Monday, March 5, 2012

1 day off Zelboraf, 1 week before TIL, and so much change: MELANOMA YOU ARE NOT THE BOSS!

just venting to make sense of all that is about to go down....

OK...So based on what happened to me last time when I went off Zelboraf, Dr. Kim asked for a waiver for me to stop Zelboraf 1 week before TIL rather than the 28 day protocol. These are the little things as to why I LOVE my doctor. He just did it and knew and I feel like I have true advocates on my side.

Back to the Zelboraf Confusion thing for me and the MELANOMA IS SO FRUSTRATING THING. It's truly a mind game. So, last time I got scanned, I was disappointed because essentially I was living life with little melanoma pain but just side effect Zelboraf pain. In my head I was SURE the Zelboraf was working more than the scans showed. I was so confused as to why it would show stable and not regression and even growth in some places when I was active and back in my life. THIS IS ANOTHER REAL REASON TO GET SCANNED AND NOT NEC. GO ON HOW YOU FEEL.

Now that I'm off Zelboraf, it hits HARD that melanoma is REALLY in there and I NEED to do something about it. Yesterday was my first official day off Zelboraf and ALREADY, I'm having difficulty walking up my stairs etc. etc. Now I feel that I match my scans, but I'm confused as to what Zelboraf actually was doing and how fast the pain could come back to the point where now, I limp like I was doing before. After only 1 day off! Can you believe the speed of this monster? Can you imagine if I didn't have Zelboraf? Zelboraf isn't a pain medication. It's mind boggling to me.

My hip melanoma and spine melanoma pain and my mobility are all showing signs of being debilitating again after only 1 day off Zelboraf.....It hit me today EVEN harder that WE NEED A CURE AND WE NEED ONE FAST. They are so close on many levels to having even more options but that is just it. So close, NOT A CURE. This walk in NC and I may even do the Houston one keeps my eye on the prize and motivates me to look ahead and get through all this gruesome treatments ahead of me.

I def. would not have made it the 28 days off Zelboraf and side effects and ALL, I do realize at least I am lucky to have had Zelboraf at all. I had these big plans since I was off Zelboraf this week that I was going to go exercise as I wouldn't have joint pain, as much sun sensitivity, and def. not as exhausted...BAM! woke up this morning and realized even though I know this....but REALIZED, my MELANOMA is trying to kill me. I HAVE TO FIGHT. I DON'T HAVE ANY OPTIONS. I may lose my independence by the end of the week and I was planning on being FREE from a drug with so many side effects. NOT SO FAST, MELANOMA SAYS.....In one day, It's trying to paralyze me. CAn you believe that? I just can't.

Maybe that is the whole Miracle in the this Miracle drug as it has given me quality of life time after I sorted through and was able to manage all those awful side effects but I did. You do walk around wondering though..... You wonder a lot no matter how positive of a person you are. How long will this drug work for me? This is the reason I need to keep my razor sharp focus. This is the reason I get extremely overwhelmed on a daily basis with too many moving parts as I feel EVERYTHING that happens on a cellular level inside my body that no body does. To everyone else, aside from now the obvious thinning of my hair, I still look the same. I'm the only one that feels the intimate changes and it is this reason that keeping things simple with very few moving parts and change is so crucial for me to get well.


Please pray for me I get in this trial and something at the last min. doesn't disqualify me. I am having anxiety now as I'm so close to being there. Please pray that if I go through all of this, IT WORKS FOR ME! IT'S A BIG WEEK OF ANTICIPATION and my pain is back so with the pain comes some worry. Off to meditate and focus some. Feeling these feelings people is where I get my fight. Sharing because I know you care. I hope you all have a more than wonderful week.

Things in this world of MELANOMA...Nothing is constant and everything is rapidly changing. Just trying to stay focussed. Sunday here I come....NED, YES I WILL SEE! WALK IN NORTH CAROLINA I WILL BE THERE AND giving my everything to see this to a CURE! Go away you uninvited BEAST! GO AWAY!


  1. Hi Jen!

    Just wanted to let you know I sent an email to your yahoo account (I'm a friend of Leslie V.'s), since it probably went to your junk mail folder.
    Tania Hovel

  2. Praying for you. (friend of your cousin, Kelly)

  3. Hi Jen....

    I am soooo sorry you are going through this. My prayers for you and well being.... My mom is a breast cancer survivor. I wish I would have known of her cure when my grand mother was diagnosed of pancreas cancer which took her.... If you are interested, look it up. It wont hurt to read on it. It is all natural, and cheaper then this medicine. Thousands have been cured on this. It was created by a German MD ( scientist as well) His name was Max Gerson MD. His daughter continued his legacy. This is not allowed in the USA as it can not be patented by the pharmasutical companys. Sad to say but cancer is a billion dollar industry in the country. But MD's in Japan & other countries in Europe and Canada have opened up this treatment. I watched a documentary about a man who did an investigation on what Charlotte Gerson had to say.That the body's immune system will not only heal one disea,but it will heal ALL diseases in the body. My mine was blown away how now Japanese hospitals & clinics are incorporating the Gerson Therapy to heal MOST cancers, with NO SIDE EFFECTS. YES Jen!.....My mothers Dr's could not understand what she was doing, and how it was possible for her tumor on her left breast to just be GONE. She refused chemo, and surgery, and here she is w/ us......What it comes down to it, is that our immune system will fight the majority of the MUTATED cancer cells when we feed it the micro nutrients,enzimes,Vit's like Vitamin K,C,B6 and so many more, protein,calcium, iron. Did you know we can find ALL the protein in Veggies and fruits- raw? YES we can! Dairy suppresses the immune system. And when we eat red meat it produces a certain acid that the mutated cancer cells feed off of it. WOW, so much to mention...... I encourage you to read up on the Gerson Therapy.... Here is their website.... Try reading up, it can't hurt to read up on it. I hope I was of some help. I and my son have been on the therapy, and so far since I have been on it for 30 days, I no longer take Clariton D for allergies, and no longer take my asthma inhaler. YAY!.................Take care, Blessed Be!................................Regards, Flora

  4. Oh, sorry.... Here is the Name of the Documentary I recommend you watch.... Dying To Have Known............. I recommend you watch it, it can't hurt to listen and watch. It will surprise you. Take care, Flora