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Old 01-31-2009, 07:45 PM   #1
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To put your loved one in a research study group or not?

Have any of you had any experience with your loved ones involved in an Alzheimer's study group?

Mom's neurologist has asked if she would be involved in one of his study groups. He said he is looking for someone in her stage (one foot each in 4 and 5) to see if it can stop the advancement of the disease. (don't we wish)I have respect for the doctor but want to do some research and so I come to you all first.

There are currently approximately 290 people involved. It is sponsored by Eli Lilly. They would pay all expenses for any and all tests.

It would start with blood testing on mom to first see if she is eligible. After that, an MRI. Then we go to his office where she will be given a new medicine...we won't know if it is the placebo or not...though after 6 months into the test all participants will get the real thing.

It starts with a visit every two weeks for a month or so and then every week for 6 weeks and then back to every two weeks for a while and then finally to once a month. The study is open ended. We can opt out at anytime plus if they feel she is not coping well they will stop it themselves.

Three of the visits will be long, all day events.(6 hours)
On those days they would not have us give her the new pill until we got to the office and then they would give it to her and start testing her blood throughout the day.
She would be allowed to leave the office to walk around outside while waiting....or watch a movie or play games.
( I personally think this could be the most difficult for her but she is very pliable around him...at the monent)

He was honest with me and explained that the past 7 studies have proved futile. But he holds out hope for the future. He is certain the day will come when my son will not have to worry about this diesase.. His lips to God's ear, huh?

Also, her current meds would not be stopped.

There is also a sub study he would like to have her participate in..it involves the testing of the brain through a special MRI that shows the actual damage done to her brain so far. They showed that test on that PBS special we once all talked about.

My family and I have thought about it, most think it is a waste of time and I guess the realistic part of me agrees but my brother and I seem to think alike in one way and that is what would we do if someone offered us a one last chance..would we take it...you betcha.

I honestly don't think of all the tests being done worldwide to find a cure that this test being done on my mom would be the one. The magic bullet. But, next year if she has advanced far enough to be in lock up and not knowing us would I look back and wonder. Did I do enough.

I hate to put her through it but.......

She is agreeable to anything. Mostly she thinks it would be too much driving for me. It is about a half hour away..with no traffic that is. But that is the least of my concerns.

Yeah it would be a hassle but.....

By the way, she has no idea that she has this disease...completely in denial. She thinks it is a study of people her age (85) to see why they have lived so long. Sometmes ignorance can be bliss.

So, any opinions, ideas, experience, guidance, advice?

Love, Meg

 
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Old 01-31-2009, 10:40 PM   #2
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Re: To put your loved one in a research study group or not?

If at all possible I would definitely participate. Mom has been involved in a study of follow up treatment for breast cancer and also in a fall risk study. I also had a neighbor who participated in a blood thinner/stint study. They were a little annoying because of the time involved but mom had good results from her two studies. I don't know if it was the standard trestment she received or the new stuff but whatever it is I am greatful.

But the one that still amazes me is a dear friend with lymphoma. He had been in remission twice when it came back a third time. They had done all the standard treatments possible and was still not in remission. He was planning his funeral when his doctor ask him to participate in a clinical trial. His thoughs were... what do I have to lose. That was in late 1999... and he is still in remission!!!

That one may or may not be the one that gives us hope but it may be. What they have is not very effective. So it might be worth a shot. Yes, my view on clinical trials is jaded by success. I do understand that not all trials are successful but the ones that are sure make life better for those that come after

Love, deb

 
Old 02-01-2009, 03:14 AM   #3
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Re: To put your loved one in a research study group or not?

I have mixed feelings. Of course it would be wonderful if this is the drug that really helps, and if she is in the group getting it. But all that driving, all that ''hanging around" ... all those blood tests and other tests. You should at least be compensated for the time you put into it!

Do you think your Mom can cope with these all day events? I can't imagine my Mom having been able to do so, even at the point they finally diagnosed dementia.

But you know your Mom better than anyone, so you decide.

Love,

Martha

 
Old 02-01-2009, 05:10 AM   #4
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Re: To put your loved one in a research study group or not?

Meg,
If your willing to do all of the drivng and put in the time this will involve, why not try. As long as you can get out if it turns out to be too much for your Mom. Or too much for you.

Your Mom will be somewhat of a soldier in this war we seem to be losing. My Mom isn't long on patience as she ages. She gets agitated if we wait 5 minutes past our apt. time at the Dr. LOL

If your brother and you want to do this......I think you should go for it. If it could possibly help your children, what a wonderful gift that would be.

Just my two cents Meg. I think you have to go with your gut feelings on this decision. How do you feel about it?? I think you want to try. Thats what I'm getting from your post. What can it hurt to give this a shot?

Good Luck with your decision,
Love Chris

 
Old 02-01-2009, 08:26 AM   #5
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Re: To put your loved one in a research study group or not?

meg,
i agree with chris, you sound like you want to do this. personally, i'd go for it. if even one person benefits from this in the future then it is worth it. this disease is terrifying and any and all advances that may be on the horizon come from the selfless people that endured these types of studies. your mom can always opt out if it becomes too much for her and you are willing to make the sacrafice of getting her there. thank you meg from myself and my mom...thank you

Lori

 
Old 02-01-2009, 02:58 PM   #6
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Re: To put your loved one in a research study group or not?

Hmmm......think I'm with Martha on this one.

It's interesting that the 2 of us who've answered and have/had loved ones suffering the longest both have mixed feelings! I don't think I would have wanted any of my 3 loved ones afflicted be a part of this experiment.

Knowing now what happens as each stage progresses, I cannot imagine how much this would directly affect their behavior/understanding/mobility. As this disease progresses, there is deterioration of so much more than the brain.

It's also interesting how each of us see your post Meg! As I read it thru, I thought you sounded like you needed convincing!

My daughter was in a "study group" when she developed Rheumatoid Arthritis at 7 yrs old. I very much regret putting her thru this..........Pam

 
Old 02-01-2009, 06:55 PM   #7
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Re: To put your loved one in a research study group or not?

We elected not to participate in studies involving medicine. In part, our decision was based on the fact that while the pharmaceutical company would pay for medical costs, the small print in the consent form that we were given said that our insurance would be primary. We have a lifetime limit on coverage through my employment, and I did not want to use or risk our family's lifetime limit.

The hospital which requested our participation could not explain to me why the pharmaceutical company did not obtain coverage for medical costs arising from the test-drug, which would have seemed to make sense since they were representing that the risk of serious side-effects was minimal.

Last edited by Beginning; 02-01-2009 at 06:56 PM.

 
Old 02-02-2009, 05:31 AM   #8
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Re: To put your loved one in a research study group or not?

Hmmm.............After reading more posts I'm starting to rethink my first one. I never considered side effects if your Mom is receiving the new drug. If there is a side effect of a drug my Mom will have one for sure. She always does. Then another pill has to be given to ease that side effect and on and on it goes.

In the end Meg just go with your gut feelings. You know your Mom better than anyone. One good thing about clinical trials, you can opt out if its not going well for Mom. I wish you luck with your decision. Let us know. It is funny how each of us read your post and thought differently about which way you were leaning.

Love Chris

 
Old 02-02-2009, 11:18 AM   #9
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Re: To put your loved one in a research study group or not?

Personally,

If I could help with this disease, I would. My mother would have volunteered also. My dad was in a colon cancer study for the University of Minn. for years so I know that he would have done so alos.

My concern would be that there would be coverage for you mother in case she had a reaction to the drug. Would Eli cover any medical bills that she might have as a result of the meds that she would be given? If they will offer coverage for that, then go for it.

We know that your mother's prognosis is going to go down. We know that this is a killer disease. Let's hope that pehaps this might bring us one step closer to finding that cure.

What if we all said, no, I don't think we can help. Where would research be?

 
Old 02-02-2009, 12:07 PM   #10
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Hi to all..

I have been reading and thinking...
and you are all right about what my original post says about how I feel...conflicted is how I feel...I think it is something we should do but I wonder if it is something we should do.

If I have to answer right now, right this minute, I would say yes.
I have to know that I did all I could do for her. It's what she would do for me.

I will call the doctor's office and get answers..like the ones raised about insurance. Also about if I will be with her all times...that is a must.

Luckily, so far, she hasn't had any adverse reactions to any drugs.

I am not a quick mover on large decisions so it could be a few more weeks.

The replies from all of you was exactly what I wanted..your experience, your insights and your thoughts.

When the final decision is made I will let you all know and then the steps that are taken along the way.

The cure will come some day..who knows..maybe this time.

Love, Meg

Last edited by moderator2; 02-02-2009 at 12:13 PM.

 
Old 02-03-2009, 05:59 AM   #11
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Re: To put your loved one in a research study group or not?

Meg,

You are doing exactly the right thing. Taking your time and checking the options and considering the choices. It is yours to make-because she is your mother and you alone know her best. You are wise in your ways.

No matter what you decide, it will be what is best for your mother. So no regrets, 'K?

Last edited by ibake&pray; 02-03-2009 at 06:00 AM. Reason: i STILL can't spell in the morning!

 
Old 02-03-2009, 04:28 PM   #12
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Re: To put your loved one in a research study group or not?

Follow your heart and your gut feelings Meg. Check it out and you will make the best decision for you and your Mom... whatever that decision may be. Know we are behind you all the way

Love, deb

 
Old 02-03-2009, 07:28 PM   #13
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Re: To put your loved one in a research study group or not?

You are all gems. Each and every one of you.

I'm blessed to have you,
Meg

 
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