Do Medical Oncologists tell us about clinical trials at other hospitals, or must we find them ourselves? Any specific doctors or hospitals?

[Barbara345]

It seems that they should know and tell us.... Do different hospitals or doctors have different policies/protocols on this? Doe this differ among doctors within the same hospitals? Any specific doctors or hospitals you know about the way they handle this? Thanks as always.

[Magnus1964]

That depends. I had to switch Urologists to get lnto a drug trial. It never hurts to do your own research and make some phone calls.

[Barbara345 in reply to Magnus1964]

That was my concern. I already have been doing much research on these, and will continue. It would have been a huge help if the oncologist, already familiar her/his patients journey so far, could help point us. It seems like some hospitals may see others as competition, which is not to the patient's advantage...... looking at "ads" from hospitals certainly points to that.

[Magnus1964 in reply to Barbara345]

Depending on where you are you might start by finding out if any physicians at the hospital you deal with handles drug or other trials for prostate cancer.TThat is how I started. Go to support groups and ask questions. Others are always willing to help.

[Loves2golf in reply to Barbara345]

When my husband's PSA started to rise after being on zytiga for less than a year, his MO wanted us to go to Dana Farber in Boston to get their opinion on our next course of action and to see if there were any trials he could participate in. He set up everything for us. My husband is currently participating in a trial.

[Barbara345 in reply to Loves2golf]

Thank you so much. There are no trials for him where he lives. We are looking right now to see what else there is...... Are you in the Massachusetts area? His MO wants us to look for other trials but doesn't seem to know where they are. MSK said that (at the time) they had no trials for him there but didn't mention neighboring hospitals. May I ask what trial he is currently on? It matters to me to be in touch with other caregivers as well.

[Loves2golf in reply to Barbara345]

We live in Sourthern NH, about an hour ride to Boston. The trial he is on is Ovansertib. It is the addition of 4 pills added to his Zytiga for 5 days, and then 14 days off before the next cycle. I know if you go on the Dana Farber site, they have a place that lists all trials currently active and inactive for every type of cancer.

[Hope59 in reply to Loves2golf]

Hi,

Is your husband doing better on the trial?

[Loves2golf in reply to Hope59]

His bloodwork is looking better, but his PSA only declines after taking the new drug for 5 days. When he stops the drug for 14 days, it rises again to a higher high. I'm fearful we are losing precious time by staying on the trial, but the Dr says he is not concerned with the PSA number. He said the scans are more important to him. Easy for him to say! He had bloodwork taken again today, and we will be on a conference call Thursday morning with the Doctor. Hope he can reassure me that we should stay the course!

[Hope59 in reply to Loves2golf]

I hope your appointment goes well!!

[Loves2golf in reply to Hope59]

Thanks!

[StayingOptimistic in reply to Magnus1964]

Do doctors get upset or annyoed if they knew you went to another hospital for a trial? should we tell them. I might be sensitive but my MO, I think, might have got upset when I told him I went to NIH for a trail.

[jmurgia in reply to StayingOptimistic]

The ones that get upset are the ones you want to fire. The first urologist I went to went ballistic when he found out I consulted with an RO for seeds. He called me into his office and told me I was not to see anyone else and that he had the best treatment for me. That was my last visit with him.

Joe

[Magnus1964 in reply to StayingOptimistic]

I have fired a few doctors along the way. Why should you get care if your doctor gets upset. If he/she doesn't handle trials it is your right to go where the medicine is. It's your life.

[Hidden]

You might already know, but you can search here with search terms like "Prostate Cancer" or a specific drug:

clinicaltrials.gov

[Tall_Allen]

They often will know many of them, but if you go to clinicaltrials.gov and search "prostate cancer" it will list thousands of trials. It is impossible to know all of them. MOs will know the ones they or their institution are working on, of course, and they will usually be aware of the Phase III trials and the "hot" topics. Top institutions like MSK, Dana Farber, Johns Hopkins, MD Anderson, Seattle Cancer Care Alliance, etc. are involved in many of them.

[Barbara345 in reply to Tall_Allen]

Thanks!!!!

[Hex40]

Mine has recommended me to several in the area and informed me of others in the Midwest.

[ctarleton]

To supplement what Gregg57 and Tall_Allen have mentioned about clinicaltrials.gov , here is a link from MSKCC that goes right to some of their current clinical trials for advancing Stage IV prostate cancer.

mskcc.org/cancer-care/clini...

Here is another link that mentions the other members of the Prostate Cancer Clinical Trials Consortium. Others in the USA can also go to these individual sites and use the Clinical Trials search tools there to find prostate cancer-related trials specific to their sites.

mskcc.org/cancer-care/types...

Good Luck!

Charles

[Barbara345 in reply to ctarleton]

Thank you so much!!!!

[Darryl Partner]

Here’s a link to the Malecare clinical trial search engine we provide in partnership with Antidote. antidote.me/malecare-find-a...

[monte1111 in reply to Darryl]

Did not know there were clinical trials only a few miles from me. A couple of heavy hitters in there. I actually left them my email. Very nice to know what's happening almost right down the street.

[scarlino]

The teaching and research facilities will recruit you for them; one of the advantages of using one for treatment. That said, not every facility is involved in every trial so one that might be useful may not be undergoing at your facility. Always good to do your own checking. Lots of great info here.

[j-o-h-n]

Doctors are human..... some good some bad and some evil (ex-wife case in point)....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/27/2020 4:15 PM DST