37 year old mother of 4 teenagers. Used to work, but now pretty much housebound.

Went to my GP to get a referral to a neurologist because my insurance company changed and i was running low on epilepsy meds. While there I had him take a look at this funky-looking mole that was in a bothersome spot right on my hip bone. The elastic on my undies rubbed it funny sometimes. He removed it in a shave biopsy, I skipped out of there with a few stitches with orders to return in a week for removal.

A week later, my 4th wedding anniversary, I returned and got the news... melanoma. I kept waiting for him to say the word "malignant". He never did, so I was all perky and upbeat as he asked me if there were any other moles that gave me trouble. I pointed out 3 brand new ones that he promptly scooped out. I joked about giving him a melon-baller for Christmas.

When I got home I did some surfing and realized that melanoma only came in one variety... malignant. My heart sank. Our anniversary dinner was spent dining in a fine restaurant over candles and tears.

Surgery was scheduled for 3 weeks later. Wide area Excision and lymph removal (forget the name of that thing). The lymph and tissue removed was checked and all came back negative.

In pre-op appointments with the surgeon i asked what the depth was (2.5mm). That is the only information I was ever given, and I practically had to beg for that. Online I found a staging tool so if I assume that the parts I didn't know were not "bad" then I could stage myself at stage 2.

1st post-op appointment I was sick as a dawg... That was when I got the news that the tissue samples had tested negative. Funny, I went in healthy and was told I was sick, then went in sick and was told I was healthy...

I continued to be sick... colds, bronchitis, flu, lung infections, for a full year after the first surgery with few "healthy" breaks.

I was never referred to an oncologist, or dermatologist. Three months after surgery, when I was still having trouble with my 14" monster-scar and pop-can-sized lump I was referred back to my GP.

At the 5 month mark post-op, the GP injected cortizone into the scar to try and alleviate some of the pain and swelling. OMG!!! the lightening was severe and immediate and has not let up since. I have been on pain medications since around then. (september 2005).

In October the surgeon went back in to try and fix some of the nerve damage. She told my husband post-op that it was "a one-in-a-million thing" and should be fine now. Um.. not so fast there... It was okay for about the first week, then seemed worse than ever.

In December, after an MRI revealed some fluid (oh yeah, forgot to say that all along the surgeon kept saying that the lump was fluid and should drain by itself) so she saw fluid on the MRI, and drained 30cc (a relatively small amount) she said... and I swear to God this is a direct quote...

"the amount of fluid i drained is disproportionate with the amount of pain you say you are experiencing"

So that is pretty much were I'm at now... I found new medical group when my insurance switched again.. i never did get to see that referral with everything else going on. The dermatologist in that medical group checked me over and sent me for chest x-rays and bloodwork... the first since this whole mess began. In that first visit, after checking me over head-to-toe he only had to scoop out one chunk (negative.. woot) I found a neurologist who diagnosed traumatic peripheral neuropathy in my hip leg and bum (sitting is such sweet sorrow). And somewhere along the line, someone diagnosed COPD and didn't inform me. I don't know who, or when, but that is relatively unheardof in someone my age. I'm still trying to track down these records.

Moral of this tome... ASK AS MANY QUESTIONS AS YOU POSSIBLY CAN. If one question prompts two more... ask them all. My problem was I was afraid of sounding stupid in that first appointment by asking if it was malignant or benign, and set in motion a whole chain of events that snowballed into an avalanche.

~Kaelie
_________________
~~Kaelie
Melanoma survivor since 2005 - GO ME!

Theme Song - http://members.cox.net/kitten00/manah.ram

soup1 · New User Joined: 13 Aug 2006 Posts: 1

Rob, I have a story almost identical to yours, except that I had melanoma on my left shoulder. Unknown origin, clear Pet scan following surgery, etc. I had surgery in the beginning of February, 2006 and unlike you, have just finished 6 months of a combination of a chemo drug (Temodar) and an immune system boosting drug (Leukine). The hope is that the drugs will rid my body of any remaining cancer cells. I would be glad to share more info if you are interested. Just wanted you to know that there are options out there.

snormr · New User Joined: 03 Aug 2006 Posts: 6

Hey, soup. Yes...I would very much like to chat with you as I can't seem to find many people out there like me.

Please feel free to contact me offlist at snormr@yahoo.com

Regards,
Rob

gemini40 · New User Joined: 03 Oct 2006 Posts: 1

Hi Rob:

I am a 49 year old female with 4 boys, living in Chicago. In Dec 2004, I had a mole removed from right back leg and it came back melanoma in -situ-basically, stage 0, 100% cure rate, no further follow up required.

Fast forward to June 2006: my general physical revealed a slightly high white blood count for 2 consecutive testing periods. Referred to a hematologist/oncologist and, right before the appointment, I found a large lymph node in my groin. Lymph node was removed on 7/31 and biopsy came back: melanoma. I now have Stage lll cancer. I had a complete inguinal lymph node dissection on 8/30/06. All the remaining lymph nodes were removed and biopsied and all came back negative. My next step will be one year of interferon.

The primary can not be found. Doctors do not believe that it was from the mole removed in 2004. They believe that a mole regressed as they can not find it and I have been examined from head to toe. Also have had PET scan, MRI and CT scans.

Are you in a wait and see mode? What was the Clark's and Breslow level of the melanoma removed? What do your doctors tell you about regression? Why isn't the melanoma on your arm considered the primary?

Sorry for so many questions.

Debbie

snormr · New User Joined: 03 Aug 2006 Posts: 6

Hi, Debbie...

I'm sorry to hear you had to go through the full dissection. How have you been healing?

I know much more and yet very little about my case since I posted this. Apparently I have a very rare set of circumstances. While pathology reports this as metastatic melanome (solely based on the absence of epidermal involvement), my doctor at Duke isn't so sure this isn't the primary. I also saw the docs at Sloan Kettering. Basically nobody can stage me. Since this posting, I had my tumor removed and the sentinel node came back positive. I had the full axillary dissection and 24 lymph nodes were examined -- all coming back negative. My tumor was 1.1 mm and because it showed up in the sentinel lymph node, I am automatically Stage III and possibly Stage IV.

I will also be starting Interferon, but my research has been revealing that while Interferon seems to be associated with delayed recurrence (if recurrence is eminent), it doesn't seem to show a direct correlation with overall survival in patients. Apparently Interferon isn't the blockbuster drug originally thought it would be. But it's the only FDA approved drug of its type and I guess it's better than nothing.

I went though the process of looking into a vaccine clinical trial. To date, vaccine therapies haven't been hugely successful, but they are very promising. But if you read through the trials, most say you have to be HLA A2 positive -- which is you white blood cell type. I am HLA A1. That alone excludes me from all but two studies in the country. The one at Columbia is closed right now and the one at the University of Virginia that accepts A1 patients won't accept me because my DRB1 type isn't a match. So at this very moment, I can either take Interferon or do nothing. I will go down the Interferon path for some period of time. If a trial opens up that I am eligible for that looks good to me, I may stop my Interferon to do that. Some research suggests that the first month of Interferon offers the most benefit anyway.

At any rate, I don't check here very often so please feel free to e-mail me at rob.rosen@sas.com to chat more. I'd also like to know if you've seen any other doctors and what they may have said.

Take care,
Rob

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