Today marked my third surgery of the year.

The first surgery, almost exactly five months ago, was to confirm whether I actually had cancer (it did).

The second surgery, about four months ago, was to try and confirm whether the cancer had spread (it had), as well as try to remove it surgically (didn’t work).

Today’s surgery was not about verifying or fixing anything, however. It was to remove cancer tumors from my body and use them to create a cellular therapy, using my own cells to fight the metastatic melanoma growing in my body. This was explained a couple of blog entries ago.

What I did not discuss in that blog entry last week, because I didn’t know, was that the firm lumps immediately below my lymphadenectomy scar (surgery #2) were not scar tissue as we had believed, but instead were new, growing melanoma tumors. Three tumors, as best as we could tell via touch. That determination was confirmed via the CT scan I had taken last week while I was here at the National Cancer Institute’s (NCI) Clinical Center.

The impact of this new determination resulted in a change in my surgery today. Originally the thought had been that the 3cm+ tumor in my right iliac region, spotted during a CT scan a month ago, would be the tumor removed for harvesting immune cells. But now that tumor, along with other smaller ones in my groin lymph nodes, remains within me, to be used as references to determine whether my upcoming treatment has been successful.

So instead, this morning, around 10:30am, surgeons removed a chunk of biological material almost the size of a baseball from my upper thigh, consisting of the aforementioned three tumors and surrounding tissue which was of questionable state and use (like old scar tissue). They also removed the new melanoma mole that had been forming (which had achieved a respectable 6mm in diameter after only six weeks) near the original mole site.

The size of the extracted mass was intimidating when I learned about it. I have been told there may be a permanent “dent” in my thigh once healing completes.

But what’s really important is that the folks here at NCI now have sufficient amounts of my melanoma to try and harvest the immune cells they need to help treat and hopefully cure me of my cancer.

The next step is that we need to wait a couple of weeks to see if they were able to harvest the necessary lymphocyte cells from my tumors.

I am going with the assumption they will be successful with that step, in part because that’s the assumption here at NCI as well (though no guarantees, of course).

Once enough cells have been grown, I will come back to Bethesda, sign the agreement for the treatment, and then be randomized into either the normal TIL treatment or the one with radiation, as I discussed last week.

In the meantime, I will have a couple of weeks during which the wounds from today’s surgery can continue healing up (I haven’t seen them yet, but will soon enough). I am already able to walk around (albeit slowly), with only a small bit of pain from the surgical areas.

I will be released tomorrow so I can fly back to Boston with Linda in the evening. I must admit that the prospect of the flight is a bit unnerving, though, because I was only able to secure a window seat on the flight back (Hurricane Irene related flight cancellations resulted in very heavily booked flights all this week). I hope I’m able to work a deal with someone (either the airline or another passenger) for a left-hand side of the plane aisle seat so I can stretch out my right leg.

But even if I can’t negotiate a better seat, I’ll manage – it’s a small thing in the grand scheme of things. The really important thing is that I’ve taken another step – a very critical one – on the path to NED (No Evidence of Disease).

Please note I probably won’t post another blog entry until I have heard back from NCI about my TIL cell harvest results, which may be in the next two to three weeks. Until then: To NED!

 

I just got the call from the Fellow at the National Cancer Institute confirming that they want me to be part of their program. I was also told that my surgery to remove one or more tumors for harvesting lymphocytes is scheduled for Wednesday. Apparently the surgery is not a very invasive (and pervasive) surgery, so I would only have to spend one night in the hospital, if that.

So we’ll be flying down early tomorrow morning (getting flights was a bear because of all the catch-up the airlines need to do after this past weekend’s crazy number of flight cancellations), and returning to Boston on Thursday evening.

I’ll try to post more once I finish my round of meetings tomorrow afternoon at the clinic.

 

This was originally meant to be a blog entry about my upcoming radiation treatment, and the tattoos I now have (three small dots) to align the linear accelerator beam, among other things.

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

However, at the same time as I was getting set up to start radiation treatment for the end of August, I also had a set of CT scans performed to see if my cancer had metastasized (spread) elsewhere in my body. I got word Friday evening that some areas of concern were found in my scans, but that I would need to wait until Monday (today) to learn the specifics.

Needless to say, there was a lot of stress floating around our apartment, as we feared the worst from the scans.

However, in today’s meeting with the oncologist, we learned that what the scans showed was that my inguinal (groin) lymph nodes are enlarged. In particular, deep under where I already had about 20 lymph nodes removed in my right groin, there is a lymph node that is over 3cm in size (well over an inch), and a number of smaller lymph nodes nearby are larger than they should be as well.

In my left groin region are several lymph nodes that are in the 1.5cm range.

The CT scan cannot tell if any of these lymph nodes are cancerous, but 3cm is huge, and the probability that it is cancerous is almost certain.

The good news is that there was no sign of abnormal growth anywhere other than my lymph nodes, which my doctor says he still considers a regional manifestation, and not distant metastases. That means, for what it’s worth, that I’m still technically Stage IIIC, and not Stage IV.

The actual details of what happens next are still to be worked out once my oncological surgeon returns from vacation next week (I meet with him next Tuesday morning), but I am now scheduled for a PET scan on Wednesday, and the results of that scan will help determine what action should be taken with respect to the swollen lymph nodes in my left groin, such as getting a biopsy or simply removing them outright.

The much larger lymph node in the right groin, however, will definitely need to be surgically removed, along with the other enlarged lymph nodes in the vicinity of that one. The thinking is that I will only have one surgery to deal with nodes on both sides of my groin, and that will require a bit of planning and decision making next week.

So, instead of starting radiation treatment at the end of August, I will likely be recovering from yet another surgery, with lots of mandatory bed rest, and hopefully no drains (or only short-lived ones). I will then get my planned radiation treatment once my wounds have had time to heal for a couple of months.

That in turn throws a hoped for trip to the San Francisco area in late October into disarray, as well as plans we had to return to Bonaire for a short visit this fall.

In terms of my adjuvant treatment, the current thought is that I have not been on Sylatron long enough for it to necessarily have made a real difference yet, so I will likely be sticking with the Sylatron immunotherapy treatment for the foreseeable future (although probably suspended in the time around my surgery). At present, my Sylatron symptoms are the same as before – minimal appetite and significant fatigue. My white blood cell counts are still not great, so we’ll have to see if I take my next dose on Thursday or not.

I keep hoping that I will have some stability in my life, but every time I think I’m getting there, a new twist arises to completely change things. I am grateful the latest problem is “only” more cancer in my lymph nodes as opposed to cancer in my organs, but I would have been a lot happier if there were no new signs of cancer at all. It’s certainly a bumpy ride on the melanoma train.

I’ll post my next blog entry after my meeting with my surgeon next Tuesday. Maybe I will even add a video blog at that time (I am too emotionally drained right now to do a video blog with this post – sorry).