does a second cancer exclude from a clinical t... - CLL Support

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does a second cancer exclude from a clinical trial? forever?

bachplayer13 profile image
9 Replies

clinical trial question: does having a second cancer preclude you from ever being on a clinical trial? when my doc said he wanted to treat me. i asked about a clinical trial. he said that my thyroid cancer would prevent me from being on a trial. forever? what if my life depended on it? am i screwed forever? (unless they cure my metastatic thyroid cancer which hasn't happened yet). the first question he asked me when i walked in the door was how was my thyroid cancer. i thought it odd..... i did not ask him this question but i thought maybe someone here would know the answer or have ideas about this. i'm now in the process of reading about clinical trials and this article talks about the many reasons why a doc would discourage a patient from a clinical trial. i had no idea this was enlightening. but since this is at a major cancer center i would think he would be interested in my participating if it were possible. ncbi.nlm.nih.gov/pmc/articl...

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MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

I suspect that your Thyroid cancer would exclude you from most, of not all trials. However, should you need a specific drug you might be able it through compassionate use or the Right to Try programs.

bachplayer13 profile image
bachplayer13 in reply to MsLockYourPosts

thank you! that is what i had hear that president signed an executive order last year which allowed this as long as you were willing to release the institution from any liability should you die or have issues

I had thyroid cancer and had no problem getting into the Acalabrutinib (ACP-196) phase 1 trial. My thyroid had been removed and I had been successfully treated with radioactive iodine. It was no big deal.

bachplayer13 profile image
bachplayer13 in reply to

since you were successfully treated w/ rai does that mean it was curative for you? or do you still have rai resistant mets? my thyroid was removed totally but it had spread quite a bit, i had clean surgical margins but they had to remove 100 lymph nodes and sacrifice part of my neck muscle. by the time the found it had already spread to my lungs. the mets in the lungs did not respond at all to the rai. so i still have them. BUT. that being said i am on watch and wait since the rate of growth is slow. i am on a fairly stiff dose of levo to supress the mets but its not chemo at all but a synthetic hormone to continue normal physiologic function, i emailed my thyca doc about it. she said as far as they were concerned i had ongoing thyca and it was her feeling that i would be permanently excluded from any studies

in reply to bachplayer13

The RAI cured my thyroid cancer (papillary). I was quarantined for 5 days. The Nuclear Medicine Department ended up going with a radiation dosage researched in Germany for CLL patients.

I was diagnosed with CLL and thyroid cancer the same day. The ENT surgeon at first panicked and had the pathologist read the needle biopsies to make sure that the cells were not the same in my thyroid nodules and lymph nodes. I waited until the preliminary read was finished. If the cells had been the same, I would not have been able to leave the hospital. Three weeks later I was in Buenos Aires on business when the doctor confirmed that I had papillary cancer (75% probability) and lymphoma (55-75% probability). Further test results confirmed the results. The doctor was brilliant and an excellent surgeon. Many good thyroids have been removed due to false positives, the surgeon looked at the pathology slides and made the correct call -- papillary cancer.

bachplayer13 profile image
bachplayer13 in reply to

that's great news! happy that your thyca responded! best regards

cllady01 profile image
cllady01Former Volunteer

Are you still in treatment for the thyroid cancer? That could be a situation not compatible with a given trial. There are many exclusions for trials, sometimes, even age is an exclusion.

Radiation is often an exclusion factor for trials--and the length of time since radiation was administered can make that one go away over time.

Each trial is looking for the best (in light of what is being tested) individuals to fit what is a determined set of inclusion/exclusion factors.

So. while forever is a long time, sometimes the patient's situation and the trial inclusion/exclusion factors don't match up.

you can read for yourself the trials @ clinicaltrials.gov/ct2/search

the particulars of any given trial currently recruiting or ongoing.

bachplayer13 profile image
bachplayer13

thank you!

livinglifewell profile image
livinglifewell

I have been excluded from any trial because having a second cancer (neuroendocrine in my case) complicaates any potential reaction's explanation whether it was caused by x, y, or z.

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