Update on Gary and Thank You - 1245688

anita l
Posts:5

I have been following the thread of Feisty D on two different anti-PD-1 clinical trials in LA, as our next step is to try to get Gary into one of them. Unfortunately the latest MRI and CT scan showed that the Gemzar and Taxotere were not helping and that the spindle-cell cancer was growing in his left lung and in his lower spine. (He had a spinal operation on T1-T4 in early May.) The somewhat good news was that he had no brain mets and that Gary is "healthy"--heart, organs, etc. are all good. The tumors in the right lung have actually shrunk. Our oncologist who we think is terrific is recommending radiation for the spine, stopping the chemo and trying to get into a clinical trial for the anti-PD1 immunotherapy. We tried UCLA and they are checking if there are openings and we have an appointment with the Angeles Clinic. I feel completely inadequate navigating the clinical trial world. Are there questions we should be asking about this anti-PD1 trial? Feisty D--any news from your experience? I learned about the Angeles Clinic from Cancer Grace and I am so grateful for this space. Thank you to the doctors, moderators, and caring community.

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Reply # - July 22, 2012, 07:29 PM

Dr West
Posts: 4735

Anita,

I'm sorry you and Gary are now in the position of needing to shop for new options. Every trial is different, but they will go over the practical aspects and risks and benefits in great detail. You probably will have questions as the discussion continues, and you should be encouraged to ask them very freely, but it's hard to predict what they might be -- there isn't any one key question. I think the key question is whether everyone will get treated on the investigational treatment or whether only a fraction of participants will receive it.

Good luck.

-Dr. West

Reply # - July 23, 2012, 01:44 AM

certain spring
Posts: 762

Hallo Anita. I am sorry to hear of the news from the scans, but glad to hear you have confidence in your oncologist - that's invaluable - and that your husband is otherwise well.
I thought it might be helpful to link to an earlier discussion about PD-1 trials, which you have probably seen already:
http://cancergrace.org/lung/topic/pd-1-clinical-studies-bms-vs-mk/
and to the recent webinar by Dr Julie Brahmer (pp 3-4 of the transcript):
http://cancergrace.org/lung/files/2012/06/Brahmer-Immunotherapies-for-L…
A useful website is www.clinicaltrials.gov.
However, please don't feel you have to read everything or know everything. That is the job of the doctors you'll be seeing. It is easy to get overwhelmed by this stuff, and feel that one has to become a research scientist overnight. As a patient, I'd want to ask Dr West's question, ie will Gary get the trial drug? and if not, will he get something else that could help?
But I'd also want to know about side-effects, in as much detail as they can tell you, and about how the drug is administered (a pill or an infusion?) Also how often they will want to scan/take blood, as this can take up a significant amount of time if you have a long way to travel. I am sure others will have useful advice, but please don't feel inadequate as it sounds to me as if you are doing your very best for your husband.

Reply # - July 23, 2012, 06:27 PM

laya d.
Posts: 714

HI Anita:

Thanks so very much for the update. I looked for you and Gary last Wed. when we were at the COH, but did not see you. We were there basically all day! Anyway, I'm sorry that some of gary's disease is progressing. . .But glad that there is a tentative plan in place. Good luck with finding a trial. . .and please keep in touch. . .

Laya

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