Trials and tribulations!

As the lizard Cancer baby disapates, I am once again forced into this Cancer planning job. I’ve been in multiple trials and everything varies depending on the pharmaceutical company from reimbursements to exceptions. When I was in the vaccine trial, the pharm company was definitely more flexible or was it due to the study coordinators pushing issues on my behalf. I’ll never know. Today I was greeted with the results of the numerous blood tests I had on Thursday at UCLA. The reality is this: the immunotherapy was starting to work. My tumor marker declined and another marker called LD (lactose dehydrogenase) which is the tumor marker for those who don’t have gyno Cancer also declined. Why I should believe anything otherwise when I have over 4 years of data to support that this marker directly corresponds to the disease progression or regression? So, now because an exception was not made in the trial for me especially after Jim’s 8 persuasive emails, my face to face, I was forced out of the trial. The implications are grandiose of this lack of effort by study coordinator or pharm company. I cannot enter any immune trials again until FDA approves drug. My chance is gone for allowing my body to kill the Cancer without killing it with chemo. Now this is again another frustrating place to be especially when I am reminded that either the chemo will kill me or the Cancer according to the docs. All we can do going forward is use the existing contacts we have and pursue this with insurance for off label use of the drug. Another scary experiment in dealing with insurance and multiple things out of our control. So, I must move to the positive of what has happened since I was kicked out of the trial.

We were informed on  Wednesday night that the insurance approved the drug. This was all due to Jim’s escalation with his work, Cisco. I realize how lucky I am to have Jim who fights for me every single day, and that he works at a place where they believe based on facts that I should get the treatment I deserve. What I am told later at UCLA does not surprise me. There are many who are not so lucky. What happens to these people that cannot afford the treatment, are too sick to escalate their right to the drugs, or who have insurance that stamp denied without any thought…they die. This is the horrible reality. So, all these statistics that we are presented about Cancer must be put into perspective because how many of those patients didn’t have the same chance as I have. Because the situation had turned for me with fluid growing rapidly and even Paracentesis unable to do much to eliminate the burden, I phoned my mom to come to be with me. I was back to the invalid state on pain meds unable to drive, move, eat, etc…the breathing became difficult and honestly very annoying for me since I knew that drug combo would work.
Even though I was upgraded at UCLA to my own room with my favorite nurse, the UCLA bureaucracy once again caused huge delay in the treatment. It took 2 hours to actually get the drug due to a click of the button not being done or something as simple as that. So, with the traffic and infusion time, it was a delightful 12 hour day! My mom went with me and came up with the brilliant idea for the driver who takes us to LAX to drive us. I was so uncomfortable that my moaning and groaning would not make for ideal driving on the 405. Then, the next day was another outpatient procedure. Total of outpatient surgeries that could have been prevented due to insurance approval was 3. Recovery from those surgeries that could have been prevented was 3. All time and effort, plus pain and suffering from the procedures which could have been prevented by a stamp of approval for a drug I got on 8/6 is immeasurable. They removed 3 more pounds of fluid. Grand total of fluid removed 12 pounds. On Saturday, I woke up to losing 2lbs more and the drug began to work. How do you end this adventure? Go to the Temple, followed by Nordstrom shopping with Brixton who needs his own blog, and a great dinner in Laguna Beach at the Lumberyard.
Now I’m on the count down to the bar mitzvah. I am so thankful that I am starting to feel better and so happy about feeling better. I cannot explain it!  Please find your sunshine in every day! You will be happy you did! Don’t get caught up in the race even though you may be the driver, taking your kids place to place. Turn on the radio, blast their favorite song, watch them smile OR better yet ask them a question and really listen to their answer. My next request is to say, “thank you”! I mean thank the cashier, gardener, your friend, your family, your parents, your child. One word can go a long way. I thank Jim every day for never giving up on me, the system, and the treatments. Without his efforts every day, who knows where I would be? He is my biggest fan and I love him for that! Please remind your kids both old and young that it is important to say thank you. Honestly, I can count on my one hand, Alex’s friends who thank me for even the smallest things! Two words can go a really long way!
For more info about cost of cancer drugs-check out:

Hagop Kantarjian: High cancer drug prices are harming patients because either you come up with the money, or you die.


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