I shared recently about my decision process regarding a clinical trial for PALLAS and my follow up appointment at Sloan spending-the-day-at-sloan.html. I have begun my trial, today is day 2 of the medication.
What does it mean to be on a trial:
My oncologist recommended this trial to me and after careful consideration, I decided to be a part of it. With this trial there are no placebos. You know if you get the drug or not. Even doing a trial, you still get the regular standard of care. So with my ER/PR+ breast cancer (find out more about my diagnosis here --> thetimebetweenis.weebly.com/speaking-engagements--press--about-me.html) I get the 3-month "follow up" but only every 6 months do I see the oncologist - the other visit is with the nurse to maintain my Lupron shots (every 3 months) and I take daily hormone suppressor pills (astrezenole 1mg).
Being part of the trial means that I have more frequent follow ups, which since I am not working right now is not a problem. It also means I will be more closely followed by my doctor and these visits are kind of outside of the world of my insurance coverage (as insurance will only cover the regular visits of once every 6 months for the oncologist, etc).
Also with the trial, the drugs are provided via the study and not through my insurance.
How you join a clinical trial:
I had to sign in triplicate the study explanation along with my oncologist. This is basically boilerplate that explains the study, why it is being done, how it is being done and also explains the drug and its potential side effects. I originally was given this paperwork to take home and review after my follow up post chemotherapy on May 31.
I decided to sign up for the study in mid-July and submitted the paperwork to request my spot in the study at that appointment. I was approved to join the study in early August but was not able to visit Sloan to process my application until the end of August due to some vacations and other plans for the summer.
The process is usually done over a couple of days but my oncologist was able to get it all done in one day; but that meant I was at Sloan for the whole day.
First we had to re-sign the study documentation. Then, I had to give blood. At that point, my paperwork was processed by the study group and the computer randomized me to Arm B of the study (the portion that gets the drug). Obviously I am Arm B.
Arm A does NOT get the drug but does get regular standard of care and slightly more frequent follow ups. Arm B gets the drug, standard of care and I go every 2 weeks for blood work to ensure my levels do not drop too low and I see the oncologist every 4 weeks.
What about the drug?
I take the drug for 21 days straight and then 7 days off. At day 14, I get blood work and then at week 4, I go in get checked and pick up my next bottle of 21 pills.
For side effects (as much as I can tell at day 2) is that I am a little tired and I am anticipating that my levels will drop so I am going to work on maintaining my chemotherapy tips to avoid getting too sick and needing to potentially go to hospital. (See my tips here --> tricks-for-treatment.html).
If my levels do go too low with the monitored visits, I might be taken off the 125mg dosage and brought down to a lower dosage.
How it feels?
Nothing is like chemotherapy - chemotherapy is something that knocks you down and keeps you there. I am hopeful that this drug will not be as severe as chemotherapy and that I can withstand the dosage. I want to do all that I can to keep this cancer away. I was told I was "NED" (no evidence of disease) in December 2016 at my two week follow up post surgery and then did chemotherapy 8 rounds and 33+ radiation sessions. However, no one knows what can happen in the future.
I feel that if I am doing so much and have done so much to protect my future and to one day be a "survivor", I will do whatever it takes to stay healthy. Even if the medication can knock me out...
That is what I do in the time between. Have you been suggested to take part in a clinical trial? Did you decide yes or no? Why?
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