Any cautionary tales about participating in a clinical trial?

[Anonymous]

Tell me what I don't know or know to ask. Recently diagnosed with cancer and it looks like an ongoing trial will spare me from chemo, if not permanently, at least for a while. The medication is not new, just the use of it in this fashion. The trial has been going on for a couple of years. How is the patient experience different? Thanks.

[Anonymous]

Will you get the drug or could you be in a placebo group,?

[Anonymous]

I mean, you are chosing an experimental and unknown treatment instead of the standard of care. Unless it is a rare and dire cancer I’m not sure why you would do that? Or is the trial testing two approaches that are already being used?

[Anonymous]

What will be the impact for you of delaying chemo until the trial is over?
What treatments if any are possible during the trial?
If you do not improve can you drop out?

[Anonymous]

Anonymous wrote:Will you get the drug or could you be in a placebo group,?

It's unethical to not give this person medication so they will get treatment. She gave no info on the med so it could take dozens of forms. If they post the protocol (link to the clin trial info on clin trial . gov) I can answer questions. Or, if they post some other trial for that med but for not their condition, I can probably answer questions.

That said, when you are "failing" on a trial, they switch you to chemo instead of killing you. Also, you will likely get the best care in the world if it's for a brand drug. The company is invested. Similarly if you are in a "comprehensive cancer center" or an institution trying to get that designation.

Try "Cancer Support Community" for resources that are not a stranger on the internet.

https://www.cancersupportcommunity.org/find-location-near-you?gad_source=1&gad_campaignid=21861776616&gbraid=0AAAAAD_Bl0jgmoHOqGd5fHCG1fgQQivUo&gclid=CjwKCAiA_dDIBhB6EiwAvzc1cJoQcR-WdLCQufvqLpi_O0sJKPm7Sum68IDwf0B8YwSrZXMhMQcvFxoCpGAQAvD_BwE

[Anonymous]

Anonymous wrote:What will be the impact for you of delaying chemo until the trial is over?
What treatments if any are possible during the trial?
If you do not improve can you drop out?

Having any medication probably will still allow for chemo with or after treatment.
Study protocol only which OP can stop at any time.
Yes.
(clin trial policy expert)

[Anonymous]

Anonymous wrote:

Anonymous wrote:What will be the impact for you of delaying chemo until the trial is over?
What treatments if any are possible during the trial?
If you do not improve can you drop out?

Having any medication probably will still allow for chemo with or after treatment.
Study protocol only which OP can stop at any time.
Yes.
(clin trial policy expert)

This assumes that clinical trials are still following federal ethics guidelines… who knows!

[Anonymous]

I would not experiment with my health/survival.

I would choose the treatment that has the most scientific evidence behind it.

Your trial is trying to see if the new treatment is as good as the established one (ie, standard care).

Chemotherapy just means chemical therapy (ie, a drug). Many immunotherapies have worse side effects /risks than established chemotherapies.

I think you are acting emotionally, not rationally.

[Anonymous]

There are cold caps, OP, that can prevent much hair loss with some chemo protocols.

[Anonymous]

I have participated in a clinical trial, though not for cancer treatment, and my mom has as well with me as a caregiver. I had a good experience, but was subjected to a lot of bloodwork— TONS of it—, and I say that as a long time blood donor. Also lots of questionnaires and very detailed reporting of every encounter with any kind of provider, any pill or medicine that passed my mouth, etc. Took a Tums after eating spicy food? Exactly what day, what time, what dose? What symptoms were you feeling when you took it?
My mom was/is in a trial for a treatment trying to prevent cancer. There was no question of whether she got the treatment or a placebo, just a lot of forms to fill out and an annual tracking followup. The big difference in her care is that she has had an extra person — the study nurse— helping schedule appointments, checking in, etc. there is more hand holding and involvement in her care because they are making sure she gets the tests, appts, etc that are needed for the study.
Good luck with whatever you decide.

[Anonymous]

I’m deciding on participating in one (BC medication that might prevent mutation) but it would involve scans ahead of time: bone, PET, MRI, CT (and as someone who has had cancer treatment, I don’t love the extra radiation). Going back to the oncologist every month for blood draws and exams, the long follow-up…I fear it will impact my quality of life, but I also want to do everything I can to prevent recurrence (and there’s a 50% chance I won’t get the drug being trialed). These are not easy decisions.

[Anonymous]

My neighbor participated in a clinical trial for a brain tumor after the standard treatment didn’t work. Sadly, the clinical trial protocol didn’t work either.

[Anonymous]

OP here. Thanks for the opinions. I am still in info-gathering mode and (since this is DC) I have friends who work in this area so I am reaching out to them for expert opinions; I'm also asking my PCP her opinion. I was asking about patient experience mainly. To answer one question, yes this is a comprehensive cancer center but so far I don't see what the big deal is about that. I don't need an effing harp in the waiting room like we're in heaven. I'd rather that my appointment run on time.

There is no placebo or no aspect to this trial--everyone is getting two drugs and then monitored. One of these drugs has shown to have excellent results in the past; the second is used for another kind of cancer usually. It's the pairing that is investigational. Still gathering intel...

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:What will be the impact for you of delaying chemo until the trial is over?
What treatments if any are possible during the trial?
If you do not improve can you drop out?

Having any medication probably will still allow for chemo with or after treatment.
Study protocol only which OP can stop at any time.
Yes.
(clin trial policy expert)

This assumes that clinical trials are still following federal ethics guidelines… who knows!

Companies will follow the real rules b/c they want to get their drugs on an international market.

[Anonymous]

Find out if there are drug interactions with anything you plan to keep taking. Might need changes.
Find out side effects of the medications you would be given.