Donna-
I hope your DH qualifies for EMBARK-

if the scans how metastases, and you want to try for NIH- you probably are already set-up for quick review at NIH-

make sure you ask for CDs of the scans up front day of the scans, they should be able to deliver them soon as radiology has filed report, if not that day- NIH will need these I expect; I also suspect all of your file prep for EMBARK will fill most of the needs for the NIH study-

I sent my materials FED-EX to NIH and got a call two days later; my screening appointment was set up for the next week; once admitted to the program, my first treatment was done as soon as it could be done (had to wait four weeks post ADT start to begin) all of this occurred within about a month.

My experience may be unique, but I found NIH to be very quick and responsive to someone like me- having metastatic Gleason 10 pathology, I was very anxious to get into aggressive therapy ASAP- and I have had outstanding care there; I feel so safe when I am there.

I know (or anticipate) how depressing a climbing PSA can be, but you say DH is not yet hormone refractory- that means there is still room to fight back with powerful tools; I would like to think there are quite a few more rounds to go for your hubby, quite a few more days where feeling well can be the focus for the day.

I know intimately how long term ADT is a depressing thought, but I am so in love with my wife, and she with me, that life-long ADT becomes acceptable, even embraceable, if it gives me more time with her. Nothing else matters so much. And surely this crisis in our lives has stripped everything else away between us, emphasizing how pleasant and special is each moment we spend together.

Your love and concern for your husband are evident in your posts. He is a lucky man in that regard. Nothing else matters.

Keep on fightin' guys. Keep on lovin'. Nothing else matters.

rf

Hi Donna-

I have said the same thing to my wife regarding ADT and chemo side effects making me feel less lovable, less confident (a tiny bit)- but she tells me in words and in her glance- these do not matter- I believe her (40 years next year)

Regarding SE from my therapy-- I am only "suffering" the SE of ADT for 5 months and the chemo (four cycles so far; skipped fifth due to dermatitis, which has improved greatly- go out next week for last vax shot and maybe a fifth and last round of chemo- then we re-stage with scans and play the waiting game).

For me the only SE of the PROSTVAC is the pain on injection on booster shots 2-5 so far- OUCH!!! like a mini-muscle spasm pain (but no spasm evident) can last for 30 min then decrease over next 24 hrs- again OUCH!

So I think PROSTVAC is often relatively SE free.

rf

since chemo was part of my trial, it was based on that; six chemo treatments, one every three weeks; I get the vax shot on tuesday, stay in a hotel, come in next day for chemo- most people can go home that day after chemo if connections are good- I have had to stay a second night because the chemo had to be diluted and given over four hours instead of one hour (I am hypersensitive to it apparently and this avoids the immediate reactions during infusion- most people seem to tolerate docetaxel better than me and don826)

rf

Hi Donna-
I re-read the criteria for the trial I am on, and if they are talking PROSTVAC with you, that seems the only one Randy would be eligible for (I could be wrong)- CLinical days are always on Tuesday for this trial- so you get there in time to get your lab draw hopefully at least 1 hour before your clinic appt. The docs see you, write orders, then you go to the day hospital and get a buzzer (like when you wait at the restaurant) and relax in one of the many waiting spaces near the unit- buzz happens, you go in and get the vax, wait 30 min, then leave; for my research group, at least 20 hrs later you then start your infusion (on Wednesday); if all goes well, it will last an hour (with an hour prep for IV and pre-medication)- they let you go soon as infusion is done- side effects from chemo won't hit for a few days usually, so you are pretty good to make it back home by plane before feeling too lousy-

the other research group in the study gets vax AFTER all chemo cycles- this about doubles the number of trips to NIH, but vax only trips can often be done in a single day (no hotel);

NIH pays all airfare and $58 day toward room and board.

I know you want to be with Randy at each step, as does my wife, but she works too and has only been out twice with me- she is coming with me next week- always better; but manageable on my own---

nice thing about this trial is that there is no placebo arm- both groups get the vax, it is simply a matter of whether one gets it with chemo or after chemo

too much info for something that may not occur yet- if mets are present on the scans, I can share more with you as you and Randy decide what to do-- and if there are mets, there is no reason to not get back onto ADT right away- it will knock the mets back for sure, so it is aggressive therapy right away; and NIH will want to see reduction in PSA as result (confirming hormone sensitivity) AND you have to be on ADT for at least for weeks before starting chemo/vax therapy in the trial-

I think the EMBARK trial is a great option too- I think Randy has two great potential therapies regardless of the scan outcome- a good place to be in this fight against PCa-

good luck!
rf

The EMBARK trial is a good one. Whichever group he gets randomized to, he gets a good treatment. If his PSADT is too fast, there will be other trials.

Here's the thread about starting hormone therapy sooner rather than later:

https://www.healingwell.com/community/default.aspx?f=35&m=3674526

Donna,
Best wishes to you and your DH. Waiting is always so much more difficult than doing. I hope you get really wonderful results and enjoy many more happily married years together. You as well RF. When I hear about couples who have stuck it out through rough patches and still appreciate and love their mate, I have nothing but admiration. I think you all are "way cool"! My DH and I have been married 21 years. Small potatoes compared to you :) Sending you prayers for many, many more.
Beth n Gary