Hello! My husband will be entering this clinical trial, in the arm testing the dosing of a combination of AMG-160 and AMG-404, two targeted immunotherapies. The trial number is NCT 04631601.
A little background, my husband is 44 years old now and was diagnosed with stage 4 metastatic PC in February of 2019, at a relatively young age, considering the staging. His Gleason was 8 and PSA was 81. He had mets to the skeletal system and lungs.
Treatment history: He started off immediately on Lupron and had Docetaxel, which helped a great deal. He switched ADT to Apalutamide + Firmagon about a year in, which he’s still on now, as well as Zometa every 3 months. PSA is now at 2.1 and slightly creeping up.
We live in Jacksonville, FL but will be flying to MD Anderson Houston every 2 weeks starting in May for treatments. The first 3 months he will need to be hospitalized for monitoring. Tips on navigating Houston (places to stay, cost-friendly resources) would be helpful as well.
We’re still trying to wrap our minds around everything. Our son is 9 now, and this is a lot for our little family. Any insights will be helpful.
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Indigo33
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I don’t know but we can ask his oncologist next visit. He just had a lot of tests done when we first visited Houston. They didn’t mention anything to us about PSMA.
I receive Lupron injections every three months and have for over a year. I'm 75. I also take Zytega, and an herbal product called BIRM. My PSA is a trace amount. All labs look good. No side effects EXCEPT, loss of libido, and for someone so young that's a pretty serious side effect. For me, no big deal. Good luck.
Glad to hear your PSA is in the trace amount area, sounds like your disease is well-managed! Will look into the BIRM. Loss of libido is certainly a side effect but we are both taking it in stride. He’s an amazing man, and our love has only grown through this journey.
This link at MD Anderson has some potentially helpful info about Lodging and Patient Travel Services. The larger Patients part of the website has other useful info, too.
I have been doing this for 7 years... looking for the best treatment that will give me time. When I was diagnosed MD was our first stop. I have 3 kids and a loving wife. Sometimes I forget I am the one sick and have to remember that it is more hard on them than me. During these 7 years I have lost friends and family that weren't sick and I truge on. Enjoy the days, weeks, and years ahead. Don't be sick live, love, and laugh ! My best to you and your family! If you need any more travel tips just ask!
I participated in a trial at MD. I found earlier to fly into Houston Hobby rent a car and head to the hotel as there are several close to the hospitals. We also drove and made sure New Orleans was our halfway point. I would urge you to enjoy Houston. The zoo is nice and they have some free museums. Also you are no to far from Galveston and NASA. Our family has tried to make the best of our treatment trips. Hotels around the Galleria are also nice and the mall is good to walk around in the summer heat. Good Luck to you!
Just back from Houston and MDA. I am not in your study. World Class Facility and Physicians. A little bit of high volume and rigid protocols always at each station. Live in St Pete. Flew TPA into IAH. USE MDA Travel arm. Its great. They saved me 40% on airfare and about 30% on Hotel. I stayed at Wyndham which includes breakfast Mon-Fri. Has refrig, micro, 2 burner stove in room. $129/nt. Right next to Intercontinental which is more upscale w no breakfast. I heard a couple in line at front desk asking about month long stays and they were quoting $85/nt for a Suite with No tax charged for month or longer.
I UBERED from IAH about $42., then walked to 4 different buildings at MDA. Its (Wyndham) located right in the Hospital corridor outskirt so MDA is close. Its crazy as there is about 3 sq miles of Hospitals and Research all within walking. Rice University is right there with beautiful campus, great neighborhoods and homes and Rice Village for hip restaurants and shops. Btw: the food at MDA is surprisingly good and affordable. Fresh Sushi in a Hospital? Many Vegan dishes. Surprising. A car is a hassle. Better to Walk. The Hotels also run shuttles 1x p/ hr. Oh my goodness, beautiful family. We send Blessings for a great outcome, and a trial that really helps you. ❤️Mike K(Spyder).
First, all the best and healing energy possible to your family. My husband just finished his first treatment of a trial for AMG 160 at IU Simon Cancer in Indianapolis. First two days were rough but it got better. He is just so tired.
I was wondering what AMG 404 is - I’m pretty sure my hubs is getting 160. Whats the difference.,.
I see this was two months ago that you commented. I’m so sorry- time has been flying by!
My husband was supposed to receive a combination of both AMG-404 and AMG-160 but at the last minute was randomized into another arm of the trial, in which he only received the 404. That medication has been easily tolerated but his cancer quickly progressed so they didn’t give him his second dose and are getting him back into the dual therapy arm.
So he’s now scheduled to receive both medications again in a couple weeks. The AMG-404 is another immunotherapy drug. Preliminary studies and theory is that the two can work synergistically to create some dramatic effects when used together. But we have been told the AMG-160 is definitely much harder with side effects and requires hospitalization and constant monitoring.
Sounds like we are in a different arm of the same trial! How is your husband holding up?
Hi Indigo33,Hope my suggestions for navigating around MD Anderson, and the Rice Univ area were helpful? Above.
I read a recent update above about randomized AMG-404 only. Have you now started the AMG-160 + AMG-404?
Any other protocols? It has been 4 months since your post. No surgery-correct?
I just changed from Firmagon-monthly inject to stomach, to Lupron-3 month inject to butt. So much easier and convenient. Still on Zytiga + 10mg Prednisone (now 7.5).
But that is it. No Surgery, No Radiation, No Docetaxel, No Provenge, No LU-177. PSA down to only 2.26. Told to take the summer off. See me in 4 months. Strange dream vs reality of everyone’s active battle.
Hope your family is coping well. Any updates are always appreciated.
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