Clinical Trials - GRACE wants to hear from you! - 1294184

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dbrock
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Clinical Trials - GRACE wants to hear from you! - 1294184

Hello GRACE Community!
We would like some feedback. On our new site - hopefully launched as soon as we can secure the funding to get us up and running, we will have information that leads you to available clinical trials. We would like to know more about how research/clinical trials impact our community.

We would love to hear from you ..
~how important is info about clinical trials for you?
~do you find it hard to find info about clinical trials?
~do you shy away from clinical trials? or would you welcome more options and information?
~does your doctor share information about clinical trials?
~have you been involved in one or more clinical trials? was it a positive experience?
~what is the biggest hurdle when it comes to clinical trials?
~Is the information regarding clinical trials easy to understand - or do you feel lost in a sea of technical info when you try to find out more?

and any other info that you would like to share! please do so here. We want to hear from you!

Thanks all! We hope to hear from you.

Denise

scohn
Hi Denise!

Hi Denise!

My wife has been involved in one clinical trial - a very positive experience, but it did have its issues, so here are my thoughts:

- There are huge numbers of clinical trials out there. While the clinical trial search sites are useful, it is often difficult to sort through them unless you know exactly what you are looking for. I have found them really useful for finding all the details of a particular trial, but I have actually found more general searches to be often more useful in the initial search. In our case, my wife's oncologist actually mentioned this trial (that I already actually knew about) that he knew was going on locally, and suggested it once the previous chemo stopped working.

- we found that one of the basic functional issues with the trials was with insurance. PPOs seem fine, but we were on an HMO, and it ended up working out fine, except we had to get permission from the HMO to have the treatments outside of their own doctors, and also had to do regular blood tests locally which had to be forwarded to the trial doctors prior to the trial treatments. And occasionally for no apparent reason we would get these bills for particular tests or copays that were supposed to be (and eventually were) covered by the trial, but it took my wife a number of calls in some cases to get it taken care of.

- As I researched trials, the problem is that there are a huge number now that are multi-drug, and that have multiple treatment arms, some of which are very general. So, while the drug may have good pre-clinical evidence (ie. animal or molecular) for effectiveness in one set of patients, they are accepting patients for conditions that have much less suggested prior evidence (i.e. more a sense of trying to see how broadly it will work). So, figuring out which trials are really the ones that are most likely to be useful for a particular condition, and which ones are more "fishing" can be tricky.

I'll send some more comments later......Thanks!

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla. 10/19 Carbo/Alimta/Keytruda. 4/20-Poziotinib

JimC
Thank you for your helpful

Thank you for your helpful input, scohn. Your first and third points highlight the advisability of enlisting the assistance of your own oncologist once you have identified a potential trial. Your doctor may be able to help narrow your search, provide insight on the previous track record of the trial drug and help determine it's appropriateness for your particular situation. In addition, if your doctor is well-connected to others in the field, he or she may be able to email other oncologists for recommendations.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

scohn
Hi Jim.

Hi Jim.
You are exactly right! As an example of that point, my wife's trial was at a research hospital where a lot of trials are being carried out. When the trial drug was no longer working for my wife, the trial nurse (who we loved - no criticism at all) suggested a few other possible trials. When I looked them up at home, I realized pretty quickly that although my wife was technically OK for them (i.e. within the criteria of the trial arms) that they didn't really seem a good match for her particular type of cancer and her previous treatments. Sure enough, when we met with the trial oncologist the next time, the doctor told us that those particular trials weren't really relevant for her.

We have discovered that good cancer care is this delicate dance between access to good facilities, access to good insurance, personal advocacy for your own treatments, and good communication with well-trained oncologists and nurses. We have been blessed to be able to have all of these. It is in the last two areas that we have found GRACE to be such a wonderful help. It is though the information and help of the GRACE doctors and staff that we were able to have the information we needed to have good conversations with the doctors, and were able to better advocate for the choices that seemed would be best.

And coming back to one of the points Denise was asking about - understandability of the information at clinical trial sites. There is a great need for good "translators" between clinical trial jargon and the patients. Since I am a cell biologist, I have been able to look over the clinical trials and distill the information down for my wife and give her the relevant points of the trial (what it is targeting, rationale for that particular treatment, any previous info on effectiveness, etc.). I think for many patients, unless they have a really good oncologist, it might be more difficult to extract the necessary bits from the pages and pages of trial information.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla. 10/19 Carbo/Alimta/Keytruda. 4/20-Poziotinib