Most Phase 1 trial participants are either so sick that they have zero options or in some cases a phase 1 can be a new drug for those who have no evidence of disease. My situation is that the cancer continues to grow while I try to manage the growth along with the side effects from the new drugs. I always put on a good show and look nothing like the rest of the clinical trial groupies, but when every day functions of basic needs get out of balance then I tend to show my true colors of fear, even panic, sadness, anxiety, and much concern.
With the clinical trial process, there are two closets and strangely enough one has a view of the ocean and one faces another building. The first closet is what I call the DTD (door to death). The participants in this room cannot walk without assistance and have that appearance no patient wants to see. Of course, this closet faces the building as if the staff know it doesn't matter although it should. The second closet faces the ocean and was the place I visited for my long day. Also, the first closet is used for short infusions or blood draws. The rows of seats and pods are just too close together and are too close for my visual imaging or imagining. When feeling as I did full of side effects and cancer growth, I speak the truth. I answer with, "I'm not fine" and see their fear and concern in their eyes. It is not the concern for me as a patient, but fear their trial will be impacted. I get it, but the sights that surrounded me are not motivating and facing the wall of another building brings those walls closer with magnification of all my issues.
Key things to remember and understand when you are in a clinical trial are especially dose escalation:
1. Ask questions, and don't stop until you get your answer
2. Have someone with you at all times
3. You are a specimen so no one cares about the cancer unless phase 2, communicate if you know things are getting worse. Their focus is drug toxicity.
4. Ask what cell lines are they targeting (Ie: which cancer)
5. Ask what happened to the rats in the lab
6. Ask about the cohort, number of people in each and if drug works can you switch to different arm of trial, and know what your dose is
7. Dose escalation may not mean you will get a higher dose depending on what cohort you are part of.
8. Understand who is part of hierarchy:
Coordinator, project manager, doctor who sees patient, data cruncher, lab "rats"
9. find out if study pays for anything:
parking, meds etc...your insurance may have to pay for drugs, procedures, labs etc...
10. add to your job list a new job of clinical trial true real coordinator: ie pre meds, bandages for port, schedule, meds outside of trial drug since the one who you are introduced to
just makes appointments, your oncologist is the one who knows your history, clinical trial peeps don't know and really don't care
11. if trial needs you to get a drug which is offered for cancer, make sure it is covered for yours (ie: if it is not, as I was told at 4pm on a Friday, you pay for it or you don't get into the study)
KEEP IN MIND:
Understand that you are a guinea pig or hamster or lab rat and NO WHEEL will be provided, forget the sippy bottle of water too. You are on your own. You must do the work. You must ask the questions. You must work with the numerous people to make an appointment, get the drugs plus all the other people you normally make appointments.
Now, since I am a new clinical trial coordinator, I must follow up on my medication confirming dosage and other important information. Also, since the many staff who do their individual jobs on the clinical trial train and who don't communicate with each other even though I learned they are a very short walk down the hallway, I must now take the answers from what happened with the meds to the real coordinator, communicate the info from the scheduler, and add any info from the riddler who may be the only person who knows what is going on. The riddler continues to pose question after question without any concern for answers which I must find, ask others, and pass this info to the next person. Sound confusing? It is, but don't let the game get you down as you have access to new exciting drugs which may work!
So, if anyone is wondering why I haven't done much on any real life activities, you see that the answer is that I'm on the clinical trial train. I am riding this ride with the numerous side effects of drugs along with side effects of cancer growth. I have also been on the nausea cycle. More nausea requires more meds which results in more constipation which is compounded by the existing constipation brought by cancer growth. The key is to keep the nutrition in the body while having the body react as normal as possible. When blinded by nausea, the focus is lost and the goal of every day things go astray. In this situation, the priority is what most people take for granted, simply eating, drinking, and eliminating. Each step becomes a crisis and must be managed. The more common occurrence is a bowel obstruction, so focus has to remain consistent. All other day to day activities are put aside. This is when a spouse or significant other becomes critical for your every day survival. I'm lucky to have a great support team.
My clinical trial train is weekly visits to UCLA which anyone knows how painful that is, plus it is Santa Monica I need to visit now. My treatment schedule and windows of freedom have become smaller. Any available window of opportunity that I feel somewhat human, I exit immediately. This really puts into perspective free time and summer has a whole new focus. I will continue to find my sunshine today and every day. I hope you find your sunshine. It is important to find your sunshine!
The vicious circle of nausea: there are many drugs of nausea, but most cause constipation. Plus, when ovarian cancer is growing, most likely one issue can be constipation, bloating, and other gastro issues. It all becomes a mystery of what is causing what, but the focus remains the same.
Also, when the person asks you about this new drug causing issues with pregnancy and you tell the person you are too old, followed by the fact that the uterus is still missing according to way back in UCLA scan land days, so pregnancy would be impossible, but somehow this comment escalates you to directly to a pharmacist.
Can this be enough to handle for one day except I find out that immediate removal is necessary of our basketball hoop followed by a very quiet garage closing on car neighbor telling me to tell my kids (all neighborhood boys) to stop playing in front of her house. I ignore the fact that they are first not my children, second playing in the street, and third I will yell this direction to the group who appear to be in shock. Then comes the demand that I stay outside to watch all my children. I say "no" which I meant to day, "no, I can't because I have cancer" which doesn't make sense, but I didn't care. So, instead garage closing neighbor retreats to garage.
I have found a solution in ordering food for delivery from amazon fresh which is a combo of food, farms, restaurants, specialty shops all in one delivery. I encourage you to try this if you need this type of thing. Meanwhile, I hate to think of 8 weeks in a row of this type of project management except it is a project to stay alive. Since I am reminded that I am a specimen without a face, I will try to make every effort of showing my face tomorrow.
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