Unexpected Recurrence

My recovery from the ILP was long. By August/07, I had progressed to a walker, and was able to go to the cabin and lie on the couch there all day. By September, I was walking with a cane; by October, I was able to drive, and got a handicapped parking permit. By November, I was able to walk on my own, (albeit gingerly), and in December, I danced at our Christmas staff party. In January/08 I started physio, and by March I was ready to start a rehab strengthening program at the gym. Finally, I was back to normal!! It was so nice to be running into friends at the gym, and they would all be so happy to see how well I was doing.

Throughout the year, I had several biopsies. I guess after what I've been through, it's only normal to freak at every new lump and bump. But Dr. Pace has been fabulous. He would see me immediately, excise the new lump, and then call me with the negative results. I was starting to feel like the little boy who cried "Wolf!".

On May 9/08, I felt a lump about an inch to the right of my "shark bite", and on May 13 it was biopsied. (See? I told you Dr. Pace was Johnny-on-the-spot!) He called me on the 19th to say it was negative, but that the pathology reported it as panniculitis. I didn't care what it was, as long it wasn't melanoma! But I had just discovered a similar lump about 2 inches below the first one. As luck would have it, I had my 3-month dermatologist check up with Dr. Clarke on the 21st. She had read the latest path report, and didn't like the way it was worded -- "No definite evidence of melanoma". Plus, she said, something had to be causing this panniculitis, so she would check into it. By the 23rd, Dr. Clarke, Dr. Pace and the pathologist had decided that yes, they should probably investigate further. So on May 29th, I was back in day surgery to have more of the first lump and all of the second lump removed.

Thursday, June 19, 2008 would have been my first anniversary mark of being disease-free, and I was poised for a big celebration. But on June 18th, Dr. Pace called me with the new results -- Positive, both of them!! SH*T!!!! And to make matters worse, the margins were still positive!!! Dr. Pace faxed me the path report.

I called Dr. Giacomantonio right away, and faxed the path report to him. By Friday, his secretary called back with an appointment for a PET scan in Halifax for June 26th. I called the hospital here and got my CT scan moved up to that very day. So Jim and I left on the 25th, stayed with Jeanne and John, and came home on the 29th. I got the PET scan results by Thursday, and it showed no distant mets. THANK GOD!!! The groin area lit up from scar tissue, the knee area lit up from scar tissue and mel cells, and there was a "non-specific" nodule in my medial anterior thigh. Hmmm... I wonder what that could be????

Dr. Giacomantonio had left for a 3 week vacation, and wouldn't be back until mid-July, so I had to wait until he came back. I finally got a call to go see him on July 28, so I flew up for the day. Jim couldn't come with me this time, and Jeanne and John were here in Nfld on vacation, so I was on my own. But as luck would have it, Janet and Steve were in Halifax on gov't business, and were booked to fly home Sunday evening. When they found out I was coming up on Monday, they changed their travel plans and stayed in Halifax an extra day so they could pick me up at the airport, come to the hospital with me, spend the rest of the day doing lots of fun things (shopping, lunch, drinks on a downtown deck, waterfront walk, casino, [I won $80], supper at Steve’s Aunt Mary’s), and flying home with me that night. Isn’t my family just super?!!!

Anyway, here's what was decided when we met with Dr. Giacomantonio. First of all, I will not be having another Isolated Limb Perfusion at this point, and any proposed treatment will be done in St. John's and not in Halifax, all of which I’m quite happy about. Before any treatment can be started, I have to have surgery to remove the section of flesh on my leg where the new tumors were (right next to the section they took last year), and a skin graft, using healthy skin from my good leg. To me, considering what I’ve been through to date, that is a relatively minor procedure, and recovery should be only about a month. However, my surgeon, Dr. Pace is on vacation until Aug 11, and I have an appointment to see him on Aug 12. Then he and Dr. Rideout (plastic surgeon) have to coordinate OR time to do this procedure, so I’d say I’m looking at a good month before anything gets done.

The second phase is a systemic (whole body) treatment, and would be either Interferon or a chemotherapy called DTIC. Which one I do depends on 2 things: whether or not they achieve negative margins in the surgery (ie, get all the cancer cells), and whether or not a 6mm nodule in my thigh that showed up on the PET scan is cancerous.

They won’t do a surgical biopsy on that thigh nodule, as they can’t feel it, so they’d have to open my entire thigh to find it, which is rather radical if it turns out to be nothing. They may possibly be able to do a guided needle biopsy (find the tumor either by CT scan or ultrasound, and use that image to guide the needle to it, extract some fluid from it, and test it for cancer). If they can’t do that here, they wouldn’t send me elsewhere to have it done. It would come down to being just be an educated guess between my oncologist and the radiologist… Do they consider it to be malignant or benign? Given my history, I’m hoping that they’d err on the side of caution and presume it to be a tumor, but that’s not my call. Here are the various scenarios:
Negative margins from surgery + benign thigh nodule = Interferon
Negative margins from surgery + malignant thigh nodule = DTIC
Positive margins from surgery + doesn’t matter if thigh is malignant or benign = DTIC

What is Interferon? Everyone has interferon, which is a molecule that activates the immune system. The immune cells in melanoma patients fail to respond properly to natural interferon, so the cells are less able to fend off the cancer. Taking Interferon as a treatment essentially wakes up the immune system to recognize the cancer cells as foreign, and to fight them off. It’s administered intravenously 5 times a week. The side effects are wicked, (nausea, vomiting, major fatigue, fever and chills, cardiac problems, liver damage, bone marrow toxicity, thyroid dysfunction, etc), but vary in different people, and the response rate is only about 10%. Low, I know, but it’s better than 0%. That treatment would only be for a month, but if the side effects got too bad, I’d come off it before the month was up. Interferon can only be given if there is no evidence of disease.

What is DTIC? It’s a form of chemotherapy. Its real name is Dacarbazine, but it has a derivative called Temozolomide, which can be taken orally, and that’s what I’d be taking. DTIC is generally considered to be the most active single agent in patients with metastatic melanoma with a response rate of 8% to 20%. It is generally well tolerated with “possible” side effects being limited to minor nausea and vomiting. Bone marrow suppression is usually only modest, and alopecia (hair thinning) and fatigue are minimal, allowing most patients to maintain relatively normal function while receiving therapy, which could go on indefinitely. DTIC can only be given if there is measureable active disease present.

So for now, I just sit and wait for August 12 to come,when I see Dr. Pace. In the meantime, I feel and look healthier than I ever did before, I have loads of energy, and if it weren't for this recurrence, I'd be soon getting ready to go back to school. It's funny how I can feel so well, yet know there's a major takeover going on inside my body. Cancer really is such an insidious disease!!!