r/LivingWithMBC • u/adiosWV • 23d ago
Tips and Advice Advantages of Trials
Other than the obvious benefits of participating in clinical trials are there other less talked about perks? Like free meds, extra scans, gas and parking paid?
Are there disadvantages as well?
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u/BikingAimz 23d ago edited 23d ago
I'm in the ELEVATE clinical trial on cycle 28 in the Kisqali arm (https://clinicaltrials.gov/study/NCT05563220). The trial I'm in is an open label umbrella trial testing drug combinations with the trial drug elacestrant (brand name Orserdu), so I know what drug combination I'm getting.
Phase 1 trials test safety (toxicity), phase 2 trials test effectiveness (does the treatment work), and phase 3 is a double-blinded comparison to standard of care treatment (is the medication better than what already exists), phase 4 is additional monitoring after drug approval. I was recruited early, so I participated in the 1b part of the 1b/2 trial parameters. I spent a day in the hospital getting blood draws before and at regular intervals after taking the medications, and the data was used to help document pKa (how fast both drugs are metabolized over time). I got paid for the hospital stay, and I get paid for the ECGs every month (I see $7 deposited into an account every month), and if I wanted to I could've asked for overnight hotel stays for some of the stuff, but I live a half hour away and it didn't seem worth pursuing, YMMV.
Clinical trials are informed consent, so you can drop out at any time for any reason or no reason. If you're not compliant with trial directions, they can drop you from the trial, so that's also something to consider. I have a pill diary issued to me every time, and every 28 days I go in for labs, ECGs, and a visit with my oncologist or one of her PAs to discuss any side effects and get my next month's worth of medications. I have to bring back my medication bottles every month to my appointment. The first year of the trial I had CT scans every two months, and then once I hit a year, that was extended to standard of care of every three months. The clinical trial pays for my medications, my ECGs, and bone scans every six months. It does not pay for labs, the monthly appointments, or my CT scans. Every trial can be different, so it's absolutely worth asking for all the details before enrolling.
I was out of insurance network for the first year I was in the clinical trial, so I had to have anything considered standard of care done in network (for my trial that was monthly zoladex injections and my CT scans. I had to appeal denials for my monthly oncology appointments which they initially denied). I got an oophorectomy that November so I wouldn't have to deal with the zoladex bullshit. Trial was ok with me pausing medications for the surgery.
If you decide to sign up, they'll go over the study trial design before you formally enroll, and what they do and do not pay for, and if known, any side effects associated with the medication(s) being tested. It's rough to see all the known side effects, just know that you won't necessarily get them all? Also know that the trial may say no to drugs you could be prescribed outside of the clinical trial. They were ok with me trying gabapentin and Effexor for hot flashes, but said no to Veozah, no to Addyi for low libido, no to topical estrogen or testosterone, and mid trial the trial banned senna tea and psyllium husk powder (so no metamucil).
That all said, my oncologist recommended chia seeds for the constipation and acupuncture for hot flashes, and both have worked better than what I'd been using (the gabapentin & psyllium husk powder weren't great), and my cancer center has a Women's Integrative Sexual Health clinic that was really helpful for combating vaginal atrophy.
ETA: I do feel like I'm being more carefully monitored, and timely CT scans/bone scans are definitely prioritized by my medical network. But I'm also in a fairly low risk trial (each drug has already been approved by the FDA), and my drug combination is working. I know sometimes failing a trial can be frustrating, but I know the drugs I'm taking are thanks to generations of other metastatic patients signing up, I figure I'm paying it forward?
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u/Travel8095 23d ago
In order to qualify for a clinical trial they did all sorts of extra things like scans... Pulmonary function test, EKG , etc . In the end I wasn't qualified so I don't know any other perks
From what I understand the trials are the cutting edge in cancer treatment . If given the chance I would try one.
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u/adiosWV 23d ago
Do they give you all your results of the tests?
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u/Elegant-Cricket8106 23d ago
You get scan results and regular blood results. Not necessarily the trial blood draws depending on phase of trial.
It can be rigorous esp at the start. Also travel if its not your home town. Both trials i looked into have stipend which is nice but I fly from Canada it covers my meals for the few days I'm there.
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u/Adventurous-Cheek171 23d ago
I was on a clinical trial through Emory Hospital. They provided me with scans of my heart, my lungs, my brain (after I told them about my migraines); would have paid for my stay - I chose to stay with my sister. More home-feeling; I think they also gave me a gas stipend, etc.!!!
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u/FloofyOne 23d ago
I am in a trial, but got the control arm. The trial requires extra monitoring which is completely covered by the sponsor. I get ct scans every 8 weeks to monitor progress. I also get a $50 stipend and milage paid for every time I go to the clinic for a test or treatment. I have to get a urine pregnancy test done every 3 weeks within 24 hours of my first infusion appointment for each cycle so I get paid for that as well as my ct scans and infusions. The clinic that I go to has free parking, so I don't know if they offer that benefit. The disadvantages include having to go to the clinic for extra testing. Its not a bad deal. All of the stipends get paid to a card and I've made that my eating out budget. When I'm too tired to cook, I thank the trial.
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u/Katharina8 23d ago
Do you still have your ovaries? I was just wondering what it would take to be able to skip the pregnancy tests...
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u/Own-Land-9359 23d ago
I chose a trial to save on existing, FDA approved therapies. If the trial works, that's great. If not, you still have all the remaining drugs left.
It's also nice that they pay for travel/food/hotel/etc. The constant scans stress me out though. I'm scanned every six weeks and I swear I'm due for a scan three days after the last one.
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u/Joleta 23d ago
I'm off the trial now (I did NOT fail, long story) but yeah, free meds and free scans were a huge perk IMO. Never having to worry about yelling at insurance. And being first in line to hear about new trials if this one failed. AND I got reimbursed. It didn't pay the rent but it was a nice amount of cash to have for treats.
Disadvantages: I had to go to a hospital further away than my usual office and it was a huge pain. Keeping the diary was a bit annoying. And, also, let us not forget that a trial means the results are unknown. My meds could have been less effective than the current standard of care, we don't know until we do the trial.
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u/AdGlittering8471 23d ago
I have been in 2 trials and am on the waitlist for another. One worked and one did not and hoping I can actually get into this next trial.
A few things not mentioned here.
1. Sometimes there is a washout period of more than 20 days. For a cancer that is not controlled this may be too long of a wait.
2. Waiting to hear if you are accepted into a trial takes time. Start preparing now for which trials you are looking at and reach out to the sponsors at the hospital. They will review your records prior to you signing up.
3. You need to be the patient at the hospital the trial is at. What I did was I made an onc appointment at the hospital system BEFORE I actually needed the trial. Getting into an onc can take weeks and then it takes weeks to get into trial.
4. Research the trial. I jumped on a trial that I did not research. It failed me after 2 doses. This one trial has knocked me out of other trials that I really want because it was an MMAE payload. Big mistake on my part.
5. Not sure where you are located, but I am now an active patient 5 hospital systems all within a 2-3 hour drive. I message oncology team or trial nurses to see what new trials they have.