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Clinical Trials Considering or participating in research studies

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  #1  
Old Sun Jul 31, 2011, 02:53 PM
Al's Wife Al's Wife is offline
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Clinical Trials at NIH - Question about lodging

We are considering a clinical trial at either NIH in Bethesda, MD or M. D. Anderson in Houston.
Has anyone been to NIH in Bethesda, Maryland; and, if so, did you find reasonable lodging? I've looked on the Internet, but everything is so expensive, or in a bad neighborhood.
Any suggestions would be appreciated.
Thanks!
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #2  
Old Sun Jul 31, 2011, 10:42 PM
Alice P Alice P is offline
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Accommodations Near NIH

My husband was in a clinical trial at NIH in March and April of this year. As a member of the HiltonHonors loyalty program, I stayed most often at the Hilton Garden Inn or the Doubletree, both in downtown Bethesda (the HGI is a little nicer and better located). I also signed up for a HH American Express card, which gave me 30,000 bonus points, enough for a free night. I checked in and out of the two hotels, depending on which was the cheapest, and was able to work the program so that I earned a free night for about every 4-5 paid nights (my husband also had points, so that helped). I found that, generally, the weekends were pretty cheap ($89-$135), and the weeknights were pretty expensive (often $250+), so I always used the points for a weeknight stay. The farther away from NIH you go, the cheaper rooms get, but I liked being only a few minutes away. The first four nights of the trial, I stayed in a basement apartment rented through vrbo.com (http://www.vrbo.com/228268). The owners were very nice, and it was relatively inexpensive, but I just felt more comfortable in hotels.
Good luck.
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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  #3  
Old Sun Jul 31, 2011, 11:14 PM
Greg H Greg H is offline
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Linda,

The Pooks Hill Marriott, which is the closet hotel to NIH, has a special rate for Clinical Center patients. When we first went, in October of 2010, it was $89 per night, but I think that was up to $119 by our visit in May.

It's not possible, near as I can tell, to get that discount booking the room online. I always have called the reservations 800 number and booked the room that way. I've also found that you have to be a bit persistent and use the phrase "Clinical Center Rate" rather than simply saying "NIH." Evidently they have a variety of NIH-related rates (for conferences and such), not all of which are as inexpensive as the Clinical Center patient rate. I joined the Marriott Rewards program (which is free), and I think the reservations folk are programmed to be particularly nice to folks in that program.

Over very first trip up, Pooks Hill was full, so we stayed at a Comfort Inn up in Gaithersburg (Comfort Inn Shady Grove) and took the Metro down to the Medical Center stop. The hotel was fine, but the subway's only going to be good if you're into that sort of thing and ready to do some walking.

We met a Baptist minister on the shuttle to NIH one day who said he always used Priceline and asked for three-star hotels within ten miles of NIH. He said he'd stayed in five different hotels and never paid more than $100.

There's a shuttle from Pooks Hill, but, if it's a one-day stay, you can just drive down to NIH; there's free valet parking for patients at the front entrance to the Clinical Center.

That may be more than you needed to know. But, if I can provide any additional info about the NIH experience, please ask. I've been up four or five times, and stayed for two weeks for my Campath trial. I can even clue you in to a really great, really inexpensive Greek restaurant down in Bethesda.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Mon Aug 1, 2011, 09:33 AM
Al's Wife Al's Wife is offline
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Thanks, Greg, and, Alice, for your help. If we decide on NIH your info will definitely be helpful.
Right now I think (we keep going back and forth) we have decided to go to M. D. Anderson in Houston, at least for now. It's just been a nightmare getting our insurance approval.
My husband leaves it all up to me and I'm so afraid I'll make the wrong choice. So I told him, I found these two places and gone through all the hoops to get you in, but I want you to make the decision which one to go to.
Wherever we end up, I just pray that they will find something that helps. I know I'm asking for a miracle; but, I believe in miracles!
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #5  
Old Mon Aug 1, 2011, 08:46 PM
Greg H Greg H is offline
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Hey Linda!

We'll all be rooting for you guys. What trial will Al be enrolled in, if you don't mind my asking?

Will you have a long stay?

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #6  
Old Mon Aug 1, 2011, 09:35 PM
Al's Wife Al's Wife is offline
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We're not sure yet. I'll let you know more when I've heard from M. D. Anderson with all the details. We're going with whatever they recommend. According to their website, they have a bunch of trials going on. As you know, he didn't respond to the Vidaza nor the Arry-614 trial at Emory. I was hoping we'd hear something today about our first appointment, but they said it may be up to 48 hours.
From what I've read on their website, we'll probably be there 3 to 5 days the first time. Then, hopefully, we'll be able to commute back and forth from Atlanta to Houston during the clinical trial. I'm hoping they will let him have his labs drawn here and overnighted to them. We're just getting started with them, so we'll have to play it by ear. I'll keep you posted.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #7  
Old Wed Aug 10, 2011, 08:28 PM
Al's Wife Al's Wife is offline
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Just got back from M. D. Anderson in Houston. It started out with our flight being cancelled on Sunday from Atlanta to Houston and things went south from there. I won't bore you with the details.
The news from the bone marrow done at M. D. Anderson on Monday showed disease progression with blasts now at 10%, platelets 22,000, and the doctor said we have moved to high risk. We are looking at clinical trials at M. D. Anderson (we've signed on for one, but are having second thoughts) as well as NIH. There were some things about M. D. Anderson that we just didn't feel comfortable with. I'm sure that's true at all facilities, but I was hoping for a better feeling when we left, and I just didn't get it.
Trying very hard to stay positive (but I confess that I almost collapsed when they gave us the bone marrow results - don't tell my husband, though). I feel kind of like I did when we first got the diagnosis in May of 2010 with that sick feeling that took weeks to go away.
But I'm sure after I've rested up, and had time to regroup things will look better. I was just hoping it would be years before he progressed this far. Of course he hasn't had to have any transfusions yet, so for that I am so thankful.
I'm just the caregiver. I don't know how all you guys and gals with the disease do it, but I'm proud of all of you, as I am my husband.
Pray that we will make the best decision.
Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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