My melanoma history, lymphedema, IL-2 and other evils.

Just another post of rambling, babbling and general diarrhea of the mouth...or more aptly and specifically, fingers, since I am typing, not talking.
It just occurred to me that I never really posted my melanoma history anywhere on this blog; well, at least not an accurate and more detailed description of all the vast array of crap that I (and many other melanoma patients) have had to go through in the last 3 years and approximately 8 months or so. I did have a vague summary as a first post, but that was about it. So aside from the limb profusion last fall, which I did post endlessly about, everything leading up to it hasn't really been mentioned.

Since I am a veritable computer moron where some things are concerned, I am not quite up on how to link to my Patnet on MPIP...so, here goes:

*Note:Boring post alert to anyone who has heard all of this to infinity and beyond. Just figured I would get it down in case anyone was curious, even if it is a longshot. heheh*

It has been a long road since April of 2000, if I want to be completely accurate here, since that is technically when the butt ugly mole first decided to rear its head. I was preggo with my second child, my son, cute lil' man that he is ;) But being one of the worst procrastinators, I just watched the thing as it grew, mutated, changed colors like a kaleidoscope and just in general, became more threatening.

Had it biopsied in May of 2001, and was only told that it was "benign." Despite the insistence on the derm's office's part that I was supposed to follow up, in my most accurate recollection, that is not quite how *I* remember it, AT ALL. I had to insist on the biopsy in the first place, despite the derm's warning that it would leave an ugly scar, and his insistence that melanoma is rare and just never happens much with younger people (I was 29 at the time). He literally whipped out a single edged razor blade for the biopsy. I'm not kidding. At the end of the appointment, the dude gave me a pat on the hand, told me to not be embarrassed to come back if it came back benign, because, in his most infinite wisdom, he was certain it would.

Well, obviously, the nasty sucker came back. But after being told it was benign, I chose to ignore it for a couple of years...until it got bigger than it had been before. In August of 2003, I had the fugly bugger biopsied, this time, with a punch, not some razor blade.

It came back malignant melanoma, of aproximately 0.5mm in thickness (it must be noted here that I had only had a partial punch biopsy of some miniscule little black speck at the very edge of this sucker). The rest of it still sat squarely on my left lower leg/shin area...seemingly taunting me, causing me to question the true depth. I was immediately scheduled for a wide excision, standard of care when a melanoma is actually only 0.5mm in thickness. But I had an issue: I wanted to know how thick the rest of it was. A doc at this practice, who had not been there before (when I went there back in 2001), was the one to do the biopsy. He was very concerned about this mole being there before and "regrowing" in the shave biopsy scar...This led to a whole mess where he dug up the old slide, reviewed it, and later on, made a very shaky statement referring to "legal reasons" being the reason he couldn't comment on the old slide, and my ultimate consultation with a malpractice attorney.

By this time, the docs at the head of the practice had already goaded me in my very limited wisdom at that time to go ahead with the wide local excision (removal) of the melanoma. When it came back, the residual melanoma in the WLE was just over three times as thick as the initial biopsy showed.
I needed a sentinel node biopsy, since that is the standard of care for melanoma that is over 1 millimeter in thickness.
At that point, demanded copies of all my records and took my whole case up to Jefferson in Philadelphia, where some of the most skilled experts in melanoma practice. I can say nothing but good about all the care I received there from every doc through every single thing that transpired in my case since then.

In November of 2003, I had my Sentinel Node Biopsy done: a test to check the lymph nodes nearest the melanoma to see which ones that primary had drained to, and check them for any melanoma cells.
I had 5 lymph nodes "light" up. One was questionable, with atypical nevus cells in the capsular area of the node. It was ruled that this node was most likely not melanoma due to the location of the cells, but to quote one of my docs, "The docs are still scratching their heads over this one."

So I was closely monitored by the oncologist along with the surgeon who had done the SNB. Something that would ordinarily be considered unusual for a stage IB melanoma patient.

All went relatively according to plan as far as stage Ib melanoma patients go...That is, until December 2004, when I felt a sharp stabbing, stinging sensation right next to my wide excision scar. I looked at the scar to see the origin of this sensation, and noticed a little red dot. Over the next couple of months I watched what started out being a little red dot turn into a raised pink papule/nodule. In March of 2005, I finally got in to see a dermatogist at University of Penn who biopsied that spot along with two others.

The spot was recurrent melanoma, consistent with an in-transit/satellite metastasis. The report stated that cells were seen focally within a lymphatic channel.

I was now stage IIIB. Things were a blur after that for a few months.

On May 4th 2005, I had a superficial inguinal node dissection done to remove and check my lymph nodes in my left thigh/groin to check for any melanoma cells along with a skin graft to cover up the crater-like hole that had to be created to remove this recurrence.
12 lymph nodes were removed at that time, all of them FREE of melanoma!! Yee-haw!!

After close consideration and inspection of my slides at that time for the in-transit met, back in June of 2005, it was the recommendation of my oncologist at Jefferson to get the Isolated LImb Perfusion done. I ran like a psycho ninny wimp chicken like my hair was on fire from that procedure at that time...something that to this day I am kicking myself in the butt for...I do realize it does no one any favors to beat yourself up about making decisions that ultimately lead to a worse outcome, least of all yourself...but hey...

I went runnin' to UPenn for a second opinion, where instead of ILP, I was offered up the treatment regimen of Temodar and GM-CSF. I took these on a 28 day cycle: 5 days of TEmodar, two days off, then 14 days of subcutaneous injections of the GM-CSF, then one week off...Start over. I was on Temodar for 10 months; GM-CSF for 12. This was all started up in August of 2005.

In March of 2006, I had a crop of little pink papules literally pop up overnight up and down my left upper/inner thigh, along with one that was deeper in the skin and felt like a little rock or pebble without a pink bump on the surface. These suckers literally just disappeared within a few days of completing the TEmodar part of one of my cycles...I will always wonder if they were actually melanoma. A biopsy of the deeper lump was inconclusive for anything but white blood cells and some fibrotic type tissue (?).

In late July 2006 I felt a hard rocklike and immovable lump just an inch below my lymph node dissection scar. It felt identical to the deeper lump I had felt in March. A Ct scan confirmed a subcutaneous nodular density and a fine needle biopsy confirmed melanoma.
I had myself another in-transit/sub-Q. Surgery to remove this little abomination was done on September 22, 2006. In the outlying skin that was removed, it was evident that the big boy had spawned off some clones and babies of different sizes.

I no longer had any argument good enough to justify not doing the isolated limb perfusion, since this shit just loved to keep on croppin' up in my leg. I was done farting around and finally, head out of my butt, at long last, had the isolated limb perfusion along with a complete dissection of all the rest of my lymph nodes in the pelvis/lower abdomen. For the most part, I have railed, griped, and gone into more detail about all of that whole ordeal here on this blog...It was basically what got me started doing the blog thing...That, plus it just seemed like a real cool way to get my thoughts out of my head where they seemed to be doing me no good, and to be truthful, were poisoning my attitude. LOL.
Of course, as I mentioned in the beginning, I had 31 lymph nodes removed, one of them in the lower abdomen was positive for multiple foci of melanoma. This blasted old node put me up to stage IIIC.

And the rest, as they say, is history. Until now, that is. All this seemingly overwhelming at times stage IV crap. Two mets in my bones and six in my lungs. HOLY HELL.

Being down by damned near 50 lymph nodes, I have noticed that I am swelling quite a bit, as you can see from the pics below. Not all the time, but more often than ever before. These pics aren't quite as bad as it has been on a couple more occasions, but even on the worst ones, it hasn't been as bad as the heinous lymphedema issues some of my friends have had to deal with...But check out that fabulous left ankle and upper foot area. Pretty, huh? That shit can get pretty painful...so I can't imagine how painful it must be for people who have more swelling than I have had...My heart goes out to them.


Here is another shot of this beaut.
Interluekin 2 is the next line of attack for me...at least once I finish up these radiation treatments. I am now 9 treatments down; either one more or five more to go, depending on whether or not the radiation oncologist thinks I have responded as well as he hoped I would.
I am investigating the IL-2 in two different places. One of which is St. Luke's Hospital in Bethlehem, Pennsylvania, which is over 2 hours from my home. The down side to this one is that my family would most likely not be able to be a physical presence there for moral support for me at any time during my treatment. Of course, there is no denying the excellent reputation associated with this hospital. That can't be argued with...Tough choice, to say the least.
The other choice is the hospital close to my home. They have just built within the last five years, a new and high tech cancer center. They are trying to build up an excellent reputation in the area of other cancers, but are branching out more into the melanoma field. They have been certified as one of the few selected hospitals to give high dose IL-2 to stage IV metastatic melanoma patients. The onc I consulted with there who will be administering the IL-2 said they all, he and all of the nurses, have been rigorously trained to give this treatment by the IL-2 staff at Pittsburg.
They haven't had the sheer volume of patients yet that St. Luke's has had, and therefore, less hands on experience...but it is still so worth considering...And of course, my family and friends would all be able to come up and hang out so much more easily...That alone would be a HUGE thing for me...
However, with my local hospital, they are still trying to work out all the potential insurance issues. To say that by the day, I am getting more and more fried in the skull would be putting it far to mildly. My tension meter is off the charts and in the red.
But....I am toughin' it out as much as I can...and am hellbent on getting this treatment, as it seems to be the most promising as far as complete responses and durable long lasting remissions for those patients who have the complete response to the treatment. 16% of patients responded in trials: 10% partial response with at least 50% shrinkage of tumors, and 6% complete response...ALL tumors GONE...and apparently, most of them are still NED. Downside...the treatment is supposed to be hell on earth for a few days while receiving it and the first few days home...

But who can argue with a shot at NED? Especially at Stage IV...and NED with a lasting response? Shit...at this point, I am ready to grab that bull by the horns...

But...One thing stands true, still, above all else, despite the battle between the positive upbeat and go get 'em attitude versus negative and defeatist one:
To use I pic I posted before, all repetition aside, I believe it sums it up:


Ain't that the truth?
Until next time....