After spending weeks trying to get what we thought was an infection under control, it became obvious this was a much bigger problem. I made an appointment at the H. Lee Moffitt Cancer Center to have a biopsy and a CT Scan which the doctor ordered. It's offical: My cancer has returned. The same type, a Cutaneous Squamous Cell Carcinoma of the skin.
The problem began as only a dime size ulcer only to take over the right side of my face starting under my chin and growing to a 6 inch X 3 inch oval climbing up my neck. If you are a regular here you know I've always said I was one of the lucky ones because everyone I have met has had at least one reoccurance...and now I join the group I was happy not to be a part of.
Now for a plan. Not so good news here. Frankly I was rather shocked. Squamous cancer of the Head & Neck which I had before is different than Squamous of the (exterior) skin. I'm told there is typically a very high cure rate if caught early. You cut it out and use chemo and radiation if necessary. That would be great if I wasn't dealing with a compromised immune system and my primary care doctor didn't think it was an infection allowing it to grow so large, AND if I hadn't already had 60 grys of radiation that really destroyed all my skin in the entire radiation field. I was left with extreme scarring and tight skin. Because of the past surgery and radiation they have been deemed not a good idea at this time, unless I want to cut my face off. For now my only option seems to be chemotherapy. Which is typically not used as an only resolve in a case like this and does not have a very good cure rate at all. Yes, I had myself a good cry over all this information.
My doctor at Moffitt sent me to see another doctor, Dr. Russell who was beginning a new trial using a combination of two drugs, a shot typically used for patients with Hepatitis-C (Peginterferon Alfa-2b) which I don't have and a pill used for breast and colon cancer (Capecitabine) again I don't have. Since my options are limited I thought, "Sure why not?" Trials are free right? WRONG!
I received an automated phone call a few days later telling me my prescription was ready and I could pick it up at a cost of $3,300. THIS HAS TO BE A MISTAKE!!?? And that was only the chemo pill. Nothing was mentioned about the cost of the shot. I'll get to the cost breakdown in a minute...hold on to your hats!
My next appointment was only a few days away and I made some calls looking for more opinions. I was lucky enough to find Dr. Edward Kim, my oncologist from MD Anderson. He has moved on to Levine Cancer Institute in North Carolina. Believe it or not it was through Twitter that I found him. The day I asked the Twitter account for Dr. Kim's information I was contacted within hours. I gotta say, I LOVE Twitter. It has save me several times. By the next morning I had his nurse on the phone getting my information and asking me to forward my medical history from the last time he saw me including what has been done at Moffitt. I trust Dr. Kim and the following day he spent 30 minutes on the phone with me going over what again I was told were, "Very few options."
Some of what he told me I had heard from Moffitt. I was hoping for better news. It seems that Squamous Cell Carcinoma is a common cancer, but the way mine has reacted and grown so quickly adding the fact that my options are limited because of the breaking down of my skin just makes my problem very uncommon. In fact so uncommon there aren't a lot of options because the drug companies don't want to dump money into a cancer problem they can't make a return on their investment. As a business person, I get it. As a cancer patient I think it's BULLSHIT! This is why my doctor a Moffitt is experimenting with drugs that aren't traditionally used for Squamous Cell Skin Cancer.
I think Dr. Russell was a bit shocked at my reaction. He said this didn't seem to be a problem for his other patients. I had to hold my tongue...well my forearm if you know what I mean. I could only think either these patients were millionaires, they were so desperate thinking they might die they would try anything, or they didn't understand this was not being covered by insurance and didn't ask enough questions. I think being a seasoned cancer patient must be a doctors worst nightmare. I've seen what happens when I don't ask the questions and the outrageous bills come in. Remember the $10,000 and the overnight stay at the hospital to just pull TWO TEETH? Yes, insurance paid the majority of it, but I was still left with a 20% co-pay.
At this point you all might be thinking...What about other opinions?? Why aren't you going back to MD Anderson? I needed Dr. Kim to reassure me I had very few options. MD Anderson is not in my current insurance network therefore I'd have to foot 100% of that bill and travel expenses are a killer. It ended up like Vegas. I left all my money there last time and my financial options are limited. Remember I've had 20 years of medical issues and until now I have been able to pay my bills without too much of a problem. But last time my bill was over $250,000 (20% of that was mine to pay) which I just paid off! Plus I had the expense of flights and an apartment for 9 months. I have made contact with Sloan Kettering in New York. I was told they are in my network, but again flying back and forth on a commercial plane with so many other people with my compromised immune system and finding a place to live during treatment will be an issue. They might have a trial there for my type of cancer.
At this point I have never felt more defeated in all the years. This new Obamacare is a mess. There are some good things to come out of it, but not if you really need to use your insurance. I have been on Medicare for a years now and recently switched to a Medicare Advantage Plan. Too much detail to discuss now. The bottom line I need an answer.
I found some things online that discussed Anti-Antigen Therapy I found interesting, but apparently it has not been tested on humans, but the trials with animals have been 100% successful. This is the kind of trial I wish I had access to:
SO...what am I going to do? This thing has grown so quickly and is more painful than any pain I've ever had. I made an spot decision when Dr. Russell kept asking me this same question. Starting tomorrow I begin with Erbitux Chemotherapy. Where did that come from?? Well, I was on Erbitux after my tongue surgery along with radiation in 2007. This drug works better when used with radiation, but that option is out. Unfortunately I was supposed to have 6 rounds of chemo when on I the 3rd I broke out in a rash of all rashes. It was EVERYWHERE! Front, back, in, out you name it, it was red. Then why would I try this again. To buy some time. To do more research in hopes to find a better answer. Maybe even another doctor, or cancer hospital. Or maybe, if Dr. Russell can find a way to bring the cost down on his trial I could try it. A little good news there. I was told that the $3,300 was a mistake because this is considered a Medicare Part B drug and not a Part D drug and when they ran it through the system that way it came back at ONLY $600 a month. Ok better, but holy shit! Plus $4,000 a month for the shot? The numbers still need work.
I can't help but thinking, "Wouldn't a cancer hospital know the difference between a Part B and a Part D drug? And if I was running a trial, I would have all that information ready and even find ways to help the patients financially if I really believed in the trial. Now I wonder if this trial was just something he pulled out of a hat one morning over coffee or is he actually going to save my life even if he bankrupts me in the process?"
This is going to be a very difficult ride this time. I'm so very tired of talking about cancer. It's done nothing but rule and ruin my life the last 7 years. I know I shouldn't complain because I'm still here to bitch about it, but even that is growing old and so am I!
Thank you all for your love and support. Wish me luck tomorrow. I've had a great life and I've been so close to death I could smell the dirt, but for some reason I'm still here. I gotta say, Dying is easy, it's living that is the hard part! I don't want to sound like a quitter, it's never been my nature...but I'm really ready to go at this point. i don't want to suffer anymore. From this point on I think it's only going to get worse. It's not a good sign when the positive outlook is gone. Even I know that.
Peace B
