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Topic: Your personal stories about clinical trials

Forum: Clinical Trials, Research News, Podcasts, and Study Results —

Share your research articles, interpretations and experiences here. Let us know how these studies affect you and your decisions.

Posted on: Sep 24, 2019 02:55PM

Moderators wrote:

We're looking for stories about clinical trial participants to shed light on this unique experience. If you feel up for it, plaase share your story for inclusion on and help others in your shoes understand what they can expect if they are exploring the option of joining/participating in a clinical trial.

Thanks so much Medicating

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Sep 24, 2019 03:55PM - edited Sep 24, 2019 03:58PM by LeesaD

I started a clinical trial this past January 2019. It's called the ABC trial (aspirin for breast cancer). It's to see if daily aspirin as an anti inflammatory can prevent reoccurrence in node positive patients. My MO had approached me about it at our January appointment and my cancer center participates so they got me all set up at the one appointment. I just take a 300 mg pill daily. It's either aspirin or a placebo and I don't know which it is. Doesn't take much effort. I meet with the trial coordinator at the same appointments as my MO and she gives me the new pills. They do bloodwork same time my MO does. I keep a daily log of the time I take the pill every day. Hope I'm contributing in some meaningful way to help conquer this beast. Here is the link to the trial if anyone is interested in participating. The trial coordinator who I work with said that for some reason it is very difficult to get women in the USA to participate in clinical trials.

Oncotype Score 3, 2/4 Sentinal Nodes micromestasis so pushed for ALND for 'peace of Mind' and surprise found 2/14 positive axillary nodes Dx 2/3/2017, IDC, Right, 3cm, Stage IIB, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 3/27/2017 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/17/2017 Lymph node removal: Underarm/Axillary Chemotherapy 5/9/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/2/2017 Hormonal Therapy 9/7/2017 Arimidex (anastrozole), Zoladex (goserelin) Surgery 11/17/2017 Prophylactic ovary removal Surgery 1/30/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Sep 24, 2019 04:59PM Moderators wrote:

Thanks, LeesaD for sharing!

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Nov 12, 2019 11:19PM kdrake1007 wrote:

I started participating in the MonarchE trial in January 2018. This is not a blind trial, you are either randomized into the drug arm or you are not. I am receiving the drug (abemaciclib, ie Verzenio), 150 mg twice a day along with the AI (anastrozole). Keep a log of the time I take each dose daily and any side effects.

The MO visits start at every 2 weeks for the first 2 months, then move to once a month for the next 4 months. Then you have 2 phone visits between office visits for the remaining 1.5 years. I thought I would appreciate the extra screening/bloodwork and visits with the MO, but I'm finding that it is keeping me feeling like a cancer patient.

The side effects are manageable, but I kind of miss coffee. When the documentation says to avoid grapefruit, trust it!!

I was surprised at the financial burden. I am still charged for each office visit as they consider it standard of care. I appealed this, as I felt that these visits were solely related to the trial and that I wouldn't have had them had I not been participating. I lost that appeal. It was really more about the right thing as opposed to being able to afford it as I've met my deductible for the year and the insurance company is paying for the visits. But it could be a problem for others with high deductible plans or lesser coverage.

Overall, I'm glad I'm participating and there is always the possibility that it will keep a recurrence away.


Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/25/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/8/2019 Arimidex (anastrozole) Targeted Therapy 1/30/2019 Verzenio
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Dec 9, 2019 04:57PM momwriter wrote:

In 2012 I participated in the Phase III Aphinity Trial to see if adding the drug Perjeta to Herceptin protocol in adjuvant treatment for early stage diagnoses provided benefit for triple positive BC patients. It was a double blind trial- everyone was administered either the drug or the placebo and didn't know which. My MO assured me that this was a promising drug and risks were not high though maybe slightly higher for heart issues and some digestive side effects. But my thought was that pioneers before me took the risk with Herceptin and without them I might not be alive today.

I still don't know if I received Perjeta or not.

Overall I liked being on the study. I got lots of special treatment. I got my own room for treatment rather than the ChemoLounge with everyone else. So I'd come in and bring my laptop and chill out. I could order free meals (which I did ) and the nurses were amazing

The downside was that administering an extra drug (perjeta) took extra time. In addition there were more appointments-- I had to have many more echocardiograms and blood labs than I would have, even after treatment was done. But for the most part, that made me feel well- cared for and monitored I liked knowing my labs. I also had to meet with the research nurse as well. But I liked everyone and didn't mind.

I am very grateful for having the wonderful care that I had and that these trials are helping people every day.

Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/19/2012 Mastectomy: Left Surgery 11/5/2012 Lymph node removal: Left, Underarm/Axillary Chemotherapy 12/3/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/22/2013 Herceptin (trastuzumab) Radiation Therapy 5/20/2013 Hormonal Therapy 6/15/2013
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Dec 9, 2019 11:50PM SpecialK wrote:

I have participated in several studies and a vaccine trial since diagnosis. The first was a study conducted by the School of Nursing and Moffitt Cancer Center and sought to quantify whether mindfulness and meditation could reduce stress hormones. The were two arms - one arm that attended classes and were taught mindfulness techniques for six weeks, and the control arm which did not. Both arms had blood and saliva tested to measure cortisol and inflammatory markers, as well as documenting state of mind through questionnaires and subject reports. I was in the arm that attended classes, and found that I have used the teachings as I have proceeded through rather extended treatment. This trial took place right at the end of chemo, but I still had the remainder of the year of Herceptin, a recent diagnosis of lymphedema, and a number of reconstructive surgeries yet to go, so it was very useful for me as an individual to learn ways to mitigate stress as complications arose. Here is the trial and a summary:

I also participated in a Phase II vaccine trial aimed at Her2+ recurrence prevention. This trial was not local, so I did have to travel at my own expense, but I was willing to do so to potentially derive personal benefit, and to advance the science and help to possibly bring a vaccine to the market. I had previously lived in the Washington, DC area and had a number of friends who were very willing to help by having me stay with them, and my college aged son lived there at the time also. I worked the airline miles system, and got some inexpensive flights. I was fortunate enough to have excellent insurance during active treatment so had little out of pocket expense, I felt like this was not only worth doing, but also worth the cost. I too was inspired by the people who came before me and paved the way for use of Herceptin, and wanted to contribute in a constructive way. I traveled from Tampa FL to Washington, DC - a total of 7 trips in the first 6 months - one consult for suitability, physical exam and consent, and six series of injections. I then returned 4 times a year for boosters and labs, for a two year period. Subsequently I was followed by phone for the remaining two years. My local oncologist supplied notes from my routine follow-ups with him. This trial was interesting because two vaccines were being tested, and both had control arms. In each group, roughly half received the vaccine plus an injection of GM-CSF (similar to Neulasta), the control group only received the GM-CSF injections. The vaccine arm enrollment was determined by tissue typing, as is done for organ transplant. If you were one tissue type (A2+) you were relegated to a particular vaccine - the GP2 vaccine - which was the arm I was in, the other tissue type (A2-) received the other vaccine - which was AE-37. This was a blind study so there was no way to know whether you were in the control arm or the vaccine arm, but at the five year point I was informed that I did receive the GP2 vaccine. I knew I would be in the GP2 arm because I knew in advance I was A2+ thanks to a good friend who is a histopathological tech for the organ transplant folks here in Tampa. She drew my blood and ran the typing for me. The linked summary was very positive about the potential for risk reduction with the GP2 vaccine, it is a bit frustrating that it appears no closer to becoming available. I believe there were some issues with linking the two vaccines together in a common trial with different pharma companies, and differing results from the trial. Here is a link and summary:

I have also participated in a number of studies through Dr. Susan Love's Army of Women. Studies included satisfaction with reconstruction, the reFLECT study which measured physical activity, quality of life, and cognition, BrainBaseline which was another cognition study, the MyEnvironment study, and a number of questionnaires to support enrollment in the organization.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Dec 10, 2019 04:33AM Moderators wrote:

Thank you, ladies, for sharing your stories!! Heart

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