• To join or not to join that is the question

    Asked by lafaymom on Monday, March 18, 2013

    To join or not to join that is the question

    I feel that when I was approached to have "the talk" with my Doctor he discussed my cancer but I was then pushed into the nurse who was very anxious to get me to enter a Clinical Trial. I would like to chat with someone with Triple Negative Breast Cancer what their experience was like and what they felt l about being in a study or what they did if they didn't enter the study. I would like the Doctor to just tell what he thinks is best for me and they just keep saying enter the study. So does anyone have any experience like mine?

    9 Answers from the Community

    9 answers
    • attypatty's Avatar

      Dear Lafaymom,
      My onc encouraged me to participate in a clinical trial and I agreed. I am glad I did. Not only do I feel that I am doing something positive to help other women but I also feel that I got more attention. I had extra blood work, extra time and information from the study nurses, and extra follow up. I am not triple negative; in fact, I am the opposite - I am triple positive (well, nearly so - the Her2 was borderline). But that was exactly what they were looking for in this trial to test the addition of Herceptin in cases like mine. So if you have the chance to join a clinical trial, I say go for it! You may never know the millions of women who will be in your debt for what is discovered in your trial.
      Fight On,

      over 3 years ago
    • AlizaMLS's Avatar

      Dear lafaymom,

      Hi. I'm Aliza, a BC patient, ER+, PR+, Stage I. I'm also a Medical Librarian (retired) who still does research and referrals here for people on this site and elsewhere. I'm very cautious when it comes to treatment (thought I was lucky with my BC in that I didn't need chemo ( but I'm also not only a BC pt, but also a Lupus patient, so I joined this club, so to speak, already immunocompromised.

      I'm a cautious person. I would before making any decision, even though other people here may have had wonderful experiences in clinical trials, take yourself for a 2nd opiniion with another oncologist (get all your records, data, etc.) and do this asap. That's probably the best advice I can give you.

      Sometimes clinical trials work out beautifully. My former (late) father in law was in remission from Hodgkin's disease for about 25 years before he died and he was in one. Not everyone has these kinds of experiences. Do some research and go for that 2nd opinion.

      Best of luck in whatever path you choose to take.

      Warm wishes,

      over 3 years ago
    • leepenn's Avatar

      Hi there -

      I was in ISPY2 - I had a "big" chemo plus an experimental drug.
      The upsides are just what attypatty mentioned.
      You get more attention, you get the latest greatest, and you get to know you're helping the research engine for treating cancer.
      Additional upside? I had a complete pathological response, which is the holy grail in triple negative. That pushes my risk of recurrence to something like 5% rather than like 30%...

      The downside? I'll never know if the drugs given were necessary. I'm now in premature ovarian failure... and I don't know if I'll have long term side effects from the experimental drug or not. Honestly though, those are just the downsides of chemo. In fact, I find myself pretty bummed by how much chemo aged my body. I feel robbed of like 5 years of still being a fit and youngish athlete. I'm strong again - don't get me wrong - but there's no doubt that my body is different...and I miss how I felt before treatment. I had to have chemo either way...so it's not like I could've skipped chemo if I had opted out of the clinical trial. Ok - that's me just whining about being a cancer patient - not about having entered the clinical trial.

      Anyway - take a look at the drugs recommended with and without the trial and ask questions about the differences.

      If you can, have surgery AFTER chemo (which is most likely if you do enter the clinical trial) as that lets you know whether the chemo is working or not.

      In the end, I'd favor the clinical trial. There's a peace of mind about SOMETHING good coming out of all of this. Does that make sense? Also, you get some extra MRIs and so on DURING chemo, and that gives you DATA about how your cancer is responding to the drugs.

      I wish you the best of luck. Please feel invited to email me offline. My tumor was triple negative... Oh - and if you'd like more... here's my blog.


      over 3 years ago
    • CAS1's Avatar

      Clinical trials are not like they used to be. In todays fast paced medical environment many drugs are skipping the phase II portion of a trial because we are so much better at determining what are safe drugs and doses especially in breast cancer where the majority of cancer funding is dedicated. Clinical trials today are safer than they have ever been so please don't take someones experience of say just a few years ago..You are helping find the cure. And you are watched far more closely.

      if the nurse is part of your Docotors office then your Doctor is running the trial. He is therefore in favor of you in the trial. If you are at a top notch cancer facility then I think you are in very good hands. They only put people with the best chance of a good possible result in a trial because they need the best outcome to push the trial along.

      over 3 years ago
    • SueRae1's Avatar

      Dear lafaymom,
      I will be entering a clinical trial, if the lord is willing and my platelets stay above 75, on Wenesday for advanced TNBC that my oncologist is running. i was having great results with Carbo, Gemzar and Avastin until my platelets tanked in Mid Jan. I spoke with him and after he answered my questions had me meet with the the nurses on the team about the trial at length before I agreed.

      If you do not feel comfortable, which sounds like the case, do not do it. Seek a 2nd opinion. Which I feel everyone should do even if they love love love their team, an extra pair of eyes is always helpful, even if it's only to give a seal of approval on your current treatment plan.

      Questions you will want answered 1) who is sponsoring the trial 2)will you be treated with the drug in question - there are several types of trails - some our what they call blind trials, where you may get the drug being tested, or a placebo or standard treatment. 3)why do they think you are a good candidate for the trial.

      In my case the Hospital I am being treated at is running sponsoring the trial, my oncologist is also a researcher and is in the lab 3 days a week, it is his research that led to the trial being set up. This is not a blind test, I will be getting the medications we talked about. One of the reasons they want me on the trial, and I agreed, is the medications have minimal impact on my bone marrow, which really needs time to heal. Lab tests among them using the medications on a samples of TNBC (including some from my pathology slides) have shown great promise in causing the cancer cells to self destruct.

      over 3 years ago
    • Ydnar2xer's Avatar

      I was asked to be in a clinical trial; in fact, my breast surgeon was a little persistent about trying to get me to agree to go through radiation a second time (the trial). I, however, have always heard you can only go through radiation ONCE--plus, I hadn't even tried the first treatment of this breast cancer yet. I fairly quickly decided NO--I didn't think it would work and I wasn't at a desperate stage yet--I wanted to do the tried & true treatment first. When he heard my decision, my onc was delighted and told me he thought I'd made the right choice.

      Does this mean I'll never do a clinical trial? No. It depends on what stage my cancer is and what, exactly the trial is.

      Good luck with your decision. I know a stage 4 breast cancer survivor who has lived years because of her participation in a clinical trial.

      over 3 years ago
    • Clyde's Avatar

      If you can, get the name of the trial and do some research on it, get a second opinion (this you have to do) ask the Dr why he wants you to do it and then decide. I'm always cautious when being pushed towards a trial as sometimes the center or Dr may be being paid to get patients into one (Doesn't mean its a bad trial, but doesn't always mean its the best thing for you.).

      My onc was pushing me to get into a trial, but after research (including here) I found it had mixed to poor results to date and I declined. 6 months later, the posted results have not shown any improvement and even my onc has admitted it isn't the holy grail they had hoped.

      over 3 years ago
    • Berley's Avatar

      I was diagnosed with TNBC and was part of a clinical trial. I reviewed the information on the trial before making my decision to join. I was told I could drop out of the trial at anytime and that I would recieve standard Chemo treatment if I decided to drop. I chose to stay in the trial for the duration. I felt like there was great attention to detail and the qualty of care given due to the documentation needed for the trial. There was strict protocal that had to be followed and documented. I made the right choice for me. And as others have said it felt like I was also contributing something that might be of help for others in the future. For sure ask for and review the trial information. And as said by others, it doesn't hurt to ask second opinion if you still aren't sure.

      over 3 years ago
    • SusanK's Avatar

      Hi. I was diagnosed with TNBC, Stage I and I am 61. I am nearly a year post treatment (bi-lateral mastectomy and six doses of taxotere and cytoxan). Feel free to request my email address if you'd like. I was not asked to particpate in a clinical trial, although I inquired about doing so. My oncologist suggested waiting to see how my chemo went. I was going through reconstruction at the same time and I think he felt for the time-being, I had enough on my plate. I followed his advice. I wish you well as you move forward, whatever you decide.

      over 3 years ago

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