Topic: Mayo Research Study

Those of you who are going to join the Mayo Research Study, here's a few things that are not written down.

First, you need to keep opening boxes, not stop when it says Do Not Open Until Ready to Obtain Samples.  There are directions inside.  Like, you have to freeze the ice block BEFORE you have the samples taken.  Obvious, once you think about it.  If you can do it in conjunction with chemo this gives the person taking the sample a week to plan what needs to be done.  Don't spring it on him/her without prior communication.

Second, Do NOT attempt to help by taking the samples to FedEx yourself.  They won't accept blood from you - it has to be a special pickup by FedEx from the collection site.  Work this out with FedEx before the day of the samples.  Follow the directions, don't try to out think them.  I spent 40 years trying to out think the system - sometimes verbatim compliance is the only way, not matter what common sense tells you.  I thought there would only be one tube - there were five.  When you put your labels on the tubes, cover the existing tubes so clotting can be observed in the four tubes.  You need to have shipping tape for the inside and outside boxes.  Bring your own in case the collection site doesn't have any handy.

Third, keep in email contact with Mayo.  I worked with Nasra Giama.  She's great.

All that said, this is very easy, once you read the instructions and follow them.  And it's for a great cause - putting an end to CC.  As Nike says, "Just do it."

BTW, I haven't read about anyone else having issues with this.  Am I the only one with chemo brain?

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Mayo Research Study

Duke.....I have an authorization for my blood samples......but am going to have them drawn at Mayo when I go back up there again  Aug 1.  So, unless I lose my authorization in the meantime (chemo brain), I won't have to go through all the packing, ice pack, etc that you mentioned.  It would still be so worth it.....if it meant a breakthrough for this cancer. 

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

3 (edited by marions Tue, 24 Jun 2014 22:49:26)

Re: Mayo Research Study

Duke....great feedback.  Thanks much.  We might just want to add a "sticky" to his so that others can share their thoughts as well. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

Great info. Thanks

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Mayo Research Study

As much as the Mayo Research Study  does not effect me personally, every time I see a post about it my heart starts shaking.

My Mom's name is Nasra ( not her legal name but the name we all called her by since I opened my eyes to this world), I have never expected to hear this name in the United States.
My Mom was one of the most beautiful, loving, caring person you could ever meet in your life.
All the staff at the hospital used to call her " Pretty Woman".

Nasra, Mama,  I miss you so much

"For as it goes through fire, passioned with a rebirth desire; it burns to ashes, and a new life dashes; for the Phoenix shall rise"  As I am the Phoenix and i will hold your hands  ...
I will always make you proud
My Angels "SEEK"

Re: Mayo Research Study

Seek....Thanks for sharing this touching remark.  I too will now connect this name to the beautiful woman named Nasra, your Mom.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

Duke....re: FED EX:  postage is paid by Mayo?  Correct?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

Dear Seek, what a beautiful post and tribute to your Mama, Nasra. I think you will find a lot of amazing ways to know that your Mom will always be around you and this is just the beginning.
Her loving spirit will really never leave because Mother's always want to be with their children at any age. When you least expect it something will pop in to your mind or even appear tangible as her name showing up here in another post.  It is all good, her way of telling you that she is healthy, whole, happy and at Peace.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mayo Research Study

FedEx shipping is prepaid and labeled by Mayo.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Mayo Research Study

I also didn't realize that the bag had to be frozen before the blood draw--that meant a second visit to the doctor's office where I was also surprised that there were 5 vials of blood required. not just one. There was wait time for the blood to clot, as well. The local hospital would NOT draw blood for me-- I had to go to my own doctor's office. But I had no trouble at all dropping off the sample in the box Mayo provided  at the local FEDEX since postage was prepaid.

Re: Mayo Research Study

Well, I am glad I read that before I tried do it. Since Mark has a port and I don't want to go all the way to Seattle to draw it, I will be drawing it myself. I stopped at opening the first box so I will open it all the way and figure it out before I draw the blood. I did figure it was more than one vial though. Mark is part of another study....Long-Term Follow up for Childhood Cancer for his lymphoma and we do a HUGE questionnaire every 5 years and draw blood. It's about 3 or vials every time and also an inside the cheek swab for DNA.

I just need to get off my behind and do it. smile

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Mayo Research Study

Please know that we are keeping track of your comments re: participation in the research study.  Your input is of high importance to us and to the Mayo Clinic researchers. 
Thanks a bunch,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

Duke,

Andrea and I had some issues with the process as well.  First, let me say I completely agree with your point...Don't over think it!  This is where many of our problems came up as well.  Anyway, I talked with Nasra (the RN at Mayo that is supporting this process) and I think I have the correct answers to my questions.  I thought I would pass along the things that I learned that were not obvious to me at least:

Where should I get the procedure done?

We tried to get the blood drawn at Andrea's cancer center (UCSF), but we could not get them to do it.  They didn't know how to bill the procedure for insurance purposes (more on that later), and the fact that the request came from a different institution (Mayo) did not help.  With effort, we probably could have gotten this to work, but we found it easier to just use a third party lab to do the blood draw.  We used Quest Diagnostics.

Does this cost me anything?

No, but...

The easiest way to get this procedure done is to pay for it yourself, and then send the receipt to Mayo (Nasra) for reimbursement.  I think this is the way most people end up doing it.  If this is a problem, your best bet is to get the lab in contact with Nasra.  Nasra can send over an invoice that should allow the lab to bill Mayo directly.

The problem here was really one of communication.  Andrea and I didn't realize we needed to pay and then get reimbursed.  We were thus stumped when the cancer center asked us "Who is paying for this procedure?"  Our answer should have been "it is patient paid," but we didn't know that...

When should I get the procedure done?

If you live in the U.S. or Canada, you need to plan on making an appointment between Monday and Thursday.  Mayo sends you a prepaid overnight Fed Ex box to send the sample back to them.  However, because the sample needs to arrive at Mayo on a business day (Mon-Fri), it needs to be given to Fed Ex on Mon-Thurs.  If you are not in the U.S. or Canada, be sure to talk with Nasra about when you should schedule your appointment.

Do I need to do anything before I go?

Yes.  You need to find the freezer pack that is in the package.  The freezer pack is under the sample collection box (both of which are inside the return Fed Ex box)  You should bring a frozen freezer pack to your appointment (at least 4 hours in the freezer is required)

What other issues can come up?

The clinic asked us if we had an "order" for the blood draw.  It turns out there is the equivalent of an order in the sample collection box.  If you are asked, say "yes, we do have an order!"

Let the clinic know that they need to give the materials to Fed Ex.  If you try to give the box to Fed Ex yourself, Fed Ex may not take it since it contains blood.  If Fed Ex doesn't normally pick up at your clinic, you or the clinic can call them and they will make a special stop.


Those are the things that tripped us up. 

If you tried participating in the Mayo study (successfully or unsuccessfully), please please please add any other things that you found confusing or challenging to this thread.  As I understand it, the plan is to take all of this feedback and use it to improve the Mayo process.  Part of that improvement will be a guide or FAQ on this website to help patients navigate potential problems.

Thanks!

Jason

Re: Mayo Research Study

I would like to revive this important thread.  What are your experiences with receiving the kit, understanding the requirements, and how fast have you received responses to your request of wanting to participate?

Thanks a million,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

Stacie (CCF President) is at Mayo  speaking with Nasra re: some of the issues encountered with the study application and kit distribution.  Know that it is being addressed and that we are in the process of remedying some of the problems you have come across.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

I didn't have too many issues with it. Of course, I drew Mark's blood myself since it was time to flush the port anyway and we aren't seeing the Onc until September. I was glad I had read about some of the problems people were having because I hadn't look all the way into the box.
I didn't have any issues with the pickup. No one even asked what was in. I called the number and they just came to my work and picked it up.
I could see where there could be problems though if you don't understand how the lab system works with orders and billing and all that stuff.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Mayo Research Study

I received the kit for my husband. I tried having our clinic do the draw but they won't deal with the shipping portion, even though it is pre paid, pre labeled for FedEx. I then went to quest diagnostics but they won't do it without billing information.  I explained that it would be patient paid and they said no, it has to be set up for billing the mayo or insurance.

Any suggestions?

Re: Mayo Research Study

I don't have the answer perhaps someone can provide.  Don't hesitate from reaching out to Nasra:
Giama.Nasra@mayo.edu
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mayo Research Study

Yes, Nasra just responded to my email and she is going to send the billing info to give quest.