I took part in a clinical trial. Have you?

Posted by Erin @Erinmfs, Thu, May 30 7:05am

Several years ago, I volunteered for a research study at the NIH. It was an important experience! I wanted to share how to go about it. Check the NIH website periodicaly as they post new study opportunities. Follow the application procedures. It was all expenses paid for me, they paid my flight to the Washington DC area, and I was given a place to stay. It was neat 🙂

https://www.cc.nih.gov/about/news/newsletter/2019/spring/story-10.html

if you search http://www.nih.gov for ‘Join a Study’, many opportunities are displayed
https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=join+a+study&commit=Search

@Erinmfs

I haven't seen a thread regarding AllofUs, so I'll start one 😉

Has anyone else signed up for the All of Us Research program? I did, and I was contacted recently to fill out another survey, 3 surveys actually.
I just saw this online, its a data browser, shows the conditions currently in the research program. It's interesting, only 60 with myasthenia gravis for example.
https://databrowser.researchallofus.org

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Have not heard of this, but I’ll surely read the website. Thanks!

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I haven't seen a thread regarding AllofUs, so I'll start one 😉

Has anyone else signed up for the All of Us Research program? I did, and I was contacted recently to fill out another survey, 3 surveys actually.
I just saw this online, its a data browser, shows the conditions currently in the research program. It's interesting, only 60 with myasthenia gravis for example.
https://databrowser.researchallofus.org

REPLY

Hi Erin, What a great topic to start. You'll notice that I merged the 2 discussions you started related to clinical trials into one discussion thread. I think it would be great to get a conversation started where people can share their experiences about taking part in studies and clinical trials. It can also be a place where people can get answers to questions if they are thinking about taking part in a clinical trial.

@user_chdb5e8ac Erin, let's start with you. Why did you want to take part in the study at NIH? Who suggested that you participate?

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@colleenyoung

Hi Erin, What a great topic to start. You'll notice that I merged the 2 discussions you started related to clinical trials into one discussion thread. I think it would be great to get a conversation started where people can share their experiences about taking part in studies and clinical trials. It can also be a place where people can get answers to questions if they are thinking about taking part in a clinical trial.

@user_chdb5e8ac Erin, let's start with you. Why did you want to take part in the study at NIH? Who suggested that you participate?

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Thank you for helping with the organization.

I took part in the NIH study for 2 reasons

I hadn't been to Mayo yet, and I didnt agree with the diagnosis I was tagged with. I wasnt getting help with the numbness, tingling and difficulty breathing that I was experiencing. I was very frightened by the care I was receiving. Forced on me. My MG was not addressed. MG wasnt diagnosed yet.

I also wanted to find my siblings. I was adopted but I had found limited information. I was accepted in the Schizophrenia sibling Study. I knew I had siblings, but no contact information was available.

The NIH study took DNA samples and mapped my brain actually. Researchers identifying DNA for Sz and psychosis.

The outcome of the NIH study was very interesting, NIH says I dont have schizophrenia because I dont have the negative symptoms plus I have more fluid in my brain than other study participants. Neurology at Mayo says I dont have hydrocephalus.

I've had amazing brain tests, I'm happy to say that researchers even measured my acqueduct of sylvius in Bethesda's lab 🙂 test included
Functional MRIs
Magnetoencephalography
Nuclear PET

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@user_ch53e9c09 Interesting. When I worked for my medical company I was sent out to draw blood and get other information for the schizophrenia study plus sisters study which is sibling sisters to see about breast cancer in genetics ,environment and other studies Now nih is studying this wonderful.

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@lioness

@user_ch53e9c09 Interesting. When I worked for my medical company I was sent out to draw blood and get other information for the schizophrenia study plus sisters study which is sibling sisters to see about breast cancer in genetics ,environment and other studies Now nih is studying this wonderful.

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The study is still available if anyone out there wants to see if they qualify. There are other studies too going obviously.

One neat thing I learned in all this is that water in your brain is measured and that unless you flunk a mini mental status test, fluid on the brain isnt a problem. I haven't flunked one yet.:-)

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@Erinmfs

Thank you for helping with the organization.

I took part in the NIH study for 2 reasons

I hadn't been to Mayo yet, and I didnt agree with the diagnosis I was tagged with. I wasnt getting help with the numbness, tingling and difficulty breathing that I was experiencing. I was very frightened by the care I was receiving. Forced on me. My MG was not addressed. MG wasnt diagnosed yet.

I also wanted to find my siblings. I was adopted but I had found limited information. I was accepted in the Schizophrenia sibling Study. I knew I had siblings, but no contact information was available.

The NIH study took DNA samples and mapped my brain actually. Researchers identifying DNA for Sz and psychosis.

The outcome of the NIH study was very interesting, NIH says I dont have schizophrenia because I dont have the negative symptoms plus I have more fluid in my brain than other study participants. Neurology at Mayo says I dont have hydrocephalus.

I've had amazing brain tests, I'm happy to say that researchers even measured my acqueduct of sylvius in Bethesda's lab 🙂 test included
Functional MRIs
Magnetoencephalography
Nuclear PET

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That sounds like an overall good experience for you, Erin. Interesting how the study also helped you will your goal of discovering your family medical history and putting some fears to rest.

If I understand the timeline correctly, you became a Mayo patient after the results of the study testing but before myasthenia gravis (MG) was identified or diagnosed, right? Did the results of the study give you the confidence to seek a second opinion?

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I'd like to bring in fellow Connect members to this discussion about clinical trials. @crstyday40 @burrkay @notaround @fairway5 and @pauldale4 have all mentioned that they have taken part in, declined or considered taking part in a clinical trial.

Why did you decide to seek out a clinical trial?
Did you go ahead with taking part in the trial?
What was your experience? What would you share with others?

Liked by Erin

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@colleenyoung

That sounds like an overall good experience for you, Erin. Interesting how the study also helped you will your goal of discovering your family medical history and putting some fears to rest.

If I understand the timeline correctly, you became a Mayo patient after the results of the study testing but before myasthenia gravis (MG) was identified or diagnosed, right? Did the results of the study give you the confidence to seek a second opinion?

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That's right. The NIH advised me to speak to a brain surgeon, and that's how I came to Mayo. Seeking a brain surgeon consult.

By then my eye had some ptosis and I was referred to neuro ophthalmology. My MG medication comes from neuro opthamologist.

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I volunteered for a post pancreas transplant research project measuring the effectiveness of the transplant. The project is not over yet. It checks mainly activity and blood sugars by several avenues over a period of time in intervals. I wanted to join this research for several reasons: (1) pancreas transplants are still so rare that many people still believe they are not done; (2) results of pancreas transplants are still unpredictable, with some people having completely reliable function and many still requiring frequent glucose testing and injections; (3) my road has not been smooth and I believe my experiences have a great deal to offer to researchers for future transplant patients; (4) the research is neither invasive nor difficult; and (5) expenses are paid. I have already learned that I do not have the BRCA gene and feel some relief from that knowledge. I am open to questions. Thank you for this opportunity to share.

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@2011panc

I volunteered for a post pancreas transplant research project measuring the effectiveness of the transplant. The project is not over yet. It checks mainly activity and blood sugars by several avenues over a period of time in intervals. I wanted to join this research for several reasons: (1) pancreas transplants are still so rare that many people still believe they are not done; (2) results of pancreas transplants are still unpredictable, with some people having completely reliable function and many still requiring frequent glucose testing and injections; (3) my road has not been smooth and I believe my experiences have a great deal to offer to researchers for future transplant patients; (4) the research is neither invasive nor difficult; and (5) expenses are paid. I have already learned that I do not have the BRCA gene and feel some relief from that knowledge. I am open to questions. Thank you for this opportunity to share.

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Wow, that is neat! Thank you for sharing your pancreas transplant story. You're right, this is exciting news, congratulations on your transplant!

Liked by 2011panc

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Responding to @colleenyoung I tried, but the after considerable typing, the web page shut down.
Did you get the response?

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Responding to @collenyoung I'll try one more time!
My wife is a stage IV metastatic NSCLC patient with amplification of HER2 mutation commonly found in Breast Cancer, but also known to be found in Lung cancer patients. Her initial surgery was at Mayo Rochester in May, 2015 and she currently sees an oncologist locally here in South Carolina with annual followup with our Mayo oncologist in Jacksonville.
In the summer of 2016, unfortunatley her cancer had progressed and she was restaged to stage IV; a molecular study was ordered on a new lung biopsy by our Mayo oncologist, and she was subsequently accepted to the My Pathways clinical trial sponsored by Genetech.
However, since the trial was not available near our residence in South Carolina, our local oncologist applied for and obtained off-label approval of the drugs to be administered locally.

* Why did you decide to seek out a clinical trial? See above

* Did you go ahead with taking part in the trial? See above

* What was your experience?
-since beginning the infusions in December of 2016, my wife has responded beautifully! Her energy level is not great, but she manages to keep up with most of her normal activities.
– This trial uses a doublet of drugs which have been proven harmful to the heart in some cases. Therefore, it is important to align yourself with a cardiologist early in the administration of the infusions of the My Pathways trial. We did this and the sponsor insists on an echocardiogram following every third infusion…the results are studied by the oncologist and if approved, the infusions will continue.
– we just returned from our annual followup with our Mayo oncologist in Jacksonville, and the word is "stay the course"…keep doing whatever you are able.
– It is important that your oncologist understands the many nuances before determining the clinical trial. In our case there were two options (My Pathways or Match), and the oncologist informed us what the correct order of the two alternative trials available to us that needed to be followed, in case she were not responding to the drugs of the selected trial. Some trials will not permit application if the patient has had another specific trial prior…TALK TO YOUR ONCOLOGIST!

* What would you share with others?
– I am her caregiver and handle most of her correspondence and I read everything I can find regading the latest science relative to her cancer.
– If you have not had a molecular study done, ask your oncologist about it. Too many times, the patient's cancer progresses because the assumption is made that the tumor was the "same old lung cancer (in our instance)" and it indeed was not! Thankfully, we were not too late discoveing that our treatment was not the right one for her cancer! We had an excellent and very astute and caring oncologist at Mayo and we consider him our hero!
– Our support by family and friends is excellent. Our grown children and grandchildren all live a day or more drive from us…but we manage to see them often with frequent trips either direction! Our circle of friends is large and supportive with lots of activities!
– If you are a believer, trust in God…life on this planet is His plan-not ours! Prayer is most important in our opinion!
– we both have a strong belief in God and pray daily for his blessings and guidance.
– If you are not getting the treatment you need, don't be afraid to go elsewhere!

REPLY
@Erinmfs

I haven't seen a thread regarding AllofUs, so I'll start one 😉

Has anyone else signed up for the All of Us Research program? I did, and I was contacted recently to fill out another survey, 3 surveys actually.
I just saw this online, its a data browser, shows the conditions currently in the research program. It's interesting, only 60 with myasthenia gravis for example.
https://databrowser.researchallofus.org

Jump to this post

Hi Teresa…thanks for sharing this. I will check it out!

REPLY
@burrkay

Responding to @collenyoung I'll try one more time!
My wife is a stage IV metastatic NSCLC patient with amplification of HER2 mutation commonly found in Breast Cancer, but also known to be found in Lung cancer patients. Her initial surgery was at Mayo Rochester in May, 2015 and she currently sees an oncologist locally here in South Carolina with annual followup with our Mayo oncologist in Jacksonville.
In the summer of 2016, unfortunatley her cancer had progressed and she was restaged to stage IV; a molecular study was ordered on a new lung biopsy by our Mayo oncologist, and she was subsequently accepted to the My Pathways clinical trial sponsored by Genetech.
However, since the trial was not available near our residence in South Carolina, our local oncologist applied for and obtained off-label approval of the drugs to be administered locally.

* Why did you decide to seek out a clinical trial? See above

* Did you go ahead with taking part in the trial? See above

* What was your experience?
-since beginning the infusions in December of 2016, my wife has responded beautifully! Her energy level is not great, but she manages to keep up with most of her normal activities.
– This trial uses a doublet of drugs which have been proven harmful to the heart in some cases. Therefore, it is important to align yourself with a cardiologist early in the administration of the infusions of the My Pathways trial. We did this and the sponsor insists on an echocardiogram following every third infusion…the results are studied by the oncologist and if approved, the infusions will continue.
– we just returned from our annual followup with our Mayo oncologist in Jacksonville, and the word is "stay the course"…keep doing whatever you are able.
– It is important that your oncologist understands the many nuances before determining the clinical trial. In our case there were two options (My Pathways or Match), and the oncologist informed us what the correct order of the two alternative trials available to us that needed to be followed, in case she were not responding to the drugs of the selected trial. Some trials will not permit application if the patient has had another specific trial prior…TALK TO YOUR ONCOLOGIST!

* What would you share with others?
– I am her caregiver and handle most of her correspondence and I read everything I can find regading the latest science relative to her cancer.
– If you have not had a molecular study done, ask your oncologist about it. Too many times, the patient's cancer progresses because the assumption is made that the tumor was the "same old lung cancer (in our instance)" and it indeed was not! Thankfully, we were not too late discoveing that our treatment was not the right one for her cancer! We had an excellent and very astute and caring oncologist at Mayo and we consider him our hero!
– Our support by family and friends is excellent. Our grown children and grandchildren all live a day or more drive from us…but we manage to see them often with frequent trips either direction! Our circle of friends is large and supportive with lots of activities!
– If you are a believer, trust in God…life on this planet is His plan-not ours! Prayer is most important in our opinion!
– we both have a strong belief in God and pray daily for his blessings and guidance.
– If you are not getting the treatment you need, don't be afraid to go elsewhere!

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@burrkay, thanks for persisting after losing your original post. I really appreciate the indepth experience you shared as do many other members, I'm sure.

I'm confused by one issue. You mention that the center nearest you was not participating in the trial My Pathways, however, your local oncologist was able to get off-label permission to administer the trial protocol, correct? Does this mean your wife's data is not included in the study?

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