Yeah, this is the stuff that drips into my veins via the port. It takes 90 minutes to do the IV. I am on the higher dose-the non standard dose. I'm the human guinea pig to see how a body responds to the higher doses and to see if this stuff can prevent the cancer from coming back. Basically, the guy who did the surgery said I have a 50/50 chance of the cancer coming back. Nasty Melanoma likes to come back in other places-like your brain, breast, bones, liver. Wonderful.
So, there is a pair of breeder mice out there worth a billion (yes you read correctly) that have had their immune system bred out and replaced by a human one. I'm not a big fan of the animal/pharmaceutical thing but once it comes to saving your life, you often ease your standards. It's certainly hard for me to reconcile helping to acclimate a retired research lab beagle and then turn around and depend on these special mice to create a drug my body needs. I'd like to say it's even--I help those animals who can be released and in exchange I get the meds I need. I know it's fuzzy logic but it has to work for me.
Few people can pronounce the drug name...it's always funny watching the nurses struggle to say it when they confirm it is my treatment. Treatment days are LONG.....a doctor appointment to go over how I"m doing and to check my lymph nodes and then down to the treatment area. It takes about an hour for the meds to come up from the pharmacy-they don't prep it until I'm there......the list price, if it wasn't paid for by the clinical trial, is about 30 grand per IV. Thankfully I'm in the trial. So, treatment days run about 4-5 hours. I need to be observed for an hour after to make sure I'm ok.
I am now done with treatment earlier than expected. Due to the Pituitary Attack, I am no longer able to get the drug. My doctor conferenced with just about everyone who is involved and the decision was no more treatment. I have to hope and pray I got enough of the drug to kill any cancer cells. Since it worked *too well* and attacked the pituitary, doctors are confident that it took care of any other cancer cells. My last two rounds of scans looked good and so does the bloodwork. I am still part of the trial and will be watched for the next 20 years.
So, to address the question I get asked all the time: NO, it is not chemo or radiation. It is better, according to the doctors I have met. The usual side effects are not as bad, I keep my hair, and I don't puke. I could, as I was informed by my doctor, get pregnant after treatment (gave her the look of horror and she quickly explained I could choose to get pregnant.....and we all laughed) except now I can't since ovaries no longer work due to the Pituitary Attack. She was practicing on me with that phrase because she is dealing with a lot of 20somethings who are dealing with melanoma.
It is called Immunotherapy. My friend who worked in the pharmaceutical field has a great way to describe it. Basically my immune system is taught to get busy with a seek and destroy mission aimed at cancer cells. Your cells are supposed to self destruct when they get funky but cancer ones sometimes don't....they hide and claim to be OK when your immune system questions them. This drug calls Bull$h!t and makes sure to destroy the cells. Pretty cool if it works.
My doctors tell me it will change that 50/50 more toward 70/30 in my favor. Maybe less, maybe more. We won't really ever know. I could have already been in the 50% where it doesn't come back. It could come back.
I have to admit, it is a strange feeling knowing what could possibly kill you. No, I don't mean it in a depressing way, but in a reality check way. I could get hit by that bus, but I know there is a chance this could kill me and that's a strange thing to walk around with. I have no way of describing it to you . I hope it doesn't and I live a long cancer free life. I belong to several Melanoma blogs and you get that reality check when you read about someone who will no longer blog or run their charity because they just died. That makes for a hard rest of the day for me because I just faced my own mortality.
So, I put my faith in the Ippi drug and all of my doctors and hope for the best. In the meantime, I am very aware that every minute is precious and I need to choose wisely how I am going to use that time. None of us get out of here alive so we should all consider how we live our lives and how we treat the people who are here. Make the most of it.
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