Clinical trials: Hi, As many of you know, I am... - CLL Support

CLL Support

22,985 members39,471 posts

Clinical trials

bkoffman profile image
bkoffmanCLL CURE Hero
4 Replies

Hi,

As many of you know, I am alive today because of my entering two phase I clinical trials, one for PCI-32765 that later became known as ibrutinib and another for a CAR-T drug.

Clinical trials are always great, right?

Well Dr. Furman has a more nuanced answer to that from our interview at ASH 2018. And he is clearly putting the patient first.

No-one is saying that clinical trials are not the best source of evidence, but what questions are being answered and at what cost to patients need to be carefully considered.

See: cllsociety.org/2019/01/ash-... for the interview.

Lots more news on the website. Hard to keep up

And please don’t forget to register our upcoming educational forums in Duarte, Charlotte, Seattle, Portland and Houston in the next 60 days.

Stay strong.

We are all in this together.

Brian

Cllsociety.org

Written by
bkoffman profile image
bkoffman
CLL CURE Hero
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Smakwater profile image
Smakwater

My CLL does not fit the model for the traditional approved therapies, so in the beginning I was consumed by enumerable what ifs.

The trial that I am entered in has provided in part the evidence that substantiates hope for me, and it also made that hope financially affordable .

The outcome from clinical trials gave me greater confidence to overcome this disease than did the grasping at random possibilities. Resentment for my condition has been replaced with gratitude for the people who's efforts provide credible data. In addition, the trial allows me to focus on specific goals with measurable outcomes. I now feel more in control of my life, and I am more willing to live beyond CLL.

Faith is the substance of that which we hope for, the evidence of the things we cannot see.

Thank You for all you do Brian,

JM

Lulu11111 profile image
Lulu11111 in reply to Smakwater

Thank you for speaking about your faith in "clinical trials". I too am a believer in clinical trials because it gives the doctor's more data to see if the medicine is indeed working.

Just think, we're all in this together.

And I loved, "Faith is the substance of that which we hope for, the evidence of the things we cannot see." Thanks again, Smakwater for your words of "faith".

May we all have continued success with this new medication called Ibrutinib.

💖🙏

Smakwater profile image
Smakwater in reply to Lulu11111

Much success to you Lulu11111

DriedSeaweed profile image
DriedSeaweed

I imagine it would be really difficult to know if a clinical trial would be a good fit or not. If in a desperate situation it is hard to make a wise determination.

Other doctors may scrutinize a trial and have the understanding of why it is useful or not.

Is the problem some researchers always want to be keeping up with their fellow successful researchers or impress their institution by having something to publish? Unfortunately, they might not have a useful study...? I notice this outside of medicine.

Not what you're looking for?

You may also like...

Dr. Wierda on the Importance of Clinical Trials

I’m home from the European Hematology Association Congress in Copenhagen. I received very positive...

My 1 year CAR-T anniversary and from ASH 2018, Dr. Siddiqi on how CLL treatment has changed.

Hi March 22, 2019 was my one year anniversary of receiving my experimental CAR-T cells in Seattle....

ASH 2017: Dr. Richard Furman on the importance of MCL-1 in CLL (chronic lymphocytic leukemia)

Just watched a video on MCL-1 and thought our group might be interested (if not already aware!)....

ASH 2018: Dr. Chadi Nabhan on the Cost of Ibrutinib vs. Chemo vs Chemoimmunotherapy in CLL and on way too much chemo being used.

Hi, If you have been on our website recently you have already met Dr. Nabhan talking about patient...

Dr. Furman on the Diminishing Role of FCR

Hi, As we're getting ready to head to ASH this week, we wanted to post in response to a query that...