Monday, March 25, 2013

I'm a Woman, What Do You Expect?

Women: We get one thing, we want another.

I received a phone call today that changed things once again! A research nurse from Sloan Kettering called and said that I am actually not disqualified from the clinical trial. Since the melanoma was an in-situ, I am still able to participate. I will be closely monitored by my dermatologist, and it will be noted in the research that I was diagnosed with an in-situ 1 year and 9 months after beginning the trial.

At first all I felt was relief! I was not being fired! (OK, I can be a drama queen. It felt like they were saying, Hey! You aren't healthy enough anymore! Get out!) Now I'm wondering what my doctor is going to suggest on Friday. I'm on a clinical trial to see if the drug will prevent melanoma from spreading, yet I was diagnosed with a new primary.

Is it common for melanoma patients to have multiple primaries? Do I continue on this trial even though whatever I'm getting is obviously not working since melanoma showed her ugly face again? Is the drug (ipilimumab) even supposed to keep our bodies from developing a new primary or does it attack the internal organs?

I turned to Google for answers. According to Cancer.Gov, "Risk of a second primary melanoma following diagnosis of a first primary melanoma is approximately 5% and is greater for males and older patients.") Um, I'm not a man, and I'm not old. What does this say about me?

I can't help but remember how "unusual" my doctors said my case is. There's the age factor: my first oncologist was amazed at how young I am, my second oncologist told me I'm his youngest patient. I have no family history. According to my first oncologist, melanoma only had a 10% chance of spreading to my lymph nodes, yet it did. Melanoma was found in lymph nodes on both sides of my body which is apparently very unusual. And now I have this new primary.

I'm a mysterious woman.

I just hope my oncologist has some answers for me on Friday, including boring scan results!

8 comments:

Marion@Life Tastes Good said...

Keep questioning everything! That is the only way to get answers. and you just might teach your doctors a thing or two along the way ;)! Gather all the info and listen to that little voice that is steering you in one direction or the other as far as the trial goes. I'm praying for answers and boring scans!

Thandi said...

Hmm, interesting questions. Hope the scan results are negative of any bad changes.

Melissa said...

This is why statistics only mean so much! A recurrence may only happen in 5% of patients, but if it happens to you, that's all that matters.

I am in a clinical trial comparing interferon to ipilimumab and I am in the ipi arm, and also had an in-situ melanoma after just a couple months in the trial. (I'm convinced the melanoma was caused by my radiation therapy, because it wasn't there before my radiation and I noticed it after.) Anyway, before I started the trial I'd asked my oncologist if the ipi would stop any new melanomas from occurring and he said that was another thing they were trying to find out through the trial, but the main purpose was preventing melanoma from spreading after stage III. I also thought my in-situ was going to get me booted from the trial, but fortunately it didn't. Glad you had the same outcome! Best of luck from here on out :)

Martha Woods said...

Praying for boring! Good luck to you.

TTjeanious said...

I am laying here, half high on Lortab, gingerly touching the dressing on my right side, covering my brand new four inch scar, the result of a second diagnosis of melanoma, a diagnosis I received three weeks before my four year anniversary. I was 27 when I was diagnosed with Stage IIIa melanoma. This latest one was classified as Stage Ia, but I am waiting the final results of the wide excision, because in that area was another, very very small dot, which didn't concern the doctor, but terrified me because it developed as the mole that I had turned into melanoma, and FELT just like the larger more obvious spots. It is terrifying. And I can't be soothed. My oncologist has printed out a statistic sheet for me, based on my age at diagnosis, and all my other factors, which greatly improved my "chances" of five year survival...and she swears this new diagnosis doesn't affect those chances...but it is not as comforting as it once was. I have done a really great job of getting over the daily fear, of living life without what I like to call the Eyor cloud of cancer fear. My mom died from cancer of unkown origin when I was 21 which is probably what saved my life. My first melanoma, I knew something was wrong, it itched, and although I had eczema, I knew something felt wrong, I had been having atypical moles taken off since 19 years old, yet, when I went to my primary care doctor, she told me it was nothing and not to worry about it. No dermatology referral, nothing. It was my experience of losing my mother that finally bothered me enough to go back three months later and demand a dermatology referral...which saved my life. I have come to view the fear and how it affects my life as my biggest enemy. All of the things that bring me to sobbing tears in the middle of the night, children I might not have, love I may never know, poetry I may never write, pain my father would go through in losing me, all of those things are so awful in their own right, but the fact is, there is no guarantee I won't step off of a curb and get hit by a bus tomorrow...spending the precious time I have, be it 1 day or 30 years in a constant state of worry, and fear, and depression is only robbing myself of all of the joy I know I have a right to experience in life. It's like eating a mango packed into a pill instead of slowly savoring each sweet, juicy, delicious bite. I say this, at 2:30 am, unable to sleep and sobbing, as I gingerly touch the gauze on my side, knowing full well that learning to live outside of the fear in and of itself is one of the hardest challenges I have ever faced, but has been the most rewarding. I have learned to forgive myself when I inevitably have sleepless nights, or weepy moments...but I know longer let them dominate my life, or scare me out of my current joy and gratefulness. I am praying for your healing, thank you so much for sharing your story, and allowing me to share mine. You are beautiful, and strong, and I truly believe, capable of incredible healing that far surpasses any statistics. There will be ups and downs, there will be bumps in the road, but the possibilities of healing are infinite and completely individual as is your joy. I pray for your joy and life experiences to always outweigh the fear! If you ever need any support, I can be reached at ttjeanious@gmail.com. Hugs, prayers, and love. TT

NYKaren said...

Hey Chelsea
I'm so glad you can remain in the trial!
Did you get your BRAF results yet? Sloan is pretty quick about that. My negative status was always niggling at me, so when I read on melanonainternational.org that someone negative retested positive, I asked Dr. Wolchok to retest me. Fast forward to today, I just completed 3 months on Zelboraf with pretty amazing results.
Thank you for all that you do,
Karen

rebekahgrace05 said...

Hey Chelsea! I just thought you would want to know, one of the ads popping up under this post - is, wait for it, a tanning ad! It's advertising tanning at home for $$ each month....anyways, I thought you would want to know!

Keep your head up!

Rebekah

Pam Bush said...

Yes, the statistics thing. I am on the short end of the statistics too. 5% chance of getting another primary? I am on #3 primary in 3 years! So much for statistics. Doesn't make me feel so great about the 20% chance of dying in the next 4 years either. I feel like I am on the short end of the statistics every time. Keep going Chelsea, you are doing such a wonderful job!! And so glad you are able to stay in your trial!!!! <3