Thursday, August 25, 2011

I didn't write an entry as soon as I got home from the dermatologist because my mind was spinning and I had a lot to think about. Things still haven't resolved themselves but I feel they are leaning in a certain direction.

My sister Deni was supposed to go with me to the appointment but she didn't feel well enough, so I went with mom. It was strange walking back into the place where everything began back in March. They took me straight back to a procedure room instead of a regular examining room, and I should have known then and there that something was up. Mom said it was because I'm a Melanoma patient now, so I get the "gold service". Yeah, right. It was nice to see my derm doc again, she was happy to see me and did a regular body to toe exam with her assistant. They let me keep my bra and panties on, which I was happy about. There was a mole on my back that she wanted to biopsy, and one on my face near my mouth that I've had for ages and ages. I had that one burned off once about 15 years ago but it grew back. Now I knew why they put me straight into a procedure room!

The shots in my back stung a bit, but like little tiny pinpricks, It was the big shot they gave me near the corner of my mouth that felt like a staple gun. I definately yelled out a choice word or two, then started laughing because they were laughing. Once I was all numbed up, the assistants started doing the biopsies, which I couldn't feel at all, and I tried to continue to talk to my derm while she was writing her notes. Somewhere she must have read that I'd decided not to do the Yervoy trial and she seemed surprised and concerned and asked me why. I explained everything, the family troubles, no car, no money, etc. Then I said "Well even if I changed my mind now, it would be too late. They only took people within a certain time after surgery and I think it's been too long now". It was the fact that she looked concerned on my behalf that worried me I'd suddenly felt as if I've made a massive mistake in letting my family convince me to do observation.

My derm and mom talked back and forth, discussing the benefits of observation vs clinical trials, and how many scans a year were too many vs too little for a stage 3b melanoma patient. My derm told me about how many patients she's seen with melanoma, and she's clearly had more experience with it than my oncologist, who is not a mel specialist, just a regular onc. She told me if it were her, she'd continue looking for a trial somewhere that would take me. She gave me the name of a Dr. Weber at the Moffitt Cancer Center in Tampa to email and see if I could still get in.

All the way home mom and I discussed my appointment, with my mom still stubbornly taking my onc's side, and me taking my derm's side. In the end mom said I could do what I wanted, it was my life, but I'd have to come up with money for gas, somewhere to stay, and money for food. Right now my bank balance is almost $-400.00 so unless I go begging, that's not gonna happen. Of course I came straight home and emailed Dr. Weber, then started looking up any kind of support I could get from the American Cancer Society. Mom says she would support me in whatever I decide to do, but I don't "feel" supported by her, whereas Deni gets on the internet and on the phone and starts gathering information for me. Also the other day I told mom I had pain in my right hand near my wrist and it's on my bad arm where I had the lymph nodes out. Mom sort of gave me this look at first like she was alarmed, then like she thought I was being a hypochondriac. Finally I just dropped the subject. Yesterday out of the blue she asked if my wrist still hurt and I said yes, then changed the subject. Honestly, at this point if there was a cyst or tumor there, I would bite off my tongue before I'd complain to her about it. Either she gets the message about Melanoma, or she doesn't. It isn't like other cancer. Period.

So anyways, I got an answer from Dr. Weber within 12 hours of emailing him and he said I had waited too long after surgery and no clinical trial in the U.S. would take me now, and observation would be the best and only option available to me now. I was crushed, and maybe just a tad relieved. I had no idea how I was going to come up with the money to travel and get the treatment. But moreso I felt like I had let myself down by listening to everyone else instead listening to the little voice in my gut saying "do the trial".

Here's another thing that really bothers me. My derm told me the Yervoy trial at Moffitt was a crossover trial, meaning that if they proved the drug effective, and they have, then all the people in the placebo group would be given the real drug at the end of the trial. My Onc NEVER told me that, and if I had known that, it would have made a difference. I might have fought to do the trial harder, mom might even have decided it was worth it because I would eventually get the drug either way. Now you see why I trust my derm more than my onc.

I emailed my derm back and told her what Dr. Weber had said, and I got a reply within a few days. She said she was going to check around UF and see what she could find that might be available to me. If Yervoy has been approved, I asked her, then I should be able to get it somewhere, maybe even in Gainesville. Also there's been a new drug approved this past week, and she mentioned checking on that as well. That was last Thursday and I haven't heard back from her since, plus I haven't heard any pathology on the two biospsies she did, so I'm going to email her today and see what's going on. If she tells me there's nothing else out there for me, I will trust her and be satisfied. I wish she were an oncologist. The one I have now is a nice man, but I think he's a bit dated in his Melanoma approach.

At some point I'll need to have my wrist looked at, just to make sure it's nothing to be worried about, but it hurts me every day and it's not going away. If it's just nerve damage from my arm, fine. I just want to know. Anyone that's had cancer understands the panic the first year everytime something doesn't feel right. Keep your fingers crossed for me.


  1. You have options. Please listen to your inner voice with this. It is usually right. I was in a clinical trial that paid for everything including mri and tests. Of course close would be the best for you. Stage 3b has study options. you dont want to wait till stage 4. randi

  2. Becca, speaking from someone who has to pay for all her scans, etc, for the Yervoy/Placebo trial in NYC, along with travel costs, hotels, etc, it is EXPENSIVE. It makes me cringe just thinking about what we have spent so far...This trial is supposed to last for 3 years. Will I be able to participate that long? I honestly do not know. I decided to do the trial for two reasons. 1) I'm a bit of a control freak and wanted to feel certain I was doing everything in my power to try to keep this disease away. and 2) because I hope someone else can benefit from the research later down the road. But honestly, some days I wonder if I am only receiving the placebo....That makes me no different than you! I have to be at peace with that though...and I am.

    Try to find peace with your decision... You are staying up on the latest news, being proactive on monitoring your body, and you are starting to sound stronger. Regardless of what you decide, try to find a peace of mind.

    Have you considered finding a new oncologist? It might make you feel better to have someone who is more up to date on this cancer.

    Thoughts are with you!

  3. i happened on your blog the other day... i am not as advanced in my fight with melanoma. yet, i can certainly relate to "family" not getting it. i completely agree you have to follow your instincts. and as far as your wrist- if it is right at the bend where it hurts that is the pressure point for your spleen (kinda like a big lymph) so dont procrastinate too long on getting it checked. personally, i'd rather be paranoid than let this beast get any more of me because of fear i am being paranoid... hope that makes sense.