I have been very remiss in updating about my clinical trial experience taking Ibrance the stage 4 breast cancer drug despite being an “early stager” (Stage 3A with old staging, 2B with “new” standards of staging – no I was not restaged but I did research it and like to bring up the differences of the staging guidelines in the timeframe of a year and change from my initial dx).
At this point, I am almost done with the trial – which is just mind boggling to me. So, as we know from my experiences on my pilgrimage, I believe I am cured by Saint Padre Pio who continues to advocate and heal people. While on my pilgrimage many things became clear to me, including the decision to continue with the trial despite I guess having some say, “Why not drop all the drugs and just live” but I will continue with my hormone suppressor and my clinical trial anyway because it cannot hurt and the trial is almost over...
I am currently in month 21 and almost 1/3 of the way done with this month. There are just 24 months in total. Despite the side effects being multiple pages long, I have been quite lucky and have tolerated the drug at full dose all of these months. I just want to keep knocking on wood and saying thank God.
If I run fever, I need to go to hospital. I have taken 2 trips over these last 21 months for full complete bloodwork, chest xrays and the works just to be sure the fever was not caused by an underlying infection that my body could not fight due to the suppressed immune system that is part and parcel with an inhibitor pill like Ibrance. I am actively thanking God right now that I was able to go to Europe and continue to live without having to go to the hospital – I hope this streak can continue til the trial ends (prayers welcomed to help me do that!).
I also have found that I am tired but I do not truly know if this is from the meds or just my normal tiredness as I think I was born tired. Through the trial, I have had multiple follow ups – much more than the normal “life after cancer” routine. I have had appointments in the beginning of the process every 2 weeks – blood work one visit, oncologist appointment the next 2 week session with pills being given to me for the month only.
By month 3, this changed to once every 3 months with bloodwork and oncology visit combined. In addition to these appointments, I also needed to do my 3 month Lupron shots (until I removed my ovaries in November 2018) and of course that appointment never lined up with the clinical appointments so it meant 2 visits every 3 months AND surgical follow up every 6 months (which I just graduated from this past December; though I still have my yearly mammo and ultrasound on the remaining breast each December).
So my post cancer treatment phase has still been full of appointments, checks and that connection to the hospital and staff. There was no abrupt break up so to speak. For some, this might be a terrible thing but I felt it helped me cope and continue to move forward before I had confirmation that I was cured to believe that I was anyway.
The decision to sign up for a clinical trial is not easy; there are risks for everything we do in terms of health and wellness even before we become cancer patients. Just taking a Tylenol comes with tons of warnings and side effects that my surgeon pointed out to me that if we read the warnings, we would not even take that for a headache. Were you offered a trial? Did you decide to take part?
Since my Ibrance trial, I have also taken part in the Fit2Thrive study which measured and encouraged physical activity for cancer survivors, a study on intimate relationships and fertility post cancer (obviously, the fertility was not a requirement for me as I was lucky enough to have children before hormone positive cancer) and also a recently acquired hereditary study where I will be rescreened for genetic components for cancer despite already having done a screening in 2016; so many things change that it is important that I get another chance to have this screening done.
So did you take a trial or sign up for a study? Why or why not?
Clinical Trials & Me...
When I was close to finishing my active treatment (8 rounds of chemo and 33 rounds of radiation) my oncologist recommended I take part in a clinical trial.
I was so not sure of what to do. I mean, I had just finished the marathon of breast cancer stuff and with 2 kids, losing my job, and just you know life and wanting to get back to some semblance of normalcy I questioned my sanity for considering a trial.
The drug is called Imbrance and the trial is called Pallas. I was given the paperwork to think about and then went about trying to readjust to you know life.
But the thought of the trial was nagging me - I read the papers multiple times and could recount the 5-7 pages of potential side effects of the drug. I knew this drug was used to treat metastatic breast cancer but I was not metastatic - the point of the study is to see if this drug should be part of standard of care for early stagers as there is a plan for helping breast cancer patients stay progression free and recurrence free for as long as possible.
I was leaning towards signing up for the trial of which I would have a 50/50 chance of getting the pill or not (there is no placebo). My husband and mom were like, "Are you nuts?" and you know, I am. I signed up and got the pills and now I’m 12+ months in to a 24 month study and I have been so damn lucky.
My wbc (white blood cell) count is low so if I run fever I do need to go to hospital for work ups (which knock on wood my head my missing breast whatever) has only happened once - I am still taking the full dose of the drug (some people get it reduced to help with side effects).
So my post cancer life includes no period since February 2017, daily antihormone pills, once every 3 month lupron shot and for the next 12 months 3 week’s on imbrance, one week off.
Oh and working out, running 2 businesses, blogging, being a mom, a wife, a daughter a friend a sister and whatevs.
Look for a future post about what I wish you knew about living life as a cancer patient / survivor and about follow ups. Oh and because I am so basic, I made two videos about this and could not decide which one to use -- so here's the other one :). Which is clearer / better?
Also, did you get offered a trial? Have you been on one? What can you share about it? Thanks! Super Mom Xoxo
Super Mom BC Eradicator - connect with me via the icons above :). Thanks! XOXO LISA (my secret identity ... )